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Adolescents and young adults (AYAs) face poorer cancer outcomes and experiences compared with younger and older patients, and they historically have been lost between pediatric and adult models of oncology care. The Association of Cancer Care Centers (ACCC) is committed to providing up-to-date guidance on treating AYA patients with cancer to improve their outcomes. In this episode of CANCER BUZZ, a team from the University of North Carolina (UNC) AYA Oncology Program shares how it's meeting the unique needs of this patient population by providing developmentally appropriate cancer care through a multidisciplinary approach, including clinical trial access and interactive infusion space; sharing resources where AYAs need additional support; and developing education about fertility and the short- and long-term impacts of cancer. “We talk about things like sleep, mental health, diet, exercise, knowing all of those aspects of life have been impacted by cancer and its treatment, and in order to have the best quality of life and best outcomes, we need to pay attention to all of those aspects of an AYA survivors' life.” – Andrew Smitherman, MD, MS “We know that AYAs are one of the most underinsured or uninsured populations in the United States, and so that means often they are at least initially facing these diagnoses without any insurance at all to help defray the costs.” – Jacob Stein, MD, MPH “My approach [for talking about long term effects] is that patients want to be able to have the opportunity to receive information.” – Alison Manikowski, PsyD Read the full article here. Guests Andrew Smitherman, MD, MSc AYA Medical Director Pediatric Oncologist UNC Adolescent and Young Adult Cancer Program Lineberger Comprehensive Cancer CenterChapel Hill, NC Jacob Stein, MD, MPH AYA Oncology Liaison Medical Oncologist UNC Adolescent and Young Adult Cancer Program Lineberger Comprehensive Cancer CenterChapel Hill, NC Alison Manikowski, PsyDAYA Program Pediatric Psychologist UNC Adolescent and Young Adult Cancer Program Lineberger Comprehensive Cancer CenterChapel Hill, NC Resources: UNC AYA Cancer Program ACCC AYA Resources
Quran Garden - The Holy Quran Explained in Clear English (English Tafsir)
There are two Ayas in the Quran that give different rulings for the same inheritance question. Why the contradiction? Watch today's Tafsir as we resolve this issue, discover how God's divine guidelines in matters of inheritance keep things fair and compassionate within families. Sit back and listen.
Die möglichen Langzeitfolgen bei AYAs sind vielfältig: Herzprobleme, Zweittumore, Fatigue und vieles mehr. Anders als bei älteren Betroffenen, müssen AYAs viel länger mit diesen Folgen leben. Dr. Eva-Maria Tinner vom Kantonsspital Baselland in Liestal erklärt uns die möglichen Langzeitfolgen und was AYAs im Umgang mit diesen beachten sollten. Links zu den Sprechstunden: Liestal: https://www.ksbl.ch/kliniken/onkologie-haematologie/onkologie/kontakt Bern: https://tumorzentrum.insel.ch/de/unser-angebot/sprechstunden/cancer-survivor-sprechstunde Luzern: https://www.luks.ch/standorte/standort-luzern/innere-medizin/leistungsangebot-innere-medizin-luzern/childhood-cancer-survivor-nachsorgesprechstunde St. Gallen: https://www.kssg.ch/onkologie/leistungsangebot/cancer-survivorship Wir freuen uns sehr über Rückmeldungen, Ideen und Themenvorschläge für unseren Podcast. Schreib uns gerne auf Instagram (@lebenmitkrebs_ch), Facebook (@LebenmitKrebsSchweiz) oder via E-Mail auf info@lebenmitkrebs.ch. Alles Liebe Nadine & Sandra
durée : 00:18:25 - Bienvenue chez vous 2ème partie - Le Panier des Ayas à Crest, réunit 55 producteurs locaux pour offrir une gamme variée de produits frais et artisanaux. Des légumes bio aux huiles artisanales en passant par les frites maison, plongez dans l'univers du terroir en direct avec Vincent Didier et ses collègues producteurs passionnés.
Join Aya for an ayawithin frequency session—a laid-back smoke session where we'll explore the techniques she's been using to manage anxiety, the powerful process of closing circles in Ayas life, and a soothing mini meditation to wrap things up. Roll up and set an intention. Artists: Olivia Dean Joy Crooks ENNY Pip Millet Keisuke Sakai Erothyme Entheo Instagram: Personal - https://www.instagram.com/sshelbs/ Podcast - https://www.instagram.com/ayawithin/ Tiktok: https://www.tiktok.com/@soshelbs https://www.tiktok.com/@ayawithin Youtube: https://www.youtube.com/channel/UCGOD2QlFksgcrSMXBcOya0w Website: https://www.soshelbs.com Services Provided: Personal & Branding Coaching Content Creation Brand Management Workshops & Retreats
Aujourd'hui, nous allons méditer Sourate An NissaCette Sourate met à l'honneur la famille et certains aiment mettre en avant certaines Ayas pour critiquer l'Islam.Que préconise l'Islam concernant la famille ?L'homme est il supérieur à la femme en Islam ?C'est ce que je te propose de découvrir aujourd'hui !On reste connectés
ROMA (ITALPRESS) - Archiviati gli Europei di Basilea, la sciabola azzurra comincia il rush finale dei ritiri pre-olimpici dalla Valle d'Aosta. È il comune di Ayas, nella località turistica Champoluc, la sede dell'allenamento collegiale dell'arma diretta dal CT Nicola Zanotti. Il collegiale preolimpico della sciabola azzurra segna il primo atto di una partnership tra la Federazione Italiana Scherma e la Regione autonoma Valle d'Aosta. gm/gtr(Fonte video: Federscherma)
“I was in this really unique space of being 19. So I'm over the 18 cut-off of peds but diagnosed with Ewing sarcoma, but I was an adult. I was able and supposed to be making my own decisions but treated in a pediatric setting. And not everybody in that setting is expecting to talk to someone who is educated and understands what's going on,” Alec Kupelian, a cancer survivor and operations and program development specialist at Teen Cancer America in Los Angeles, CA, told Jaime Weimer, MSN, RN, AGCNS-BS, AOCNS®, manager of oncology nursing practice at ONS, during a conversation about advocacy for adolescents and young adults (AYAs) with cancer and his own cancer journey. Music Credit: “Fireflies and Stardust” by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0 Earn 0.75 contact hours of nursing continuing professional development (NCPD) by listening to the full recording and completing an evaluation at myoutcomes.ons.org by June 21, 2026. The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of NCPD by the American Nurses Credentialing Center's Commission on Accreditation. Learning outcome: Learners will report an increase in knowledge related to the experience of AYA patients with cancer. Episode Notes Complete this evaluation for free NCPD. Oncology Nursing Podcast episodes: Episode 307: AYAs With Cancer: Financial Toxicity Episode 300: AYAs With Cancer: End-of-Life Care Planning Episode 9: How to Support Adolescent and Young Adult Patients With Cancer ONS Voice articles: AYA Cancer Survivorship: Younger Survivors Face Different Challenges and Prefer More Casual Support Programs Nursing Considerations for Adolescent and Young Adult Cancer Survivorship Care Have Meaningful Conversations With Pediatric, Adolescent, and Young Adult Patients and Their Families AYA Champions Clinic Fills Gaps in Care and Addresses Unmet Needs ONS book: Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum (second edition) ONS course: Advocacy 101: Making a Difference Clinical Journal of Oncology Nursing articles: Adolescent and Young Adult Cancer Survivors: Development of an Interprofessional Survivorship Clinic Two Case Reports on Financial Toxicity and Healthcare Transitions in Adolescent and Young Adult Cancer Survivors Sexual Health: A Nursing Approach to Supporting the Needs of Young Adult Cancer Survivors Oncology Nursing Forum articles: Integrative Literature Review on Psychological Distress and Coping Strategies Among Survivors of Adolescent Cancer Physical Activity in Young Adult Cancer Survivors: A Scoping Review ONS Huddle Cards: Coping Fertility Preservation Sexuality ONS Learning Libraries: Inclusive Care Survivorship Teen Cancer America The Monthly Drip AYA Oncology Healthcare Professionals Program Advisory Group Stupid Cancer Adolescent and Young Adult Cancer Congress 988 Suicide and Crisis Lifeline Supportive Care in Cancer article: An Actionable Needs Assessment for Adolescents and Young Adults With Cancer: The AYA Needs Assessment and Service Bridge (NA-SB) To discuss the information in this episode with other oncology nurses, visit the ONS Communities. To find resources for creating an ONS Podcast Club in your chapter or nursing community, visit the ONS Podcast Library. To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org. Highlights From This Episode “I joke a lot of the times that cancer was actually one of the best years of my life, and that's not because it was good necessarily. It's because that next year, after cancer, was probably the worst year of my life, and that drop-off into that early survivorship was a really brutal experience for me, and from talking to other cancer survivors, for them as well.” TS 3:25 “I talk to a lot of clinicians and a lot of young adult cancer survivors, and the more that I hear other people's stories, the more clear it is to me that you never know who a patient is going to disclose information to. A lot of those symptoms or side effects or secondary issues that come about from cancer, which complicate every part of your life, it may not come to the [physician]. I was most comfortable with my nurses because I spent time with them.” TS 9:15 “You put your nose to the grindstone, and there's a good guy, which is you, and a bad guy, which is cancer, and you just get through it. It's very clear. And you have so much attention and dedicated support. And then when treatment's over, everybody pats your back, dusts their shoulders, and says, ‘Congrats, go get out there.' And all that structure goes away, and you are left floundering, trying to reconnect to what you were before and what life looked like. And it's not always the same. … Most AYA patients would say treatment was the easy part. And those first two years after treatment were the hardest part of cancer—that reintegrating into life, that trying to contend with what just happened when you're no longer in survival mode.” TS 26:14 “An AYA patient may have another 50 years of life after that. How does survivorship work for that? What is sexual health? Fertility? What is palliative care? … What does end-of-life care look for a patient who hasn't gotten a chance to live their whole life? It's really important stuff, and that is too much to ask any one person to figure out. And so Teen Cancer America wants to provide some of that framework.” TS 31:03 “Allowing nurses to say that, ‘There is going to be stuff that I don't know, and that isn't a failing on my part. Saying I don't know something helps my patient have more confidence in me.' I hear all the time clinicians are like, ‘I don't bring up sexual health because I don't know what to say, and I don't want them to lose confidence in me.' They don't. They don't lose confidence in you because you don't know something. You're a human, also. They lose confidence in you when you stop caring about them.” TS 43:44
Elle est la 4ème Sourate du CoranElle fait partie des longues sourates comme sourate Al Baqarah ou Ali Imrân.Elle a été révélée 1 ou 2 ans après Sourate Ali Imrân donc il y a des références à sourate Ali Imrân dans Sourate An Nissa.Je te propose de méditer certains de ses Ayas dans cet épisode.On reste connectés
“When we're talking about the role of nurses in addressing these challenges, they play a critical role because of when they actually get to see patients. And so, if we can help with early identification and assessment, really finding out, using financial screening tools to identify any patients that might be at risk, early on, of financial toxicity, that can really allow for timely interventions,” Sarah Paul, LCSW, OSW-C, senior director of social work at CancerCare in New York, NY, told Lenise Taylor, MN, RN, AOCNS®, BMTCN®, oncology clinical specialist at ONS, during a conversation about financial toxicity in adolescent and young adult (AYA) cancer survivors. Music Credit: “Fireflies and Stardust” by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0 Earn 0.75 contact hours of nursing continuing professional development (NCPD) by listening to the full recording and completing an evaluation at myoutcomes.ons.org by April 12, 2026. The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of NCPD by the American Nurses Credentialing Center's Commission on Accreditation. Learning outcome: Learners will report an increase in knowledge related to financial toxicity in the adolescent and young adult population. Episode Notes Complete this evaluation for free NCPD. Oncology Nursing Podcast episodes: Episode 300: AYAs With Cancer: End-of-Life Care Planning Episode 294: AYAs With Cancer: Clinical Trial Enrollment Barriers and Facilitators Episode 287: Tools, Techniques, and Real-World Examples for Difficult Conversations in Cancer Care Episode 276: Support Young Families During a Parent's Cancer Journey Episode 62: Financial Toxicity Legislation ONS Voice articles: AYA Cancer Survivorship: Younger Survivors Face Different Challenges and Prefer More Casual Support Programs Nursing Considerations for Adolescent and Young Adult Cancer Survivorship Care How to Support Adolescents and Young Adults With Cancer at the End of Life LGB AYA Patients With Cancer Have High Burden of Chronic Conditions in Survivorship AYA Champions Clinic Fills Gaps in Care and Addresses Unmet Needs ONS book: Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum (second edition) Clinical Journal of Oncology Nursing articles: Two Case Reports on Financial Toxicity and Healthcare Transitions in Adolescent and Young Adult Cancer Survivors Crucial Conversations: Addressing Informational Needs of Adolescents and Young Adults Diagnosed With Cancer A Nurse-Pharmacist Collaborative Approach to Reducing Financial Toxicity in Cancer Care Oncology Nursing Forum article: A Brief Screening Tool for Assessment of Financial Toxicity ONS Financial Toxicity Huddle Card ONS Nurse Navigation Learning Library Adolescent and Young Adult Cancer Awareness Week American Society of Clinical Oncology CancerCare Got Transition National Comprehensive Cancer Network Patient Advocate Foundation Triage Cancer To discuss the information in this episode with other oncology nurses, visit the ONS Communities. To find resources for creating an ONS Podcast Club in your chapter or nursing community, visit the ONS Podcast Library. To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org. Highlights From This Episode “For nurses that are caring for AYA patients, it's really important to not only be aware of financial toxicity but know how to assess for financial toxicity because of the pivotal stage that these patients are at in their life. They often don't have the financial stability or insurance coverage that adults who are maybe middle age or even in the older adult population might have.” TS 2:11 “The idea of [AYAs] not really understanding insurance coverage—I think it's really important that as a team, we simplify some of this complex information, breaking it down into more manageable steps and providing that guidance on the documents and all the information that's needed to apply [for financial assistance].” TS 8:59 “We see significant impacts in the AYA community, especially those that are in school or at the early stages of their career, because putting a job or school on hold to focus on treatment can have long-term effects. So, we see a couple of things. In education, we see academic delays; interrupting education can delay graduation or achievement of certain educational milestones, which would affect their ability to pursue higher education or even specialized training for their career. We also see, which is very difficult, loss of scholarships or financial aid. Some AYAs are starting school. It's based on a scholarship or a grant or financial aid, and they can't meet those full-time enrollment requirements or be able to maintain the GPA that they need to stay in the program. We see people losing their scholarships, and this is not their fault.” TS 10:11 “Down the road, you have this stress leading to chronic stress. We know that constant worry about finances can create a chronic stress environment. That is going to impact mental health across the board, which can lead to increased irritability, feelings of sadness, or even conflict among family members. So when we talk about managing these dynamics, we really want to focus on the importance of open communication because a lot of times we see families avoid discussing financial issues to shield each other from that additional stress.” TS 18:06 “One of the challenges that we face with this population is that we might assume that if they're not talking about it, if an AYA is not bringing up finances, that it's not an issue. And so sometimes even our own assumptions or assumptions of healthcare professionals that they don't even need to ask, ‘How are finances going? Are you working currently? Do you feel financially stable? Are you insured?' Often, maybe there's not room for those questions. Maybe the appointments are too rushed. … Healthcare professionals could maybe take a pause to evaluate their own hidden or implicit bias, reflecting on their own experience, really trying to become aware of the assumptions they might have about this population.” TS 32:46
