Podcasts about hrqol

In part one we looked at the 2022 article by Sierżantowicz et al., “Quality of Life after Bariatric Surgery A Systematic Review.” I do recommend reading that to understand the issues with the way “Health Related Quality of Life or HRQOL” is used in the studies we'll examine today as we take a deeper diver into two of the studies Sierżantowicz et al. included.Content note for discussion of suicide and self-harm. Get full access to Weight and Healthcare at weightandhealthcare.substack.com/subscribe

Dr. Neeraj Agarwal and Dr. Peter Hoskin discuss key abstracts in GU cancers from the 2025 ASCO Genitourinary Cancers Symposium, including novel therapies in prostate, bladder, and kidney cancer and the impact of combination therapies on patient outcomes. TRANSCSRIPT Dr. Neeraj Agarwal: Hello, and welcome to the ASCO Daily News Podcast. I'm Dr. Neeraj Agarwal, the director of the Genitourinary Oncology Program and professor of medicine at the Huntsman Cancer Institute at the University of Utah, and editor-in-chief of ASCO Daily News. Today, we'll be discussing practice-informing abstracts and other key advances in GU oncology featured at the 2025 ASCO Genitourinary Cancers Symposium. Joining me for this discussion is Dr. Peter Hoskin, the chair of this year's ASCO GU Symposium. Dr. Hoskin is a professor in clinical oncology in the University of Manchester and honorary consultant in clinical oncology at the Christie Hospital, Manchester, and University College Hospital London, in the United Kingdom. Our full disclosures are available in the transcript of this episode. Peter, thank you for joining us today. Dr. Peter Hoskin: Thank you so much, Neeraj. I am very pleased to be here. Dr. Neeraj Agarwal: The GU meeting highlighted remarkable advancements across the spectrum of GU malignancies. What stood out to you as the most exciting developments at the ASCO GU Symposium?  Dr. Peter Hoskin: The theme of this year's meeting was "Driving Innovation, Improving Patient Care," and this reflected ASCO GU's incredible milestone in GU cancer research over the years. We were thrilled to welcome almost 6,000 attendees on this occasion from over 70 countries, and most of them were attending in person and not online, although this was a hybrid meeting. Furthermore, we had more than 1,000 abstract submissions. You can imagine then that it fostered fantastic networking opportunities and facilitated valuable knowledge and idea exchanges among experts, trainees, and mentees. So, to start I'd like to come back to you for a second because the first day started with a focus on prostate cancer and some of the key clinical trials. And congratulations to you, Neeraj, on sharing the data from the TALAPRO-2 trial, which we were eagerly awaiting. I'd love to get your thoughts on the data that you presented. Could you tell us more about that trial, Abstract LBA18?  Dr. Neeraj Agarwal: Yes, Peter, I agree with you. It was such an exciting conference overall and thank you for your leadership of this conference. So, let's talk about the TALAPRO-2 trial. First of all, I would like to remind our audience that the combination of talazoparib plus enzalutamide was approved by the U.S. FDA in June 2023 in patients with metastatic castration-resistant prostate cancer harboring HRR gene alterations, after this combination improved the primary endpoint of radiographic progression-free survival compared to enzalutamide alone in the randomized, double-blind, placebo-controlled, multi-cohort phase 3 TALAPRO-2 trial. In the abstract I presented at ASCO GU 2025, we reported the final overall survival data, which was a key alpha-protected secondary endpoint in cohort 1, which enrolled an all-comer population of patients with mCRPC. So, at a median follow-up of around 53 months, in the intention-to-treat population, the combination of talazoparib plus enzalutamide significantly reduced the risk of death by 20% compared to enzalutamide alone, with a median OS of 45.8 months in the experimental arm versus 37 months in the control arm, which was an active control arm of enzalutamide. This improvement was consistent in patients with HRR alterations with a hazard ratio of 0.54 and in those with non-deficient or unknown HRR status, with a hazard ratio of 0.87. In a post hoc analysis, the hazard ratio for OS was 0.78 favoring the combination in those patients who did not have any HRR gene alteration in their tumors by both tissue and ctDNA testing. Consistent with the primary analysis, the updated rPFS data also favored the experimental arm with a median rPFS of 33.1 compared to 19.5 months in the control arm, and a hazard ratio of 0.667. No new safety signals were identified with extended follow-up. Thus, TALAPRO-2 is the first PARP inhibitor plus ARPI study to show a statistically significant and a clinically meaningful improvement in OS compared to standard-of-care enzalutamide as first-line treatment in patients with mCRPC unselected for HRR gene alterations. Dr. Peter Hoskin: Thank you, Neeraj. That's a great summary of the data presented and very important data indeed. There was another abstract also featured in the same session, Abstract 20, titled “Which patients with metastatic hormone-sensitive prostate cancer benefit more from androgen receptor pathway inhibitors? STOPCAP meta-analyses of individual participant data.” Neeraj, could you tell us more about this abstract? Dr. Neeraj Agarwal: Absolutely, I would be delighted to. So, in this meta-analysis, Dr. David Fischer and colleagues pooled individual participant data from different randomized phase 3 trials in the mHSPC setting to assess the potential ARPI effect modifiers and determine who benefits more from an ARPI plus ADT doublet. The primary outcome was OS for main effects and PFS for subgroup analyses. Prostate cancer specific survival was a sensitivity outcome. The investigators pooled data from 11 ARPI trials and more than 11,000 patients. Overall, there was a clear benefit of adding an ARPI on both OS and PFS, with hazard ratios of 0.66 and 0.51, respectively, representing a 13% and 21% absolute improvement at 5 years, respectively, with no clear difference by the class of agent. When stratifying the patients by age group, the effects of adding an ARPI on OS and PFS were slightly smaller in patients older than 75, than in those younger than 65, or aged between 65 and 75 years. Notably, in the trials assessing the use of abiraterone, we saw very little OS effects in the group of patients older than 75, however there was some benefit maintained in prostate-cancer specific survival, suggesting that other causes of death may be having an impact. The effects of the other ARPIs, or ‘lutamides' as I would call them, were similar across all three age subgroups on both OS and PFS. Therefore, the majority of patients with mHSPC benefit from the addition of ARPIs, and the benefits/risks of abiraterone and other ‘amides' must be considered in older patients.  Dr. Peter Hoskin: Thanks, Neeraj. Another great summary relevant to our day-to-day practice. Of course, there's ongoing collection of individual patient data from other key trials, which will allow robust comparison of ARPI doublet with triplet therapy (including docetaxel), guiding more personalized treatment.   Dr. Neeraj Agarwal: I agree with you, Peter, we need more data to help guide personalized treatment for patients with mHSPC and potentially guide de-escalation versus escalation strategies. Now, moving on to a different setting in prostate cancer, would you like to mention Abstract 17 titled, “Overall survival and quality of life with Lu-PSMA-617 plus enzalutamide versus enzalutamide alone in poor-risk, metastatic, castration-resistant prostate cancer in ENZA-p (ANZUP 1901),” presented by Dr. Louise Emmett? Dr. Peter Hoskin: Of course I will. So, ENZA-p was a multicenter, open-label, randomized, phase 2 trial conducted in Australia. It randomized 163 patients into adaptive doses (2 or 4 cycles) of Lu-PSMA-617 plus enzalutamide versus enzalutamide alone as first-line treatment in PSMA-PET-CT-positive, poor-risk, mCRPC. The interim analysis of ENZA-p with median follow-up 20 months showed improved PSA-progression-free survival with the addition of Lu-PSMA-617 to enzalutamide. Here, the investigators reported the secondary outcomes, overall survival, and health-related quality of life (HRQOL). After a median follow up of 34 months, overall survival was longer in the combination arm compared to the enzalutamide arm, with a median OS of 34 months compared to 26 months; with an HR of 0.55. Moreover, the combination improved both deterioration-free survival and health-related quality of life indicators for pain, fatigue, physical function, and overall health and quality of life compared to the control arm. Consistent with the primary analysis, the rPFS also favored the experimental arm with a median rPFS of 17 months compared to 14 months with a HR of 0.61. So, the addition of LuPSMA improved overall survival, and HRQOL in patients with high-risk mCRPC. Dr. Neeraj Agarwal: Thank you, Peter. Great summary, and promising results with Lu-177 and ARPI combination in first line treatment for mCRPC among patients who had two or more high risk features associated with early enzalutamide failure. Before we move on to bladder cancer, would you like to tell us about Abstract 15 titled, “World-wide oligometastatic prostate cancer (omPC) meta-analysis leveraging individual patient data (IPD) from randomized trials (WOLVERINE): An analysis from the X-MET collaboration,” presented by Dr. Chad Tang?  Dr. Peter Hoskin: Sure. So, with metastatic-directed therapy (MDT), we have a number of phase 2 studies making up the database, and the X-MET collaboration aimed to consolidate all randomized data on oligometastatic solid tumors. This abstract presented pooled individual patient data from all the published trials involving patients with oligometastatic prostate cancer who received MDT alongside standard of care (SOC) against SOC alone. The analysis included data from five trials, encompassing 472 patients with oligometastatic prostate cancer, and followed for a median of 41 months. Patients were randomly assigned in a 1:1 ratio to receive either MDT plus SOC or SOC alone. The addition of MDT significantly improved PFS. The median PFS was 32 months with MDT compared to 14.9 months with SOC alone, with an HR of 0.45. Subgroup analyses further confirmed the consistent benefits of MDT across different patient groups. Regardless of factors like castration status, receipt of prior primary treatment, stage, or number of metastases, MDT consistently improved PFS. In patients with mHSPC, MDT significantly delayed the time to castration resistance by nine months, extending it to a median of 72 months compared to 63 months in the SOC group with an HR of 0.58. In terms of OS, the addition of MDT improved the 48-month survival rate by 12%, with OS rates of 87% in the MDT+SOC group compared to 75% in the SOC alone group. Dr. Neeraj Agarwal: Thank you, Peter. These data demonstrate that adding MDT to systemic therapy significantly improves PFS, rPFS, and castration resistance-free survival, reinforcing its potential role in the treatment of oligometastatic prostate cancer. So, let's switch gears to bladder cancer and start with Abstract 658 reporting the OS analysis of the CheckMate-274 trial. Would you like to tell us about this abstract?  