Podcasts about patient reported outcomes

Fidelia Cascini is Digital Healh expert engaged by the Italian Ministry of Health on European and national initiative. She recently wrote a book on secondary use of data in healthcare, read it here: Secondary Use of Electronic Health Data Public Health Perspectives, Use Cases and Challenges https://link.springer.com/book/10.100... This conversation covers the categorization of electronic health data, the importance of distinguishing different data types, and the potential applications and challenges in digital health. We also explore healthcare systems' digitalization, patient data privacy, the European Health Data Space (EHDS), and future public health perspectives. Learn about patient-generated data, clinical trials, and the significant role of digital health advancements in shaping the future of healthcare. www.facesofdigitalhealth.com Newsletter: https://fodh.substack.com/ Youtube: https://www.youtube.com/watch?v=tbSCXUhIDZ8 Show notes: 01:08 Diving into Different Categories of Health Data 01:35 Discussion on Secondary Use of Data in Europe 02:16 Call for Listener Feedback 03:07 Starting the Interview with Felia Kini 03:36 Importance of Distinguishing Data Types 04:38 Challenges in Using Different Data Sources 06:38 Real-World vs. Clinical Trial Data 07:19 Patient Preferences and Medication Adherence 09:31 Most Suitable Data for Secondary Purposes 10:32 Patient Generated Health Data 11:53 Discussions Among Health Ministries 13:09 Trustworthiness and Integration of Digital Tools 17:45 Patient Reported Outcomes in EHRs 19:35 European Health Data Space (EHDS) 29:55 Patient Control Over Data 33:47 Barriers to EHDS Success 37:13 Public Health Perspectives and Global Changes 40:14 Conclusion and Future Perspectives 42:20 Closing Remarks and Upcoming Events

Fidelia Cascini is Digital Healh expert engaged by the Italian Ministry of Health on European and national initiative. She recently wrote a book on secondary use of data in healthcare, read it here: Secondary Use of Electronic Health Data Public Health Perspectives, Use Cases and Challenges https://link.springer.com/book/10.100... This conversation covers the categorization of electronic health data, the importance of distinguishing different data types, and the potential applications and challenges in digital health. We also explore healthcare systems' digitalization, patient data privacy, the European Health Data Space (EHDS), and future public health perspectives. Learn about patient-generated data, clinical trials, and the significant role of digital health advancements in shaping the future of healthcare. www.facesofdigitalhealth.com Newsletter: https://fodh.substack.com/ Youtube: https://www.youtube.com/watch?v=tbSCXUhIDZ8 Show notes: 01:08 Diving into Different Categories of Health Data 01:35 Discussion on Secondary Use of Data in Europe 02:16 Call for Listener Feedback 03:07 Starting the Interview with Felia Kini 03:36 Importance of Distinguishing Data Types 04:38 Challenges in Using Different Data Sources 06:38 Real-World vs. Clinical Trial Data 07:19 Patient Preferences and Medication Adherence 09:31 Most Suitable Data for Secondary Purposes 10:32 Patient Generated Health Data 11:53 Discussions Among Health Ministries 13:09 Trustworthiness and Integration of Digital Tools 17:45 Patient Reported Outcomes in EHRs 19:35 European Health Data Space (EHDS) 29:55 Patient Control Over Data 33:47 Barriers to EHDS Success 37:13 Public Health Perspectives and Global Changes 40:14 Conclusion and Future Perspectives 42:20 Closing Remarks and Upcoming Events

Five articles from the April 2025 issue summarized in five minutes, with the addition of a brief editorial commentary. The 5-in-5 feature is designed to give readers an overview of articles that may pique their interest and encourage more detailed reading. It may also be used by busy readers who would prefer a brief audio summary in order to select the articles they want to read in full. The featured articles this month are, “The Glycogen Synthase Kinase–3 Inhibitor CHIR99021 Reduces Fatty Infiltration and Muscle Atrophy After Rotator Cuff Tears: An In Vitro Experiment and In Vivo Mouse Model,” “Kinesiophobia and High-Impact Sport Activity Are Associated With a Reduced Rate of Return to Sport After High Tibial Osteotomy: A Risk Factor Analysis of a Young and Active Population,” “Outcomes of Revision Elbow Medial Ulnar Collateral Ligament Reconstruction in Professional Baseball Players: An Analysis of 191 Pitchers From 2010 to 2023,” “The Chance to Become an Elite Athlete After Pediatric And Adolescent Anterior Cruciate Ligament Reconstruction,” and “Analyzing the Association of the Area Deprivation Index on Patient-Reported Outcomes in Patients Undergoing Hip Arthroscopy.” Click here to read the articles.

In today's episode, we'll discuss time-limited triplet therapy in relapsed or refractory CLL. Zanubrutinib, venetoclax and obinutuzumab induced deep remissions, and was well tolerated, even in very high-risk patients, and those with prior exposure to targeted therapies. After that: researchers chronicle the development of a patient-reported outcome measure for sclerosis associated with chronic GVHD—graft-versus-host disease. The new symptom scale—currently undergoing validation studies—may provide valuable information regarding severity, functional impact, and response to therapy. Finally, a study of changes in population dynamic rates that underlie inflammation-associated myeloid bias. The work demonstrates the use of mathematical models to deliver critical biological insights and uncover underlying mechanisms.Featured Articles:MRD-guided zanubrutinib, venetoclax, and obinutuzumab in relapsed CLL: primary end point analysis from the CLL2-BZAG trialDevelopment of the Lee Symptom Scale–Skin Sclerosis for chronic GVHD–associated sclerosisPopulation dynamics modeling reveals that myeloid bias involves both HSC differentiation and progenitor proliferation biases

In this video discussion with JACC: Associate Editor Michelle M. Kittleson, MD, PhD, FACC, and authors Eric Hall, MD and James A. de Lemos, MD, FACC, they review this study published in JACC & presented at ACC.25. Do patients who survive cardiogenic shock have neurocognitive consequences at intermediate-term follow-up? New cognitive impairment is common at discharge and 3 months after CS and is associated with worse quality of life and functional status. #jacc #jaccjournals #acc25

Join Professors Peter Nash, Philip Mease, and Laura Coates as they discuss the top publications in the world of PsA. This month, the conversation covered a discussion on the longer-term impact of bimekizumab on patient-reported outcomes, health-related QoL, and work productivity in patients with active PsA who were bDMARD-naïve or had an inadequate response to TNFis for up to 1 year.

The imPROVE study aims to bridge the gap in patient-reported outcomes (PRO) data for Black women with breast cancer by enhancing engagement with tailored electronic PROs (ePROs) and partnering with community leaders to address barriers and ensure accessibility and relevance in community cancer care settings. In this episode, CANCER BUZZ speaks with Manraj Kaur, PhD, investigator and lead faculty for research and innovation at Patient-Reported Outcomes, Value, and Experience (PROVE) center at Mass General Brigham and Andrea Pusic, MD, chief of division of plastic and reconstructive surgery, director of PROVE center at Mass General Brigham, and professor of surgery at Harvard Medical School about the imPROVE study's efforts to enhance Black women's engagement in ePROs in breast cancer treatment.  Dr. Kaur sheds light on strategies to improve technology accessibility for Black women in their cancer care center by providing iPads and refined usability features on the imPROVE app. Dr. Pusic highlights imPROVE implementation results at five community cancer centers, including utilizing local champions and equitable access to resources.   “When we make sure Black women are included, we gain a more accurate picture of health, we can design better care, and then we take a real step towards closing the health equity gap.” – Manraj Kaur   “The imPROVE study is all about increasing accessibility of patient-reported outcome measurements to Black breast cancer patients receiving care in community cancer centers.” – Andrea Pusic   Manraj Kaur, PhD   Investigator, Lead Faculty for Research and Innovation Patient-Reported Outcomes Value Experience (PROVE) Center  Brigham and Women's Hospital  Boston, MA    Andrea Pusic, MD  Chief of Division of Plastic and Reconstructive Surgery  Director, PROVE Center  Brigham and Women's Hospital  Professor of Surgery  Harvard Medical School  Boston, MA    Resources: ACCC imPROVE Study Blog - https://www.accc-cancer.org/acccbuzz/blog-post-template/accc-buzz/2024/06/18/the-power-of-patient-reported-outcome-measures-to-community-cancer-centers? Harvard/BWH PROVE Center - https://prove.bwh.harvard.edu/current_project/improve-breast-cancer-care/