aujourd'hui on va parler CONCENTRATIONAh encore un point qui nous fait souvent défautEntre charge mentale et toutes les idées qui nous viennent à l'esprit comme par hasard au moment où tu t'apprêtes à accomplir ta salât ou lire le Coran
As salam aleykoum mes soeursAujourd'hui, on va parler MÉTHODOLOGIE toi et moi ☺️Alors faut il avoir une méthodologie pour apprendre le Coran
“Trying to give them as much autonomy as possible is really important. I always like to ask, ‘Would you like to have a conversation? Do you think that you can handle a conversation about advance care planning?' Or ‘What you would want someone to do for you if you're not able to speak for yourself?' They may say no, you know, and we have to respect that too,” Mandi Zucker, LSW, CT, executive director of End of Life Choices New York in New York City, told Jaime Weimer, MSN, RN, AGCNS-BS, AOCNS®, manager of oncology nursing practice at ONS, during a discussion about end-of-life and advance care planning for adolescents and young adults with cancer. Music Credit: “Fireflies and Stardust” by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0 Earn 0.5 contact hours of nursing continuing professional development (NCPD) by listening to the full recording and completing an evaluation at myoutcomes.ons.org by February 23, 2026. The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of NCPD by the American Nurses Credentialing Center's Commission on Accreditation. Learning outcome: Learners will report an increase in knowledge related to advance care planning with the adolescent and young adult cancer population. Episode Notes Complete this evaluation for free NCPD. Oncology Nursing Podcast: Episode 9: How to Support Adolescent and Young Adult Patients With Cancer Episode 41: Advocating for Palliative Care and Hospice Education Episode 135: ELNEC Has Trained More Than One Million Nurses in End-of-Life Care Episode 251: Palliative Care Programs for Patients With Cancer Episode 287: Tools, Techniques, and Real-World Examples for Difficult Conversations in Cancer Care ONS book: Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum ONS courses: Facilitating Intentional Conversations—Parts 1 and 2 ONS Voice articles: How to Support Adolescents and Young Adults With Cancer at the End of Life Palliative Care Reduces Pain Trajectory in AYAs With Cancer Advance Care Planning: Nurse-Led Programs Increase Patient Conversations, Understanding, and—Ultimately—Documentation and Completion Rates Help Your Patients Prepare for the End From the Beginning ONS Huddle Cards: Palliative and Hospice Care National Hospice and Palliative Care Organization End of Life Choices New York Five Wishes Hello game The Death Deck/The EOL Deck The Conversation Project MyDirectives website and app VitalTalk website and app To discuss the information in this episode with other oncology nurses, visit the ONS Communities. To find resources for creating an ONS Podcast Club in your chapter or nursing community, visit the ONS Podcast Library. To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org. Highlights From This Episode “There's a saying in this field: It's never too early to have the conversation until it's too late. And like I said, when my children turned 18, we completed advance care plans with each of them. … Thankfully, they were, and they still are, healthy, and they didn't need an advance care plan imminently, but that's actually the perfect time to do it. So, we had this conversation when there was no emotionality really attached to it, and that's the best time.” TS 7:31 “So, trying to give them as much autonomy as possible is really important. I always like to ask, ‘Would you like to have a conversation? Do you think that you can handle a conversation about advance care planning?' Or ‘What you would want someone to do for you if you're not able to speak for yourself?' They may say no, you know, and we have to respect that too.” TS 11:28 “I like to use an acronym called WAIT, W-A-I-T—Why am I talking? And frequently, I talk because I'm nervous. I'm so anxious at such, you know? Exactly. Just because we have a little training in this doesn't make it an easy conversation to have. So I often notice that when I'm feeling anxious, I fill the room with words. So saying to yourself, ‘Wait, why am I talking?' And if you realize ‘I'm talking because I'm nervous; I'm uncomfortable with this conversation,' remind yourself to stop because a little silence is not bad. It actually gives the patient a little time to think about the question.” TS 12:25 “Some young adults are very on top of this planning. You know, I think it's slow progress, but there has been some progress in that young adults are much more comfortable than a lot of us older people in having really difficult conversations. So we're the ones that are afraid to bring it up, but some of them are much more comfortable. So we have to remember that each of these people are individuals, and they may be very on top of this kind of planning or feel more comfortable having the conversations than we are. So it's important that we follow their lead and not make assumptions that because they're young, that they haven't thought about their own death.” TS 16:44 “I think a great question to ask them is just like, ‘What is your understanding of your diagnosis and prognosis?' Because they may have heard it already. They may not have absorbed all of the information. They may not be ready to talk about it. So asking them what's their understanding—if they say, ‘I'm dying; I know that,' that makes the conversation a little bit easier, right?” TS 18:30 I actually think [it's] more important—the healthcare proxy—than the forms, because you're never going to be able to possibly come up with every single scenario that could happen. So you're not going to be able to document like, ‘If this happens, do this,' for everything—but having a healthcare proxy who you've had conversations with about what your values are, not necessarily about every scenario.” TS 25:19 “Whatever your value is, you want to be able to have that conversation with your healthcare proxy so they can speak—I'm not even going to say for you—I'm going to say as you, so they can really advocate for you as if they were you and making sure your values and wishes are respected.” TS 25:54
“AYAs are underrepresented in clinical trials and unfortunately have one of the highest rates of being uninsured of any population. So, this is really concerning for a lot of reasons and really impacts our ability to make a difference for their treatment and outcomes,” Stacy Whiteside, APRN, MS, CPNP-AC/PC, CPON®, nurse practitioner and fertility patient navigator in the Department of Hematology, Oncology, and Blood and Marrow Transplant at Nationwide Children's Hospital in Columbus, OH, told Jaime Weimer, MSN, RN, AGCNS-BS, AOCNS®, manager of oncology nursing practice at ONS, during a discussion about increasing AYA enrollment in clinical trials. Whiteside is also the nursing representative for the Children's Oncology Group (COG) AYA Committee. You can earn free NCPD contact hours after listening to this episode and completing the evaluation linked below. Music Credit: “Fireflies and Stardust” by Kevin MacLeod Licensed under Creative Commons by Attribution 3.0 Earn 0.75 contact hours of nursing continuing professional development (NCPD), which may be applied to the nursing practice, oncology nursing practice, care of the pediatric hematology and oncology patient, or pediatric hematology and oncology nursing practice ILNA categories, by listening to the full recording and completing an evaluation at myoutcomes.ons.org by January 12, 2026. The planners and faculty for this episode have no relevant financial relationships with ineligible companies to disclose. ONS is accredited as a provider of NCPD by the American Nurses Credentialing Center's Commission on Accreditation. Learning outcome: The learner will report an increase in knowledge of clinical trial treatment barriers in adolescents and young adults with cancer. Episode Notes Complete this evaluation for free NCPD. Oncology Nursing Podcast: Episode 9: How to Support Adolescent and Young Adult Patients With Cancer Episode 19: The Practical Side of Clinical Trials Episode 126: Oncology Clinical Trials and Drug Development Episode 260: Diversity in Cancer Clinical Trials Episode 276: Support Young Families During a Parent's Cancer Journey ONS Voice articles: Balance Hope and Quality of Life for Phase I Clinical Trials Help Patients Understand Biomarker Test Results and Clinical Trials Options Nursing Roles in Clinical Trials Use ClinicalTrials.gov to Find the Right Cancer Research Studies for Your Patients Clinical Journal of Oncology Nursing articles: Cancer Clinical Trials: Improving Awareness and Access for Minority and Medically Underserved Communities Community-Based Clinical Trials: The Role of Nurses in Increasing Enrollment Disparity of Equitable Representation in Cancer Clinical Trials: Nursing Perspectives Oncology Nursing Forum article: Examining Participation Disparities in Cancer Clinical Trials Perceptions of Clinical Trial Participation Among Women of Varying Health Literacy Levels Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer Clinical Trials ONS Huddle Card National Cancer Institute's (NCI's) National Clinical Trials Network National Library of Medicine: Clinical Trials NCI's Community Oncology Research Program Children's Oncology Group (COG) SWOG Cancer Research Network: Clinical Trials Journal of Clinical Oncology articles about COG and SWOG: The Children's Oncology Group (COG) Adolescent and Young Adult (AYA) Responsible Investigator Network: An Initiative for Advancing AYA Cancer Research in the National Clinical Trials Network SWOG S1826, a Randomized Study of Nivolumab-AVD Versus Brentuximab Vedotin-AVD in Advanced Stage Classic Hodgkin Lymphoma To discuss the information in this episode with other oncology nurses, visit the ONS Communities. To find resources for creating an ONS Podcast Club in your chapter or nursing community, visit the ONS Podcast Library. To provide feedback or otherwise reach ONS about the podcast, email pubONSVoice@ons.org. Highlights From Today's Episode “Of the 90,000 newly diagnosed AYA cancer patients diagnosed each year, estimates are about 3%–14% of those patients are actually enrolled on a clinical trial. We know that clinical trials are vital for studying things like disease biology, improving survival, and improving health-related quality of life outcomes for patients. And this low enrollment really limits AYAs' access to novel therapies that are coming through the pipeline and limits research to optimize their treatment protocols, specifically in this age group and can affect their overall outcomes.” TS 1:40 “You know, there's a limited availability of trials just for this age group. This age group encompasses a lot of diagnoses that just there's not a lot of patients. so things like osteosarcoma, Ewing sarcoma, some of the other rare solid tumors. We don't have open clinical trials for these disease entities, and so there's no way for AYAs to enroll. Accessibility of trials can be an issue depending on the location of where the AYAs are treated for their cancer. If they're in an adult center, they may not have access to pediatric trials they may be eligible for based on their age and the disease. And vice versa, with pediatric centers, they may not have accessibility to some adult trials that they could benefit from. Different institutions can have varying degrees of ability to actually access and enroll patients on clinical trials.” TS 2:47 “One of the benefits of the COVID pandemic has been the role of telehealth and how providers and patients can access caregivers that they may not have been able to access before because of challenges with travel and things like that. Now you can make a telehealth appointment with someone who may have information about a clinical trial and access in ways that we never had before.” TS 9:17 “And this study really was important not only from the collaborative efforts, but they really started utilizing patient-reported outcomes measures and health-related quality-of-life measures embedded within the trial itself, because we know how important hearing the patient voice is and the patient experience with how these trials affect patients. We can have the greatest trials in the world, but if it has really negative impacts on a patient's quality of life, what are we really gaining by doing that?” TS 12:57 “It really impacts patients' willingness to participate in clinical trials, understanding that we're not here to just throw things at them without a thought about what the cost is of care. We're really looking at making it tolerable and getting the best outcomes that we can. And so, patients really want to be a part of that because they want things to be better for people that come after them, and they're really invested more in the process when they are a participant and that they're a partner in the process and we're not just doing things to them.” TS 14:27 “One of the biggest things I would encourage nurses to do is become a member of your clinical trials network, whether it's the Children's Oncology Group, the Southwest Oncology Group. All of those networks have nursing members, and you get a lot of information if you're actually a member of that group. Get involved, become a member, or go through the process because it's definitely worth it. Nurses are on all clinical trials committees, so when clinical trials kind of come down the pipeline, there's a committee that helps move that forward, that helps create and implement the trial from the beginning. And nurses really have an important seat at the table with creation of clinical trials. Nurses are in the perfect position to advocate for patients and be the patient voice during the entire process.” TS 16:47 “Follow organizations on social media. Believe it or not, I learned a lot of things about clinical trials through Twitter, or X. A lot of the clinical trials networks put things out on social media about trials, about outcome, and it's a quick and easy way to flip through and just get some information that you may not see otherwise and is quicker than an Internet search.” TS 17:41 “I think there's a couple things that nurses kind of need to be aware of and thinking about AYAs. One we've alluded to a lot is that AYAs typically are in a very transitional time of life, trying to gain independence and needing support. They can have jobs, school, insurance challenges. Relationships and their peers are very important. Fertility is important. And so, there's a lot of factors that weigh in where they receive care, how they receive care, and their response to care. And so sometimes you have to dive a little bit deeper to figure out perhaps what's going on with the patient, rather than assuming that they don't come to an appointment because they don't care or they're not interested.” TS 23:38 “Taking the extra time to really go through why things are important and understand why they're not doing what they need to do and making sure there's a dialogue about why that's happening is really important. Because I think at the end of the day, most patients want their treatment to be successful. They want to kind of balance life and doing well and really will do the things that we ask. But I think the rapport and the relationship is the most important part to really getting them to do what we ask.” TS 25:43 “I think the voice of the patient is very important, and I'm thrilled that patient-reported outcomes really have become such an emphasis in clinical trials because, again, what are we doing if we're curing patients but the price of cure is too high. And I think it's important for people to understand that a caregiver's voice, while important, is not the voice of the patient.” TS 27:17 “Understand nobody knows the answer to every clinical trial question. So, it's really okay to tell a patient, ‘You know what? That's a great question, and I'm going to reach out and get that information for you. And I will circle back with you.' Patients maintain the trust that way, and they know that you're going to be honest with them and you're not going to try to make things up if you don't know the right answer. So, I think how you handle those situations, even if you don't necessarily know the answer and providing that feedback to a patient that you're going to get the answer for them, they really still maintain that trust and integrity of that relationship.” TS 32:30 “You know, it's really important to just remember every case matters. There are very few, you know, even at our institutions, when you're working on the unit and you have a full assignment of all AYA patients and it feels like AYA cancer is everywhere really across the United States and across the world, it's a very small population of cancer patients. And so, the only way we can improve outcomes is by studying the patient experience. And so, trying to get patients enrolled in clinical trials and getting them the most up-to-date, best care we can.” TS 34:52