Dr. Peter Hoskin: Yes, sure, Neeraj. This was presented by Dr. Matt Milowsky, and it was additional efficacy outcomes, including overall survival, from the CheckMate-274 trial which evaluated adjuvant nivolumab versus placebo in patients with high-risk muscle-invasive bladder cancer after radical surgery. The phase 3 trial previously demonstrated a significant improvement in disease-free survival with nivolumab. With a median follow-up of 36.1 months, disease-free survival was longer with nivolumab compared to placebo across all patients with muscle-invasive bladder cancer, reducing the risk of disease recurrence or death by 37%. Among patients who had received prior neoadjuvant cisplatin-based chemotherapy, nivolumab reduced this risk by 42%, whilst in those who had not received chemotherapy, the risk was reduced by 31%. Overall survival also favored nivolumab over placebo, reducing the risk of death by 30% in all patients with muscle-invasive bladder cancer and by 52% in those with tumors expressing PD-L1 at 1% or higher. Among patients who had received prior neoadjuvant chemotherapy, nivolumab reduced the risk of death by 26%, whilst in those who had not received chemotherapy, the risk was reduced by 33%. Alongside this, the safety profile remained consistent with previous findings. Dr. Neeraj Agarwal: Thank you, Peter, for such a nice overview of this abstract. These results reinforce adjuvant nivolumab as a standard of care for high-risk muscle-invasive bladder cancer, offering the potential for a curative outcome for our patients. Dr. Peter Hoskin: I agree with you Neeraj. Perhaps you would like to mention Abstract 659 titled, “Additional efficacy and safety outcomes and an exploratory analysis of the impact of pathological complete response (pCR) on long-term outcomes from NIAGARA.” Dr. Neeraj Agarwal: Of course. Dr. Galsky presented additional outcomes from the phase 3 NIAGARA study, which evaluated perioperative durvalumab combined with neoadjuvant chemotherapy in patients with muscle-invasive bladder cancer. The study previously demonstrated a significant improvement in event-free survival and overall survival with durvalumab compared to chemotherapy alone, with a manageable safety profile and no negative impact on the ability to undergo radical cystectomy. Among the 1,063 randomized patients, those who received durvalumab had a 33% reduction in the risk of developing distant metastases or death and a 31% reduction in the risk of dying from bladder cancer compared to those who received chemotherapy alone. More patients who received durvalumab achieved a pathological complete response at the time of surgery with 37% compared to 28% in the chemotherapy-alone group. Patients who achieved a pathological complete response had better event-free survival and overall survival compared to those who did not. In both groups, durvalumab provided additional survival benefits, reducing the risk of disease progression or death by 42% and the risk of death by 28% in patients with a pathological complete response, while in those patients without a pathological complete response, the risk of disease progression or death was reduced by 23% and the risk of death by 16% when durvalumab was added to the chemotherapy. Immune-mediated adverse events occurred in 21% of patients in the durvalumab group compared to 3% in the chemotherapy-alone group, with grade 3 or higher events occurring in 3% compared to 0.2%. The most common immune-related adverse events included hypothyroidism in 10% of patients treated with durvalumab compared to 1% in the chemotherapy-alone group, and hyperthyroidism in 3% versus 0.8%. At the time of the data cutoff, these adverse events had resolved in 41% of affected patients in the durvalumab group and 44% in the chemotherapy-alone group. Dr. Peter Hoskin: Thank you, Neeraj, for the great summary. These findings further support the role of perioperative durvalumab as a potential standard of care for patients with muscle-invasive bladder cancer. Dr. Neeraj Agarwal: I concur with your thoughts, Peter. Before wrapping up the bladder cancer section, would you like to mention Abstract 664 reporting updated results from the EV-302 trial, which evaluated enfortumab vedotin in combination with pembrolizumab compared to chemotherapy as first-line treatment for patients with previously untreated locally advanced or metastatic urothelial carcinoma? Dr. Peter Hoskin: Yes, of course. Dr. Tom Powles presented updated findings from the EV-302 study, and in this abstract presented 12 months of additional follow-up for EV-302 (>2 y of median follow-up) and an exploratory analysis of patients with confirmed complete response (cCR). The study had a median follow-up of 29.1 months and previously demonstrated significant improvements in progression-free survival and overall survival with enfortumab vedotin and pembrolizumab. This is now the standard of care in global treatment guidelines. Among the 886 randomized patients, enfortumab vedotin and pembrolizumab reduced the risk of disease progression or death by 52% and the risk of death by 49% compared to chemotherapy. The survival benefit was consistent regardless of cisplatin eligibility or the presence of liver metastases. The confirmed objective response rate was higher with enfortumab vedotin and pembrolizumab at 67.5% compared to 44.2% with chemotherapy. The median duration of response was 23.3 months with enfortumab vedotin and pembrolizumab compared to 7.0 months with chemotherapy. A complete response was achieved in 30.4% of patients in the enfortumab vedotin and pembrolizumab group compared to 14.5% in the chemotherapy group, with the median duration of complete response not yet reached in the enfortumab vedotin and pembrolizumab group compared to 15.2 months in the chemotherapy group. Severe treatment-related adverse events occurred in 57.3% of patients treated with enfortumab vedotin and pembrolizumab compared to 69.5% in the chemotherapy group, while in patients who achieved a complete response, severe adverse events occurred in 61.7% of those treated with enfortumab vedotin and pembrolizumab compared to 71.9% with chemotherapy. Treatment-related deaths were reported in 1.1% of patients treated with enfortumab vedotin and pembrolizumab compared to 0.9% with chemotherapy, with no treatment-related deaths occurring in those who achieved a complete response. These findings clearly confirm the durable efficacy of enfortumab vedotin and pembrolizumab, reinforcing its role as the standard of care for the first-line treatment of patients with locally advanced or metastatic urothelial carcinoma, and no new safety concerns have been identified. Dr. Neeraj Agarwal: Thank you for this great summary. Moving on to kidney cancer, let's talk about Abstract 439 titled, “Nivolumab plus cabozantinib (N+C) vs sunitinib (S) for previously untreated advanced renal cell carcinoma (aRCC): Final follow-up results from the CheckMate-9ER trial.” Dr. Peter Hoskin: Sure. Dr. Motzer presented the final results from the phase 3 CheckMate-9ER trial, which compared the combination of cabozantinib and nivolumab against sunitinib in previously untreated advanced renal cell carcinoma. The data after more than five years follow-up show that the combination therapy provided sustained superior efficacy compared to sunitinib. In terms of overall survival, we see an 11-month improvement in median OS, 46.5 months for the cabo-nivo versus 35.5 months for sunitinib and a 42% reduction in the risk of disease progression or death, with median progression-free survival nearly doubling – that's 16.4 months in the combination group and 8.3 months with sunitinib. Importantly, the safety profile was consistent with the known safety profiles of the individual medicines, with no new safety concerns identified. Dr. Neeraj Agarwal: Great summary, Peter. These data further support the efficacy of cabo-nivo combination therapy in advanced renal cell carcinoma, which is showing a 11-month difference in overall survival. Dr. Peter Hoskin: Neeraj, before wrapping up this podcast, would you like to tell us about Abstract 618? This is titled “Prospective COTRIMS (Cologne trial of retroperitoneal lymphadenectomy in metastatic seminoma) trial: Final results.” Dr. Neeraj Agarwal: Sure, Peter. I would be delighted to. Dr Heidenrich from the University of Cologne in Germany presented the COTRIMS data evaluating retroperitoneal LN dissection in patients with clinical stage 2A/B seminomas. Seminomas are classified as 2A or B when the disease spreads to the retroperitoneal lymph nodes of up to 2 cm (CS IIA) or of more than 2 cm to up to 5 cm (CS 2B) in maximum diameter, respectively. They account for 10-15% of seminomas and they are usually treated with radiation and chemotherapy. However, radiation and chemo can be associated with long-term toxicities such as cardiovascular toxicities, diabetes, solid cancers, leukemia, particularly for younger patients. From this standpoint, Dr Heidenrich and colleagues evaluated unilateral, modified template, nerve-sparing retroperitoneal lymph node dissection as a less toxic alternative compared to chemo and radiation. They included 34 patients with negative AFP, beta-HCG, and clinical stage 2A/B seminomas. At a median follow-up of 43.2 months, the trial demonstrated great outcomes: a 99.3% treatment-free survival rate and 100% overall survival, with only four relapses. Antegrade ejaculation was preserved in 88% of patients, and severe complications such as grade 3 and 4 were observed in 12% of patients. Pathological analysis revealed metastatic seminoma in 85% of cases, with miR371 being true positive in 23 out of 24 cases and true negative in 100% of cases. It appears to be a valid biomarker for predicting the presence of lymph node metastases. These findings highlight retroperitoneal lymph node dissection is feasible; it has low morbidity, and excellent oncologic outcomes, avoiding overtreatment in 80% of patients and sparing unnecessary chemotherapy or radiotherapy in 10-15% of cases. Dr. Peter Hoskin: Great summary and important data on retroperitoneal lymphadenectomy in metastatic seminoma. These findings will help shape clinical practice. Any final remarks before we conclude today's podcast? Dr. Neeraj Agarwal: Before wrapping up this podcast, I would like to say that we have reviewed several abstracts addressing prostate, bladder, kidney cancers, and seminoma, which are impacting our medical practices now and in the near future. Peter, thank you for sharing your insights with us today. These updates are undoubtedly exciting for the entire GU oncology community, and we greatly appreciate your valuable contribution to the discussion and your leadership of the conference. Many thanks. Dr. Peter Hoskin: Thank you, Neeraj. Thank you for the opportunity to share this information more widely. I'm aware that whilst we have nearly 6,000 delegates, there are many other tens of thousands of colleagues around the world who need to have access to this information. And it was a great privilege to chair this ASCO GU25. So, thank you once again, Neeraj, for this opportunity to share more of this information that we discussed over those few days. Dr. Neeraj Agarwal: Thank you, Peter. And thank you to our listeners for joining us today. You will find links to the abstracts discussed today on the transcript of this episode. Finally, if you value the insights that you hear on the ASCO Daily News podcast, please take a moment to rate, review, and subscribe wherever you get your podcasts. Disclaimer: The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.  Find out more about today's speakers:   Dr. Neeraj Agarwal    @neerajaiims    Dr. Peter Hoskin Follow ASCO on social media:      @ASCO on Twitter      ASCO on Bluesky  ASCO on Facebook      ASCO on LinkedIn      Disclosures: Dr. Neeraj Agarwal: Consulting or Advisory Role: Pfizer, Bristol-Myers Squibb, AstraZeneca, Nektar, Lilly, Bayer, Pharmacyclics, Foundation Medicine, Astellas Pharma, Lilly, Exelixis, AstraZeneca, Pfizer, Merck, Novartis, Eisai, Seattle Genetics, EMD Serono, Janssen Oncology, AVEO, Calithera Biosciences, MEI Pharma, Genentech, Astellas Pharma, Foundation Medicine, and Gilead Sciences Research Funding (Institution): Bayer, Bristol-Myers Squibb, Takeda, Pfizer, Exelixis, Amgen, AstraZeneca, Calithera Biosciences, Celldex, Eisai, Genentech, Immunomedics, Janssen, Merck, Lilly, Nektar, ORIC Pharmaceuticals, Crispr Therapeutics, Arvinas Dr. Peter Hoskin: Research Funding (Institution): Varian Medical Systems, Astellas Pharma, Bayer, Roche, Pfizer, Elekta, Bristol Myers  

