Podcasts about hrql

Host Elizabeth H. Mack, MD, MS, FCCM, welcomes Elizabeth Y. Killien, MD, MPH, to discuss pediatric acute respiratory distress syndrome (PARDS). Dr. Killien explains the findings from her retrospective study on PARDS severity, emphasizing how factors such as severe hypoxemia can impact health-related quality of life (HRQL) after discharge. (Killien EY, et al. Pediatr Crit Care Med. 2024;25:816-827). Dr. Killien is an attending physician in the pediatric ICU and an assistant professor at Seattle Children's Hospital, University of Washington School of Medicine, in Seattle, Washington.

Host Elizabeth H. Mack, MD, MS, FCCM, welcomes Elizabeth Y. Killien, MD, MPH, to discuss pediatric acute respiratory distress syndrome (PARDS). Dr. Killien explains the findings from her retrospective study on PARDS severity, emphasizing how factors such as severe hypoxemia can impact health-related quality of life (HRQL) after discharge. (Killien EY, et al. Pediatr Crit Care Med. 2024;25:816-827). Dr. Killien is an attending physician in the pediatric ICU and an assistant professor at Seattle Children's Hospital, University of Washington School of Medicine, in Seattle, Washington.

This is the Weight and Healthcare newsletter! If you like what you are reading, please consider subscribing and/or sharing!In part 1 we talked about a request that has been submitted for the World Health Organization (WHO) to add diet drugs (specifically GLP1 agonists like Novo Nordisk's Saxenda and Wegovy) to their list of “essential medicines.” We discussed who was making this request and the justification that they were using. In part 2 we took a deeper dive into the research that they used to try to support this request, and in this final installment, we will look at the research around efficacy, harm, and cost-effectiveness.First I'll offer a summary for each issue and then I'll give a breakdowns of the research that they cite.  Just a quick reminder that this request is asking the World Health Organization (WHO) to add these drugs to their list of “essential medications” globally.Before we get into the sections, I want to mention two overarching issues that are found throughout the entirety of this request and the studies that are used to support it.First, in general, a belief has been fomented (predominantly by those in the weight loss industry) that being higher-weight is so terrible then it's worth “throwing anything at the problem.” This leads to acceptance of poor, short-term, and/or incomplete data as “good enough” to foist recommendations onto higher-weight people, which means that part of weight stigma in healthcare is that higher-weight people are afforded less right to ethical, evidence-based medicine than thinner people.Second, is clinging to correlation (without any mechanism of causation) when it comes to weight, health, and health outcomes, including the abject failure to consider confounding variables. So throughout these studies “being higher-weight is associated with [health issue(s)]” stated uncritically in support of weight loss interventions. There is an utter failure to explore the idea that the reason for the outcome differences is not weight itself but, instead, exposure to weight stigma, weight cycling (which these medications actually perpetuate by their own admission,) and healthcare inequalities.  Issues with research supporting effectiveness, harms, and benefitsStudy Duration:This is the main issue. While there was one study that went up to 106 weeks, the vast majority of the studies are between 14 and 56 weeks. We know that these drugs can have significant, even life-threatening side effects (earning them the FDA's strongest warning.) 14-56 weeks is not not nearly enough time to capture the danger of long-term effects, or to capture long-term trends around weight loss/weight regain.Study PopulationMany of the studies included have small samples. Many have study populations are overwhelmingly white, which is a huge issue when making a global recommendations.Small effect and overlapMany of the studies show only a bit of weight loss (often 15lbs or less) and often there was overlap in weight lost between the treatment group and the placebo group. Even using the “ob*sity” construct that this request is based on, for many people, this amount of weight loss wouldn't even change their “class” of “ob*sity.”Failure to capture adverse eventsMuch of the research they use to support their claims of safety didn't actually capture individual adverse events or serious adverse events. Often they only captured subjects who reported leaving treatment due to side effects.Issues with research supporting cost effectivenessThe cost-effectiveness analyses they