Yo Aunteas remember some of their favorite Ask Yo Aunteas questions of 2023... with additional commentary, of course! Gay Advice, Black Advice, Relationship Advice, Friendship Advice, it doesn't matter, we had some great questions and we tried to provide as best advice possible. This is for entertainment purposes! So, get your cups ready for Minoritea Report! Time Stamps: 0:39- Best of AYAs 2023 11:45- Larsa Pippen 4x a Night 27:33- Lube 32:20- Racist Friend 44:55- Say it at Work 48:40- Bosses Husband 1:00:22- Wrap Up Follow Us- MERCH: MinoriteaReport.com Youtube: https://www.youtube.com/channel/UCo_xKK1VRhPrVMQxm1SzTCg Instagram: https://www.instagram.com/minoriteareport/ Facebook: https://www.facebook.com/MinoriTeaReport/ Twitter: https://twitter.com/MTeaReport Email Us- AYA@minoriTeaReport.com Spotify Playlist- https://open.spotify.com/playlist/0rVJtKJmesMkCgVKmJwc46?si=1455491d0a4049b5
https://www.mixcloud.com/jj-millon/breakbeat-session-72/ 01 "Babylon System" "Paul Bassrock" - 00:00 02 "Amped" "Freq Nasty" - 0:04:41 03 "Air It Out" "Neil Nessel" - 0:09:22 04 "Alliance (Acid Edit Mix)" "Stex" - 0:13:00 05 "Alarm" "NRG Breakz Various Artists feat. Under This" - 0:17:58 06 "Ardi Said" "Dj Lomo" - 0:19:47 07 "Ibiza" "Paul Bassrock" - 0:26:19 08 "Bailar" "The Ramaboy" - 0:30:01 09 "Dancefloor (Original Mix)" "Guau" - 0:33:41 10 "We Are The Greatest" "Scooter" - 0:38:04 11 "Pressure" "Firestar Soundsystem" - 0:39:07 12 "Drum Beats On My Mind (Original Mix)" "OnDaMiKe & Jamie Blue" - 0:42:10 13 "Change" "Syna vs Ayleon" - 0:44:30 14 "Break It Down!" "Huda Hudia" - 0:53:02 15 "Less Stress" "Evil Nine" - 0:55:46 16 "We Are Energy" "DJ30A, Huda Hudia" - 1:00:29 17 "Orient Sun (Breaks Mix)" "Ayas" - 1:03:47 18 "Arrivals Departures (Sultan F Break Mix)" "Skyler" - 1:09:50 19 "Pearl's Girl (Remastered)" "Underworld" - 1:15:18 20 "Come Let Me Know (feat. Rodney" "[muzmo.ru] Freq Nasty" - 1:17:04 21 "Take Me" "Corvad" - 1:23:56 22 "Arms Around (C2 Affected Rmx)" "La Fleur" - 1:25:06 23 "Amen" "PulpFusion" - 1:31:44 24 "POISON (LITTLE ORANGE UA BOOTLEG REMIX)" "BARBITURA" - 1:33:50 25 "Little Orange UA Subway Dark Breakbeat Cyberpunk EBM Industrial" - 1:36:16
John Salsman, Ph.D, Wake Forest University School of Medicine, Winston-Salem, NC Recorded on June 22, 2023 In this episode, Dr. John Salsman from Wake Forest University School of Medicine joins special staff correspondent, Elissa Baldwin, to discuss quality of life in the cancer experience of adolescents and young adults (AYAs), including unique issues that AYAs face. Dr. Salsman offers approaches to questions healthcare providers can ask when communicating with AYAs and clinical resources for physicians and survivors. Tune in today!
CW: Talk of Death & dismemberment, Body Horror sounds, mentions of violence, medial descriptions, gun violence, sudden loud noises, mild drug use, intense pain, discussion of blood, discussion of death, aggressive, repeated sounds, depictions of poverty, rail fence Twitter: https://twitter.com/roomwherepod Discord: https://discord.gg/ZjwPuRv Website: https://roomwherepod.com/ Patreon: https://roomwherepod.cash Hy tsRo ' rhesfin.Sr.Imn,Ia iisfin n eiys m ofin us?Ayas oIa ieafin fAci'.Ayas o enhm rayo hm tsbe opedy n ' ore.Lk,koigte,te o hmevsi oehn,btIhv ensaigtete n i' er ohn rmn n bu hr hyae fyu ie erfr hmltm nw k m y us. e,i' i.ImAci' red ot ea mKk' redadCcl',u,byredIges nwy,s mlk redo rhes nwy,yuse i?O n fte.I' enacul asadImwrid ie nwn hm hygttesle nsmtig u aebe hkn h readanthadntigfo ooeaotweete r.I o,lk,ha omte e eko.O,u,beIges
A variety of perspectives are explored as Dr. Westin speaks with Dr. Jennifer Mack, Dr. Chun Chao, and Mallory Casperson about end-of-life care planning in adolescent and young adult cancer. TRANSCRIPT The guest on this podcast episode has no disclosures to declare. Dr. Shannon Westin: Hello, everyone, and welcome to another episode of JCO After Hours, the podcast where we get down and dirty with manuscripts that are being published in the Journal Clinical Oncology. And I am your host, Shannon Westin, GYN Oncologist and Social Media Editor of the Journal of Clinical Oncology. I am so very excited to have a number of guests with us today to discuss a very important paper entitled “Discussions About Goals of Care and Advanced Care Planning Among Adolescents and Young Adults with Cancer Approaching the End of Life.” And I'm joined by several of the authors of this important paper. The first is Dr. Jennifer Mack. She is the Associate Chief in the Division of Population Sciences, an Associate Professor at Harvard Medical School and Senior Physician in Pediatric Hematology Oncology at the Dana-Farber Cancer Institute. Welcome, Dr. Mack. Dr. Jennifer Mack: Thank you. Dr. Shannon Westin: We also have Mallory Casperson. She is the cofounder and CEO of the Cactus Cancer Society. They provide online support programs and resources to young adult cancer survivors and caregivers in the comfort of their own homes. Welcome. Mallory Casperson: Thanks for having me. Dr. Shannon Westin: And then, finally, last but not least, Dr. Chun Chao. She is a Senior Research Scientist in the Division of Epidemiologic Research in the Department of Research and Evaluation at Kaiser Permanente Southern California. Welcome. Dr. Chun Chao: Thank you. It's a pleasure being here. Dr. Shannon Westin: So I want to get right into this. I think that there certainly has been a lot of discussion, at least at our institution as well as at the ASCO level, around advanced care planning across all patients with cancer and anyone with a diagnosis of cancer. And I would love to just start and level set and make sure all of our listeners are all on the same baseline around the incidence and prevalence of cancer in adolescents and young adults. Like, first, define what are the age groups that we're looking at here? How common is cancer in this population? Dr. Jennifer Mack: Right. For this study, we defined adolescents and young adults as individuals aged 12 to 39. And right now, about 90,000 adolescents and young adults are diagnosed with cancer in the United States each year. Those numbers are also rising, so more and more are diagnosed each year, and because of that, we think it's increasingly important to pay attention to the needs of this population. This population really experiences a whole range of different cancer types, some of which are more common in children, some of which are more common in adults, but the most common ones include breast and gastrointestinal cancers, sarcomas, germ cell tumors, leukemias, lymphomas, and brain tumors. Dr. Shannon Westin: And your manuscript notes that adolescents and young adults seem to receive medically intensive measures at the end of life. Now, how common is this across this group? And do you all have a sense of some of the reasons that we see this increased use of these measures? Dr. Jennifer Mack: That's a great question. We and others—actually, the early work that led to this study was done with Chun. We had previously found that most adolescents and young adults receive at least some kind of medically intensive care at the end of life. And that includes things like being hospitalized, being in the intensive care unit, receiving chemotherapy, and spending time in the emergency room near the end of life. And so, if you take all of those together, about two-thirds of adolescents and young adults receive at least one of these near the end of life. And we don't know the reasons for this. There are probably complex reasons. Some adolescents and young adults may actually want to receive these kinds of measures, maybe because they're young and they want to do everything they can to live as long as they can. And some patients in this age group are parents to young children, and they may be making choices to prolong life and be there for their kids. But we also know that if we look at older adults, most people who know they're dying don't want to receive this type of care, which is also associated with more suffering and with poorer quality of life. So it's also possible they're making these choices because they don't fully recognize they're approaching the end of life or because they haven't had opportunity to plan for this time through conversations with their medical teams. Mallory Casperson: I think the conjecture, too, that a young adult is likely to focus on extending life, even in a situation where palliation is the stated goal, is a really great conjecture. This population is really burdened by these unique psychosocial issues that are driven by the extreme disruptions that cancer has on major life milestones. Like Jenny said, they may have young children at home, they may have a new spouse at home, still be trying to advance at work, you name it. So this period of young adulthood is really characterized by constant change. And it's possible that these young adults are being driven to stay present in their lives for really as long as possible to reach some of these goals or even just to support their young families as they reach their own goals. Dr. Shannon Westin: I really appreciate that context, and I'm going to always bring it back to what I know as a provider of gynecologic cancer care, where we see quite a bit of young people at the beginning of their life, at the beginning of their fertility. And I think it is so important to keep that context in mind as we're designing interventions and studies and things like that. So I really appreciate that, having the ability to kind of see from that standpoint. So I think you guys have convinced me this is important. We know the reasons. So why don't we just lay out the objectives of this particular study and give our listeners a brief review of how it was designed? Dr. Jennifer Mack: Great. We wanted to know how often adolescent and young adult patients with incurable cancer have discussions about prognosis and end-of-life care planning before they die. And a secondary goal was to understand whether having earlier discussions would change the type of care that's delivered. So, for example, having those discussions about goals of care earlier in their illness, could that make them less likely to receive intensive measures? So, to do the study, we conducted a retrospective review of health records for nearly 2,000 adolescents and young adults who died between 2005 and 2019 after receiving care in one of three centers—the Dana-Farber Cancer Institute, Kaiser Permanente Southern California, Kaiser Permanente Northern California—and looked for documentation of discussions about care planning. For this study, we focused on patients who either had stage IV disease at diagnosis or who had experienced a recurrence because we wanted to ensure that we had a population of young people who were living with advanced disease and not people who might have died suddenly and unexpectedly during treatment, because they might not have had the same opportunity for end-of-life care planning. So we really wanted to focus on those who had the poorest prognoses. Dr. Shannon Westin: It's a really large group of people and, I think, hopefully fairly representative. I guess my question is, when you're looking at the group that you were able to kind of pull from in this retrospective database, which I think can sometimes be limited, do you feel like it was fairly representative of the population that's out kind of across the States, let's say? Dr. Chun Chao: So I think it's a real strength that we included two different care settings in this study, so a tertiary cancer center and community-based cancer care. Therefore, patients who seek care in each of these settings are representative in our study. I think this design really increased the generalizability of our findings. And on a further note, in this study, we actually observed very similar care patterns across all three study settings. So that was quite reassuring. Dr. Shannon Westin: So reassuring. And I think it brings up a point that I wanted to make, and I also agree was a strength of your study, is having that across the academic center and then a large integrated health plan. And I guess I'm just curious how your collaboration came to be to kind of come across different groups and, of course, the inclusion of Mallory from the patient advocate side. I think this is a testament to your powers of collaboration. I'd just be interested in how that kind of came to be. Dr. Chun Chao: So this goes back to almost 10 years ago. I think, at that time, people started to really recognize that adolescent and young adults with cancer were a very understudied group, but they are also very challenging to study. So, for example, AYA cancers, adolescent and young adult cancers, are fortunately not very common. Although the number is increasing, you do need a large population base to study them. So, at that time, researchers at Integrated Health Systems started to really see that we had an opportunity here to really contribute to this knowledge gap, leveraging the resources that we had at these health systems, especially the ones that have a very large membership and a long-term retention of these members and also a comprehensive electronic medical record system. At that time, my colleague and I published a study that demonstrated the feasibility of using these resources to do follow-up studies of long-term health outcomes of AYAs with cancer. And I think that we might have attracted people's attention to utilizing the resources at these health systems to do such studies. So Jenny was the one who really saw the need or the lack of data or the need of high-quality data to really improve care for our AYAs who are at that end-of-life stage. So she reached out to a research network called the Cancer Research Network, who I think that the people there connected Jenny with me because I was also starting to work on long-term health outcomes of AYA cancer survivors, adolescent