Podcast Overview The podcast, hosted by Valentin Fuster on January 21, 2025, provides an in-depth review of the FINEARTS-HF trial, which evaluated the efficacy of the non-steroidal mineralocorticoid receptor antagonist finerenone in patients with heart failure and mildly reduced or preserved ejection fraction (HFmrEF/HFpEF). The episode highlights findings published in the Journal of the American College of Cardiology (JACC). Introduction to the FINEARTS-HF Trial (00:03:19 – 00:05:56) The FINEARTS-HF trial demonstrated that finerenone reduced heart failure events by 16% compared to placebo in patients with HFmrEF/HFpEF. However, cardiovascular death rates were similar between groups, making the overall clinical impact moderate. Finerenone's Impact on Quality of Life (00:05:59 – 00:12:46) The trial assessed quality of life using the Kansas City Cardiomyopathy Questionnaire (KCCQ), revealing only a slight improvement (1.62 points) with finerenone. Critics, including the FDA, questioned the clinical relevance of these results and suggested the need for simpler, more meaningful patient-reported outcome measures. Finerenone in Patients with Recent Worsening Heart Failure (00:12:58 – 00:20:30) Patients with recent worsening heart failure showed a greater absolute benefit from finerenone, as they were at higher risk of recurrent events and cardiovascular death. However, further studies are needed to confirm these findings. Finerenone's Role in Obese Patients with HFmrEF/HFpEF (00:20:31 – 00:25:20) In obese patients, the benefits of finerenone were consistent across body mass index (BMI) categories, with a possible greater effect in those with higher BMI. Nevertheless, the reliance on BMI as a metric for obesity was criticized, and alternative measures were recommended. Finerenone and Kidney Outcomes (00:25:23 – 00:40:52) Finerenone showed a modest reduction in albuminuria but did not significantly alter kidney disease progression. Initial declines in glomerular filtration rate (GFR) were noted but should not automatically lead to discontinuation of therapy. Mixed findings highlight the need for more research to understand its renal effects. Conclusion (00:40:54 – 00:44:05) The FINEARTS-HF trial was recognized as a landmark study, showcasing modest benefits of finerenone in a challenging patient population. The podcast calls for continued research to refine quality of life metrics, better understand obesity's role in HFmrEF/HFpEF, and explore finerenone's long-term renal and cardiovascular impacts.

In this episode, hosts Drs. Jason Silverman and Peter Lu sit down with Dr. Vicky Ng to discuss outcomes following pediatric liver transplantation beyond survival. In particular, we review the importance of hearing the patient voice using the PeLTQL, a disease-specific health related quality of life instrument. Dr. Ng is a Professor of Pediatrics at the University of Toronto, Medical Director of the Paediatric Liver Transplantation Transplant and Regenerative Medicine Centre at SickKids Hospital and current President of NASPGHAN. Learning objectives:To understand the benefits of developing a condition-specific health-related quality of life (HRQOL) tool using the Pediatric Liver Transplantation Quality of Life questionnaire (PeLTQL) as a model.To review pre- and post-transplant factors that may impact the HRQOL of pediatric liver transplant recipients.To explore the benefits of the patient (and caregiver) voices in truly understanding important patient outcomes.Links:Development and Validation of the Pediatric Liver Transplantation Quality of Life: A Disease-Specific Quality of Life Measure for Pediatric Liver Transplant RecipientsBarriers to ideal outcomes after pediatric liver transplantationFeasibility of using a patient-reported outcome measure intoclinical practice following pediatric liver transplantation: TheStarzl Network experienceJennifer Vittorio - Healthcare Transitions in Pediatric Liver Transplantation (Special JPGN Episode) - Position paperSupport the showThis episode may be eligible for CME credit! Once you have listened to the episode, click this link to claim your credit. Credit is available to NASPGHAN members (if you are not a member, you should probably sign up). And thank you to the NASPGHAN Professional Education Committee for their review!As always, the discussion, views, and recommendations in this podcast are the sole responsibility of the hosts and guests and are subject to change over time with advances in the field.Check out our merch website!Follow us on Bluesky, Twitter, Facebook and Instagram for all the latest news and upcoming episodes.Click here to support the show.

The December 2024 replay wraps up the year with five previously posted episodes on autoimmune neurology. The episode begins with Drs. Michael R. Wilson and John Pluvinage discussing transcobalamin antibodies. The episode leads into an interview with Dr. Andrew McKeon, who talks about paraneoplastic CAMKV autoimmune encephalitis. In the third episode, Dr. Maarten Titulaer discusses long-term outcomes and rehab in NMDAR encephalitis. The episode continues with Prof. Zsolt Illes discussing the mortality of patients with AQP4 antibody–seropositive neuromyelitis optica spectrum disorder compared with that in the general population. In the final episode, Drs. Marius Ringelstein and Ilya Ayzenberg discuss the effectiveness and safety of Eculizumab in routine clinical care. Podcast Links: Transcobalamin receptor Antibodies in Autoimmune Vitamin B12 Central Deficiency  Paraneoplastic CAMKV Autoimmune Encephalitis Long-Term Outcomes and Rehabilitation in Anti-NMDAR Encephalitis Mortality in a Danish NMO Cohort Eculizumab Use in Neuromyelitis Optica Spectrum Disorders Article Links: Transcobalamin Receptor Antibodies in Autoimmune Vitamin B12 Central Deficiency  Paraneoplastic Calmodulin Kinase-Like Vesicle-Associated Protein (CAMKV) Autoimmune Encephalitis  Long-Term Cognitive, Functional, and Patient-Reported Outcomes in Patients With Anti-NMDAR Encephalitis  Mortality of the Danish Nationwide AQP4 Antibody-Seropositive Neuromyelitis Optica Spectrum Disorder Patient Cohort  Eculizumab Use in Neuromyelitis Optica Spectrum Disorders: Routine Clinical Care Data From a European Cohort Disclosures can be found at Neurology.org.

In Folge #81 des PhysioBib Podcasts, in dieser Folge hatten wir Georg Supp zu Gast. Georg kennen vielleicht schon einige von euch aus Folge 15 unseres Podcasts. Wir haben vor knapp zwei einhalb Jahren schon einmal über das Thema Patient-reported Outcomes, kurz PROMs gesprochen, und damals war Georg gerade am Beginn der Entwicklung einer digitalen Plattform mit der man in der Physiotherapie, sehr einfach Outcome Daten von patient*innen erheben kann. Mittlerweile ist das Vorhaben ausgereift und Georg ist mit seinem Unternehmen Mophys gestartet, und wir haben in dieser Folge mal wieder eingecheckt, haben über die Entwicklungen im Bereich von PROMs gesprochen, welche Ziele Georg mit der Projekt verfolgt und wie man mit Mophys PROMs in seine Praxis implementieren kann. Das Projekt hat aus unserer Perspektive eine große Berufspolitische Bedeutung über die wir auch im Podcast sprechen. Viel Spaß bei der Folge!

Host: Charles Turck, PharmD, BCPS, BCCCP Guest: Stacy Finkbeiner, PhD Guest: Bill Cote To gain insights into how tardive dyskinesia (TD) can impact the physical, psychological, social, and professional lives of patients, the IMPACT-TD Registry incorporated feedback from patients and caregivers to create an effective questionnaire. These patient-reported measures are key to the overall management of TD as they enable us to better understand how TD affects each individual. To learn more about the patient-reported outcomes from the IMPACT-TD Registry, Dr. Charles Turck speaks with Dr. Stacy Finkbeiner and Mr. Bill Cote. Dr. Finkbeiner is US Medical Director at Teva Pharmaceuticals, and Mr. Cote is the Senior Director of the National Organization for Tardive Dyskinesia.

In this episode of the Award-winning PRS Journal Club Podcast, 2024 Resident Ambassadors to the PRS Editorial Board – Rami Kantar, Yoshi Toyoda, and Amanda Sergesketter- and special guest, Jeffrey Marcus, MD, discuss the following articles from the October 2024 issue: “Aesthetic Outcomes in Cleft Care: Exploring Patterns in Patient-Reported Outcomes across Adolescence” Dunworth, Hernandez, Ching, et al. Read the article for FREE: https://bit.ly/AdolescenceCleftCare Special guest, Dr. Jeffrey Marcus, is Professor and chief of the Division of Plastic, Maxillofacial, and Oral Surgery at Duke University. He obtained his medical degree at the University of Michigan followed by plastic surgery residency at Northwestern and fellowships in both pediatric plastic surgery and craniofacial surgery at the University of Toronto Sick Kids. His clinical interests focus on cleft and craniofacial surgery, facial paralysis, and rhinoplasty. He is the past president of the Rhinoplasty Society and the recipient of numerous grants and patents in craniomaxillofacial surgery. READ the articles discussed in this podcast as well as free related content: https://bit.ly/JCOct24Collection

JACI: In Practice Editor Michael describes the October 2024 issue, the theme of which is “Patient-Reported Outcomes and Patient-Centeredness in Allergy/Immunology”. Theme topics covered include general aspects of patient-reported outcome measures, specific patient-reported outcomes measures for asthma and other allergic diseases, patient satisfaction, patient-centered practice guidelines, and shared decision making. Dr. Schatz then presents the Highlights of the Original Articles in the issue, which are on the topics of asthma, drug allergy, food allergy, and health disparities.