cite are based on Quality Adjusted Life Years (QALYs). This is a measurement of the effectiveness of a medical intervention to lengthen and/or improve patients' lives.The calculation for this is [Years of Life * Utility Value = #QALY]So if a treatment gives someone 3 extra years of life with a Health-Related Quality of Life (HRQL) score of 0.7, then the treatment is said to generate 2.1 [3 x 0.7] QALYs.This is a complicated and problematic concept that deserves its own post sometime in the future, but looking just at this request I think it's important to note that they are working on two main unproven assumptions:1. That being higher weight causes lower health-related quality of life and/or shorter life span (rather than any lower HRQL being related to experiences that higher-weight people have including weight stigma, weight cycling, healthcare inequalities et al.) 2. That this treatment induces weight loss and/or health benefits that increase the life span and/or health-related quality of life of those who take it.I don't believe either of these assumptions are proven by the material cited in the request to the WHO. Specifically, it's very possible that it's not living in a higher-weight body, but rather the experiences that higher-weight people are more likely to have (weight stigma, weight cycling, healthcare inequalities) that impact their HRQL.Further, the short-term efficacy data available (and Novo Nordisk's own admission about high rates of regain) fall far short of proving any assumptions about these drugs ability to actually improve or extend life. Further, the failure of the literature to adequately capture negative side effects of the drugs, both short and long-term, means that this calculation cannot be properly made.Incremental Cost-Effectiveness Ratio (ICER)ICER is how QALYs are turned into a monetary value. It is calculated by dividing the difference in total costs by the difference in the chosen measure of health outcome or effect.[(Cost of intervention A -Cost of Intervention B) / (Effectiveness of Intervention A – Effectiveness of Intervention B)]The result is a ratio of extra cost per extra unit of health effect of a more vs less expensive treatment which can then be measured in QALYs.Again, this is worthy of its own post because there are all kinds of ethical issues around things like how we value life, how we define “healthy” and the ethics of determining whether or not prolonging someone's life is “cost effective.” I'm not going to do a deep dive into that today, but I do want to note that it is a serious issue in these kinds of calculations.In this specific case, even if one was to get past the ethical issues, an accurate calculation is impossible to make on both of the measures of the equation.Cost of these drugs varies wildly between countries and sometimes within countries because, for example, Novo Nordisk is a for-profit corporation whose goal is to create as much profit as possible.  Per the WHO request letter, the monthly cost of liraglutide is $126 in Norway and $709 in the US. Semaglutide is $95 per 30 days in Turkey, but $804 per 30 days in US.When it comes to effectiveness of the treatment, again, there is virtually no long-term data. We do know that in Novo Nordisk's own studies, weight is regained rapidly and cardiometabolic benefits are lost when the drugs are discontinued and even when people stay on the drugs, weight loss levels off after about a year, at 68 weeks weight cycling begins, and at 104 weeks (when follow-up ended) weight was trending up. It's possible that these drugs are utterly ineffective over the long-term and/or that the prevalence of long-term side effects renders any treatment effects moot. We simply do not know.I do not think that this is a remotely appropriate basis from which to request that these drugs be declared globally essential by the WHO.Here are the citation breakdowns. These are not deep dives since there are enough issues with the research on a simple surface analysis.Breakdowns of evidence of comparative effectivenessEffects of liraglutide in the treatment of ob*sity: a randomised, double-blind, placebo-controlled study, Astrup et al.)This is a 20-week study funded by Novo Nordisk. It included 564 people on various doses of liraglutide and a placebo group who didn't get the drug and a group on orlistat. There were no more than 90-98 people in each group.The study explains “Participants on liraglutide lost significantly more weight than did those on placebo” by which they meant that those on the highest dose of liraglutide lose about 9.7lbs more than those on the placebo over the 20 weeks.III LEAD studiesThese are four studies that look at liraglutide in combination with other drugs for the treatment of Type 2 Diabetes that also included some information on weight changes. One was 52 weeks, the others were  26, the maximum amount of weight lost was only about 5lbs.   