and young adults. After we talked, we were like, “We have to get this funded. We have to get these questions answered. These questions are so important.” So, as Jenny mentioned, we did a pilot study that really showed there is a lot of burden of medical intensive care at the end of life for our young patients. And, as often is true with research, this opens up a lot more additional questions that we needed answers for. So we have been working together since then. Mallory Casperson: I came into this group sort of by accident. My background is in engineering. I was about halfway through a PhD when I needed to leave a couple years outside of my first cancer diagnosis. And I was at ASCO staffing a booth for my organization and just happened to meet a researcher from Kaiser Permanente Northern California, and the rest is history. That introduction sort of got me into this world, and, once you know one person, you get to meet others. And it's just been a really, really wonderful opportunity to help, I think, insert the patient voice. But also, for me, I just love research and data. And so getting to help advance the conversations happening around adolescent and young adult care in this research setting and in these settings where we are getting to look at very large datasets has just been really, really wonderful. Dr. Shannon Westin: These are my favorite parts of these podcasts, these stories of how things kind of came to be. And, at the risk of taking too much time there, I love the story, and I'm so in awe of you guys. I guess, let's get to the bottom line. What did you guys find? Did you find what you expected in regards to advanced care planning and goals of care in this population? Dr. Jennifer Mack: So we felt that most patients had documented discussions about prognosis, about goals of care, about palliative care, hospice, and their preferred location of death before they died. Dr. Shannon Westin: So I was actually kind of impressed at that. It seemed like a lot. I was expecting—I don't know what I was expecting, but I think I was expecting less documented discussions because, in my own practice, I don't necessarily think I do a great job of this. So was that in line? Were you expecting to see such kind of high levels of documentation? Dr. Jennifer Mack: I really agree with you. I was impressed with the fact that most patients had these discussions. Many of them had more than one discussion about their goals of care. So their providers were going back and having follow-up discussions, making sure that their goals of care were the same and weren't changing over time. So I agree. I was pleasantly surprised with how often these were happening. I would say I'd love to see these discussions either happening with everyone or at least offered to all patients so that they can say whether they want to have them or not. So, in this study, 17% of patients never had a discussion about goals of care. And non-white and Hispanic patients had lower rates of discussions than white patients. So there are some potentially important gaps here that need attention. But I also think you're right; there's a lot of good news here. Clinicians are making consistent efforts to talk with patients about their wishes for care, and then they're documenting them, which is an important thing because it allows those wishes to be known by everybody on the care team and helps to ensure that they're going to be carried out. Dr. Shannon Westin: I was also intrigued by the finding of the younger patients having earlier discussions around advanced care planning and hospice and goals of care. Any thoughts as to why that might be? Again, I felt like it was a little bit opposite of what I was expecting, not having a ton of background in the area. Dr. Jennifer Mack: I was surprised, too. We had to check the numbers a couple of times just to be sure because it wasn't what I was expecting. And we don't know for sure what the reason for this is, but I think one possibility is that some of these discussions with the youngest patients, or for the youngest patients, are happening with family members, maybe their parents. And it's possible that clinicians are a little more comfortable or more likely to talk with parents than with the young patients themselves. And so that could actually increase rates of discussions for that group. One thing we didn't assess was who was there for the discussions. It's not always documented. There's more to learn there about who was there and more about what was discussed. But that was our guess is that these may be family discussions more so than patient discussions. Dr. Shannon Westin: That really makes a lot of sense. And then I guess the next natural question is when we have these earlier goals-of-care discussions or when we have these discussions at all, what did you guys see on the impact of those kind of medical interventions that happened after? Dr. Jennifer Mack: Yeah. We found that when goals-of-care discussions happened earlier, more than a month before death, that adolescents and young adults were less likely to receive some of these intensive measures that we've talked about, so less likely to receive late-life chemotherapy, care in the intensive care unit and emergency room, and less likely to be hospitalized in the last month of life. So, even though these findings were observational, it creates the potential that having discussions earlier can help reduce some of these intensive measures and refocus care on palliation, if that's what patients are looking for. Dr. Shannon Westin: I think that's a really important point because we often bring our own thoughts and beliefs into the care of our patients and think, “Well, I wouldn't want those things.” And I think making sure we know where the patient is—and Mallory, I'd just be interested to get your thoughts here. How do we best approach those things and try to avoid—you know, we want to give advice where advice is needed, and we want to make it clear what the goals or what the potential successes might be. But I'd be really interested to hear your thoughts around framing those discussions and making sure that people understand what can be gained from those types of intensive treatments. Mallory Casperson: Yeah. I think it's important with patients in this situation—and it was discussed in the paper, but the idea of timing, how frequently are we having these care preference types of conversations, and how often are we reframing things with the patient based on how goals might be changing? I think that's a huge piece of the equation because, especially when we're talking about 30 days before death, 60 days before death, things might change quite rapidly from week to week and so having some of those things in mind. And then it wasn't discussed as much on this paper, but it definitely has been in other work by both of these authors, as well as other just end-of-life research, but this idea of who is in the room for these conversations, I think, is another really important piece of this. Because a caregiver might have different preferences and goals than a patient. If a patient is 15 versus a patient is 25 versus a patient is 39 is also going to change things, and it's going to change the perspective that their caregivers bring to the equation. And so I think who is in the room and how are we doing that very difficult thing of weighing people's opinions in the situation, I think, is very complicated and also very important to figure out. Dr. Shannon Westin: And I think that that leads to my next question: How do we get more of that information? What do you think are the next steps for this particular work? And also, I would just say, how do we guide that? I mean, I struggle with these conversations. It doesn't matter if my patient is 22 or 82. I think trying to meet people where they are is one of the critical pieces. So what's next for this work? How do we help inform these discussions for the caregivers and for their providers? Dr. Jennifer Mack: I think you're right that we do think an important next step is promoting earlier discussions about goals of care and advanced care planning, partly because it gives patients time to reflect on what's important to them, to digest the news, and then make thoughtful decisions that are best for them. But from a research perspective, I think, as we do that, we need to understand more deeply what adolescents and young adults want from these conversations. What topics should be addressed, with whom, and how should they be discussed? And we've also learned from other work, including work that the three of us have done together, that goals of care for adolescents and young adults aren't always as simple as wanting care focused on palliation or prolonging life, this kind of binary thing. Often, there are these other equally important goals, like making sure their loved ones are okay, what's going to help them the most, having opportunities to nurture and deepen their relationships, and finding ways to attain their life goals and meaning while they're living with advanced disease. So all of these different aspects, which aren't always a typical part of goals-of-care conversations, could be integrated to help support the kind of wider goals that are held by adolescents and young adults with cancer. Mallory Casperson: I think, too, adding to that, we've talked about how AYA patients' goals of care have changed over time. So I think timing is a thing that could be added into future work, which is a difficult thing, I think, to gather from some of these records sometimes. But also, I think thinking through what these different words mean to different populations and how we're defining them is really important, too. So just an example outside of end-of-life care: When you tell a 30-year-old who's going through cancer that exercise is important during treatment and you talk to a 70-year-old going through cancer that exercise is different, that means different things, and they themselves have different context around what that word means in their normal life. And so I think when we throw out words like “palliation,” “palliative care,” and just general end-of-life conversations, that the same context applies. When an AYA agrees that maybe palliative care is the goal, what does that mean to them, and what are they bringing to the conversation in terms of their younger perspective than an older population that we're potentially more used to working with? So I think framing these ideas and how they might differ between populations is another thing that would serve as future work in this AYA end-of-life care space. Dr. Shannon Westin: Great. Well, thank you all so much. The time just flew by. This was such a great discussion of an incredible topic, and I just want to thank you all again for your hard work in this space. And thank you to all of our listeners. Again, we were discussing the manuscript “Discussions About Goals of Care and Advanced Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life.” And this is published in the JCO, so go check it out. And please do go check out our other podcast offerings and tell us what you think on Twitter. We'll see you next time. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
"Üsküdar´a giderken", "Burçak tarlalari", "Karadir kara", "Emmoiglu", "Zeytinyagli", "Lorke" y "Ayas", extraídas del álbum "Gençlik Ile Elele" (1973; Reedición de Finders Keepers, 2006) de Mustafa Özkent Ve Orkestrasi"Sir", "Hele yar", "Inat", "Karli daglar" y "Türkü", extraídas del álbum "Electronic Turkuler" (Dogan, 1974; reedición del sello español Pharaway Sounds) de Erkin KorayEscuchar audio
Hi again, tale-listeners! How's your weekend di akhir bulan Juni ini? Udah siap menyambut hari Senin? Nah, buat menemani penghujung weekend tale-listeners, kali ini Tika dan Ika akan ngobrolin soal work-life balance. Sebenernya realitanya, work-life balance ini betul-betul bisa tercapai nggak sih? Atau sekarang ada istilah baru lagi yang namanya work-life integration, bedanya apa sih? Yuk, sesama kaum pejuang eight to five yang ngerasa bisa relate, mari kita berkumpul buat dengerin sharing dari tale-tellers episode ini yang pastinya spesial, yaitu Said (@dsayyidm) dan Ayas (@farraas). Kenapa spesial? Karena keduanya cerita pengalaman masing-masing yang menghadirkan dua perspektif berbeda walaupun keduanya juga punya many things in common. Said yang adalah corporate worker dan juga seorang ayah, berkolaborasi untuk sharing bareng Ayas yang adalah psikolog, entrepreneur, content creator, sekaligus seorang ibu (iya, banyak memang roles-nya, hehe). Kebayang dong seberapa banyak insight yang akan bisa kita dengerin di episode ini? So, langsung aja klik tombol play-nya ya! Selamat mengeksplorasi 'balance' versimu sendiri! :) -- Music provided by Spotify
In Episode 45 of Bladder Cancer Matters, host Rick Bangs talks with a very special guest, Kristen. She was diagnosed with bladder cancer at 22 years of age (the average age at diagnosis is 73). She had to fight for a correct diagnosis, including when one of her doctors told her that she was just “getting fat.” Kristen S. Rick and and Kristen chat about her journey and how she struggled to get her doctors to take her seriously. They talk about: Her symptoms and how she bounced around between doctors before she finally got her diagnosis How a urologist told her in passing that she had bladder cancer (and then left the room) How she decided to talk with others about her bladder cancer – who to tell and when The role that her mom (a nurse) played in Kristen's journey The crippling financial impact of bladder cancer on AYAs – adolescent and young adults The advice that she would give to someone else who is young and receives a bladder cancer diagnosis Never miss an episode of Bladder Cancer Matters by subscribing in your favorite podcasting platform
On episode 12 of A Chat with Uma, inspired by my upcoming 4-year cancerversary and all that comes up this time of year - I share my full story + experience of my mental health struggles due to/influenced by my cancer. I discuss the research, conceptualization, and understanding of adverse mental health outcomes for patients with cancer & other life-threatening illnesses - particularly AYAs (adolescent + young adult patients, 15-39). I speak at length about my own experience living with cancer and mental health struggles, candidly sharing the concrete examples of how my OCD, anxiety, PTSD, depression, and more intersect with + are exacerbated by my cancer diagnosis. I dispel myths about "cancer victimhood," explaining the reality of cancer survivorship in tangible + accessible terms. I close with reflections about my cancer + mental health experience & my upcoming cancerversary, and provide a call to action + empowerment about sharing our true experiences in community with others - and allowing ourselves the chance to be truly seen + supported. Topics Covered + Timestamps: (00:00:00): Introduction to the episode, why I'm doing this episode, my upcoming 4-year cancerversary (00:06:09): Breaking Convention Presentation April 20-22 | University of Exeter Register to attend HERE (in person or virtual) (00:08:36): Digital CancerCon Presentation April 16-30, virtual platform Register HERE for free (00:09:59): The full reality of facing one's mortality & living with cancer Living with chronic illness vs. cancer/life-threatening illnesses The general timeline of processing a cancer diagnosis The lack of transition from fight/reactive mode to resting + processing The implications of chronic survival mode Significantly worsened mental health outcomes for cancer survivors (particularly AYAs) The realities of cancer survivorship & facing one's mortality The resulting isolation & misunderstanding of mental health + survivorship Invalidation of the mental health repercussions in survivorship SCANXIETY (00:28:55): My own mental health & cancer experience How my obsessive-compulsive disorder (OCD) latched onto cancer Health anxiety vs. health anxiety OCD, my experience of both Post-traumatic stress disorder (PTSD) exacerbated by my cancer Depression exacerbated by my cancer The implications of my chronic/metastatic cancer on my mental health The truth of facing my mortality from cancer How scanxiety shows up for me (00:45:05): Mental illness/dysfunction is NOT a choice Growing around cancer versus trying to erase/deny cancer The misperception of mental health challenges during cancer survivorship How to support cancer survivors in their mental health The power of support and validation in survivorship How to shift from toxic positivity, toxic gratitude, and spiritual bypassing Dismantling misperceptions of "victimhood," empowerment to take up space (00:55:00): My own reflections, my cancerversary, the duality of life & death around my cancerversary, closing the episode Connect with me! My website: umarchatterjee.com Instagram: @UmaRChatterjee Twitter: @UmaRChatterjee TikTok: @UmaRChatterjee Email: hello@umarchatterjee.com --- Send in a voice message: https://podcasters.spotify.com/pod/show/umarchatterjee/message