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.

Dr. Richard Matulewicz is a urologic surgeon at Memorial Sloan Kettering Cancer Center (MSKCC). Dr. Matulewicz talks about health-related quality of life (HRQoL) considerations for testicular cancer patients and survivors, including what the future might hold for personalizing care based on a person's specific situation. Sponsored by Dee's Nuts. Use code "nutcheck" at checkout on https://grabdeesnuts.com Want to be a guest? Apply here: ⁠https://www.testicularcancerawarenessfoundation.org/it-takes-balls-submissions⁠ Follow Testicular Cancer Awareness Foundation: ⁠https://www.testescancer.org https://www.twitter.com/testescancer⁠ ⁠https://www.instagram.com/testescancer https://www.facebook.com/tca.org Connect with Dr. Matulewicz: https://www.mskcc.org/cancer-care/doctors/richard-matulewicz Follow Steven Crocker: https://www.twitter.com/stevencrocker https://www.instagram.com/stevencrocker https://www.facebook.com/steven.crocker2 Theme song: No Time Like Now - Tom Willner www.tomwillner.com

In an analysis of patients undergoing kidney transplantation, depression and health related quality of life were measured at 3-months and 1-year post-transplantation. Depression and HRQOL improve with KT.

In this podcast, Janelle Hart, Managing Editor at Citeline, teams up with industry experts Mai Yee Mishir, Senior Director of Global Regulatory Affairs, and Sally-Ann McDowell, Senior Director of Clinical Development Strategy at Advanced Clinical, to discuss the vital role of HRQoL in clinical trials. Listen now.

In this episode with Dr Christina Le, we discuss her Research Review of a recent article which looked at a bracing protocol vs going brace-free for the first 6 weeks post ACL reconstruction with hamstring autograft. We discuss the strengths and limitations of the paper as well as what we as clinicians should take away from the paper and use in our own clinical practice.See Christina's full Research Review here - https://physio.network/reviews-leDr Christina Le is a physiotherapist and completed her PhD in 2022 at the University of Alberta in Edmonton, Canada. As a clinician, she primarily treats individuals with anterior cruciate ligament (ACL) injuries. Having sustained a previous ACL injury herself, she has developed an interest in understanding health-related quality of life (HRQOL) following a sport-related knee injury in youth.If you like the podcast, it would mean the world if you're happy to leave us a rating or a review. It really helps!Our host is @James_Armstrong_Physio from Physio Network

The @OncoAlert Newsletter  September 21, 2023Register at http://OncoAlert360.comDiscussing:VP-2023 HRQoL in NATALEE #BreastCancerOligomets in #ProstateCancer  treated w SBRTEV301: Enfortumab VendotinChemo in Urothelial CaTargeting Innate immune pathways in Cancer #ImmunotherapyOsimertinib early dose reduction as risk to brain mets in EGFR mutant #NSCLC #LungCancer

In this episode, Nikos Dedes, Jeff Taylor, and Bernadette Sharp—people living with HIV—discuss how switching to long-acting ART has affected their quality of life. They are joined by 2 healthcare professionals—Iskandar Azwa,MBChB, MRCP, and Beng Eu, MBBS—who provide insights on how they assess and document health-related quality of life for their patients. The discussion focuses on personal experiences with how LA ART has improved health-related quality of life, including:Avoidance of drug–drug interactionsImproved confidentiality Decreased stigmaPresenters:Iskandar Azwa, MBChB, MRCPAssociate ProfessorInfectious DiseasesFaculty of MedicineUniversity of MalayaKuala Lumpur, MalaysiaNikos DedesPositive VoiceAthens, GreeceBeng Eu, MBBSDoctorPrahran Market Clinic Melbourne, Victoria, AustraliaBernadette SharpAdvocateJeff TaylorExecutive DirectorHIV+Aging Research ProjectPalm Springs, CaliforniaContent based on an online CME program supported by an independent educational grant from ViiV Healthcare.ViiV Healthcare was not involved in the development of content or selection of faculty for this educational activity.Link to downloadable slides: https://bit.ly/488WwT7Link to full program: bit.ly/3EwEnRJ

Diet treatments are often used with the aim of reducing seizure frequency and severity — but they may have other benefits as well. Findings from a recent study conducted in Norway suggest that dietary treatments may normalize emotional symptoms and that health-related quality of life (HRQOL) might be an indicator of successful diet treatment in the future. Joy Mazur spoke with Dr. Magnhild Kverneland about the study's results and its implications.   Health-related quality of life in adults with drug-resistant focal epilepsy treated with modified Atkins diet in a randomized clinical trial was published in Epilepsia in March 2023. Related studies: Anxiety and depressive disorders in people with epilepsy: A meta-analysis Scott A, et al., 2017 Modified ketogenic diets in adults with refractory epilepsy: Efficacious improvements in seizure frequency, seizure severity, and quality of life Roehl K, et al., 2019 Support the showSharp Waves episodes are meant for informational purposes only, and not as clinical or medical advice.The International League Against Epilepsy is the world's preeminent association of health professionals and scientists, working toward a world where no person's life is limited by epilepsy. Visit us on Facebook, Twitter, and Instagram.

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

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Join Professors Iain McInnes and Phillip Mease as well as Doctors Frank Behrens and Laura Coates as they discuss the latest top research in PsA. In this edition, our Steering Committee members look at three key papers published in August 2022. Our first paper aims to highlight the efficacy of secukinumab on Achilles' tendon enthesitis in SpA patients by looking at a single tender point out of the six-point LEI. The second of today's papers evaluates the impact of risankizumab on HRQoL and other PROs among patients with active PsA and inadequate response or intolerance to csDMARD-IR in the KEEPsAKE 1 trial. Finally, our third paper reports the long-term safety, tolerability, and efficacy of up to three years of bimekizumab treatment in PsA patients. Everything discussed is available in a more detailed slide format in the publications section at cytokinesignalling.com.

Join Prof Iain McInnes as he reviews two interesting papers published in May 2022! The first – from Bartlett et al – looks at the impact of tofacitinib on fatigue, sleep and HRQoL in patients with RA. While the second assesses the impact of JAKi or abatacept on RA-interstitial lung disease. Keep up to date with the latest in arthritis and cytokine signalling with Prof Iain McInnes. Everything discussed is available in a more detailed slide format in the publications section at cytokinesignalling.com.

The podcast highlights issues women living with HIV experience during pregnancy and throughout their sexual and reproductive health. The importance of language and stigma is discussed and Angelina provides some top tips on how to support women in a clinical setting. The importance of peer support and mentoring is explored within the podcast a long with trauma informed care and holistic approaches to care delivery.Episode GuestOriginally from Kenya, Angelina has over 24 years' experience of working in the HIV sector on different initiatives ranging from providing one-to-one support, treatment advocacy, managing service delivery to facilitating, promoting and advocating for the involvement of women living with HIV in forming and informing local and national strategy and policy. A founder member of the 4M Network of Mentor Mothers living with HIV, Angelina also sits on various national and international advisory boards. These include, as a patron of the National HIV Nurses Association, a lay member of the Women's Network of the Royal College of Obstetricians and Gynaecologists, a member of the organizing Committee of the International annual Women and HIV Workshop, has been a Community Representative for the British HIV Association, and is a Trustee of the National AIDS Trust Salamander Trust and SAFE Kenya. She has co-authored various articles in peer review journals and UNAIDS reports.Additional Information and Links 4M Mentor Mothers https://4mmm.orgHIV Matters Bookstore https://uk.bookshop.org/shop/HIVMattersHow to contact the show Dr Michelle Croston@ michelle.croston@nottingham.ac.ukhttps://hiv-matters.captivate.fm

Let us know what you thought of this week's episode on Twitter: @physicianswkly Want to share your medical expertise, research, or unique experience in medicine on the PW podcast? Email us at editorial@physweekly.com! Thanks for listening!