The first [Liraglutide, a once-daily human GLP-1 analogue, added to a sulphonylurea over 26 weeks produces greater improvements in glycaemic and weight control compared with adding rosiglitazone or placebo in subjects with Type 2 diabetes (LEAD-1 SU), Marre et al] was a study that looked at the efficacy of adding liraglutide or rosiglitazone 4 to glimiperide in subjects with Type 2 Diabetes to test effects on blood sugar and body size.The study followed 1041 adults for 26 weeks. The study found that those on .6mg of liraglutide gained 0.7kg, those on 1.2mg gained 0.3kg, and those on 1.8mg of liraglutide lost 0.2kg, while those on placebo lost 0.1kg.The second [Efficacy and safety comparison of liraglutide, glimepiride, and placebo, all in combination with metformin, in type 2 diabetes: the LEAD (liraglutide effect and action in diabetes)-2 study. Diabetes Care, 2009. 32(1): p. 84-90. Nauck, M., et al.,]looked at the efficacy of adding liraglutide to metformin therapy for those with Type 2 Diabetes. They found that over the 26-week study those on liraglutide lost 1.8 ± 0.2, 2.6 ± 0.2, and 2.8 ± 0.2 kg for 0.6, 1.2, and 1.8 mg doses. Those on placebo lost 1.5 ± 0.3kg.The third [Liraglutide versus glimepiride monotherapy for type 2 diabetes (LEAD-3 Mono): a randomised, 52-week, phase III, double-blind, parallel-treatment trial. Lancet, 2009. 373(9662): p. 473-81. Garber, A., et al.,] This was a study of the comparative effectiveness of Liraglutide versus glimepiride for type 2 diabetes, with small weight loss as an ancillary finding. Those in the liraglutide group lost an average of 2kg.The final study [Efficacy and safety of the human glucagon-like peptide-1 analog liraglutide in combination with metformin and thiazolidinedione in patients with type 2 diabetes (LEAD-4 Met+TZD), Zinman et al.]  was a 26-week study with 533 total subjects. The goal was to study the efficacy of liraglutide when added to metformin and rosiglitazone for people with type 2 diabetes. They found that those on liraglutide lost between 0.7 and 2.3kg (1.5lbs to 5.1lbs) in 26 weeks.Meta-Analyses and Systematic Review FindingsEfficacy of Liraglutide in Non-Diabetic Ob*se Adults: A Systematic Review and Meta-Analysis of Randomized Controlled Trials. Barboza, J.J., et al., None of the included studies were more than 56 weeks and one was only 14 weeks. One had as many as 3731 subjects, but one had only 40. Some had body weight loss as a primary outcome, but some did not. Maximum doses ranged from 1.8 to 3.0mg. The mean body weight reduction was  3.35 kg (7.4lbs) but in one study there was no difference in weight loss. The maximum difference was 6.3kg (13.9lbs)They also refer to Iqbal et al which we discussed in part 2.Effects of glucagon-like peptide-1 receptor agonists on weight loss: systematic review and meta-analyses of randomised controlled trials. Vilsbøll, T., et al.The included studies are between 20 and 53 weeks long, and include some of the studies they already cited individually above. Of the 25 included studies only 3 had “ob*sity” as the main inclusion criteria, the rest were Type 2 Diabetes.The mean weight loss for those on the highest dose of the drug was between 0.2kg and 7.2kg. For those in the control group it was 2.9 kg, so there was actually overlap between the treatment and placebo groups.Summary of evidence of safety and harmsThey begin with the claim “The safety profile of GLP-1 receptor agonists is also well studied”To support this they cite: Efficacy and Safety of Liraglutide 3.0 mg in Patients with Overweight and Ob*se with or without Diabetes: A Systematic Review and Meta-Analysis, Konwar, M., et al.,This included 14 total studies, many of which the authors of the WHO request had cited individually and were included in other systematic reviews and meta-analyses above. The smallest study included 19 people, the largest included 2,487. The total number of subjects was 4,142.Their conclusion was “Liraglutide in 3.0 mg subcutaneous dose demonstrated significant weight reduction with a reasonable safety profile for patients with overweight or ob*sity regardless of diabetic status compared to placebo.”Their methodology says that they omitted studies from analysis due to “short duration.” They included studies that had a minimum of 12 weeks and a maximum of 56 weeks of follow-up.While they included 14 studies, only 11 of them actually included information about adverse events.In terms of adverse effects (AEs,) they found that the pooled estimate of nine studies in nondiabetic