On episode 11 of A Chat with Uma, inspired by my upcoming 4-year cancerversary and all that comes up this time of year - I share my full story + experience of living with cancer since I was 22. I talk you through the 6 months of misdiagnosis that led up to my diagnosis the day after my birthday, and I take you through the tumultuous journey of treatment that was shaped by further negligence, misdiagnosis, and mistreatment. I share the consequences of my delayed treatment on my prognosis, and I explain the reality of living with cancer rather than being in remission. I speak at length about the unique struggles of living with cancer as an AYA (adolescent + young adult patient), and I draw awareness to the experience of survivorship beyond treatment that is often completely overlooked by those in an AYA's life. I close with reflections about my experience, and a call to action + empowerment about sharing our true experiences in community with others - and allowing ourselves the chance to be truly seen + supported. Topics Covered + Timestamps: (00:00:00): Introduction to the episode, why l'm doing this episode, my upcoming 4-year cancerversary, dedication of this episode (00:09:44): Aspiring Scientists Coalition Presentation with Dr. Ben Rein THIS Thursday April 13, 9am PDT / 12pm EDT Sign up for free HERE (00:14:00): Breaking Convention Presentation April 20-22 | University of Exeter Register to attend HERE (in person or virtual) (00:17:05): Digital CancerCon Presentation April 16-30, virtual platform Register HERE for free (00:19:58): Diagnosis & surgery Events leading up to my diagnosis 6 months of misdiagnosis Being diagnosed the day after my birthday The role of my young age Going through cancer surgery Consequences and effects (00:42:56): Negligence, radiation, metastasis Medical negligence after surgery Transitioning my care Highest risk of recurrence Radiation Discovery of distant spots of metastasis (01:01:20): What my cancer looks like now Current level of monitoring "Cancer suppressed" vs. in remission The role of my young age (01:07:31): The AYA cancer experience What AYA is: adolescent + young adult patients The worsened outcomes + prognoses for AYAs AYA awareness and self-advocacy (01:14:42): The reality of facing your mortality Isolation, fear, scanxiety Worsened mental health outcomes Toxic positivity and gratitude How to adequately support AYAs (01:19:27): Closing out the episode, integrating and allowing all parts of you to exist Connect with me! My website: umarchatterjee.com Instagram: @UmaRChatterjee Twitter: @UmaRChatterjee TikTok: @UmaRChatterjee Email: hello@umarchatterjee.com --- Send in a voice message: https://podcasters.spotify.com/pod/show/umarchatterjee/message
#106: Host Chris Hutchins shares top hacks from listeners, thoughts on the SVB collapse, some great deals to take advantage of now, tactics for investing in treasury bills, ways to get deals on concert/theatre tickets, how he's investing and a lot more. This episode is packed with so many great tips, hacks and deals! Full show notes at: https://www.allthehacks.com/listener-questions-8/ Partner Deals Vuori: 20% off the most comfortable performance apparel I've ever worn DeleteMe: 20% off removing your personal info from the web Rocket Money: Easily cancel your unused subscriptions Shopify: $1/month trial for the easiest e-commerce platform Wealthfront: $5,000 managed for free Selected Links From The Episode All the Hacks Membership Embrace Pet Insurance (
Expert: Giuseppe Luigi Banna, Portsmouth Hospitals University NHS Trust, Portsmouth, UK
Lauren Broschak is an oncology-certified Licensed Clinical Social Worker who joined the Life with Cancer team in May 2019. She received her Master's degree in social work from the University of Michigan, where she specialized in clinical practice and health. She provides therapeutic support, resources and education to patients and their caregivers. Lauren serves as the Co-Chair for the Association of Oncology Social Work Adolescent and Young Adult (AYA) Special Interest Group, and has spoken at national conferences regarding the impact of cancer on AYAs. She has completed training through the Enriching Communication Skills for Health Professionals in Oncofertility (ECHO) program, and is currently attending the University of Michigan's Sexual Health Certificate Program specializing in sex therapy and sexuality education. Her areas of interest include AYAs impacted by cancer, illness' effect on sexuality, intimacy and fertility, couples and cancer, dating and cancer, and caregiver support. --- What We Do at MIB Agents: PROGRAMS: ✨ End-of-Life MISSIONS ✨ Gamer Agents ✨ Agent Writers ✨ Prayer Agents ✨ Healing Hearts - Bereaved Parent Support ✨ Ambassador Agents - Peer Support ✨ Warrior Mail ✨ Young Adult Survivorship Support Group ✨ EDUCATION for physicians, researchers and families: ✨ OsteoBites, weekly webinar & podcast with thought leaders and innovators in Osteosarcoma ✨ MIB Book: Osteosarcoma: From our Families to Yours ✨ RESEARCH: Annual MIB FACTOR Research Conference ✨ Funding $100,000 annually for OS research ✨ MIB Testing & Research Directory ✨ The Osteosarcoma Project partner with Broad Institute of MIT and Harvard ... Kids are still dying with 40+ year old treatments. Help us MakeItBetter.
La sintesi della conferenza che Luca Mercalli, scienziato, climatologo, presidente della "Società meteorologica italiana" ha tenuto ad Ayas mercoledì 17 agosto sulla crisi climatica e lo scioglimento dei ghiacciai, con Guido Giardini, presidente della "Fondazione montagna sicura", direttore sanitario dell'Azienda Usl della Valle d'Aosta, specializzato in medicina di montagna.
What We Do at MIB Agents: PROGRAMS: ✨ End-of-Life MISSIONS ✨ Gamer Agents ✨ Agent Writers ✨ Prayer Agents ✨ Healing Hearts - Bereaved Parent Support ✨ Ambassador Agents - Peer Support ✨ Warrior Mail ✨ Young Adult Survivorship Support Group ✨ EDUCATION for physicians, researchers and families: ✨ OsteoBites, weekly webinar & podcast with thought leaders and innovators in Osteosarcoma ✨ MIB Book: Osteosarcoma: From our Families to Yours ✨ RESEARCH: Annual MIB FACTOR Research Conference ✨ Funding $100,000 annually for OS research ✨ MIB Testing & Research Directory ✨ The Osteosarcoma Project partner with Broad Institute of MIT and Harvard ... Kids are still dying with 40+ year old treatments. Help us MakeItBetter.
In this week's episode, Alex chats with fellow YACCtivist Heather Brown about her role advocating for the cancer community's resources, sharing her story, and all of the important human occupations that deserve more attention! The two also touch on parenting and how a cancer diagnosis is brought to light to children from a parent's perspective. — HEATHER'S BIO: I identify as an English Canadian, and am married with two children. I am a thyroid cancer survivor, enjoy watching rom coms and superhero movies, a lover of many types of music, and someone who is driven to care for others and strives to be involved and volunteer to help make a difference in the community. Through my cancer journey, I dealt with isolation, fear of recurrence, and anxiety. As a YACCtivist, I am eager to help fellow AYAs to feel supported and help create more awareness about their AYA cancer experience. In the episode, Heather has shoulder length brown hair. She is wearing a blue shirt. She is sitting in her home office. You can check out all of the videos on YouTube or website! Thank you to our partners at CIBC for making this web series possible!
Adolescents' and young adults' perceptions of risks and benefits differ by type of cannabis products Addictive Behaviors Cannabis use patterns among adolescents and young adults (AYAs) have changed recently, with increasing use of non-combustible cannabis products. This survey of 433 California AYAs compared a variety of perceived risks and benefits corresponding to short-term and long-term use of combustible, blunt, vaporized, and edible cannabis, and between "ever" and "never" users. Combustible cannabis and blunts were perceived to have greater risks and benefits than vaporized/edible cannabis. The most common perceived risks were “get into trouble” and “become addicted.” The most common benefits were “feel high or buzzed” and “feel less anxious.” Ever cannabis users perceived less risks and greater benefits than never users. Electronic cigarette use among adults in 14 countries: A cross-sectional study eClinicalMedicine Using 2015-2018 Global Adult Tobacco Survey (GATS) data, prevalence of e-cigarette use and variations by sociodemographic characteristics was examined in 14 countries. Given the progress towards a tobacco-free generation, continued surveillance of e-cigarette use is essential to developing, sustaining, and strengthening tobacco control at the country level. Approximately 18.3 million adults used e-cigarettes across these countries; higher use was observed in certain countries among men, young adults, urban residents, adults with higher education levels, and higher wealth index. Continued monitoring of e-cigarette use is critical for developing interventions and policies to prevent tobacco initiation and enhance cessation support. Assessment of Community-Level Vulnerability and Access to Medications for Opioid Use Disorder JAMA Network Open This cross-sectional study examined the association of community vulnerability to disasters and pandemics with geographic access to each of the three Medications for Opioid Use Disorder (MOUDs) and whether this association differs by urban, suburban, or rural classification. All zip code tabulation areas (ZCTAs) within the continental U.S. were included. Median drive time to the nearest treatment location was greatest for methadone (35 [16-60] minutes) and shortest for buprenorphine (16 [0-30] minutes; P
In the beating heart of Berlin, Defne Ayas finds herself surrounded by a cast of endlessly invigorating neighbours. ‘Kiez' is the Berliner word for a city neighbourhood, a relatively small community encompassed by the sprawling city. Originally heralding from Istanbul, but shaped by New York and Shanghai, Defne is more than at home in unfamiliar places. Sipping steaming mugs of ceremonial grade cacao, she sets off in search of warmth and a touch of erotica, encountering filmmakers and theorists, DJs powering peak-of-the-night climaxes, salacious journalists and inspiring artists, who have found a haven in Berlin. There are pilates instructors, kundalini breath coaches and, in the waiting room of the nearby medical practice – run by a pair of twin doctors named Minks – is Vaginal Davis, the internationally revered doyenne and performance artist. Against the backdrop of the pandemic and despair-inducing current events, Defne uncovers a radical sensuality harbouring in enlightening and tender minds.Tremendous gratitude to AA Bronson, for his reading of Love Letter to Berlin, and Ayumi Paul for a clip of her stunning work, Eternal Love, recorded on the abandoned tennis courts in the Woga-Komplex. Part of an ensemble of buildings designed by the architect Erich Mendelssohn, the courts are a former neighbourhood hub, a popular and affordable meeting point that, since the land has been sold to a private investor, are closed to the public. And great thanks to Vaginal Davis for an excerpt of an audio work from her 2021 exhibition, The Wicked Pavilion. The excerpt appears courtesy of the artist and Galerie Isabella Bortolozzi, Berlin. Introduction and outro voiced by Johnny Vivash. Editing and sound design by Tobias Withers. Soundscape by The God in Hackney. Artwork by Karel Martens. Produced by the Extra Extra team. Our GDPR privacy policy was updated on August 8, 2022. Visit acast.com/privacy for more information.
Discussion of a new, early phase clinical trial for patients with metastatic osteosarcoma targeting the DNA damage repair pathway. Dr. Vishu Avutu attained his M.D. from the University of Texas Southwestern Medical School and began his research endeavors with the Pediatric Oncology Education Program at St. Jude Children's Research Hospital; finding a passion for working with adolescents and young adults, Vishu matched to the internal medicine-pediatric residency at Harvard's Brigham and Women's/Boston Children's Hospitals. In addition to serving as Chief Resident, Vishu helped develop and launch the Center for Adolescent and Young Adult Oncology at the Dana Farber Cancer Institute. He then completed his medical oncology fellowship at Memorial Sloan Kettering Cancer Center. He is a co-founder of MSK's Adolescent and Young Adult Oncology Program, where his work has garnered MSK's Patient and Family Centered Care Grant Initiative and the Young Investigator Award from the American Society of Clinical Oncology. He is an assistant attending in the Departments of Medicine and Pediatrics and cares for AYAs with sarcomas.
Katherine Grill is the CEO and co-founder of Neolth, a technology company that provides personalized mental health support to teens through a self-guided mobile app that was built in partnership with over 300 students. The app consists of on-demand content in the form of personalized relaxation practices, stigma-reducing videos about lived experiences, and other health-tracking features. The app is now adopted by over 200 schools. Prior to founding Neolth, she worked at Children's National pediatric hospital conducting NIH research, co-founded a community health program for young adults, and was a university professor teaching courses in psychology and neuroscience at undergraduate and graduate levels.Katherine was selected for the Forbes 30 Under 30 list in 2022, under the education category.Katherine received a BS in Art Therapy, MA in Psychology, and a Ph.D. in Behavioral Neuroscience. She has expertise in school-based mental health and using digital interventions with adolescents and young adults (AYAs). She has won numerous awards through her work with Neolth; most recently she was selected for the Forbes 30 Under 30 list in the 2022 education category. She was featured in Forbes alongside the founders of Bumble and Zyper in 2021 as a leading female founder and was honored with a display on the Nasdaq Tower in Times Square in 2020.In this episode we talk about:The stigma surrounding mental health and how the pandemic has accelerated the conversation around mental health. Importance of proactive rather than a reactive model of treating mental health issues. How Katherine wanted to make an impact at scale on a societal level which led her to build Neolth.How Neolth conducted user research to launch the app by partnering with over 500 students. How Neolth is leveraging ‘community' to share lived experiences to break down the stigma around mental health. How Neolth partners with schools to distribute its product.Mental health tips for students and founders.Future aspirations for the company Check out Neolth in the app store and at https://www.neolth.com/Follow us on Instagram -> https://www.instagram.com/startyourselfuppodcast/Follow my Twitter -> https://twitter.com/StarturselfupodWant to sponsor us? Email us at startyourselfuppodcast@gmail.com
In this episode, we are joined by Lauren Lux from UNC Lineberger Comprehensive Cancer Center. Lauren is the Director for their AYA program. We talk about the importance for AYAs to find and work with a hospital that specializes in the AYA cancer.