Dr. Tesha Monteith discusses the Neurology article, "Effect of Ubrogepant on Patient-Reported Outcomes When Administered During the Migraine Prodrome: Results From the Randomized PRODROME Trial" by Richard B. Lipton and colleagues, available in the September 24th issue of Neurology or at neurology.org.  Show reference: https://www.neurology.org/doi/10.1212/WNL.0000000000209745

This week, Circulation is proud to present the 4th annual Disparities issue. First, Guest Editor Latha Palaniappan leads the interview with author Jennifer Green as they discuss the article "Effects of an Intervention to Improve Evidence-Based Care for People With Diabetes and Cardiovascular Disease Across Sex, Race, and Ethnicity Subgroups: Insights From the COORDINATE-Diabetes Trial." Then, Disparities Editor Mercedes Carnethon talks with author Benjamin Zielonka about his article "Childhood Opportunity and Acute Interstage Outcomes: A National Pediatric Cardiology Quality Improvement Collaborative Analysis." Finally, Dr. Karol Watson leads the discussion with author Lisa Cooper regarding her article "Equitable Care for Hypertension: Blood Pressure and Patient-Reported Outcomes of the RICH LIFE Cluster Randomized Trial." For the episode transcript, visit: https://www.ahajournals.org/do/10.1161/podcast.20240712.517573

This playlist features interviews recorded live by Oncology Data Advisor at the American Society of Clinical Oncology (ASCO) 2024 Annual Meeting in Chicago. Visit oncdata.com to learn more!

As the need and demand for quality care increases, time in clinic needs to become more efficient. Working smarter, not harder, is a daily challenge for all in our field. With mobile technology streamlining so much and improvements in patient reported outcome (PRO) collection among patients with rheumatoid arthritis (RA) needed, it had Dr. Daniel Solomon asking “...is there an app for that?”. Today, we review the study A Mobile Health Application Integrated in the Electronic Health Record for Rheumatoid Arthritis Patient–Reported Outcomes: A Controlled Interrupted Time-Series Analysis of Impact on Visit Efficiency , recently published in Arthritis & Rheumatology. Our guest, Dr. Daniel Solomon, is our guest and the study's first author. 

Incorporating Patient-Reported Outcomes in Oncology Research: Elaine Novakovich and Theresa Yu by i3 Health

Jennifer Petrillo Billet PhD is an Executive Director and Program Lead for investigational dalzanemdor, or SAGE-718, at Sage Therapeutics. She is responsible for driving the global development strategy, including delivery of the right evidence for key stakeholders including regulators, payers, and providers, and patients. Dalzanemdor is being evaluated for indications in Huntington's Disease, Alzheimer's Disease, and Cognitive Impairment in Parkinson's Disease. Jennifer has 20 years of deep expertise in the measurement science of Clinical Outcomes Assessments (COAs) and significant experience in all phases of drug development. Jennifer received her Bachelors in Economics at Virginia Tech, and her PhD from the London School of Hygiene and Tropical Medicine (LSHTM). She has published and presented extensively on health economics and outcomes research topics, and clinical research, across a range of leading journals and conferences.

Patient-reported outcomes (PROs) have become increasingly integral in healthcare for assessing the effectiveness of treatments from the patient's perspective. It sounds like a reasonable step in improving clinical research and care provision, but gathering data can be more difficult then you may think. It isn't easy to get to marginalized communities. There are language barriers in collecting data. There are cultural aspects that impact responses. So, how can you design useful electronic solutions for patient-reported outcomes? Hear from Mustafa Ali Syed, Researcher at the Manchester Academic Health Science Centre, The University of Manchester, and Ben James, Co-founder/Chief Design Officer at uMotif - ePRO, an engagement platform designed to power clinical and real-world research. Both are co-authors of a recently published paper titled Exploring the Cross-cultural Acceptability of Digital Tools for Pain Self-reporting. www.facesofdigitalhealth.com Newsletter: https://fodh.substack.com/ Show notes: 00:00:00 Why Do PROs Matter? 00:04:00 Evolution of Data Collection 00:06:00 Importance of Diversity in Clinical Trials 00:08:00 Ethnicity, Culture, and Pain Perception 00:12:00 The Role of Technology in PROs 00:14:00 Designing Inclusive Digital Solutions 00:20:00 Challenges in Engaging Targeted Populations 00:22:00 Language and Communication Barriers 00:26:00 The Future of PRO Research

Despite our technological advances in ACL surgery, the rehabilitation period remains challenging, particularly when it comes to lingering quadriceps weakness. Blood Flow Restriction (BFR) Therapy has been introduced as a potential means to speed up the return of quad function. We welcome Dr. Kelechi Okoroha from the Mayo Clinic to discuss his high-level study, “Effects of Perioperative Blood Flow Restriction Therapy Program on Early Quadriceps Strength and Patient-Reported Outcomes After Anterior Cruciate Ligament Reconstruction.” By utilizing BFR in both the pre- and post-operative periods following ACL reconstruction, Dr. Okoroha and his team did demonstrate a benefit in strength and patient reported outcomes.

In this episode, we discuss top abstracts in the myeloid space from the American Society of Hematology 2023 meeting with Dr. Anand Patel. Here are the abstracts that were discussed:1. TRANSFORM-1: A Randomized, Double-Blind, Placebo-Controlled, Multicenter, International Phase 3 Study of Navitoclax in Combination with Ruxolitinib Versus Ruxolitinib Plus Placebo in Patients with Untreated Myelofibrosis https://ash.confex.com/ash/2023/webprogram/Paper173509.html 2. MANIFEST-2: Pelabresib in Combination with Ruxolitinib for Janus Kinase Inhibitor Treatment-Naïve Patients with Myelofibrosis: Results of the MANIFEST-2 Randomized, Double-Blind, Phase 3 Study https://ash.confex.com/ash/2023/webprogram/Paper179141.html 3. Venetoclax + Decitabine vs 7+3 in AML https://ashpublications.org/blood/article/142/Supplement%201/970/503790/Comparing-the-Efficacy-and-Safety-of-Venetoclax 4. FILO study: Acute Myeloid Leukemia Patients Who Stopped Venetoclax or/and Azacytidine for Other Reasons Than Progression Have a Prolonged Treatment Free Remission and Overall Survival. https://ash.confex.com/ash/2023/webprogram/Paper185437.html  5. AUGMENT-101: Revumenib Monotherapy in Patients with Relapsed/Refractory KMT2Ar Acute Leukemia: Topline Efficacy and Safety Results https://ash.confex.com/ash/2023/webprogram/Paper172422.html 6. VEN+HMA in HR MDS: Safety, Efficacy, and Patient-Reported Outcomes of Venetoclax in Combination with Azacitidine for the Treatment of Patients with Higher-Risk Myelodysplastic Syndrome: A Phase 1b Study https://ash.confex.com/ash/2020/webprogram/Paper139492.html

In this episode, we talk about GVHD prophylaxis, including recent data on post-transplant cyclophosphamide and abatacept with Dr. Shernan Holtan from the University of Minnesota. Here are the key trials we discussed:1. BMT CTN 1203 trial: Three prophylaxis regimens (tacrolimus, mycophenolate mofetil, and cyclophosphamide; tacrolimus, methotrexate, and bortezomib; or tacrolimus, methotrexate, and maraviroc) versus tacrolimus and methotrexate for prevention of GVHD in allogeneic transplantation. https://pubmed.ncbi.nlm.nih.gov/30824040/ 2. BMT CTN 1703 study: Post-Transplantation Cyclophosphamide-Based GVHD prophylaxis  https://pubmed.ncbi.nlm.nih.gov/37342922/ 3. Patient-Reported Outcomes of BMT CTN 1703 https://ash.confex.com/ash/2023/webprogram/Paper187859.html 4. Phase II Study of Myeloablative 7-8/8-Matched Allotransplantation with Post-Transplantation Cyclophosphamide, Tacrolimus, and Mycophenolate Mofetil https://pubmed.ncbi.nlm.nih.gov/37311510/ 5. BMT CTN 1301 trial: Randomized Phase III BMT CTN Trial of Calcineurin Inhibitor-Free Chronic Graft-Versus-Host Disease Interventions in Myeloablative Hematopoietic Cell Transplantation for Hematologic Malignancies https://pubmed.ncbi.nlm.nih.gov/34855460/ 6. Phase II Trial of Costimulation Blockade With Abatacept for Prevention of Acute GVHD (ABA2) https://pubmed.ncbi.nlm.nih.gov/33449816/ 7. Aurora Kinase a Inhibition for Gvhd and Relapse Prevention after Allogeneic HCT: Phase I Trial in Combination with Ptcy/Sirolimus https://ash.confex.com/ash/2023/webprogram/Paper181292.html

In this podcast, Nirmish Shah, MD, discusses patient involvement and the use of patient-reported outcomes in the development of sickle cell disease interventions. Dr Shah's team presented research on this topic titled “Development of a Patient Reported Outcome Daily Diary to Assess Symptom Burden in Sickle Cell Disease” at the American Society of Hematology's 2023 annual meeting in San Diego, CA.