In this episode, Jamie E. Chaft, MD, provides her expert perspective on new data from WCLC 2020 in early-stage NSCLC, with topics including:Updated results from ADAURA on HRQoL and DFS outcomes with or without postoperative chemotherapy after adjuvant osimertinibAn analysis of the ongoing ITACA study of personalizing chemotherapy based on biomarkers of drug resistanceFDG PET/CT adaptive radiotherapy in RTOG 1106The TALENT study in Taiwan screening nonsmokers for lung cancerPresenter:Jamie E. Chaft, MDAssociate Attending PhysicianThoracic Oncology ServiceMemorial Sloan Kettering Cancer CenterNew York, New YorkContent supported by educational grants from Amgen; Bristol-Myers Squibb; Ipsen Biopharmaceuticals; Janssen Pharmaceutica NV; Jazz Pharmaceuticals; Regeneron Pharmaceuticals, Inc. & Sanofi Genzyme; and Takeda Oncology.Link to full program, including a downloadable highlights slideset, and ClinicalThought commentaries:http://bit.ly/2NzE6X6

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a European study examining the health-related quality of life (HRQoL) of patients living with idiopathic pulmonary fibrosis. Unsurprisingly, disease severity and age consistently emerged as two causes of decreased HRQoL among patients. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com

The Whole View, Episode 436: What Is Health, and How Do You Measure It?     Welcome back to episode 436 of the Whole View. (0:27) Stacy welcomes listeners and tells the audience how excited she and Sarah are to have new listeners!  She suggests they take a moment to introduce themselves. Stacy has a 20-year career in Federal regulation and law. Her life-changing moment came from discovering what we put in and on our bodies affects our health.  Now she's her own boss and leads a large team focused on getting safer, non-toxic living products into the hands of everyone. Dr. Sarah has a medical research background and a Ph.D. in medical biophysics. She used diet and lifestyle to regain her health.  Now she sees herself as a science translator. Her goal is to build a bridge between the researchers working on expanding human knowledge and everyday people who can benefit from the information. Stacy explains that a lot of Whole View shows lately have done some very deep dives into the science on topics like foods, lifestyle factors, hormones, and specific nutrients. She explains it's not about getting your body "beach body ready." But more about your health and feeling good.  Today she and Sarah want to pull all that together and discuss the basic philosophy of health, how we define and measure the actual goal. Stacy reminds listeners that she and Sarah are not medical professionals or giving you medical advice. She and Sarah want to give you information to empower you and take with you to your doctors.  Perspective & Bias Stacy battled weight her whole life. (4:55) As a tween, she was sent to "camp shame," which was basically a place for fat kids to lose weight. This inevitably propelled her into cycles of yo-yo dieting with gaining, losing, and gaining hundreds of pounds throughout the course of her adult life. Stacy shares that in coming to a health-oriented approach to her diet, she focused a lot on being a competitive athlete for the sport of StrongMan. After an injury, it really caused her to re-evaluate how she defined self-care and self-love in the context of self-respect and acceptance. Stacy explains how big a role acceptance played at this point in her life. She had accepted her body in the context of her performance as an athlete but needed to work on accepting herself, period. Lack of self-acceptance is how our societal and cultural beliefs are such that we allow media and marketing to think of ourselves as "less than" and "imperfect." She also explains that this is how they sell billions of dollars of products to us that encourage us to change. It is a lot harder to convince somebody to change if they already accept themselves the way that they are.  Stacy tells the audience that this is where we see things that are NOT healthy: Thin, skinny, bikini body Jacked, ripped, swole Botox, collagen fillers, hair extensions, liposuction, lash serums that cause people to go blind Teas, weight loss products, that are actually nutrient depleting  Stacy tells listeners that these ideas of "health" aren't realistic, but if you do use some of these products, that doesn't make you a bad or unhealthy person. She jokes that if you love your hair extensions and they make you feel good about yourself, there's nothing wrong with that. She also adds that the belief that thin = healthy is just wrong. Health vs. Beauty Stacy explains that many companies prey on making us feel like we need these products. And some people even risk going blind, hoping that they end up the percentage of people who get the long lashes. (8:40) Sarah takes a minute to highlight the misdirect between health and beauty. Unfortunately, Sarah says, it's so pervasive that it's difficult to persuade people into opening their minds. Stacy adds that stereotypical ideas of beauty don't even equate to a healthy lifestyle. She cites underweight models are seen as ideal even though underweight is actually detrimental to your health.  The ideal body type has changed over centuries, and right now, the general belief is one where people believe thin is healthy. Stacy and Sarah covered this idea in-depth in Episode 421.  Stacy reminds everyone that science has actually proved the BMI chart is more wrong than right.  It tends to lead us to "assume" thin people are healthy and overweight people are not.   Sarah emphasis that there is a really big lag between scientific discoveries, for example, lifestyle changes, and doctors implement it.  In some cases, this lag can be up to twenty years long.  For example, for years, doctors would tell them to stop eating high cholesterol foods if someone had high cholesterol. We know now that our cholesterol isn't impacted by what we eat, but rather our lifestyle and genetics.  How Doctors Define Health? Free of disease is a big one. But "lack of disease" doesn't necessarily mean "healthy." (15:15) Low-risk factors for disease are:  BMI, weight, or waist to hip circumference ratio Blood pressure Serum cholesterol (HDL, LDL, total, and triglycerides) Fasting blood sugar and insulin Doctors look for normal vital signs, including heart rate, respiration rate, blood pressure, temperature, and other things.  A regular doctor examination is also something they look at for determining health.  This takes into account general appearance, heart exam, lung exam, head and neck exam, abdominal exam, neurological exam, dermatological exam, extremities exam, male and female exams, etc. A lot of day-to-day symptoms, like constipation, headaches, stomach issues, etc., that aren't actually "normal" often go unnoticed because they are normal to us. This means we don't always talk to doctors about these things because we're still able to function.  BUT all the things a doctor measures during an annual physical are designed to diagnose disease. And usually, their techniques are quite outdated based on their education and continuous learning.  Sarah explains that "normal" means the absence of disease and not necessarily healthy.  Even worse, we can see significant evidence of misdiagnosis of doctors who assume health equals lack of disease when people look a certain way—for example, being overweight.  Sarah reveals that thin people have heart attacks and strokes while the "overweight" category of people actually have the longest life expectancy.  She poses the question go what a better science-backed way to look at it is? A Better Definition of Health Sarah underlines that the goal of all this is to be healthy and not thin or swole. (20:46) She offers a better definition of health as being free of symptoms of the disease. A healthy diet and lifestyle can go a long way toward managing chronic diseases. This includes symptoms not associated with a diagnosis that is normalized and explained away as signs of stress, or aging, or the idea of "I just need to work out more, eat more fiber, or lose 10 pounds." These missed symptoms often include headaches, skin conditions like acne, rosacea, eczema; gastrointestinal problems like constipation, diarrhea, flatulence, bloating, super stinky poops or farts, reflux, or belching; fatigue; joint or muscle aches; and even emotional issues like irritability or malaise. Stacy shares that a big wakeup call for her was when she started monitoring inflammation.  Every time she would visit a doctor for symptoms associated with her many autoimmune diseases, doctors told was always told she needed to lose weight. She even shares that no one really looked into or even asked about many of her other symptoms that she, who does not have a medical background, didn't realize were signs of other things. Had she known, she could have done a lot more sooner.  Stacy also reminds listeners that this is not aimed at making anyone feel bad about themselves or giving them a list of things to change. There's a balance to everything. She stressed that the science behind health should act as a compass, rather than a strict set of rules. Stacy explains you need to love yourself the same way you love your kids or your mom. You love them because you love them. Signs of Physical Health Sarah explains that what we're trying to do is give us better tools to measure health with. (26:15) She believes the problem is weight is such a poor measure of health.  Sarah explains that looking at energy levels throughout the day is a good way to measure health.  No "crash" at the end of the day No need to rely on sugar or caffeine to pick us up Don't fall asleep/nap at odd times like on the bus or on the couch after dinner Body composition is also a good way of looking at health and not weight itself. We know from the scientific literature that having higher muscle mass is a more important determinant of health than fat mass. Where your fat deposits are (subcutaneous fat vs. visceral fat), and what type of fat it is (BAT or WAT) is more important as well.  Sarah explains enjoying the activity is also considered a great indicator of health. This can be as simple as outside play, visiting farms, etc. The ideal is to enjoy working towards a fitness goal, or just enjoy moving, and not just focusing on losing weight or looking better. Spontaneous physical play is a great indicator of health (is it fun to race your kid to the bus stop, spontaneously dance to a song on the radio) Stacy jokes she loves things like spontaneous dance parties, especially when it embarrasses her kids. Feeling like we need to get up and move after being sedentary too long because it's normal to feel crummy after sitting for too long.  Sarah believes sleep quality is a huge indicator of health as well. Falling asleep quickly  Staying asleep Wake up feeling refreshed "Sense of wellbeing" and sex hormone regulation are both good indicators of physical health. Sarah explains that this includes: Having a normal libido (for women, it fluctuates with hormones) Wanting and enjoying "sexual relations" (with a partner or by ourselves) Regular menstruation   Mental Health As A Sign Of Overall Health Stacy adds she's always seen mental health as a huge indicator of how healthy we are. (35:05)  Sarah agrees, adding that if you're looking at how healthy you are overall, you're going to want to check in on how you're doing mentally. This can include ental clarity, problem-solving, and memory, and no brain fog or cognitive challenges. Sarah adds that a balanced emotional response is also a good indicator of mental and physical health. This means that you're not prone to overreactions. Sarah adds effective communication, overall happiness, and enjoying life, coping in a productive (not destructive) way, and flexibility to that list. It's a good sign to enjoy playing and engaging with others, like pets, kids, games, or other close relationships. Sarah explains another interesting indicator that we're healthy mentally is to be ok being bored and existing inside our own heads without needing a distraction. Stacy adds that through her work as a foster parent, she's realized how well trauma can hide in ourselves.  Also, there is no need for "crutches" or willpower (physical + mental health) like caffeine and sugar, self-medicating, smoking, drinking, recreational drugs, etc. Stacy explains that these crutches can act as a way of avoiding mental health and can negatively impact your physical health. She urges listeners that when making food choices, focus on ones that are helpful and healing.  Why It Matters When we have a healthy lifestyle, we tend to enjoy healthier food and not crave food that can harm our health. (43:45) Getting enough sleep regulates appetite and food cravings and makes people more likely to CHOOSE fruits and veggies over fast food.   Sarah explains that stress increases appetite and cravings for energy-dense foods (salt, sugar, fat) When healthy foods are our normal, we're not consuming addictive hyper-palatable engineered/manufactured foods.  It's so much easier to really, truly enjoy an apple if we're not eating donuts regularly. When we're getting enough sleep, we don't need coffee or energy drinks to get us through the day. Sarah reminds listeners that that doesn't mean you have to give up coffee entirely. The goal is not to rely on it. She adds that a big part of this is finding better coping mechanisms for when things happen, like an energy crash at 3 pm. It's easy to reach for the caffeine, but it could be as simple as taking an afternoon walk to recharge. Stacy explains no one is expected to check every one of these boxes, but it gives perspective on areas of your life to optimize health. These indicators reflect physical health and mental health and the underlying biology of both.  They are signs of no nutritional deficiencies, having well-regulated neurotransmitters and hormones, a healthy gut, healthy immune system, healthy cardiovascular system, etc.  Stacy loves the idea of a crutch not necessarily being a negative thing but relying more on how you use it and benefit your health overall. How Can We Measure Health? When measuring your own health, Sarah suggests reflecting on what we've discussed so far: Keep a simple journal (if you're troubleshooting, note diet, sleep, activity, emotions/stress, and any symptoms) Energy levels Mood, malaise, emotional response GI symptoms and stool quality/frequency Skin health (can also include things like fingernails, hair, etc.) Pain: Headaches, body aches, joint, muscle Cognition (IQ boosting games that give a score are a fun way to track this) Subjective sleep quality (or measure with a tracker) Stress, baseline, and response (or measure HRV) Health-related quality of life (HRQOL) is an individual's perceived physical and mental health over time.  She also recommends checking out these resources for a Quality of Life Scale and Quality of Life Sheet.  No Quick Fix Stacy adds that there's no quick fix to increasing your health and wellness. (52:21) She reminds listeners that it's never her or Sarah's goal to have you walk away from these shows feeling like you should be doing something you're not.  Sarah shares that she loves the idea of people taking on a more holistic view of health that's more than just a number on a scale.  When we think about health more comprehensively, one thing that starts to become apparent is that there's no magic pill or quick fix that will get us there. Instead, making healthy choices day-to-day (without the need to be perfect) sustainably and consistently gets us there. The foundations of health include four pillars: A nutrivore diet!  Sleep (enough and on a consistent schedule) Stress management (work, family, social networks, and nature) Activity (lots and lots of it but not overtraining) Sarah adds that health is quality of life, and by making better choices, we can better support our health.  Stacy asks listeners to reflect on their self-worth and check-in with themselves. She wants everyone to love who they are just the way they are and love themselves without restriction. Stacy invites you to check out Episode 421 on body image if you liked the positive body message of this episode. Thanks so much for listening today, and we will see you next week!