Ditt barn KANSKE vill, att ni ska ta med er kompisen Mats eller Malin till lekparken. MEN, i dessa tider så KAN det ju bli Achmed eller Aya istället. Visst, det är inte Ayas fel att hon kommer där i full muslimsk mundering, men hon blir ju tyvärr en vandrande reklamskylt för det som många ser som fel i det här landet. Häng med i det här programmet, så får ni höra om hur en svensk pappa reagerade, när hans dotter ville ta med sig en muslimsk flicka till lekparken. Fick han konstiga blickar av andra svenska föräldrar? Lyssna på det här programmet, du också!DET ÄR SJUKA ÖVERPRISER PÅ VISSA DATORPRYLAR I VÄRLDEN FÖR TILLFÄLLET - PODDENS BUFFERT ÄR NU HELT BORTA NÄR FLER SAKER BEHÖVER INHANDLAS. MÅLET ÄR 3000 KR, INNAN DEN 30 NOVEMBER:Swish: 073 846 37 64Meddelande: Gåva(13 November 2021)LENNART, JOHAN OCH ELISABETH DISKUTERAR:* Var tvungen att ta slöjunge till lekpark.* Det är fängelset han ser närma sig i horisonten.* Kvinnan lever som en mullvad, och gillar livsfarliga män.* "Bonde" besökte Stockholm. Fick höra - "Tror du att jag är din hora, svenne?"* Morsan, Facebook och afrikanen.* Fick samtal från fröken - För att sonen inte bjöd klassens utlänningar på sitt kalas.MEDVERKANDE:Programledare: Lelle Johansson.Gäster: Johan Widén, Elisabeth Engman & Lennart MatikainenVI SÖKER NYA GÄSTER:VERKLIGHETSCHECKEN@GMAIL.COMFörra programmet:ÖPPNADE SKOLKATALOG - SÅG SIN LILLE SON I "KJOL, STRUMPBYXOR OCH KOFTA"https://www.spreaker.com/user/verklighetschecken/oeppnade-skolkatalog-saag-sin-lille-son-Alla program:https://www.spreaker.com/show/verklighetscheckenNÄSTA NYA PROGRAM:LÖRDAGEN DEN 20 NOVEMBERDu hittar även Verklighetschecken här:PODDTOPPEN:https://poddtoppen.se/podcast/1516623687/verklighetscheckenSPOTIFY:https://open.spotify.com/show/3Lvy0LS8zfffv7ad60LwqoiTUNES:https://podcasts.apple.com/us/podcast/verklighetschecken/id1516623687?uo=4VECKANS TIPSLELLEUseless - Downfall https://www.youtube.com/watch?v=rUi9doVHGf8ELISABETHFatal Attractionhttps://www.imdb.com/title/tt0093010/JOHANSix Ribbonshttps://open.spotify.com/track/5TrWxxBATFXfmjtYdCom8x?si=d018a7eb84054975&fbclid=IwAR2BGIuKSAVUcoxeFmWcTiUUnAuoae-S2TM2hjgAU2RJcfoDj1PiIWeaHXM&nd=1LENNARTMartina Edoff - 'World Has Gone Mad'https://www.youtube.com/watch?v=yCKh8WuMoEM
In our first episode we invite Danielle Ralic, CEO and founder of Ancora.AI, to discuss clinical trials for AYAs. This is a lively conversation on how and why she started Ancora, why clinical trials are important to help AYAs and not just a last resort, and how important it is to have easy access to the information of clinical trials regardless of age, race, gender, or any underserved community.
Udah lama banget nih, Riri dan Ayas enggak menggelar lapak ngobrolin K-urrent Favorites masing-masing. Happy banget sesi ini karena kita berdua lagi banyak kesamaan dalam kesukaan, kayak album sampai tontonan penghiburan. Kalau untuk drama terkini sih, kita beda banget, yang satu penuh energi dan satu lagi kesedihan tiada ujung. Kulik obrolan kita ya, siapa tahu chingu-deul punya temen satu frekuensi di episode kali ini!
A cura di Daniele Biacchessi È terminata una delle peggiori campagne elettorali amministrative di sempre, dove il dibattito politico è stato influenzato da questioni nazionali, mentre i problemi locali sono stati occultati. Ed è paradossale perché si tratta di test elettorali importanti. Il 3 e 4 ottobre vanno al voto 1.348 comuni, di cui 1.157 appartenenti a regioni a statuto ordinario e 191 a regioni a statuto speciale. Negli stessi giorni gli elettori residenti in Calabria dovranno anche esprimersi per il rinnovo della carica del presidente di Regione e del consiglio regionale. Il turno di ballottaggio delle comunali è fissato per il 17 e 18 ottobre. E si andrà avanti il 19 e 20 settembre con le elezioni nel comune di Ayas in Valle d'Aosta, il 10 ottobre in 8 comuni del Trentino-Alto Adige ed il 10 e 11 ottobre in 98 comuni della Sardegna e 43 comuni della Sicilia. Si voterà con sistemi elettorali differenti, e questo renderà già difficile l'analisi e la proiezione nazionale. Eppure i tanti problemi locali, l'ossatura centrale di queste votazioni, sono spariti dall'agenda delle amministrative per fare posto ai comizi dei leader nazionali, alle divergenze dentro gli schieramenti, alle polemiche riguardanti il Governo nazionale e chi sta dentro e fuori. La vera sfida invece sul buon Governo locale, sull'amministrazione dei beni comuni da parte è dei futuri sindaci è purtroppo venuta a mancare. _________________________________________ "Il Corsivo" a cura di Daniele Biacchessi non è un editoriale, ma un approfondimento sui fatti di maggiore interesse che i quotidiani spesso non raccontano. Un servizio in punta di penna che analizza con un occhio esperto quell'angolo nascosto delle notizie di politica, economia e cronaca. Per i notiziari sempre aggiornati ascoltaci sul sito: https://www.giornaleradio.fm oppure scarica la nostra App gratuita: iOS - App Store - https://apple.co/2uW01yA Android - Google Play - http://bit.ly/2vCjiW3 Resta connesso e segui i canali social di Giornale Radio: Facebook: https://www.facebook.com/giornaleradio.fm/ Instagram: https://www.instagram.com/giornaleradio.tv/?hl=it Twitter: https://twitter.com/giornaleradiofm
A cura di Daniele Biacchessi È terminata una delle peggiori campagne elettorali amministrative di sempre, dove il dibattito politico è stato influenzato da questioni nazionali, mentre i problemi locali sono stati occultati. Ed è paradossale perché si tratta di test elettorali importanti. Il 3 e 4 ottobre vanno al voto 1.348 comuni, di cui 1.157 appartenenti a regioni a statuto ordinario e 191 a regioni a statuto speciale. Negli stessi giorni gli elettori residenti in Calabria dovranno anche esprimersi per il rinnovo della carica del presidente di Regione e del consiglio regionale. Il turno di ballottaggio delle comunali è fissato per il 17 e 18 ottobre. E si andrà avanti il 19 e 20 settembre con le elezioni nel comune di Ayas in Valle d'Aosta, il 10 ottobre in 8 comuni del Trentino-Alto Adige ed il 10 e 11 ottobre in 98 comuni della Sardegna e 43 comuni della Sicilia. Si voterà con sistemi elettorali differenti, e questo renderà già difficile l'analisi e la proiezione nazionale. Eppure i tanti problemi locali, l'ossatura centrale di queste votazioni, sono spariti dall'agenda delle amministrative per fare posto ai comizi dei leader nazionali, alle divergenze dentro gli schieramenti, alle polemiche riguardanti il Governo nazionale e chi sta dentro e fuori. La vera sfida invece sul buon Governo locale, sull'amministrazione dei beni comuni da parte è dei futuri sindaci è purtroppo venuta a mancare. _________________________________________ "Il Corsivo" a cura di Daniele Biacchessi non è un editoriale, ma un approfondimento sui fatti di maggiore interesse che i quotidiani spesso non raccontano. Un servizio in punta di penna che analizza con un occhio esperto quell'angolo nascosto delle notizie di politica, economia e cronaca. Per i notiziari sempre aggiornati ascoltaci sul sito: https://www.giornaleradio.fm oppure scarica la nostra App gratuita: iOS - App Store - https://apple.co/2uW01yA Android - Google Play - http://bit.ly/2vCjiW3 Resta connesso e segui i canali social di Giornale Radio: Facebook: https://www.facebook.com/giornaleradio.fm/ Instagram: https://www.instagram.com/giornaleradio.tv/?hl=it Twitter: https://twitter.com/giornaleradiofm
A cura di Daniele Biacchessi È terminata una delle peggiori campagne elettorali amministrative di sempre, dove il dibattito politico è stato influenzato da questioni nazionali, mentre i problemi locali sono stati occultati. Ed è paradossale perché si tratta di test elettorali importanti. Il 3 e 4 ottobre vanno al voto 1.348 comuni, di cui 1.157 appartenenti a regioni a statuto ordinario e 191 a regioni a statuto speciale. Negli stessi giorni gli elettori residenti in Calabria dovranno anche esprimersi per il rinnovo della carica del presidente di Regione e del consiglio regionale. Il turno di ballottaggio delle comunali è fissato per il 17 e 18 ottobre. E si andrà avanti il 19 e 20 settembre con le elezioni nel comune di Ayas in Valle d'Aosta, il 10 ottobre in 8 comuni del Trentino-Alto Adige ed il 10 e 11 ottobre in 98 comuni della Sardegna e 43 comuni della Sicilia. Si voterà con sistemi elettorali differenti, e questo renderà già difficile l'analisi e la proiezione nazionale. Eppure i tanti problemi locali, l'ossatura centrale di queste votazioni, sono spariti dall'agenda delle amministrative per fare posto ai comizi dei leader nazionali, alle divergenze dentro gli schieramenti, alle polemiche riguardanti il Governo nazionale e chi sta dentro e fuori. La vera sfida invece sul buon Governo locale, sull'amministrazione dei beni comuni da parte è dei futuri sindaci è purtroppo venuta a mancare. _________________________________________ "Il Corsivo" a cura di Daniele Biacchessi non è un editoriale, ma un approfondimento sui fatti di maggiore interesse che i quotidiani spesso non raccontano. Un servizio in punta di penna che analizza con un occhio esperto quell'angolo nascosto delle notizie di politica, economia e cronaca. Per i notiziari sempre aggiornati ascoltaci sul sito: https://www.giornaleradio.fm oppure scarica la nostra App gratuita: iOS - App Store - https://apple.co/2uW01yA Android - Google Play - http://bit.ly/2vCjiW3 Resta connesso e segui i canali social di Giornale Radio: Facebook: https://www.facebook.com/giornaleradio.fm/ Instagram: https://www.instagram.com/giornaleradio.tv/?hl=it Twitter: https://twitter.com/giornaleradiofm
Le Elezioni Amministrative 2021 si terranno il 3 e 4 ottobre in 1.192 comuni appartenenti a regioni a statuto ordinario e Friuli Venezia Giulia. Il turno di ballottaggio è fissato per il 17 e 18 ottobre. Si terranno 19 e 20 settembre le elezioni nel comune di Ayas in Valle d'Aosta, il 10 ottobre in 8 comuni del Trentino-Alto Adige ed il 10 e 11 ottobre in 98 comuni della Sardegna e 43 comuni della Sicilia. Complessivamente, considerando tutte le regioni, i numeri della consultazione elettorale sono i seguenti: * comuni al voto: 1.342 su 7.904 comuni italiani (17,0%) * appartenenti a regioni a statuto ordinario: 1.154 su 1.342 (86,0%) * appartenenti a regioni a statuto speciale: 188 su 1.342 (14,0%) * comuni superiori (*): 137 su 1.342 (10,2%) * comuni inferiori (*): 1.205 su 1.342 (89,8%) * capoluoghi di provincia: 20 (di cui 6 capoluoghi di regione) _______________________________________ Ascolta “Dentro la Notizia”, l'approfondimento sul fatto del giorno di Giornale Radio: uno sguardo da vicino alla principale notizia della giornata. Tutte le news di politica, attualità, cultura ed economia raccontate in 7 minuti in un resoconto quotidiano senza commenti. “Dentro la Notizia” è il podcast per chi vuole conoscere e informarsi sugli eventi più importanti di oggi e sui personaggi di maggiore interesse nazionale e internazionale del giorno. A cura di Franco Cervellati Per i notiziari sempre aggiornati ascoltaci sul sito: https://www.giornaleradio.fm oppure scarica la nostra App gratuita: iOS - App Store - https://apple.co/2uW01yA Android - Google Play - http://bit.ly/2vCjiW3 Resta connesso e segui i canali social di Giornale Radio: Facebook: https://www.facebook.com/giornaleradio.fm/ Instagram: https://www.instagram.com/giornaleradio.tv/?hl=it Twitter: https://twitter.com/giornaleradiofm
Idol itu sama-sama manusia, wajarnya memang punya salah atau kurang. Tapi, kenapa sih kalau perilakunya salah dikiiit langsung banyak yang nge-cancel? Cancel culture ini ternyata punya tendesi positif dan negatif loh. Riri dan Ayas bakalan ngobrol panjang soal cancel culture di dunia perfandoman plus menjawab pertanyaan di episode ini, bisa enggak ya maafin kesalahan idol dan kesalahan kayak gimana yang kita sebagai fans enggak bisa maafin sama sekali. Mari kita bahas!
Annyeonghaseyo! Udah lama banget kita enggak ngobrol panjang nih, kali ini Riri dan Ayas bakalan membedah album terbaru AKMU yaitu Next Episode. Tujuh lagu plus tujuh kolaborasi dengan musisi yang punya 'warna' berbeda membuat Next Episode jadi sajian paling baik yang kami berdua dengerin. Tema yang beragam mulai dari ingin kabur dari dunia, enggak bisa move on dari masa lalu sampai harapan tentang perdamaian, semuanya lengkap untuk menemani keseharian kita!