Commentary by Associate Editor Paul Heidenreich

According to the CDC, 36 million falls are reported each year, resulting in 3 million adults being transported to the Emergency Room and 32,000 adults dying from their falls. Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and 30% fall multiple times. As falls at home are common, occupational therapist Tracy Carrasco joins me to share tips and strategies for making your home safe and accessible. We're also sharing a research roundup featuring results from a few different clinical trials that are focused on the impact of diet on MS. And that includes the Swank diet, the Wahls diet, the Mediterranean diet, and a simple low-fat diet. We'll tell you about a novel study that explored the economic impact of an Epstein-Barr Virus vaccine on the cost of MS care in Australia. If you're living with MS, we have your invitation to participate in the Patient Reported Outcomes for Multiple Sclerosis (PROMS) initiative survey. And we'll tell you how you can catch the video replay of the International Progressive MS Alliance global webcast on research and treatment for cognitive challenges in progressive MS. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Some of the things I'm thankful for  :22 Research Roundup: The impact of diet on MS  2:40 Survey results show how an EBV vaccine could impact the cost of MS care in Australia  9:03 If you're living with MS, here's your invitation to participate in the PROMS initiative online survey  12:22 How to catch the video replay of the International Progressive MS Alliance global webcast about research and treatment for cognitive challenges in progressive MS 13:38 Tracy Carrasco shares tips for making your home safe and accessible 15:25 Share this episode  27:26 Have you downloaded the free RealTalk MS app?  27:46 SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: https://realtalkms.com/325 ADD YOUR VOICE TO THE CONVERSATION I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts! Email: jon@realtalkms.com Phone: (310) 526-2283 And don't forget to join us in the RealTalk MS Facebook group! LINKS If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com STUDY: A Low-Fat Diet Improves Fatigue in Multiple Sclerosis: Results from a Randomized Controlled Trial https://journals.sagepub.com/doi/10.1177/13524585231208330 STUDY: Diet-Induced Changes in Functional Disability are Mediated by Fatigue in Relapsing-Remitting Multiple Sclerosis: A Secondary Analysis of the WAVES Randomized Parallel-Arm Trial https://journals.sagepub.com/doi/full/10.1177/20552173231209147 STUDY: Exploring the Cost-Effectiveness of EBV Vaccination to Prevent Multiple Sclerosisin an Australian Setting https://jnnp.bmj.com/content/early/2023/11/02/jnnp-2023-332161 PARTICIPATE: The PROMS Initiative Survey https://proms-initiative.org/survey-proms VIDEO: Cognitive Challenges in Progressive MS https://youtube.com/watch?v=bN26GrRZMts Join the RealTalk MS Facebook Group https://facebook.com/groups/realtalkms Download the RealTalk MS App for iOS Devices https://itunes.apple.com/us/app/realtalk-ms/id1436917200 Download the RealTalk MS App for Android Deviceshttps://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk Give RealTalk MS a rating and review http://www.realtalkms.com/review Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com. RealTalk MS Episode 325 Guest: Tracy Carrasco Privacy Policy

Host Liana Tedesco, MD Guest interviewee Melissa Wright, MD, discussing her clinical practice guideline “Summary on the Treatment of Clavicle Fractures” from the September 15, 2023 issue (https://journals.lww.com/Jaaos/toc/2023/09150) Articles summarized from the September 1, 2023 issue (https://journals.lww.com/Jaaos/toc/2023/09010) Review article “Applications of Augmented Reality in Orthopaedic Spine Surgery” Research article “The Influence of Workers' Compensation Status on Patient-Reported Outcomes after Cervical Disc Arthroplasty at an Ambulatory Surgical Center” Article summarized from the September 15, 2023 issue (https://journals.lww.com/Jaaos/toc/2023/09150) Research article “Fellowship-Trained Orthopaedic Trauma Surgeons Achieve Better Postoperative Radiographic Parameters After Intramedullary Nailing of Intertrochanteric Femur Fractures when Compared With Non-trauma–Trained Surgeons” Follow this link to download these and other articles from the September 1, 2023 issue of JAAOS (https://journals.lww.com/Jaaos/toc/2023/09010) and the September 15, 2023 issue of JAAOS (https://journals.lww.com/Jaaos/toc/2023/09150). The JAAOS Unplugged podcast series is brought to you by the Journal of the American Academy of Orthopaedic Surgeons and the AAOS Resident Assembly.

In a world where patients were often lost in a sea of opinions, Dr. Karthik Anantharaman dared to dream of a different reality. Little did he know, his journey to improve patient outcomes would take an unexpected turn. As he delved into the world of data, he discovered a powerful tool that could unlock the potential of personalized medicine. But what he didn't anticipate was the profound impact it would have on not just individual patients, but on the entire healthcare ecosystem. With every step he took, the possibilities seemed endless, leaving us wondering: What other surprises lay hidden in the realm of data-driven patient care?Episode Timeline:[00:04:26] - Putting Patients First[00:07:25] - Leveraging Technology[00:12:05] - Telehealth Services[00:15:59] - Global Expansion[00:17:13] - The Importance of Tracking and Analyzing Teleconferencing[00:19:32] - Leveraging Data for Personalized Medicine[00:21:49] - The Power of Data in Generating Insights[00:23:19] - Patient Reported Outcomes and Technology[00:28:27] - Contacting Apollo Hospitals‌Links:Dr. Karthik Anantharaman:  https://in.linkedin.com/in/karthikanantharamanReady to magnify your HealthTech journey's impact?Tune in

In a world where patients were often lost in a sea of opinions, Dr. Karthik Anantharaman dared to dream of a different reality. Little did he know, his journey to improve patient outcomes would take an unexpected turn. As he delved into the world of data, he discovered a powerful tool that could unlock the potential of personalized medicine. But what he didn't anticipate was the profound impact it would have on not just individual patients, but on the entire healthcare ecosystem. With every step he took, the possibilities seemed endless, leaving us wondering: What other surprises lay hidden in the realm of data-driven patient care? Episode Timeline: [00:04:26] - Putting Patients First [00:07:25] - Leveraging Technology [00:12:05] - Telehealth Services [00:15:59] - Global Expansion [00:17:13] - The Importance of Tracking and Analyzing Teleconferencing [00:19:32] - Leveraging Data for Personalized Medicine [00:21:49] - The Power of Data in Generating Insights [00:23:19] - Patient Reported Outcomes and Technology [00:28:27] - Contacting Apollo Hospitals ‌Links: Dr. Karthik Anantharaman:  https://in.linkedin.com/in/karthikanantharaman Ready to magnify your HealthTech journey's impact? Tune in

"It's July 2022. This morning I tried to donate my kidney, this afternoon the transplant team told me that I can't, I have cancer." Words no one wants to hear. Even for a former Jeopardy! champion with degrees in molecular biology and two decades of experience in the biopharma industry, the implications of the phrase are overwhelming.Nearly a year later, our flagship podcast host Jeff Stewart is telling his story.Today, Nick Kenny, Chief Scientific Officer at Syneos Health, turns the tables on Jeff, interviewing him on his recent experience being diagnosed and undergoing treatment for two separate cancers. They discuss the realities today for patients like Jeff who are dealing with complex cancer diagnoses—including information overload both fake and real, and the importance of “pre-bunking”—and his newly released book, Living: Inspiration from a Father with Cancer.At a time when regulators in our industry at large are increasingly and rightly focused on patient perspectives in drug development, and with ASCO, the single largest global gathering of about 50,000 clinical cancer experts right around the corner in early June, this is a very timely discussion.Read excerpts of the book on NPR.Check out our other content on the patient experience:Webinar: Patient Perspectives as Essential in Next-Generation Clinical TrialsExploring the Value and Impact of Patient-Reported Outcomes in Patient-Centric CAR-T Clinical Trials3 Ways Patient Voice is Impacting Rare Disease Research, According to AdvocatesThe views expressed in this podcast belong solely to the speakers and do not represent those of their organization. If you want access to more future-focused, actionable insights to help biopharmaceutical companies better execute and succeed in a constantly evolving environment, visit the Syneos Health Insights Hub. The perspectives you'll find there are driven by dynamic research and crafted by subject matter experts focused on real answers to help guide decision-making and investment. You can find it all at insightshub.health. Like what you're hearing? Be sure to rate and review us! We want to hear from you! If there's a topic you'd like us to cover on a future episode, contact us at podcast@syneoshealth.com.