FDA 连续批准2个CGRP受体拮抗剂治疗急性偏头痛NEJM 中国41家三甲医院参加的DIRECT-MT研究NEJM 连续发表2种脊髓侧索硬化症在研新疗法瑞美吉泮（rimegepant）降钙素基因相关肽（CGRP）受体位于疼痛信号通路、颅内动脉和肥大细胞中，其活化被认为在偏头痛的病理生理学中起着因果作用。例如，偏头痛发作时血清中CGRP水平升高。瑞美吉泮（rimegepant）是一种新型的口服、小分子血管舒张剂-CGRP受体拮抗剂。2020年2月，FDA批准瑞美吉泮用于治疗偏头痛急性发作。《随机对照研究：瑞美吉泮治疗急性偏头痛的3期临床研究》Lancet，2020年8月 (1)在这项双盲、随机、安慰剂对照、多中心的第三期试验中，纳入偏头痛病史≥1年的、偏头痛患者1466人，被随机分配接受瑞美吉泮口腔崩解片75mg 和安慰剂治疗。给药后2小时，瑞美吉泮口腔崩解片在止痛方面优于安慰剂（21%对11%，p

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a 2020 study investigating health-related quality of life (HRQoL) in patients with idiopathic pulmonary fibrosis (IPF). The study conducted in the European Respiratory Journal Open Research revealed that both respiratory and emotional symptoms may decrease quality of life in patients living with IPF. Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com

In this episode we talk with Dr. Roham Zamanian about the use of Nitric Oxide as an outpatient treatment in a patient with PAH and COVID-19. We also discuss 3 articles on HRQOL questionnaires and outcomes in PAH, PaCO2 association with mortality risk in PAH and urban-rural disparities in the outcomes of patient with PAH.

El Dr. Alejandro Juárez, oncólogo médico del Hospital 20 de Noviembre, de la Ciudad de México nos comenta sobre los adelantos más importantes del 2019 en tumores cerebrales, concretamente en el tratamiento del glioblastoma. En ESMO 2019 se presentaron los resultados de calidad de vida del estudio aleatorizado, fase II REGOMA, el cuál analiza la actividad de regorafenib en glioblastoma recurrente: Previamente, el estudio REGOMA mostró que regorafenib mejoró significativamente la sobrevida global (SG) y la sobrevida libre de progresión (SLP) en pacientes con glioblastoma recurrente con respecto a lomustina. Regorafenib mostró un perfil de toxicidad diferente en comparación con lomustina. (1) En ESMO 2019 se presentaron los resultados de calidad de vida relacionada con la salud (HR QoL, por sus siglas en inglés). (1) No se observaron diferencias estadísticamente significativas en la calidad de vida relacionada con la salud entre los brazos de regorafenib y lomustina. (1) La HR QoL no cambió durante el tratamiento con regorafenib. (1) Los pacientes tratados con regorafenib y lomustina no informaron diferencias significativas en la HR QoL. (1) Referencia: G Lombardi, P Del Bianco, A A Brandes, M Eoli, R Rudà, T Ibrahim, I R Lolli, A Pace, B Daniele, F Pasqualetti, S Rizzato, E Bergo, M Caccese, M Padovan, R Soffietti, G L De Salvo, V Zagonel, 394O Health-related quality of life (HRQoL) evaluation in the REGOMA trial: A randomized, phase II clinical trial analyzing regorafenib activity in relapsed glioblastoma patients, Annals of Oncology, Volume 30, Issue Supplement_5, October 2019, mdz243.004

Dr. Kathy Zebracki explains QOL and HRQOL specifically in pediatrics, why it's important to measure both, how they are both measured, and how this information is helpful to patients and families.