patients and two studies in diabetic patients revealed a significant proportion of patients experiencing the adverse events in liraglutide 3.0 mg group when compared with placebo., and the pooled estimate of the eleven studies showed that liraglutide 3.0 mg had higher risk of AEs compared to placebo.When it came to “serious adverse events” they found that there was a similar risk level between the drug and placebo groups, but remember that's for only 12 to 56 weeks, and Novo Nordisk is recommending that people take these drugs for the rest of their lives. A few months to a little over a year is not enough time to capture long-term serious adverse events.The efficacy and safety of liraglutide in the ob*se, non-diabetic individuals: a systematic review and meta-analysis. Zhang, P., et al.,This included five RCTs (which were included in various of the above systemic reviews and meta-analyses) ranging in follow-up from 14 to 56 weeks.The only adverse event information captured was the number of people who withdrew from treatment due to adverse events (which they found was similar between drug and placebo) and nausea (which was experienced more by people on the drug.)So, in addition to being short in duration, this was far from a comprehensive list of side effects. They made no attempt to capture serious adverse side effects and their short-term nature would have made this difficult anyway.Association of Pharmacological Treatments for Ob*sity With Weight Loss and Adverse Events: A Systematic Review and Meta-analysis. Khera, R., et al.This looked at weight loss and adverse events with a number of different weight loss drugs. Interestingly liraglutide did not show the highest amount of weight loss but was associated with the highest odds of adverse event–related treatment discontinuation. It should also be noted that high drop-out rates of 30-45% plagued all of the trials which the study authors admit means that “studies were considered to be at high risk of bias.“Given that those who drafted the WHO request are asking that these drugs be considered essential globally, it is disappointing that they included this study and didn't bother to mention this issue in their written request.This included 28 RCTs (most of which were included in other citations above) and only 3 that included liraglutide. They didn't capture individual adverse events, but only “Discontinuation of Therapy Due to Adverse Events.” They only evaluated a year of data so, again, while it is likely that these studies would have captured common adverse events had they bothered to try, there isn't long enough follow-up to have any information about serious (possibly life-threatening) long-term adverse events.Association of Glucagon-like Peptide 1 Analogs and Agonists Administered for Ob*sity with Weight Loss and Adverse Events: A Systematic Review and Network Meta-analysis. Vosoughi, K., et al.,This study included 64 RCTs with durations from 12 to 160 weeks, with a median of 26 weeks. As is common in these studies, the majority of the sample (74.9%) was white.Like those above, they only looked at treatment discontinuation from adverse events, they did not capture specific adverse events (common or serious.) Of the seven GLP-1 drugs they tested, liraglutide was tied with taspoglutide for the highest discontinuation of treatment due to adverse events.The study authors also note that “Risk of bias was high or unclear for random sequence generation (29.7%), allocation concealment (26.6%), and incomplete outcome data (26.6%).”Breakdowns for Comparative Cost-effectiveness StudiesFirst, the WHO request authors themselves admit that when it comes to cost-effectiveness, “the analyses have generally been performed only for high-income countries.” This is significant since they are asking the WHO to consider these drugs essential for the entire world.It's also important to understand that none of the data looks at a comparison of cost effectiveness for weight-neutral health interventions to these drugs. Without that information there is no way to calculate actual “cost effectiveness” since it's possible that weight-neutral health interventions would have greater benefits with less risk and dramatically lower cost.  NICE's guidance:  Liraglutide for managing overweight and ob*sity Technology appraisal guidance [TA664]Published: 09 December 2020.Do recall that NICE is involved in the current scandal with Novo Nordisk for influence peddling.These guidelines are created based on a submission of evidence by Novo Nordisk. The committee's understanding of “clinical need” was based on the testimony of a single “patient expert” who “explained that living with ob*sity is challenging and restrictive. There is stigma associated with being ob*se.”Once again we see a rush to blame body size for any “challenges” and “restrictions” of living in a higher-weight body, accompanied by the immediate decision that those bodies should be subjected to healthcare interventions that risk their lives and quality of life in order to be made (temporarily, by Novo and NICE's own admission) thinner.  