Commentary by Dr. Valentin Fuster

Chadi hosts a duo of Canadiens to discuss quality of life and patient-reported outcomes in clinical trials: Christopher Booth, MD, and Michael Brundage, MSc, FRCPC, MD, both of Queen's University. They begin by pontificating on whether quality of life is a “must” endpoint in designing interventional clinical trials today, the timeline of how “PROs” came to be a term and an important component of clinical trials, how PRO measures should differ across disease types and trials, and how PROs should be approached from an organizational and operational standpoint. Then, they discuss and use examples to illustrate how practical it is for providers to regularly measure quality of life and PROs, how payers should be approached for discussion on PRO measures, whether toxicity of therapies are underestimated by providers, and a whole lot more. Check out Chadi's website for all Healthcare Unfiltered episodes and other content. www.chadinabhan.com/ Watch all Healthcare Unfiltered episodes on Youtube. www.youtube.com/channel/UCjiJPTpIJdIiukcq0UaMFsA

In this episode of the Award-winning PRS Journal Club Podcast, 2023 Resident Ambassadors to the PRS Editorial Board – Rami Kantar, Yoshi Toyoda, and Ronnie Shammas- and special guest Nicholas Haddock, MD, discuss the following articles from the April 2023 issue: “Paravertebral Blocks in Tissue Expander Breast Reconstruction: A Propensity-Matched Analysis of Perioperative Opioid Consumption and Patient-Reported Outcomes” by Shamsunder, Chu, Taylor, et al. Read the article for FREE: https://bit.ly/ParavertebralBlock Special guest Nicholas Haddock, MD, is a microsurgeon who completed his residency training at NYU, followed by a microsurgery fellowship at the University of Pennsylvania. He is an Associate Professor in the Department of Plastic Surgery and the Department of Orthopedic Surgery at UT Southwestern Medical Center and is a pioneer in microsurgical breast reconstruction and efficiency in breast reconstructive surgery. He also serves as an Associate Editor for the Plastic and Reconstructive Surgery Journal. READ the articles discussed in this podcast as well as free related content from the archives: https://bit.ly/JCApril23Collection

At the recent American Society of Clinical Oncology (ASCO) Genitourinary (GU) Cancers Symposium, Dr. Lisa Gudenkauf, an Applied Research Scientist at Moffitt Cancer Center, presented her team's research regarding the Functional Assessment of Cancer Therapy—Radionuclide Therapy (FACT-RNT), a novel patient-reported outcomes (PRO) measure for patients with prostate cancer. In this follow-up interview, Dr. Gudenkauf shares more about how the measure was developed, its importance for capturing the patient experience, and its future implementation into both clinical practice and trials.

Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments. Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson's research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of “Brain Friends”, a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community. Listener Take-aways In today's episode you will: Learn how health disparities may influence aphasia outcomes and why more research is needed   Discover why "Brain Friends" is another podcast you'll want to add to your playlist.   Gain practical tips on how to build confidence in intercultural interactions with your clients   Hear how health-related quality of life (HRQL) measures can help  inform your clinical practice   We'd like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript. Show notes edited for conciseness Ellen Bernstein-Ellis (EBE) EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend's episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina? DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, “Hey, can I record some of these, and maybe we do like a podcast?”, and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders. EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, “provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race.” I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too. SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly. EBE: I'm going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it.  When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association's Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was. I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next? SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, “what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do.” And he said to me, “Stop complaining kiddo, and go back and get your PhD.” Admittedly, when he said it, it was kind of like, “okay fine, I'll go do it.” I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see. EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as “personally motivated.” Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients' access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward.  Do you want to share some of the points  gathered for that doctoral committee to help support why this research is so important? SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing. And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through. EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let's start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL. SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do. EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs? SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold. EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors? SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer. The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy. The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient. EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it's “imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care.” That's what we want to do. SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out. EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called “Patient-Reported Outcomes and Performance Measurement.” (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You've been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing. SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way. EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we'd put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website? SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start. EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper?  I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work. SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of. EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there? SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression. EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an ongoing journey as a speech-language pathologist to build that skill set. SELES GADSON: And shameless plug, I think our episode six of Brain Friends is a mental health episode. I have one of my good girlfriend colleagues there who is a counseling psychologist. She shares with us helping skills for the practitioner, and we share on that episode10 skills that you can do as a clinician to support the person with aphasia. EBE: Thank you for sharing that. That's really important. And again, the link to Brain Friends will be in our show notes. Let's take a moment and talk about how you connect this finding about depression to the role of social communication, because you said it was those scores that were down in your measure. SELES GADSON: With that particular study or overall? EBE: However you'd like to discuss it. I'm opening that door to you. SELES GADSON: One of the things that we were seeing is that individuals were reporting the depression within this Communication HRQL domain. So even though we didn't dive into it too deep in this study, it was more of the correlation and recognizing that individuals that were reporting this higher level of depression, also have this higher level, or this lower report of communication HRQL, making those links specifically. I do have something that I'm working on right now, that will completely answer that question a little bit more solidly. I don't want to speak too much on this, so stay tuned. EBE: Absolutely staying tuned, there's no question. You also had another article that I found intriguing-- An article with your coauthors, Wallace, Young, Vail, and Finn, a 2021 article that examined the relationship between HRQL, perceived social support, and social network size in Black Americans with aphasia. And that paper highlights that there's been little research exploring HRQL in Black Americans. Of the five factors that comprise HRQL, why did you decide to focus on social functioning? And specifically social support and social network in this study? SELES GADSON: Well, that really came from the literature. One of the things that the literature said is that we knew that social HRQL contributed in some way, but we weren't sure what way. And we weren't sure what pieces of social functioning contributed. My apologies to the researcher who said it, but it set me up perfect for my dissertation work to say, “this is why I'm looking at social functioning in these two specific pieces,” because we didn't know. Was it social participation? Was it social network? Was it social support? That was one of the reasons why I wanted to pull out those two specific pieces. The other thing that was really important about this work was that it was the first study that really looked at what HRQL looked like in Black stroke survivors. We didn't know any of that. And so for me, it was really important to compare Black stroke survivors to normal aging Black individuals because I feel that for us to really get baseline understanding of what some of these factors are and how individuals respond in recovery, we have to compare them to their norm, or to other members in their community that look like them before comparing between Black and white or any other ethnic groups. This study is where we found that in terms of HRQL, the main difference between stroke survivors with and without aphasia and in our normal aging individuals, was that communication was the impairment. And then, with the social network and social support, we weren't seeing a difference between this homogenous group of Black people in those areas. EBE: That takes me to my next question, your research noted that the Black survivors with and without aphasia, have smaller social networks compared to white stroke survivors. That's the data that we have based on that social network data. Even though you weren't trying to compare in this study, per se, you still made sense of that finding-- trying to make sure that we don't make assumptions, and instead look at different factors that could be at play. How did you make sense of that finding, the smaller network? SELES GADSON: It was two things that allowed us to make sense of that finding. One was recognizing that in both groups, the stroke survivors with aphasia and our normal aging individuals, that because they were age matched, it could have been a factor of age--meaning that the individuals receiving the support quality and then their network, everyone was kind of in the same age group, and so, it was more of a factor of time of life versus actual culture. But then a lot of that came through in some of the anecdotal reports, and things that we even circled on the scale that we used--we use the Lubben Social Network Scale. With some of those questions, one might be how many people do you feel comfortable sharing personal details with? And often times, we got this report of “just my husband”, or “only God”. And so, we were seeing that some of this really related to the traditional and cultural values in Black Americans, where you're not going to share a lot of stuff with a lot of people. You have your set group, your small network. And that's okay. That doesn't mean that you're isolated.  EBE: I think another point you make, and maybe even thinking back to the ASHA Voices Podcast, why it's particularly important to target social communication. That is yet another life participation core concept. Do you want to speak to that for a moment? SELES GADSON: I think the thing that we have to realize with social communication is that individuals, especially within the black community, they are social, they want to talk, they want to get back to doing and interacting with their community. And so, one of the things that that looks like is maybe being able to participate again in Bible study or being able to stand up and read a scripture. And the only way that you know that, is by asking them that on a patient-reported outcome. I think that that's where that social communication piece is coming in. One of the things that I'm seeing with the Black aphasia group is that moment, that hour, where everyone is together, it's amazing. It's them using social communication. You spoke about how I said that that energized my research, and that was why--because I was on this call, and they were speaking about these things, that sometimes I feel like I have to explain to the powers that be why social communication or the LPAA approach is important. But here I was talking with all of these survivors, and they were telling me, I want to be able to communicate, I want to be able to do these things. It just really confirmed for me that this type of research, we were on the right path. EBE: Right. And this is my chance for a “shameless plug” because of my life work, and that is just the power of groups. The power of groups is amazing. SELES GADSON: You know, your life work and... EBE: Well, we don't want to go there, this episode is about you. SELES GADSON: Okay. I'm telling you; I'll get into just how influential your work has been, even when I was working as a practitioner and doing group therapy, it was your work and your research that I was going to. EBE: Well, I had the honor of getting to work with Dr. Roberta Elman, and starting the Aphasia Center of California and doing that initial research, that has been such a gift to me, so, but thank you, back to your work now. That's a great transition, because I'm going to bring us to your 2022 study, looking at how aphasia severity is modulated by race and lesion size in chronic survivors. That was an amazing study. I'm going to read another quote here from that study. And that is, “understanding the origin of disparities in aphasia outcomes is critical to any efforts to promote health equity among stroke survivors with aphasia.” You said this work led you to an “Aha!” moment. And I'd love for you to share more about that moment, and about this study. SELES GADSON: Yes, this was one of my babies, I would say it was definitely a labor of love. And it's been well received. One of the things that led us to this study was that we were already aware of what the research was saying, in regards to the narrative of Black stroke survivors having these lower scores, they were having poor functional outcomes, longer hospital stays. I really wanted to understand what components neurologically, were playing into that. The research has shown that Black Americans often may have a larger stroke due to a myriad of factors-- delayed hospital arrival, not being able to receive TPA. But I wanted to know what factors neurologically were contributing to what we were seeing, not only in this baseline difference that we were seeing, but what was the bigger picture essentially. What we found was that when we looked at race and lesion size, when we did an interaction of race and lesion size, that Black and white survivors with small lesions performed similarly. But larger strokes resulted in more severe aphasia for Black people, than white people. And that was something that we didn't quite understand, because if you think about it, the larger the lesion, the poorer your aphasia should be. But in this case, the larger the lesion, the white stroke survivors were performing better and so we offered two reasons for that. One was the potential assessment bias-- that maybe with the larger stroke, there was this code-switching element that the Black stroke survivors just weren't able to do. And we were seeing that in the larger strokes, and it wasn't being picked up in the smaller strokes. Then the other was the disparity that I had mentioned earlier, which is that access to rehabilitation. It might have been more evident-- we were seeing some of those disparities in the larger strokes. We know that individuals that come from higher earning SES groups have greater access to rehabilitation services like speech and language. That was our other reason, that we were wondering if that's why we were seeing that outcome. EBE: This reminds me some of the research that Dr. Charles Ellis has been doing. I attended his keynote speech at the IARC conference in 2022 that talked about understanding what is happening upstream, because it's going to impact what's happening downstream. In terms of health disparities, it's going to have an impact. I think your research supports that. We need to learn more about it and do the research you're doing. As you reflect on your findings across these amazing studies, this research that you've been doing, can you offer to our listeners some tips on how to have more confidence with intercultural contact? SELES GADSON: That's a great question. I think the first thing that that you have to do is put yourself in places where you are connecting with people that don't look like you. EBE: I agree. And that can be hard and challenging to do. SELES GADSON: It can be, but one of the things that I say is that it goes back to some of the things that Dr. Ellis has talked about, which is being intentional. That might mean going to a different side of the neighborhood to support a Black owned business, and being within that space, to feel how it feels to be around different cultures. The other thing that I think is really important, and it comes out of literature that looks at reducing racial bias in health care, which is to avoid stereotype suppression. So oftentimes, people may be thinking something and they don't want to share it, or they try to suppress it. And the reason why that's negative is because stereotype is a cognitive organization strategy that we use. And where it becomes negative is that if you're having these stereotype ideas, or you're just not sure, if you're not able to express them within a space that you feel comfortable with, then you suppress them. And then it kind of comes out in therapy. And so, I think that those are two huge things. And then the last thing that I would say is that it's really important to build partnerships. And so, building partnerships, either with local churches, within the university area, or just seeing how you can serve in order to help create some of that confidence. But you have to put yourself out there and not wait until therapy day. EBE: Wow, thank you for those tips. And one of them reminded me of something, a tip that a local educator suggested that, even if you don't feel like you're in an environment where your everyday social context might put you with people who look different from you, that you can still listen to other voices by listening to podcasts, sign up for podcasts, sign up for Twitter feeds of people with different voices, so you can start being present to that conversation. So that was something that I have found useful and really good advice as well. SELES GADSON: So true. The other thing that I did, even someone who identifies as a Black American when I was doing my dissertation work, and previously before some other things in my career, I noticed that perspective taking was a huge piece--putting myself or imagining myself in the individual's shoes. And so, for me, that meant that I went to Black museums and exposed myself to different cultural experiences. I wasn't going into some of these spaces, whether it was collecting data or even working with individuals from other earning communities, with some type of privilege. So even in that sense, I wanted to make sure that I checked my privilege as well by doing that perspective taking. EBE: Thank you,. And this discussion could keep going, but I know our time is getting tight here. This whole effort that you put in your research of looking at HRQL measures reminds me of some of the work that I've really admired by Hilari and you had a wonderful story you could share about her, your interaction and your use of her work. Would you like to share that quickly? SELES GADSON: Oh, she's so awesome. I was sharing how when I first was diving into this literature, her work was one of the pieces that I found, the Stroke and Aphasia Quality of Life Scale. I reached out to her and she shared this scale. And a couple of years later, I attended the International Aphasia Rehabilitation Conference in London. And she sat down with me. I asked her if she had any time, if we could just talk, and she was so welcoming. We sat down, and she might not even remember this, but even in that moment of us being able to talk about these things that we were both so passionate about, she just really spoke to me and encouraged me. And it's so funny, because now as I publish and do different things, my mom always says, “you gonna be just like Dr. Hilari.” EBE: Let's just do a shout out for mentorship, for people who take the time, and feel committed and passionate. Again, we're using that word again today, passionate, to support the new voices that are coming into the field. So that's the gift of mentorship. And in this whole discussion, you and I also talked about how important it is to be inclusive, and we talked about how HRQL measures sometimes are harder to use with people with severe aphasia and how they can get excluded from research. It's hard enough to get people with aphasia into the research, right? There's work by Shiggins and her colleagues looking at how often people with aphasia are excluded. But you made a good point about ways that we can include people with more severe aphasia. Do you want to mention that? SELES GADSON: I think one of the things that we have at our fingertips, and we know just from our training, is to use different visual cues to support those individuals that might have more severe aphasia. One of the things that we highlighted in the 2020 paper looking at the psychometric properties of quality of these patient reported outcomes, was that there are certain assessments that are perfect for individuals with severe aphasia, assessments like the Assessment for Living with Aphasia (ALA), because it has the pictures available and it has simple language. Just recognizing that even by using some of these compensation tools, whether it's pictures or modifying the language, we can still get the individual's perspective of what they want in therapy just by using some of these modifications. EBE: This reminds me, I can put one more link and resource into the show notes, because the Center for Research Excellence in Aphasia offers this wonderful speaker series. And there was just an excellent recent session by Dr. Shiggins on including people with aphasia in research. So, I'll put that link in. I want everybody to listen to that presentation. And finally, as our closing question for today, Davetrina, if you had to pick only one thing we need to achieve urgently as a community of providers, of professionals, what would that one thing be? SELES GADSON: I think we have to start using patient-reported outcomes. I think that if you were doing a clinician-reported outcome to assess the impairment, paired with that has to be some level of patient-reported outcome that will give you insight into what the patient wants to do. It's no longer optional. I think that we have to make it a paired thing with our clinician-reported outcome, is getting the perspective of the patient. EBE: I so agree with you, thank you. Thank you for this wonderful interview today. I really, really appreciate it. SELES GADSON: Thank you. EBE: And I want to thank our listeners for listening today. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. And there, you can also become a member of this organization. Browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Ellen Bernstein Ellis and thank you again for your ongoing support of aphasia access. References and Resources Brain Friends Podcast: https://www.aphasia.org/stories/brain-friends-a-podcast-for-people-with-aphasia/ https://www.facebook.com/groups/1563389920801117 https://open.spotify.com/show/5xgkrhUhEIzJgxpRXzNpBH   Centers for Disease Control and Prevention (CDC) HRQL website: https://www.cdc.gov/hrqol/concept.htm     National Aphasia Association  Black American Conversation group registration: The Black American Aphasia Conversation Group meets through Zoom every other Monday at 4:00pm EST (1:00pm PST) . If you are interested in joining this group, please complete the form https://docs.google.com/forms/d/e/1FAIpQLSfJN9VWjrujhebT8Z48bqDZePOHYotipFC34S8T0X8_o8rG-g/viewform Patient Reported Outcome Measurement System (PROMIS) https://www.promishealth.org/57461-2/   Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. . Research Triangle Park (NC): RTI Press; 2015 Sep. Publication No.: RTI-BK-0014-1509ISBN-13: 978-1-934831-14-4  https://www.ncbi.nlm.nih.gov/books/NBK424378/   Gadson, D. S., Wallace, G., Young, H. N., Vail, C., & Finn, P. (2022). The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study. Topics in Stroke Rehabilitation, 29(3), 230-239.   Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.   Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728.   Gadson, D. S., Wesley, D. B., van der Stelt, C. M., Lacey, E., DeMarco, A. T., Snider, S. F., & Turkeltaub, P. E. (2022). Aphasia severity is modulated by race and lesion size in chronic survivors: A retrospective study. Journal of Communication Disorders, 100, 106270   Gray, J. D. (2022). Transcript: ASHA Voices: Confronting Health Care Disparities. Leader Live. https://leader.pubs.asha.org/do/10.1044/2021-0902-transcript-disparities-panel-2022   Law, B. M. (2021). SLP Pioneers Research on Aphasia Rehab for African Americans. Leader Live https://leader.pubs.asha.org/do/10.1044/leader.FTR4.26092021.58   Lubben, J., Gironda, M., & Lee, A. (2002). Refinements to the Lubben social network scale: The LSNS-R. The Behavioral Measurement Letter, 7(2), 2-11.   Shiggins, C., Ryan, B., O'Halloran, R., Power, E., Bernhardt, J., Lindley, R. I., ... & Rose, M. L. (2022). Towards the consistent inclusion of people with aphasia in stroke research irrespective of discipline. Archives of Physical Medicine and Rehabilitation, 103(11), 2256-2263.   Shiggins, C.  (2023) The road less travelled: Charting a path towards the consistent inclusion of people with aphasia in stroke research.  Aphasia CRE Seminar Series  #36 (Video) https://www.youtube.com/watch?v=sqVfn4XMHho