LIVE from the WCPT Conference in Geneva, Switzerland, I welcome Christina Le on the show to discuss youth kinesiophobia following knee injury in sport. Christina Le is a PhD candidate in Rehabilitation Sciences in the Faculty of Rehabilitation Medicine at the University of Alberta in Edmonton, Canada. In this episode, we discuss: -What is kinesiophobia? -Preliminary results from the University of Alberta research team focused on prevention of early onset osteoarthritis -Why clinicians should address kinesiophobia early and often in rehabilitation to minimize poor long-term health outcomes -And so much more!   Resources: Christina Le Twitter World Congress of Sports Physical Therapy 2019 Tampa Scale for Kinesiophobia   For more information on Christina: Christina Le is a PhD candidate in Rehabilitation Sciences in the Faculty of Rehabilitation Medicine at the University of Alberta in Edmonton, Canada. As a clinician, she frequently treated athletes with anterior cruciate ligament (ACL) injuries. This experience has motivated her to pursue research to better understand health-related quality of life (HRQOL) following a sport-related knee injury in active youth. Her research include identifying what factors impact youth HRQOL during rehabilitation and developing strategies to improve long-term HRQOL. Christina continues to work part-time as a physiotherapist at the Glen Sather Sports Medicine Clinic. She treats patients on weekends, participates in multidisciplinary clinics with sport medicine physicians and orthopedic surgeons, and teaches an ACL rehabilitation group class called the Functional Agility and Strength Training (FAST) Program. Find her on Twitter as @yegphysio or online at www.yegphysiotherapy.com.   Read the full transcript below: Karen Litzy:                   00:00                Hey everybody. Welcome back to the podcast. I am coming to you live from Geneva, Switzerland at the WCPT meeting and right now I have the distinct pleasure of sitting across a table from Christina Lee. She is a PhD candidate at the University of Alberta and she's also a physio therapist. So Christina, welcome to the podcast. And today Christina did a wonderful platform presentation on Kinesiophobia after knee injury and we're going to definitely get to her study on that. But before we do, Christina, can you tell the listeners what is kinesiophobia? Christina Le:                                          So kinesiophobia is taken from the chronic low back pain literature and has been applied in our knee injury population as well. And it's an excessive and irrational fear of movement due to feeling vulnerable to pain or reinjury. Karen Litzy:                                           And so now let's get to your study. So what I'll have you do first is maybe tell us why you thought this was an important thing to look at. Christina Le:                  01:02                Yeah. So I think after knee injuries in sport, knee injuries in particular, and we're looking more at our youth, we know that there are a ton of different consequences that happen after knee injuries and they spend the physical, psychological and social domains of health. And this is just one that hasn't been studied to great length in our youth athletes in particular. And it's something that I think can contribute to poor long term health outcomes because it's the most common reason for kids quitting sport after they get injured. It's related to physical activity. So it's something that maybe we can manage a little bit better as clinicians and moving forward to help out with better long term outcomes. Karen Litzy:                                           Right. And that sort of lack of return to activity, lack of return to sport can, like you said, have long term outcomes. So we know that inactivity can lead to obesity and childhood diabetes and a lot of downstream consequences. Christina Le:                  01:58                Yeah, exactly. Posttraumatic osteoarthritis is probably one that’s stuck in my head right now. Just coming from the International World Congress as well. And we know that that can affect almost up to half of our youth injuries that have a knee injury as well. Karen Litzy:                                           All right. So let's break down the study for us. So I will just have you kind of take it away and talk about the study now that we know the why behind it. Go ahead. Christina Le:                                          Yeah, so we are currently running an ongoing prospective cohort study at the University of Alberta. It's a part of the prevention of early onset of osteoarthritis research group, I guess that was initiated out of the University of Calgary. And we're looking at youth athletes aged 11 to 19 who have sustained a sport related knee injury. So tibial femoral Patella femoral injury within the last three months. They had to have seen a physio therapist, a doctor or some sort of medical professional and had to have missed at least one session or one game from their sport to be considered injured. Christina Le:                  03:02                And then we're comparing them to age, sex and sport match controls. I'd say kind of 75% maybe through our study right now. And so this study that I presented on today is just a preliminary analysis of what our baseline data was. And what we were looking at was self reported kinesiophobia. So using the Tampa scale for Kinesiophobia and its influence on bilateral knee strength, using isokinetic dynamometer and triple single leg hop and Y balance test. Karen Litzy:                                           Okay. So those were all of the things that you are looking at, that's the data you are collecting? All right. Before we go on, I think most people know what a single leg three hop test is and the Tampa kinesio phobia scale you can look up, but can you talk about what the Y balance test is really quick just so people have a frame of reference as to what you're doing? Christina Le:                  03:53                Yeah, sure. So the Y balance test is we ask our participants to stand on one leg, hands on hips, so they can't use their upper extremity to help out with their balance. They're reaching as far anteriorly as they can while standing on one leg. And then they also do a posterior lateral and a posterior medial reach as well. We do three trials and we take the average of the three direction reaches. So one point they're planted on the injured or the index side and then the other time they're on the other side. Karen Litzy:                                           Perfect. All right. So continue. Now we know what you're measuring. We know who you're measuring. So now let's talk about how? Christina Le:                  04:41                So we are looking at our mean within paired differences.  So we take our injured scores, we subtract them from our uninjured scores in terms of study groups, and then we're just looking at the differences between the two groups on all those variables listed. And then we're also running a logistic regression model that's accounting for our match design. So it means that we are looking at the odds of scoring higher than 37 on the TSK. And we're looking at if there's a difference between our injured in uninjured groups in scoring higher or lower than that 37 and the 37 is based off of chronic low back pain literature where a study dichotomize their participants based on high fear responders are low fear responders based on that TSK score. Karen Litzy:                                           Right. And just so people know, the lower your score on the TSK, the less kinesiophobia you have and the higher score, the more kinesiophobia you are experiencing. Christina Le:                  05:39                Yeah, exactly. So I always say TSK is like a golf score. So higher scores worse lower scores better. And then we're also running separate multivariable linear regressions as well. So effectively looking at the Association of TSK on strength or triple single leg hop or Y balance. Karen Litzy:                                           Okay. And what did you find with that analysis? Christina Le:                                          So what we found was with our mean within pair differences, so when we're looking at our injured versus uninjured groups, just based on these variables alone, that the injury group scored on average about eight points higher on the TSK than the uninjured, which means that they are reporting greater kinesiophobia or higher kinesiophobia as you said. And they're also scoring lower on strength, which isn't maybe the most surprising finding considering they've just been injured. So we're testing them on a median of six weeks after injury. Christina Le:                  06:39                With our odds ratio where we found that the odds of scoring higher than 37 on the TSK was about 10 times greater for the injured group than the uninjured groups, which again, just means that they're more likely to be kind of in that high fear responders group. And then with our multivariable regression, we found that there is an association between our TSK scores and our knee extension strength bilaterally and actually flexion strength bilaterally as well. The differences or the relationship strength itself isn't the strongest. So if we have a one unit increase in our knee extension strength on our injured side for example, it just corresponded to a 0.1 decrease in the Tampa scale for Kinesiophobia, which is a minor change. Christina Le:                  07:40                It's probably not something that we can detect in all honesty or that's clinically relevant, but just tells us that there is some sort of association between Kinesiophobia and strength. Karen Litzy:                                           Got It. And so we know the results of your findings. What are your recommendations? What conclusions did you come to as a result of this study? Christina Le:                                          Yeah, so I think the two big take home messages is that kinesiophobia is present as early as the three months leading up to or after an injury. I think as clinicians we generally tend to look at this closer to the return to sport end of the spectrum of Rehab. But it's something that might be early, as our present, as early as three months. So we should be dealing with it as early as three months. And that it's potentially something that might affect both sides of the body as well. Christina Le:                  08:28                So if you've had a right knee injury, doesn't mean that you don't necessarily have kinesiophobia on that left knee as well. So it's just trying to get clinicians to think maybe a little bit more bigger picture here and that I think ultimately if we can address kinesiophobia early after an injury, then potentially we can set people up for more physically active lifestyles, that sort of thing. And then hopefully help out with that reduction of those poor long term negative health consequences. Karen Litzy:                                           And so as a practicing clinician, so let's say I am seeing a, just making this up off the top of my head this is not a patient I have I swear, I am seeing a 16 year old boy who plays Lacrosse and let's say he will use a term sprained his knee, maybe let's just say it's an ACL strain or sprain. Karen Litzy:                   09:22                So not a tear doesn't need surgery. So they're coming to me, should I be using the Tampa scale on the first visit that I see this person? Or do you wait for a little bit further down the line? Christina Le:                                          I don't think it hurts to be using that right away. I think that what these individuals with knee injuries or any MSK injury, realistically they might be fearful of different things at different times in their rehab. And I think picking that up early on might be able to detect that, oh, maybe he's scared of going downstairs or something like that. Whereas later stage Rehab, maybe it means that he's a little bit more fearful of changing directions with contact around. I don't think it hurts to necessarily use that Tsk early by any means.          Karen Litzy:                   10:13                Okay, great. So that's a nice take home for the clinicians listening that hey, this is easy. It's simple, it's free. You can get it online and just have your patient fill it out and it’s easy to score. We just heard if you're over 37, maybe that's something to worry about. The lower the number, the less kinesiophobia. So it's something that we can easily incorporate as clinicians with youth knee injuries. Can this be extrapolated to other injuries outside the knee and let's say the back? Christina Le:                                          So the tricky part with the TSK is that it actually hasn't been validated for knee injuries yet. So it's hard to say is this something that we can use in other areas? I'd really think that there is a need to validate this tool or if it's not, then to generate a tool specifically for knee injuries. Christina Le:                  10:59                Cause I think it's something that we discuss a lot as researchers, as clinicians with our patients. So for now I guess it's the best tool that we have but it doesn't mean that it's necessarily the right tool yet. Karen Litzy:                                           Yeah. Well something to add to your list. Get Jackie Whittaker and get your team together. And that's another study you can do because you have the time. Right? Christina Le:                                          Totally. Really hoping to bring on Doctor Johanna Krista at some points on this topic as well. So I think she's a good one to look at if you're curious about the kinesiophobia stuff in our knee injured population as well. Karen Litzy:                                           Awesome. And then because you said you're about 75% through the study of preliminary data. Where do you see this going? Christina Le:                                          So in the grand scheme of things for my own PhD, I'm going to be using this data to look at more health related quality of life in our young adults and our young athletes with sport related knee injury. Christina Le:                  11:55                I'm a big proponents of kind of that bigger picture. So again, I think as clinicians, we're really honed in on the whole return to sport thing as are our indicator of successful recovery. And looking at the literature, we know that only 66% of people return to their pre injury sport at the pre-injury level. And we don't really have great numbers for anything past probably two or three years either in terms of sport participation. So are we may be selling our patients short if we're only focused on that one thing as recovery versus again, kind of thinking bigger picture. Can we set them up in terms of physical health, psychological health, in terms of Kinesiophobia specifically, social health as well, so that they are able to maintain these healthy, active lifestyles, avoid osteoarthritis, avoid obesity, all that kind of stuff. Karen Litzy:                   12:47                Awesome. Well it sounds like you have big plans and I think it's only going to help clinicians and help the young athletes and young adults and teenagers and tweens that we treat on a regular basis. So thank you for your work. And now I have one more question. I probably should have told you this ahead of time, but I didn't cause I forgot. But the question is knowing where you are now in your career and in your life, what advice would you give to yourself as a new Grad out of physio school? Christina Le:                                          I would've said seek mentorship early and often. I think it took me a long and windy road to kind of get where I am and in all honesty, that's probably made me who I am now as well. Christina Le:                  13:32                But I think it would've been great to have maybe a little bit early on into my career as a new Grad, a little bit more mentorships with somebody or some people to kind of cling on to more or less to have a little bit of guidance in terms of what I should be doing, where I should be focusing my efforts on and spending my energy on. Karen Litzy:                                           Awesome, great advice. Now, where can people find you? Christina Le:                                          I am a on Twitter, I'm @YegPhysio, Yeg is the airport code for Edmonton, Canada. So that's why I'm that. And that's pretty much the only thing I'm active on in tems of social media for professional stuff. So, yeah. Karen Litzy:                                           Perfect. Well, thank you so much for taking some time out of your schedule here at WCPT to come on the podcast. Christina Le:                  14:17                Thank you so much. I'm going to throw a quick plug in for the world sports physiotherapy Congress in October in 2019 I'm hoping that all of you guys are going to be there cause we are going to be there. So you should have a lot of fun of you'll come. Karen Litzy:                                           Yes. And it's in Vancouver in and around that first weekend of October. Yes, the lineup looks fantastic and even if you don't work with a sports specific population, you can take all of this information and you can pair it down or you can pair it up to the population that you're seeing because it's all about concepts. It's not necessarily sports specific. Christina Le:                                          Yeah, exactly. I think it's something that's going to be useful for every MSK general practitioner out there. Whether again, yeah, you're in sport or not so highly, highly recommended. Yeah, you guys should all come out and hang out. Karen Litzy:                                           Yes, absolutely. We will both be there and I'm definitely looking forward to it. So, Christina, thank you again and everyone, thanks so much for listening. Have a great couple of days and stay healthy, wealthy, and smart.   Thanks for listening and subscribing to the podcast! Make sure to connect with me on twitter, instagram  and facebook to stay updated on all of the latest!  Show your support for the show by leaving a rating and review on iTunes!