There did not seem to be a patient expert to discuss the weight-neutral options.It was not immediately apparent if the patient expert was provided/paid by Novo Nordisk, but they certainly forwarded their narrative that simply living in a higher-weight body is a disease requiring treatment.It should be noted that while the trial Novo Nordisk submitted covered a wider range of people, they specifically submitted for this recommendation only the subgroup of that population who were diagnosed with “ob*sity,”  pre-diabetes, and a “high risk of cardiovascular disease based on risk factors such as hypertension and dyslipidaemia.”So, even if we accept this guidance as true, the WHO Essential Medicines request applies to a population much wider than this and so this fails to justify the cost-effectiveness for that population.This guidance is also based on the costs associated with obtaining the drugs through a “specialist weight management service” since an agreement is in place for Novo Nordisk to give a discount to these services.In calculating the ICER per QALY gained, the recommendations note that “Because of the uncertainties in the modelling assumptions, particularly what happens after stopping liraglutide and the calculation of long-term benefits, the committee agreed that an acceptable ICER would not be higher than £20,000 per QALY gained”Again, this recommendation is based on a trial submitted by Novo Nordisk that included 3,721 people and lasted for three years, but only 800 met the criteria for this cost-effectiveness recommendation. The trial failed to show a significant reduction in cardiovascular events. Novo's calculation of risk reduction was based on surrogate outcomes, which NICE points out “introduces uncertainty because causal inference requires direct evidence that liraglutide reduces cardiovascular events. This was not provided in the company submission because of lack of long-term evidence.”The NICE committee admits “relying on surrogates is uncertain but accepted that surrogate outcomes were the only available evidence to estimate cardiovascular benefits.”I just want to point out that another option would be to refuse to experiment on higher-weight people without appropriate evidence.These cost-effectiveness calculations are based on someone using the drug for two years, with no actual data on reduction in cardiovascular events, and with the admitted assumption that “any weight loss returned to the base weight 3 years after treatment discontinuation.” Said another way, this committee decided that it was cost effective to spend up to £20,000 per QALY for people to take a weight loss drug with significant side effects for two years, with no direct evidence of reduced cardiovascular events, and with the acknowledgment that people will be gaining all of their weight back when they stop taking it.Those who wrote the request for WHO to consider these drugs “essential” chose to characterize this as “At the chosen threshold of £20,000 per quality-adjusted life year (QALY) gained, the report concluded that liraglutide is cost-effective for the management of ob*sity.” I do not think that is an accurate characterization of the findings.The request cites “A report by the Canadian Agency for Drugs and Technologies in Health (CADTH) found that compared to standard care, the ICER for liraglutide was $196,876 per QALY gained”For the US, they cite a study that found that to achieve ICERs between $100,000 and $150,000 perQALY or evLY gained, the health-benefit price benchmark range for semaglutide was estimated as $7500 - $9800 per year, which would require a discount of 28-45% from the current US net price.They also cite “Cost-effectiveness analysis of semaglutide 2.4 mg for the treatment of adult patients with overweight and ob*sity in the United States, Kim et al.Let's take a look at their conflict of interest disclosure (emphasis mine)“Financial support for this research was provided by Novo Nordisk Inc. The study sponsor [that means Novo Nordisk] was involved in several aspects of the research, including the study design, the interpretation of data, the writing of the manuscript, and the decision to submit the manuscript for publication.Dr Kim and Ms Ramasamy are employees of Novo Nordisk Inc. Ms Kumar and Dr Burudpakdee were employees of Novo Nordisk Inc at the time this study