In this week's episode, we'll be looking at a paper recently published in “ACR Open Rheumatology” titled: “Machine Learning Applied to Patient-Reported Outcomes to Classify Physician-Derived Measures of Rheumatoid Arthritis Disease Activity“. This study used machine learning tools to investigate whether longitudinal patient-reported outcome data can be a proxy for Clinical Disease Activity Index (CDAI), presenting interesting findings that may impact the practice of rheumatology.  Our guest this week is the paper's first author, Dr. Jeffrey Curtis. Dr. Curtis is the Marguerite Jones Harbert – Gene V. Ball Endowed Professor in Rheumatology and Immunology at the University of Alabama at Birmingham. He has many accolades to his name, including being a prior winner of the Henry Kunkel Young Investigator Award and being a member of the American Society for Clinical Investigation. 

Dr. Baumhauer is a tenured Professor and serves as the Senior Associate Dean of Academic Affairs for the University of Rochester School of Medicine and Dentistry. She also is the Associate Chair of Academic Affairs within the Department of Orthopaedics at the University of Rochester. In addition to providing clinical care and performing surgery, she holds the position as the Director of the Clinical Health Informatics Core for the UR Healthcare System and is a board of director of Accountable Health Partners, ACO for the Rochester Region. She received her Doctorate of Medicine from the University of Vermont College of Medicine. She completed orthopaedic residency at the Medical Center Hospital of Vermont and a Fellowship in Foot and Ankle Surgery at the Medical College of Wisconsin. She also completed a Masters in Public Health degree from the University of Rochester. Dr. Baumhauer is the past president of the American Board of Orthopaedic Surgery, American Orthopaedic Foot and Ankle Society (AOFAS), and Eastern Orthopaedic Association. She currently is the President of the Patient-Reported Outcomes Measurement Information System (PROMIS) Health Organization and has published over two hundred peer reviewed papers and book chapters. In Part 2, Dr. Baumhauer described research showing that patients who were able to report at times that were important to the patient ended up visiting the emergency room less and were experiencing more favorable outcomes. She discussed how data are used. The first time seeing a patient, it is important to know what their baseline values are, e.g., mild depression and moderate symptoms for physical function and pain. Trends can be noted that make it possible before meeting with a patient to look at the PROMIS scores and be able to anticipate how much time to spend with this individual. It enables the physician to triage, which patients appreciate. Patients also are asked anchoring questions, such as general health status questions that make it possible to link the medical visit. An example is are you worse, better, or the same since your last visit? Another question is can you live with your symptoms? She also discussed how patients can ask questions, such as whether there will be substantial improvement as a result of surgery. If such an outcome is unlikely, surgery should not occur. Another question patients ask is which of various treatment options should be selected? It is important to know what the patient wants to measure.

Dr. Baumhauer is a tenured Professor and serves as the Senior Associate Dean of Academic Affairs for the University of Rochester School of Medicine and Dentistry. She also is the Associate Chair of Academic Affairs within the Department of Orthopaedics at the University of Rochester. In addition to providing clinical care and performing surgery, she holds the position as the Director of the Clinical Health Informatics Core for the UR Healthcare System and is a board of director of Accountable Health Partners, ACO for the Rochester Region. She received her Doctorate of Medicine from the University of Vermont College of Medicine. She completed orthopaedic residency at the Medical Center Hospital of Vermont and a Fellowship in Foot and Ankle Surgery at the Medical College of Wisconsin. She also completed a Masters in Public Health degree from the University of Rochester. Dr. Baumhauer is the past president of the American Board of Orthopaedic Surgery, American Orthopaedic Foot and Ankle Society (AOFAS), and Eastern Orthopaedic Association. She currently is the President of the Patient-Reported Outcomes Measurement Information System (PROMIS) Health Organization and has published over two hundred peer reviewed papers and book chapters. Part 1:  Data are needed to help understand how a patient is feeling and functioning to implement preventive health strategies, maximize healthy behaviors, assess their treatment response, and understand how health care resources are being allocated. Dr. Baumhauer defined a patient reported outcome as information directly reported by the patient who experiences it and is not interpreted as when we usually obtain some health history and tell it in our terms and report it into the patient's note. She provided examples of the disconnect between what is important to the patient and what the clinician believes is important for the patient. A validated number can be placed on how the patient is feeling and functioning. It is important that a validated instrument be used that is quick and does not hold up the clinician. At the University of Rochester, they landed on the use of PROMIS (Patient-Reported Outcomes Measurement Information System) on a custom platform called UR VOICE (Validated Outcomes in Clinical Experience). They collect the same information for each patient. They try to ask the right questions when the information is needed most. The aim is to be domain specific, such as symptom-based, using the core package of pain, physical function, and depression rather than focusing on various diseases. Depending on the medical specialty, the symptoms emphasized can be different. Compared to SF-36, PROMIS is a better measure since it is more responsive to change.

On this episode of WOCTalk, we sit down with Renee Malandrino, MSN, RN, CWOCN, Margaret Goldberg, MSN, RN, CWOCN, and Lisa Peacey, BSN, RN, NSWOC, three of the authors of the WOCNext® 2022 ePoster, “Patient Reported Outcomes on Living with an Ostomy: Reporting on Three Years of Data.” Renee, Margaret, and Lisa discuss the Observational Study of Ostomy Consumers (OSO™) registry, the registry collection tools, and their thoughts on the current OSO registry survey results. The OSO registry provides an opportunity to collect prospective, observational, patient-reported outcomes data and explore the experiences of living with an ostomy over a 5-year period. This information will aid in directing future research to support or challenge current knowledge and therefore guide future clinical practice, clinical research, and new product innovations.This podcast episode is supported by an educational grant from Hollister Incorporated. The WOCN® Society does not endorse specific products and services. Episode Resources:Click here to read the Wound Management & Prevention Original Research article, “Methods and Initial Findings of the Observational Study of Ostomy Consumers Registry”Click here to visit the online Hollister Product selectorClick here to view the WOCNext 2022 abstract, “Patient Reported Outcomes on Living with an Ostomy: Reporting on Three Years of Data.”Click here to view the interactive ePoster and author video from WOCNext 2022Click here to view all WOCNext 2022 accepted abstracts and ePostersClick here to view the Peristomal Skin Assessment Guide for CliniciansClick here to view the Peristomal Skin Assessment Guide for Consumers (English)  Click here to view the Peristomal Skin Assessment Guide for Consumers (Spanish)  

Join Drs Cohen and Gibofsky as they step through a case of refractory psoriatic arthritis, discuss novel therapeutics, review latest clinical trials, and talk about the future in psoriatic arthritis. Relevant disclosures can be found with the episode show notes on Medscape (https://www.medscape.com/viewarticle/970786). The topics and discussions are planned, produced, and reviewed independently of advertiser. This podcast is intended only for US healthcare professionals. Resources Psoriatic Arthritis Workup https://emedicine.medscape.com/article/2196539-workup#c6 GRAPPA Treatment Recommendations: 2021 Update https://www.jrheum.org/content/49/6_Suppl_1/52.long Methotrexate in Psoriasis and Psoriatic Arthritis https://www.jrheum.org/content/96/31 Psoriatic Arthritis Medication https://emedicine.medscape.com/article/2196539-medication#4 Effect of Secukinumab on the Different GRAPPA-OMERACT Core Domains in Psoriatic Arthritis: A Pooled Analysis of 2049 Patients https://www.jrheum.org/content/47/6/854 Three JAK Inhibitors Get Boxed Warnings, Modified Indications https://www.medscape.com/viewarticle/958024 Effect of Tofacitinib on Patient-Reported Outcomes in Patients With Active Psoriatic Arthritis and an Inadequate Response to Tumour Necrosis Factor Inhibitors in the Phase III, Randomised Controlled Trial: OPAL Beyond https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6340607/ Upadacitinib in Patients With Psoriatic Arthritis and an Inadequate Response to Non-biological Therapy: 56-Week Data From the Phase 3 SELECT-PsA 1 Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8524381/ Multicentre, Randomised, Open-Label, Parallel-Group Study Evaluating the Efficacy and Safety of Ixekizumab Versus Adalimumab in Patients With Psoriatic Arthritis Naïve to Biological Disease-Modifying Antirheumatic Drug: Final Results by Week 52 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7509529/ Improvement in Patient-Reported Outcomes in Patients With Psoriatic Arthritis Treated With Upadacitinib Versus Placebo or Adalimumab: Results From SELECT-PsA 1 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8572257/ Bimekizumab in Patients With Active Psoriatic Arthritis: Results From a 48-Week, Randomised, Double-Blind, Placebo-Controlled, Dose-Ranging Phase 2b Trial https://linkinghub.elsevier.com/retrieve/pii/S0140-6736(19)33161-7 A Study to Determine the Efficacy and Safety of Deucravacitinib Compared With Placebo in Participants With Active Psoriatic Arthritis (PsA) Who Are Naïve to Biologic Disease Modifying Anti-rheumatic Drugs or Had Previously Received TNFα Inhibitor Treatment https://clinicaltrials.gov/ct2/show/NCT04908189