Commentary by Dr. Valentin Fuster

Drs. Eric Wisotzky and Erika Gosai interview Dr. Andréane Richard-Denis, a clinician-scientist working at the University of Montreal Hospital Research Centre in Quebec, Canada. They discuss a recent study she co-authored, Relationships between Specific Functional Abilities and Health-Related Quality of Life in Chronic Traumatic Spinal Cord Injury, which was published in the August 2018 issue of the American Journal of Physical Medicine & Rehabilitation. The objective of this study was to explore the relationships between specific functional abilities assessed from the 3rd version of the Spinal Cord Injury Measure (SCIM), and health-related quality of life (HRQoL) following a traumatic spinal cord injury (tSCI).

We discuss Dr. Califf's comment on the "social media peanut gallery of experts", Dr. Drazen's comment on "research parasites" and his retirement from NEJM, the recent paper in JAMA on long-term follow up for antibiotics as compared to appendectomies, and the paper in JAMA Internal Medicine on the relationship between health-related quality of life and progression-free survival. Finally, we interview Dr. Bishal Gyawali on a variety of topics, including cancer groundshot.

Ursodeoxycholic acid (UDCA) is no longer recommended for management of adult patients with primary sclerosing cholangitis (PSC). We undertook a prospective evaluation of UDCA withdrawal in a group of consecutive patients with PSC. Twenty six patients, all treated with UDCA (dose range: 10-15 mg/kg/day) were included. Paired blood samples for liver biochemistry, bile acids, and fibroblast growth factor 19 (FGF19) were collected before UDCA withdrawal and 3 months later. Liquid chromatography/tandem mass spectrometry was used for quantification of 29 plasma bile acid metabolites. Pruritus and health-related quality of life (HRQoL) were assessed with a 10-point numeric rating scale, the Medical Outcomes Study Short Form-36 (SF-36), and PBC-40 questionnaires. UDCA withdrawal resulted in a significant deterioration in liver biochemistry (increase of alkaline phosphatase of 75.6%; P 

Background: The aim of the study was to analyze the effect of preoperative patient characteristics on health outcomes 6 months after total hip replacement (THR), to support patient's decision making in daily practice with predicted health states and satisfaction thresholds. By giving incremental effects for different patient subgroups, we support comparative effectiveness research (CER) on osteoarthritis interventions. Methods: In 2012, 321 patients participated in health state evaluation before and 6 months after THR. Health-related quality of life (HRQoL) was measured with the EQ-5D questionnaire. Hip-specific pain, function, and mobility were measured with the WOMAC in a prospective observation of a cohort. The predictive capability of preoperative patient characteristics - classified according to socio-demographic factors, medical factors, and health state variables - for changes in health outcomes is tested by correlation analysis and multivariate linear regressions. Related satisfaction thresholds were calculated with the patient acceptable symptom state (PASS) concept. Results: The mean WOMAC and EQ-5D scores before operation were 52 and 60 respectively (0 worst, 100 best). At the 6-month follow-up, scores improved by 35 and 19 units. On average, patients reported satisfaction with the operation if postoperative (change) WOMAC scores were higher than 85 (32) and postoperative (change) EQ-5D scores were higher than 79 (14). Conclusions: Changes in WOMAC and EQ-5D scores can mainly be explained by preoperative scores. The lower the preoperative WOMAC or EQ-5D scores, the higher the change in the scores. Very good or very poor preoperative scores lower the probability of patient satisfaction with THR. Shared decision making using a personalized risk assessment approach provides predicted health states and satisfaction thresholds.

Background: To facilitate the discussion on the increasing number of total hip replacements (THR) and their effectiveness, we apply a joint evaluation of hospital case costs and health outcomes at the patient level to enable comparative effectiveness research (CER) based on the preoperative health state. Methods: In 2012, 292 patients from a German orthopedic hospital participated in health state evaluation before and 6 months after THR, where health-related quality of life (HRQoL) and disease specific pain and dysfunction were analyzed using EQ-5D and WOMAC scores. Costs were measured with a patient-based DRG costing scheme in a prospective observation of a cohort. Costs per quality-adjusted life year (QALY) were calculated based on the preoperative WOMAC score, as preoperative health states were found to be the best predictors of QALY gains in multivariate linear regressions. Results: Mean inpatient costs of THR were 6,310 Euros for primary replacement and 7,730 Euros for inpatient lifetime costs including revisions. QALYs gained using the U.K. population preference-weighted index were 5.95. Lifetime costs per QALY were 1,300 Euros. Conclusions: The WOMAC score and the EQ-5D score before operation were the most important predictors of QALY gains. The poorer the WOMAC score or the EQ-5D score before operation, the higher the patient benefit. Costs per QALY were far below common thresholds in all preoperative utility score groups and with all underlying calculation methodologies.

Background: Solid-organ transplantations (SOT) are usually life-saving high-tech medical procedures. The transplantation itself and the intensive care unit stay could be traumatic stressors triggering posttraumatic stress symptoms (PTSS). Our retrospective follow-up study aimed to explore preoperative risk factors of PTSS in a cohort of SOT recipients, and we investigated how PTSS are associated with health-related quality of life (HRQOL) and life satisfaction. Methods: 126 SOT recipients were enrolled in this investigation. Psychiatric examination of all SOT candidates based on the Transplant Evaluation Rating Scale was carried out before SOT, and after SOT, recipients completed the PTSS-10, the SF-36 and the FLZ. Results: After the surgical intervention 19 (15.1%) SOT recipients had clinical significant PTSS. Preoperative risk factors for developing postoperative PTSS were: 1.) preexisting psychiatric morbidity, 2.) history of retransplantation, 3.) chronic benzodiazepine consumption, 4.) age, and 5.) type of transplantation. SOT-related PTSS were associated with maximal decrements in HRQOL and life satisfaction. The following HRQOL and life satisfaction domains were affected: Physical Functioning, Role Physical, Pain, General Health, Vitality, Social Functioning, Role Emotional, Mental Health, Occupation/Work and Character/Own Skills. Conclusion: SOT recipients may face a major risk of transplantation-and treatment-related PTSS and the development of impairments to HRQOL and life satisfaction.

Background: Little is known as to how health-related quality of life (HRQoL) when measured by generic instruments such as EQ-5D differ across smokers, ex-smokers and never-smokers in the general population; whether the overall pattern of this difference remain consistent in each domain of HRQoL; and what implications this variation, if any, would have for economic evaluations of tobacco control interventions. Methods: Using the 2006 round of Health Survey for England data (n = 13,241), this paper aims to examine the impact of smoking status on health-related quality of life in English population. Depending upon the nature of the EQ-5D data (i.e. tariff or domains), linear or logistic regression models were fitted to control for biology, clinical conditions, socio-economic background and lifestyle factors that an individual may have regardless of their smoking status. Age-and gender-specific predicted values according to smoking status are offered as the potential `utility' values to be used in future economic evaluation models. Results: The observed difference of 0.1100 in EQ-5D scores between never-smokers (0.8839) and heavy-smokers (0.7739) reduced to 0.0516 after adjusting for biological, clinical, lifestyle and socioeconomic conditions. Heavy-smokers, when compared with never-smokers, were significantly more likely to report some/severe problems in all five domains - mobility (67%), self-care (70%), usual activity (42%), pain/discomfort (46%) and anxiety/depression (86%) -. `Utility' values by age and gender for each category of smoking are provided to be used in the future economic evaluations. Conclusion: Smoking is significantly and negatively associated with health-related quality of life in English general population and the magnitude of this association is determined by the number of cigarettes smoked. The varying degree of this association, captured through instruments such as EQ-5D, may need to be fed into the design of future economic evaluations where the intervention being evaluated affects (e. g. tobacco control) or is affected (e. g. treatment for lung cancer) by individual's (or patients') smoking status.