VENERIS DIES. Nuestra sección de arte, música y cultura general esta dirigida para todos aquellos que disfrutan de las obras de arte, de escuchar un buen disco y entender la vida de los diferentes artistas que han pasado por la historia de la humanidad. Tenemos una sección donde se hablara del Séptimo Arte de forma sencilla y entendible visto desde un concepción de un neófito “domiguero” HISTORIA DEL ARTE *El gran despertar 46. Duelo por un muerto, h. 700 a.C. 47. Polimedes de Argos. Los hermanos Cleobis y Biton, h. 615-590 a.C. 48. Aquiles y Ayas jugando a los dados, h. 540 a.C. 49. Guerrero ciñendo la armadura, h. 510-500 a.C. 50. Ictino/El Partenón, Acrópolis, Atenas, h. 447-432 a.C. 51. Atenas Partenos, h. 447-432 a.C. 52. Hércules sosteniendo los cielos, h. 470-460 a.C. 53. Auriga, h. 475 a.C. 54. Detalle de la ilustración 53. 55. El discóbolo, h. 450 a.C. 56. Auriga, h. 440 a.C. 57. Caballo y jinete, h. 440 a.C. 58. Ulises reconocido por su vieja niñera, siglo V a.C. 59. Estela funeraria de Hegeso, h. 400 a.C. --- Send in a voice message: https://anchor.fm/irving-sun/message
Dr. David Freyer, professor of clinical pediatrics at the University of Southern California; Dr. Michael Roth, director of the AYA Program and Childhood Cancer Survivorship Program at The University of Texas MD Anderson Cancer Center; and onco-fertility expert Dr. Leslie Appiah, associate professor of Obstetrics and Gynaecology at the University of Colorado Anschutz, weigh in on the challenges and advances in care for adolescents and young adults with cancer and survivors. Transcript ASCO Daily News: Welcome to the ASCO Daily News Podcast. I'm Geraldine Carroll, a reporter for the ASCO Daily News. On today's episode, we'll discuss the unique challenges facing adolescents and young adults with cancer. I'm delighted to welcome three experts for this discussion. Dr. David Freyer is a professor of clinical pediatrics, medicine, and preventive medicine at the University of Southern California's Keck School of Medicine. Dr. Michael Roth is director of the AYA Program and Childhood Cancer Survivorship Program at The MD Anderson Cancer Center. And Dr. Leslie Appiah is associate professor of obstetrics and gynecology and director of the Fertility Preservation and Reproductive Late Effects Program at the University of Colorado and Children's Hospital Colorado. My guests report no conflicts of interest relating to our discussion today, and full disclosures relating to all episodes of the podcast are available on our transcripts at ASCO.org/podcasts. Dr. Freyer, Dr. Appiah, and Dr. Roth, it's great to have you on the podcast today. Dr. David Freyer: Thanks, Geraldine. It's really great to be here. Dr. Leslie Appiah: Thank you for having us. It's our pleasure. Dr. Michael Roth: Yeah, really great to be here. ASCO Daily News: So today we're highlighting some of the issues and strategies you all presented during the ASCO Annual Meeting that addressed equity issues and strategies to improve outcomes for AYAs. Our listeners will find a link to the presentation in the transcript of this episode. Dr. Freyer, there are approximately 89,000 AYA patients diagnosed with cancer in this country each year. Tell us about the challenges they confront and why they're so vulnerable to health care disparities. Dr. David Freyer: Absolutely. I'd like to say, first of all, thanks, Geraldine, for the opportunity for us to participate in this podcast. I think, as your question points out, AYAs who developed cancer are in a sort of double jeopardy, because not only of the challenges of cancer, but also their life stage where there's so much change and vulnerability. Normal changes for AYA life stage differ across the spectrum. 15 to 39 years is a very broad range. And at the younger age, I would say in the 15 to 21-year-old group, these challenges commonly involve education. It's finishing high school, possibly education or trade school, pursuing a career or vocation, expanding and reorienting their social network from their nuclear family, experiencing serious relationships for the first time, and then starting to explore intimacy and sexuality. For that younger group, self-image and physical appearance is very, very important. And there's overall a move toward greater personal autonomy and independence. When you get into the middle years, roughly [ages] 22 to 29, I would say that the issues begin to take on a financial character. It's becoming financially independent, paying for housing, starting or maintaining their own health insurance, maybe having their first meaningful employment. And a great many in this group are saddled with substantial debt from previous education. And then in this age group, they're starting to identify significant partners for the first time. And then finally, in the later years, roughly [ages] 30 to 39, the concerns really begin to focus on career advancement, maintaining a home life, starting or building families, raising children, taking on new financial obligations of adulthood like owning a home. And interestingly and importantly, some in that latter phase, we're seeing more and more, are beginning to feel the pinch from above as they're beginning to take care of unwell or older dependent parents who also need the financial support of this normally productive age group. So there's this developmental continuum. And to add cancer on top of all of that is, to say the least, highly disruptive. So even the experience of being treated for AYA cancers that have a good prognosis, and many do nowadays, it still interrupts education, delays career starts and return to work, upends their social networks, [and] undercuts their independence. They revert to being dependent on their nuclear family, and they have enormous financial burden. And then on top of all of that, of course, many of these patients are dealing with long-term health problems, because they have late effects from their treatment. And so to get your point about why this is an equity issue, I think that this session is perfect for this 2021 ASCO meeting actually, because AYAs, it's a cancer population that's defined by age. It's characterized by life stage dependent challenges. And so for that reason, they're systematically disadvantaged in ways that other cancer populations are not. And that's the definition of health care disparity. So they need special support in all these areas. And as a final note, I would say that AYAs who represent other disadvantaged cancer populations, such as low income or racial and ethnic minorities, I mean, they're actually in triple jeopardy, because they're at the intersection of their age, cancer, and also their background social status. ASCO Daily News: Absolutely. AYAs confront a host of disparities. AYAs frequently identify fertility threat as a major concern, and many patients have suffered fertility loss due to the effects of treatment. Thankfully, there continues to be much progress in fertility preservation, but not everyone has access to this care. Dr. Appiah, you've done a lot of work in onco-fertility and have even engaged with legislators to help pass bills mandating insurance coverage of fertility preservation for patients with cancer. Can you tell us about best practices in fertility preservation and your concerns that not all patients and survivors have access to available technologies? Dr. Leslie Appiah: Thank you, Geraldine, for that question. As you stated, with 80,000 plus AYA patients being diagnosed a year, we know that there are approximately 100,000 survivors. And so survivors are living longer. Up to 75% of them will experience at least one adverse event or late effect of their cancer therapy. Infertility, as you stated, is the most prevalent, one of the most discussed reproductive late effects in the literature, affecting up to 12% and 66% of female and childhood cancer survivors respectively. And then in addition to the infertility or fertility-related effects, there are other reproductive late effects that cancer survivors experience. And so as in many aspects of adolescence and young adult care, disparities also exist in onco-fertility or fertility preservation. The governing bodies of our societies--so the American Society for Reproductive Medicine, the American Society of Clinical Oncology--have all put out consensus statements describing how we should be caring for this population and how we should be providing equal care to these patients (DOI: 10.1200/JCO.2018.78.1914). And all of the societies or the guidelines recommend that physicians inform every patient of reproductive age about the risk of therapies to fertility and the options for fertility preservation. And by reproductive age, we mean from birth through, typically, for women age 42 and our male counterparts can be fertile much later into 50s and 60s. And so all of these patients should be counseled about the risks and then referred or offered the opportunity to see a reproductive specialist for further counseling, and that this really should occur before any treatment is provided. We know that once patients receive any cancer therapies that our options are limited in terms of what we can provide them for fertility preservation. So this conversation should occur regardless of the patient's age, gender, culture, socioeconomic status, or health care team bias. And these discussions should continue into survivorship, because even at the end of therapy, there may be some options for these patients. Despite recommendations, however, less than 50% of patients ever recall having these discussions with their providers, and then less than 30% of patients go on to use fertility preservation therapies. This disparity is sometimes due to information overload. Many times the patients don't recall the discussion, even though the discussion was had. But really when we look at the data, many times they are not being offered this information. We know that in terms of disparities, men are more often referred for counseling and referred for fertility preservation therapies because of the idea that it's easier to bank. And for those men who are feeling well and are of age, sperm banking can be a simple process. But many of these patients are very ill, and so extracting sperm becomes an issue for them and it becomes very challenging. We know that patients with fewer financial resources are less likely to be offered fertility preservation counseling. So our patients in the lower socioeconomic statuses, these patients are less likely to be referred. And again, that's not providing equitable care. There are many resources available for patients that can provide some financial resources. And so these patients really should be given the opportunity to have a discussion and seek resources, or we can provide options for them. And then lastly, I'll say that in terms of disparities, cultural biases play a huge part in this. Our providers come with their own biases as to how many children they feel that a family should have, and that can be a bias. Sometimes prognosis can be a form of bias. If the patients have a poor prognosis, then perhaps the provider is uncomfortable referring them for fertility preservation therapy. But there are some options for patients if they should succumb to their cancer diagnosis, there are some posthumous reproductive options that our young adults can participate in or agree to. And it requires a lot of legal discussion and documentation and contracts, but there are options. And we really should be providing our patients the opportunity to decline these options. And in that way, we can really address the disparities in fertility preservation for our patients. And then lastly, I will say cost is a factor, but there are I think now 13 states with insurance mandates for fertility preservation. And these mandates are starting to occur more and more often. And so we need to continue to push our legislatures to move the needle forward in this way. ASCO Daily News: Can you highlight some of the new technologies in fertility preservation that oncologists should be aware of? Dr. Leslie Appiah: Absolutely. I think two of the very important aspects of this is that we are able to provide fertility preservation for adolescents in terms of egg freezing. So until recently, we limited this option for girls who were 18 and older or late adolescents, but we now can provide egg freezing for girls once they reach puberty, and especially once they are monarchal or have achieved menses. And so that is something that we really want our oncology colleagues to know. It's also important for our colleagues to understand that we can start for egg freezing at any point in the patient's menstrual cycle. Historically, the patient needed to be on their cycle in order to stimulate, but now we have random start protocols. So if we see a patient today, we can start stimulating tomorrow or the next day. And the average number of days to stimulate the ovaries to be able to grow eggs to freeze is about 10 to 12 days. And so we really can intervene for these patients if we are informed of their diagnosis very early. And in that way, there will be no delay in their cancer therapies. And then lastly, we are very excited to share that ovarian tissue freezing is no longer experimental. As of December 2019, the experimental ban was lifted by the American Society for Reproductive Medicine and ASCO. And so patients from birth through age 40 can have an ovary removed, or part of an over removed, and frozen for their future fertility. And this is considered clinical care. We're able to put this through the insurance, and therefore alleviate the financial burden on many of our families. ASCO Daily News: That's great, Dr. Appiah. Thanks for highlighting these positive developments in fertility preservation. Managing the care of AYA patients and survivors as they age and deal with toxicities from treatment and other physical and mental health issues requires collaboration between providers. Dr. Roth, can you share some strategies to address the unique challenges of AYAs and the providers who care for them through various phases of their lives? Dr. Michael Roth: Thank you, Geraldine, for that important question. As Dr. Appiah and Dr. Freyer clearly noted, AYAs face many unique challenges both during and after cancer treatment. And it really is essential that, as medical providers, we seek to meet and treat these challenges. Unfortunately, the system as it's currently set up is really not well suited to care for some of these unique needs. Specifically, many of our younger AYAs who deal with cancer such as leukemias and lymphomas, they're treated within the pediatric oncology department. And often, the approach to their care is focused on the care of younger children. On the flip side, many patients in their 30s with breast cancer, colorectal cancer, these AYAs are treated within the medical oncology community and are often seen in clinics with many older adults. So most of the care across the country is not specifically tailored to the unique needs of AYAs, and that's really where collaboration comes specifically into play. We know that there are many opportunities to address these psychosocial needs, the education and work needs, the onco-fertility needs, the genetic counseling needs of our AYAs, but it really takes a champion, or a number of champions, at each site to ensure that AYAs needs are prioritized. Recently, there has been a large growth in the number of AYA programs. And what a number of institutions have done is they've brought medical oncology together with pediatric oncology to centralize these specific AYA resources under one house. Some of these AYA programs are treatment-based programs. For example, some sites have an AYA heme-malignancy program, where they will provide both the cancer care, as well as the supportive care required for their AYA patients with leukemias and lymphomas. Other AYA programs are purely supportive care-based programs, where patients will be referred to them for their onco-fertility needs, for their psychosocial health needs, for their education and work needs as well. At the end of the day, we really just need to do what's right for our patients. And we've learned over many, many years that just treating our AYAs the same as we treat our younger children, or just treating our AYAs the same as we treat our older adults, doesn't cut it. And we really need tailored, focused approaches to make sure that we both optimize cure rates, as well as to optimize health-related quality of life for these patients both during and long after treatment. ASCO Daily News: Right. So Dr. Roth, what will it take to improve collaboration between providers? Dr. Michael Roth: Cancer care is traditionally very siloed. And these silos do decrease the rate of progress in which we can make within cancer care. But specifically within AYA oncology, historically, pediatric oncologists did not interact much with medical oncologist. By having AYA tumor boards, by having more multidisciplinary clinics, essentially you're taking down those barriers. You're breaking down those walls. And being face to face, or now in the virtual world, being able to connect and to collaborate, it really allows the optimization of care for our AYAs. It's not possible to know everything about every AYA oncology diagnosis. And when you're in a large academic center, you often have many subspecialists within each of the different cancer types. When you're in a smaller community setting, oftentimes you have more generalists who take care of all patients with a large number of diagnoses. And often in the community settings, there aren't many specialists who focus on AYAs with breast cancer or young adults with colorectal cancer. And oftentimes, it really takes teamwork and a real consensus and an approach within a team setting to make sure that both the cancer-directed care is appropriate and is the most appropriate treatment approach, but also there's a need to focus on that health-related quality of life, and specifically that often gets lost for many of our patients during their treatment. Dr. Leslie Appiah: We are also finding that when we incorporate our fertility preservation colleagues, our experts, into the multidisciplinary oncology meetings that were also able to break down those silos and help educate our colleagues about fertility options for patients as they are diagnosed. And that really does expedite the care that we provide to these patients. We also want to look at leveraging technology to improve how we incorporate fertility preservation into oncology care and using our best practice advisories within our Epic systems, as well as using the Epic referral process to really expedite the referrals of patients. And by that I mean, there are ways to do an opt-out referral system where the referral is automatic, unless the oncologist