Radio show host, Gary Calligas will have Dr. Harsha Rajasimha, founder and CEO of Jeeva Informatics on his Saturday, October 29th “The Best of Times Radio Hour” at 9:05 AM on News Radio 710 KEEL to discuss how patient related outcome measures matter greatly to assist clinical research but also patient care. You can also listen to this radio talk show streaming LIVE on the internet at www.710KEEL.com. and streaming LIVE on 101.7 FM or via the RadioPUP or KEEL app on apple and android devices. For more information, please visit these websites at www.thebestoftimesnews.com and www.hebertstandc.com. This radio show is proudly presented by AARP Louisiana and Hebert's Town and Country of Shreveport featuring – Dodge, Chrysler, Ram, and Jeep vehicles and service.

Radio show host, Gary Calligas will have Dr. Harsha Rajasimha, founder and CEO of Jeeva Informatics on his Saturday, October 29th “The Best of Times Radio Hour” at 9:05 AM on News Radio 710 KEEL to discuss how patient related outcome measures matter greatly to assist clinical research but also patient care. You can also listen to this radio talk show streaming LIVE on the internet at www.710KEEL.com. and streaming LIVE on 101.7 FM or via the RadioPUP or KEEL app on apple and android devices. For more information, please visit these websites at www.thebestoftimesnews.com and www.hebertstandc.com. This radio show is proudly presented by AARP Louisiana and Hebert's Town and Country of Shreveport featuring – Dodge, Chrysler, Ram, and Jeep vehicles and service.

Recently, Dr. Rahul Banerjee, Assistant Professor at the University of Washington and Editorial Board member for Oncology Data Advisor, spoke with Dr. Ajay Major, Assistant Professor at the University of Colorado, in a live interview discussion in honor of Blood Cancer Awareness Month. Dr. Banerjee and Dr. Major engaged in a riveting conversation about the role of patient-reported outcomes (PROs) in lymphoma and myeloma, including how to interpret them and how to include them when designing research.

At the European Society for Medical Oncology Congress 2022, Dr. Naoto Ueno presented patient-reported quality-of-life outcomes from the DESTINY-Breast04 study, which found that compared to doctors' choice of chemotherapy, Enhertu (chemical name: fam-trastuzumab-deruxtecan-nxki) improved both progression-free survival and overall survival in people diagnosed with previously treated metastatic HER2-low breast cancer. Listen to the episode to her Dr. Ueno explain: how the researchers assessed quality of life the results showing that Enhertu offered better quality of life than the doctors' choice of chemotherapy differences in side effects between Enhertu and chemotherapy

In this episode, we sat down with Dr. Stephanie Filbay, a physiotherapist by background and now full-time researcher with expertise related to evaluating and optimizing outcomes after Anterior Cruciate Ligament (ACL) injury. We discussed her quantitative and qualitative research as it relates to ACL injuries, and she addressed common myths, such as the ACL being unable to heal, surgery being required to prevent additional knee injury, surgery being necessary to return to pivoting sports, and so much more! --- Twitter: https://twitter.com/stephfilbay  Related Research: - Evidence-based recommendations for the management of anterior cruciate ligament (ACL) rupture - Activity preferences, lifestyle modifications and re-injury fears influence longer-term quality of life in people with knee symptoms following anterior cruciate ligament reconstruction: a qualitative study - Early ACL reconstruction is required to prevent additional knee injury: a misconception not supported by high-quality evidence - Delaying ACL reconstruction and treating with exercise therapy alone may alter prognostic factors for 5-year outcome: an exploratory analysis of the KANON trial  - Prognostic Factors for Patient-Reported Outcomes at 32 to 37 Years After Surgical or Nonsurgical Managment of Anterior Cruciate Ligament Injury - Surgery or rehabilitation for anterior cruciate ligament injury: where are we now? - Evidence too weak to guide surgical treamtment decisions for anterior cruciate ligament injury: a systematic review of the risk of new meniscal tears after anterior cruciate ligament injury - Rehabilitation versus surgical reconstruction for non-acute anterior cruciate ligament injury (ACL SNNAP): a pragmatic randomised controlled trial - 32 Sponataneous healing of the ruptured anterior cruciate ligament: observations from the KANON trial - SPONTANEOUS HEALING OF THE RUPTURED ANTERIOR CRUCIATE LIGAMENT: OBSERVATIONS FROM THE KANON TRIAL --- More about us:  YouTube: https://www.youtube.com/watch?v=xm8zaSgDIpM Website: https://e3rehab.com/blog/do-you-need-acl-surgery/ Instagram: https://www.instagram.com/e3rehab/ --- This episode was produced by Matt Hunter.

In this episode of the Award-winning PRS Journal Club Podcast, 2022 Resident Ambassadors to the PRS Editorial Board – Saïd Azoury, Emily Long, and Ronnie Shammas- and special guest Rod Rohrich, MD, discuss the following articles from the June 2022 issue: “Surgical and Patient-Reported Outcomes of Autologous versus Implant-Based Reconstruction following Infected Breast Device Explantation” by Asaad, Slovacek, Liu, et al.  Read the article for FREE: https://bit.ly/BreastReconAfterInfection Special guest Rod Rohrich, MD, from the Dallas Plastic Surgery Institute. Among numerous accolades, Dr. Rohrich is the former Editor-in-Chief of PRS, the past Chair of the Department of Plastic Surgery at UT Southwestern, and the current Clinical Professor of Plastic Surgery at Baylor College of Medicine a founding partner of the Dallas Plastic Surgery Institute. Dr. Rohrich also completed his residency training at the University of Michigan followed by a Hand and Microsurgery Fellowship at Massachusetts General Hospital.  READ the articles discussed in this podcast as well as free related content from the archives: https://bit.ly/PRSJune22Collection

JAMA Associate Editor Ethan Basch, MD, and Melanie Calvert, PhD, from the University of Birmingham, UK, discuss barriers to and strategies for including rigorous patient-reported outcomes in clinical trials, and reflect on Dr Calvert's recent JAMA paper on related ethical implications. Related Content: Ethical Considerations for the Inclusion of Patient-Reported Outcomes in Clinical Research

In this episode, Antonia and Andrew discuss a selection of articles from the March 2, 2022 issue of JBJS, along with an added dose of entertainment and pop culture. Listen at the gym, on your commute, or whenever your case is on hold! Articles Discussed: The Impact of Social Determinants of Health on 30 and 90-Day Readmission Rates After Spine Surgery, by Mohanty et al. Discrepancies in Work-Family Integration Between Female and Male Orthopaedic Surgeons, by Ponzio et al. Variation in the Profit Margin for Different Types of Total Joint Arthroplasty, by Fang et al. Integrating the Combined Sagittal Index Reduces the Risk of Dislocation Following Total Hip Replacement, by Grammatopoulos et al. Factors Affecting the Risk of Aseptic Patellar Complications in Primary TKA Performed with Cemented All-Polyethylene Patellar Resurfacing, by Limberg et al. Oral and IV Antibiotic Administration After Single-Stage Revision Shoulder Arthroplasty. Study of Survivorship and Patient-Reported Outcomes in Patients without Clear Preoperative or Intraoperative Infection, by Yao et al. Novel Parathyroid Hormone-Based Bone Graft, KUR-113, in Treatment of Acute Open Tibial Shaft Fracture. A Phase-2 Randomized Controlled Trial, by Orbeanu et al. Prospective Randomized Trial of Continuous Passive Motion Versus Physical Therapy After Arthroscopic Release of Elbow Contracture, by O’Driscoll et al. Link: JBJS website: https://jbjs.org/issue.php Sponsor: This episode is brought to you by the Miller Review Course. Subspecialties: Spine Orthopaedic Essent