Background: In line with patient-centered health care, it is necessary to understand patients’ perceptions of health. How stroke survivors perceive their health at different time points after stroke and which factors are associated with these feelings provide important information about relevant rehabilitation targets. Objective. This study aimed to identify the independent factors of health-related quality of life (HRQoL) from a biopsychosocial perspective using the methods of multivariate regression at 3 different time points poststroke. Methods. Included in the study were 99 patients from stroke units with diagnosed first-ever stroke. At admission and at 6 weeks, 3 months, and 1 year poststroke, HRQoL was assessed using the EuroQoL-5D Visual Analogue Scale (EQ-5D VAS). Consequences in Body Functions and Activities and Participation, and Environmental Factors were documented using 155 categories of the International Classification of Functioning, Disability and Health (ICF) Core Set for Stroke. Results. For a period of 1 year, problems with recreation and leisure, personality functions, energy and drive functions, and gait pattern functions were repeatedly associated with worse HRQoL. Whereas Body Functions and Activities and Participation explained more than three-fourths of the variances of HRQoL at 6 weeks and 3 months (R2 = 0.80-0.93), the variation at 1 year was best explained by either Body Functions or Environmental Factors (R2 = 0.51). Conclusions. The results indicate the importance of Body Functions and Activities and Participation (mainly personality functions and recreation and leisure) on HRQoL within 3 months poststroke, but increased impact of Environmental Factors on HRQoL at 1 year.

Narbenhernien stellen heutzutage ein großes sozioökonomisches Problem dar. Diese Studie befasste sich zunächst mit der Frage, ob die postoperative HRQoL zwischen Patienten mit laparoskopisch (LHR), bzw. offen (OHR) versorgten Narbenbrüchen Unterschiede aufzeigt. Einem zwischen den Jahren 1997 und 2005 operierten,131 Patienten (82 Frauen, 49 Männer, Alter 61,2 ± 11,2) umfassenden offen versorgten Patientenkollektiv wurden 25 (10 Frauen, 15 Männer, Alter 58,1 ± 11,4) im Zeitraum zwischen 2002 und 2005 laparoskopisch operierte Patienten gegenübergestellt. Es erfolgte eine umfangreiche Erfassung von patientenbezogenen und die Operation betreffenden Daten. Die Patienten wurden schließlich postoperativ mittels SF-36 Fragebogen zur individuellen HRQoL befragt. Mit Ausnahme eines signifikant größeren BMI für die laparoskopisch versorgte Gruppe zeigten sich keine signifikanten Unterschiede bezüglich der Patienten- bzw. Operationsdaten. Keine der acht Domänen des SF-36 zeigte einen statistisch signifikanten Unterschied zugunsten einer der beiden Gruppen. Auch diese Studie konnte also keine deutlich veränderte postoperative Lebensqualität für LHR oder OHR zeigen. Als Vorteil zugunsten der LHR darf die zumindest tendenziell (wenn auch nicht statistisch signifikante) niedrigere Rate an Komplikationen und die verhältnismäßig gute Durchführbarkeit bei adipösen Patienten gewertet werden. Nach denselben Kriterien wurden 12 (Alter 57,3 ± 11,8 Jahre; 4 Männer, 8 Frauen) mittels schwerer Netzprothesen (HW) versorgte Patienten, mit der gleichen Anzahl von Patienten nach Alter und Geschlecht (Alter 58,3 ± 11,1 Jahre, 5 Männer, 7 Frauen) gematcht, welche einer Hernienkorrektur mit leichtgewichtigen Netzen (LW) unterzogen worden waren. Auch hier erfolgte die Erfassung der HRQoL mittels SF-36 Fragebogen. Bezüglich Patienten und Operationsdaten war ebenso wenig ein signifikanter Unterschied zwischen den beiden Gruppen festzustellen, wie bei der Auswertung der SF-36 Items.

Es ist nur wenig bekannt über die Folgen eines kardiochirurgischen Eingriffs mit extrakorporaler Zirkulation (EKZ) bezüglich der Inzidenz psychiatrischer Erkrankungen, der kognitiven Leistungsfähigkeit sowie der gesundheitsbezogenen Lebensqualität (HRQOL). Von besonderer Bedeutung hierbei waren die Auswirkungen von kognitiven Dysfunktionen auf die HRQOL bei Patienten nach einer herzchirurgischen Operation. In diese prospektiv angelegte Studie wurden insgesamt 34 herzchirurgische Patienten konsekutiv eingeschlossen, die präoperativ, kurz vor Entlassung und nach einem Jahr durch ein strukturiertes klinisches Interview für DSM-IV und durch neuropsychologische Tests beurteilt wurden. Diese Tests beinhalteten den Syndrom Kurztest (SKT) für die Überprüfung der kognitiven Leistungsfähigkeit, die Montgomery-Åsberg Depression Rating Scale (MADRS) für die Einschätzung der Schwere einer affektiven Störung mit depressiven Merkmalen, den posttraumatic Stress Syndrome 10-Questions Inventory (PTSS-10) für die Quantifizierung einer posttraumatischen Belastungsstörung und den Short-Form 36 (SF-36) zur Bestimmung der gesundheitsbezogenen Lebensqualität. Die Delirium Rating Scale (DRS) wurde täglich während des gesamten Intensivaufenthalts angewendet, um bei einem Auftreten eines postoperativen Delirs die Schwere, bestimmen zu können. Präoperativ konnten bei 41,2% der Studienteilnehmer aktuelle psychiatrische Erkrankungen diagnostiziert werden, wovon 20,6% eine affektive Störung mit depressiven Merkmalen aufwiesen. Bei drei Patienten (8,8%) lag, durch Erlebnisse während des Zweiten Weltkrieges, in der Vorgeschichte ein PTSD vor, welche keine floride Symptomatik bei der Basisdatenerhebung zeigte. 23,5% (n= 8) der Patienten hatten in der Vorgeschichte einen Benzodiazepin- bzw. einen Alkoholabusus. Durch den SKT konnten präoperativ vier Patienten (11,8%) identifiziert werden, bei denen grenzwertige kognitive Störungen bestanden. Nach dem kardiochirurgischen Eingriff mit EKZ entwickelten 32,4% (n= 11) ein postoperatives Delir und 38,2% (n= 13) klinisch relevante kognitive Störungen. Wir konnten nachweisen, dass ein postoperatives Delir signifikant mit einem Substanzmissbrauch und mit dem postoperativen Auftreten eines akuten PTSD assoziiert war. 17,6% (n= 6) der Patienten entwickelten im postoperativen Verlauf ein akutes PTSD. Durch das SKID konnten wir bei 50% (n= 17) postoperativ affektive Störungen mit depressiven Merkmalen diagnostizieren, von denen 35,3% (n= 6) Kriterien für eine Majore-Depression erfüllten. Nach einem Jahr wurden von den ursprünglich 34 Patienten (100%) lediglich 30 Patienten (88,2%) nachuntersucht. Zu diesem Messzeitpunkt lag die Prävalenz für psychiatrische Erkrankungen bei 39,6% und erreichte wieder das Ausgangsniveau. Die kognitive Leistungsfähigkeit steigerte sich nach einem Jahr, zeigte jedoch einen signifikanten Unterschied zu den SKT-Werten, die präoperativ erhoben wurden. Bei der Bestimmung des HRQOL durch den SF-36 konnte ein Jahr nach der Operation eine signifikante Verbesserung festgestellt werden. In den Dimensionen körperliche Funktionsfähigkeit (PF), körperliche Rollenfunktion (RP) und emotionale Rollenfunktion (RE) erreichten unsere Studienpatienten nicht das Niveau wie die gesunde alters- und geschlechtsnormierte Kontrollgruppe. Ebenso gab es einen signifikanten Unterschied zu den Patienten, bei denen kognitive Störungen vorlagen. Diese Patientenkohorte hatte signifikant schlechtere HRQOL-Werte in den Dimensionen körperliche Rollenfunktion (PF) und psychisches Wohlbefinden (MH) im Vergleich zu Patienten ohne kognitive Defizite. Die Ergebnisse verdeutlichen, dass kardiochirurgische Eingriffe mit EKZ die gesundheitsbezogene Lebensqualität der meisten Patienten im Vergleich zur präoperativen Situation verbessern. Jedoch vermindert das Auftreten von langfristigen kognitiven Störungen die gesundheitsbezogene Lebensqualität und stellt somit für eine signifikante Minderheit von kardiochirurgischen Patienten eine bedeutende Komplikation dar.

Background. The study aimed to explore the prevalence of psychiatric disorders among orthotopic liver transplantation (OLT) recipients, and to investigate how psychiatric morbidity was linked to health-related quality of life (HRQOL). Methods: We recruited 75 patients who had undergone OLT a median of 3.8 years previously (range = 5-129 months). Psychiatric morbidity was assessed using the Structural Clinical Interview for the IDSM-III-R. Psychometric observer-rating and self-rating scales were administered to evaluate cognitive functioning (SKT), depressive symptomatology (HAMD(17)), Posttraumatic stress symptoms (PTSS-10), social support (SSS), and HRQOL (SF-36 Health Status Questionnaire). Treatment characteristics were obtained from medical records. Results: 22.7% (n = 17) of our sample had a current or probable psychiatric diagnosis according to DSM-III-R: 2.7% full posttraumatic stress disorder (PTSD) (n = 2), 2.7% major depressive disorder (MDD) comorbid to full PTSD (n = 2), 1.3% MDD comorbid to partial PTSD (n = 1), and 16% partial PTSD (n = 12). Patients with PTSD symptoms demonstrated lower cognitive performance, higher severity of depressive symptoms and more unfavorable perception of social support. OLT-related PTSD symptomatology was associated with maximal decrements in HRQOL. The duration of intensive care treatment, the number of medical complications, and the occurrence of acute rejection were positively correlated with the risk of PTSD symptoms subsequent to OLT. Conclusion: OLT-related PTSD symptomatology impairing HRQOL is a complication for a subgroup of OLT recipients. Health-care providers should be aware of the possible presence of PTSD in OLT survivors. Copyright (C) 2002 S. KargerAG, Basel.