opts out of that referral. And in order to opt-out, the oncologists will have the discussion with the patient about their fertility risk and then recommend consultation. And the patient can then decline, and that's when the provider would opt-out of that consult. So utilizing technology that we have already can really expedite the care for these patients and break down some of those barriers. ASCO Daily News: Absolutely. Well, there's a huge need for more research on AYAs. Dr. Freyer, how does clinical trial accrual among AYAs compare to older patients? Are there any innovative strategies that could improve trial accrual among this patient population? Dr. David Freyer: This is a really important issue, and I'm glad you raised it, Geraldine. So clearly, to continue advancement of AYA oncology and really every realm, whether it's survival or supportive care, more epidemiology studies, studies on basic biology questions about cancer types in this age group, long-term outcomes, and so forth, we can't make any advancements in AYA or any other age without conducting the research. Clinical trials for many years have been sort of the heart and soul of clinical oncology science, because it's actually testing new questions, new therapies, and following in an organized way the outcomes of the patients who are enrolled in clinical trials. The problem is that the proportion of AYA patients who are enrolled in clinical trials is exceedingly low. The gold standard, I think, or benchmark for clinical trial enrollment actually tends to be children, pediatric oncology, which for decades has been very, very successful at enrolling patients on clinical trials. And they have improved survival and improved knowledge around cancer to show for that effort. So most studies--there's a little bit of variation--but most studies indicate that about 20% to 40%, at any given time, of children enroll on a clinical trial if they're newly diagnosed with cancer. For AYAs, that number is less than 10%, usually more around 5%. And that's actually similar to older adults. The drop off occurs sometime between 15 and 20 years of age in terms of enrollment on clinical trials. So the question is, how can AYA patients--how can the picture be shifted to look more like that of younger children? And it turns out, I think it's really a complicated scenario. There's multiple levels to this problem. Part of the challenge is having the right kinds of trials available for the diseases that occur in adolescents and young adults. And then another layer is getting those trials that are developed by the, say, the National--the NCTN Oncology groups getting those opened up at the sites where the AYA patients are being treated. There are a lot of barriers that institutions need to overcome in order to get those trials opened up. And if they can be opened up, then they're available to the AYA patients. But it doesn't stop there. Then the next step is that you've got to get those trials presented to the AYA patients. So the pediatric or medical oncologist that's taking care of the children--or excuse me, the AYA patients--need to be aware of these trials. They need to have access to research infrastructure that can make it feasible to offer these and enroll the patients. And then finally, of course, the AYA patient himself or herself needs to be convinced that this is the right thing for them to do and to go ahead an enroll on the clinical trial. So there's multiple steps to this. And clearly, addressing any single step won't ensure that more AYAs are being enrolled into clinical trials. So it requires a multi-level, multipronged approach. I think, in terms of innovative strategies, again, it's all of these things at one time. So on the national level, there's a good deal of work being done to try to increase the collaboration across the different NCTN groups--the National Cancer Institute (NCI) National Clinical Trials Network groups, the adult groups, and children's oncology group--to increase collaboration across those groups. So that there are more trials being opened that are appropriate for that entire spectrum of 15 to 39 years of age, which, as Dr. Roth pointed out earlier, cannot be addressed without collaboration between the pediatric and the medical oncology groups. So trying to pull those together. And then on the delivery end to the patient, trying to find better ways to support our oncologists and to make the information about clinical trials more digestible, more maybe less threatening, more understandable to AYA patients, so that they can make a good, well-informed decision for themselves. Perhaps the least exciting for most of us, but in some ways maybe the most crucial and the most overlooked, is that middle stage of getting these trials opened at the sites. That requires resources to get these passed through the IRBs at the institutions. It takes resources to have clinical research coordinators there to shepherd them through the regulatory processes and then to make those readily available to the practicing oncologists. I think at the local level, that's where some of the greatest challenges are. And I think one of the factors that sort of feeds and aggravates or exacerbates the health disparities issue for AYA patients is where these patients are being treated. There are a number of studies that show that AYAs tend to be treated at community sites rather than traditional academic centers. And that's wonderful in terms of making health care accessible to these patients in their home communities. There's a lot to be said for that actually. But one of the features of that treatment setting that may undercut the clinical trial question at least is that some sites, many of them, don't necessarily participate in a regular way or have fewer resources to participate in the clinical trial enterprise. So those patients, if they're treated in the convenience of their home community, they may not have access to the same sorts of clinical trials of those who are treated in academic centers. We need to figure out a way to overcome those kinds of challenges. It's not easy. ASCO Daily News: Right. Dr. Roth, what are your thoughts on clinical trials for AYAs? Dr. Michael Roth: So a couple of the layers that Dr. Freyer addressed in terms of barriers to enrolling more AYAs in clinical trials, I do think at the national level, we've made a lot of progress over the past decade with these collaborations within the NCTN network groups. Currently, we have a record number of truly AYA collaborative trials open and available for our sites to be able to have available for their local patient population. And like Dr. Freyer said, a lot of these trials, they're really getting stuck at the local level because, in many ways, there's not an incentive to open the AYA trials when you have limited resources, because it's easier to enroll many more patients on the prostate cancer trial or the older adult breast cancer trial just due to patient numbers. So we really do need to overcome that large barrier of when we have trials available at the national level, they need to be opened up at all sites really across the board to make sure that our AYAs have access. The other point on the local level is to address the challenges we have in lack of knowledge on disparities in AYA enrollment and care. And we've tried to overcome that by having local AYA site champions, having folks on the ground really spreading knowledge. These folks typically are investigators, sometimes they work in the research office. And their goal is to help prioritize the opening, activation, and enrollment on AYA specific trials. There's still a lot of work to be done. It's a complex situation, but I do believe we are chipping away at many of these issues. ASCO Daily News: Great. I'd just like to wrap up with a final question about models of survivorship care delivery. So AYA patients who complete treatment need to be supported. They need appropriate follow up to monitor treatment-related health problems and psychosocial support. Dr. Freyer, what are the models of survivorship care delivery that can successfully address these needs? Dr. David Freyer: I think, again, similar to the clinical trial situation that we just discussed, I think that survivorship care for this population--in other words, patients treated during the 15 to 39-year-old age group--is in a process of emerging and growing and taking many of its leads from the pediatric oncology experience. Survivorship care in pediatric oncology is well established. It's been now decades in the development. And there's been a huge amount of research, really high quality research, done to map out the spectrum of late effects of cancer treatment, both medical and psychosocial, for patients who are treated. Those children then grow up into adulthood and they become AYA patients, but they were treated as younger children. So that landscape is pretty well mapped out, and there are excellent models of care in place around the country. That has now become the standard of care in pediatric oncology for comprehensive holistic care of these patients long term. That situation is emerging in AYA oncology--in other words, for patients treated in the 15 to 39-year-old age group. Of course, part of what drove that in pediatrics is that survival rates improved so dramatically that these issues were staring oncologists in the face. And it was absolutely necessary to deal with it. It's taken a little bit longer for survival to come up to those levels in AYA and older adults, but we're there in many cases. And with the high survival now that we're seeing in the AYA age group, the same question is begging itself as was in pediatric oncology, which is now we've got these patients who have completed treatment with all of the problems that you just mentioned. I mean, many do very, very well. And it's important not to paint a more negative picture than is warranted, but I think the data are beginning to show that many long-term survivors of AYA cancer also deal with health problems that are getting superimposed on the normal problems of aging that all human beings develop over time. Now how to deliver that, again, the experience is just emerging. I think that different centers have developed programs that sort of play to their own strengths and overcome their own challenges, just like Dr. Roth said with AYA programs and I'm sure Dr. Appiah could say about fertility preservation programs. Every place has its own experience of one. And while there are some common themes, there are some things that need to be addressed that are individual. I think probably the basic requirements for a survivorship care model for AYA patients is having somebody, a champion, who has some expertise in this area, commitment on the part of the facility to put together at least the basic resources to begin to bring these patients together. There are different kinds of models. The models can be doing survivorship care in the context of each disease team. Breast cancer may have their own survivorship focus, colorectal cancer, leukemias and lymphoma, and so forth. And they may be delivered within the context of the diseases or another model is, I would say, more the classic pediatric model, which is to have a survivorship clinic that can meet the needs across these different diagnoses. And it's important for each program to determine these for themselves. I'll put one final closing pitch in for the clinical research, which is needed in this area as well. Just as clinical trials are needed to improve survival with treatment and also our understanding of these diseases and the cancer hosts that the AYA [patients] represents, there's also a need for research in the long-term as well. And the best way to do that is in the context of survivorship efforts that are organized and have resources like databases and participation in larger cohort studies, so that we can begin to amass the data in the same way that we've done for children. Dr. Michael Roth: So, I completely agree with Dr. Freyer. I think AYA survivorship is still in its infancy. And we're really only learning now about what happens to our patients diagnosed as AYAs with cancer in 15 years, 20 years. What are some of the cardiovascular events that are happening in these patients as they age into their 50s, early 60s? I think there's a real need for standardization of how we care for our AYAs post-treatment based on exposures, based on cancer diagnoses. And currently, with the models in place for survivorship within some of the large institutions, there's a lack of standardization across departments, and then across institutions as well. There really are no set guidelines as to how do we monitor for cardiotoxicity. What should we be doing in terms of monitoring for psychosocial health concerns? And I worry even more, as you go into the community setting, that many of these sites don't have the resources to offer expert survivorship care. As Dr. Freyer mentioned, this is really a plug, a call to action, to focus more attention on our patients' lives, not just during treatment but well beyond treatment. We know that 5-year overall survival for AYAs is approximately 85%. So the majority of our AYAs diagnosed with cancer will live long and well past beyond their cancer diagnosis. And it really is essential that we help them live long, healthy, and happy and productive lives. Dr. Leslie Appiah: And I will add one final word to that. So the U.S. news and World Report reporting system has now started to include fertility preservation as a marker of providing excellent care in the children's hospitals. And of course, that's going to go into the adolescent population as well. So I think that's one impetus for our colleagues and our institutions to really make this a priority. Additionally, as Dr. Roth stated, using national databases, where we can really bring together all of the information so that we can standardize how we care for this population, is really important. And the University of Colorado is developing a national database in fertility preservation as a data coordinating center for the Oncofertility Consortium and will be including various sites across the country, so that we can start to look at this data longitudinally. And then lastly, I would say, again, leveraging technology. I don't think that, in medicine, we utilize technology the way that we should. And I think using our electronic medical record to signal to us, as fertility specialists, when a patient has completed their treatment and they are in survivorship, this is a time for us to intervene again into this patient's care and to make sure we've really addressed all of their fertility and reproductive and gynecologic/urologic needs that they are going to experience. So those are the ways that I think we can incorporate better fertility preservation care into the survivorship care model. ASCO Daily News: Excellent. Thank you, Dr. Appiah. And thank you, Dr. Roth and Dr. Freyer as well, for highlighting the challenges facing AYAs and approaches in care for this patient population. Dr. David Freyer: Thank you, Geraldine. Dr. Leslie Appiah: Thank you for having us. It's been a pleasure. Dr. Michael Roth: Thank you so much. ASCO Daily News: And thank you to our listeners for joining us today. If you've enjoyed this episode, please take a moment to rate, review, and subscribe wherever you get your podcasts. Disclosures: Dr. Michael Roth Research Funding: Eisai, Pfizer Dr. David Freyer: None disclosed. Dr. Leslie Appiah: None disclosed. Disclaimer: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.
Listen Now As more young people survive cancer, the issue of fertility preservation is front and center. Dr. Karen Albritton and her team explore the challenges of preserving fertility in children, teens and young adults undergoing cancer treatment and the latest breakthroughs in oncofertility that are delivering promise for the future.Dr. Karen Albritton Related InformtationOncofertilityAdolescent/Young Adult (AYA) ProgramLife After CancerOncologyHematology and OncologyHematology and Oncology ResearchFort Worth Adolescent and Young Adult Onoclogy Coalition Transcript 00:00:02 Host: Hello and welcome to Cook Children's Doc Talk. A while back we talked with Dr. Karen Albritton the medical director of Cook Children’s adolescent and young adult program in the Hematology and Oncology Center, and she oversees the Oncofertility Program. We also spoke with Olivia Prebus who was instrumental in developing the role of fertility navigator for the program. More recently, we talked with Toni Leavitt who we’ll be introducing later in the program. Toni is the current fertility navigator and we'll be sharing updates about the Oncofertility Program. Dr. Albritton is trained in both pediatric and medical oncology and specializes in the care of adolescents and young adults with cancer. She recognizes the unique needs of these young patients and the challenging decisions they face about day to day living that most people take for granted. One of the biggest and often overlooked as how fertility is impacted by the cancer treatment they receive. As an active advocate for AYA cancer patients, doctor Albritton was instrumental in founding the AYA program here at Cook Children’s as well as the Fort Worth AYA Oncology Coalition, which provides resources for cancer patients and survivors, health professionals and community members. The Fort Worth AYA Oncology Coalition launched the first community supported AYA oncology inpatient unit in the nation and offers young adults diagnosed with cancer age relevant resources and specialized care designed to improve their lives before, during, and after cancer. It is through her experience with AYAs that doctor Albritton has seen a need to consider fertility as part of all pediatric cancer care and establishing the oncofertility program here at Cook Children’s. Welcome. 00:01:48 Dr. Albritton: Thanks for having us. 00:01:51 Host: So let me start by asking what oncofertility is and why it's important? 00:01:55 Dr. Albritton: Oncofertility is a relatively new term in the cancer world and it is a combination of 2 fields, reproductive endocrinology which deals with fertility for people with and without cancer for many different reasons who are seeking to either preserve their fertility or attempt to have children to use fertility methods to have biologic children, and many years ago it was realized that cancer patients have their fertility affected by the cancer treatments and that these 2 fields cam
Devon Ciampa, LMSW, and Megan Solinger, MHS, MA, OPN-CG, discuss coordination of care for adolescent and young adults (AYAs) with cancer and the specific barriers this population faces, including mortality awareness, learning independence, and how to navigate their cancer journey in this transitional age range.