was conducted. Dr Sullivan received research support from Novo Nordisk Inc for this study. Drs Wang, Song, Wu, Ms Xie, and Ms Sun are employees of Analysis Group, Inc, who received consultancy fees from Novo Nordisk Inc in connection with this study.”Given that, you probably won't be shocked to learn that this concluded that Novo Nordisk's drug, semaglutide, was cost-effective. The reason I bolded the text above is that this study is based on modeling – they are taking what is, by their own admission, a “new drug” and making predictions for 30 years. Everything was simulated based on trial data (you know, those trials that we've been discussing that often have horrendous methodology…) and “other relevant literature.” The construction of the modeling and the interpretation of the results was directed by the company who stands to benefit financially from the findings, and carried out by that company's employees and consultants.  Also, and I'll just quote again here since I don't think I can improve on their text “Cost-effectiveness was examined with a willingness-to-pay (WTP) threshold of $150,000 per QALY gained” I do not think that this WTP is based on a global assessment.In their (and by their I mean Novo Nordisk's) modeling they find that semaglutide was estimated to improve QALYs by 0.138 to 0.925 and incur higher costs by $3,254 to $25,086 over the 30-year time horizon vs comparators.And, again, this is without any kind of actual long-term data. I think that the best way to characterize this information is “back of the envelope calculations” at best.To sum up, I do not think that the research they cite comes anywhere close to proving that these drugs have levels of efficacy, safety, or cost-effectiveness that warrant their addition to the WHO list of essential medicines. I believe that if the WHO grants this request I think it will be an affront to medical science, it will cheapen the concept of “essential medicines,” and it will harm untold numbers of higher-weight people all over the world.Did you find this post helpful? You can subscribe for free to get future posts delivered direct to your inbox, or choose a paid subscription to support the newsletter and get special benefits! Click the Subscribe button below for details:Liked this piece? Share this piece:More research and resources:https://haeshealthsheets.com/resources/*Note on language: I use “fat” as a neutral descriptor as used by the fat activist community, I use “ob*se” and “overw*ight” to acknowledge that these are terms that were created to medicalize and pathologize fat bodies, with roots in racism and specifically anti-Blackness. Please read Sabrina Strings' Fearing the Black Body – the Racial Origins of Fat Phobia and Da'Shaun Harrison's Belly of the Beast: The Politics of Anti-Fatness as Anti-Blackness for more on this. Get full access to Weight and Healthcare at weightandhealthcare.substack.com/subscribe

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

Health-related quality of life (HRQL) is the impact of a health condition on the individual’s ability to lead a fulfilling life. Researchers have identified determinants of HRQL in stroke survivors with aphasia to include communication, mobility, mental/emotional health, role, and social functioning. The use of patient-reported outcomes to capture HRQL in people with aphasia may better facilitate client-centered treatment approaches in this population. --- Send in a voice message: https://anchor.fm/speech-uncensored/message

Health-related quality of life (HRQL) is the impact of a health condition on the individual's ability to lead a fulfilling life. Researchers have identified determinants of HRQL in stroke survivors with aphasia to include communication, mobility, mental/emotional health, role, and social functioning. The use of patient-reported outcomes to capture HRQL in people with aphasia may better facilitate client-centered treatment approaches in this population. Visit the show notes for additional resources: https://www.speechuncensored.com/podcastepisodes/s3e23

Background: It is widely recognized that health-related quality of life (HRQL) is impaired in patients with Chronic Obstructive Pulmonary Disease (COPD), but there is a lack of research on longitudinal associations of COPD and HRQL. This study examined the effects of COPD in early stages of disease on HRQL over ten years in a working-age general population setting in Southern Germany while considering the influence of common comorbidities. Methods: In the population-based KORA F4 study (2006-08) 1,321 participants aged 41-61 years performed spirometry and reported information on HRQL (measured by the generic SF-12) and comorbidities. For the same participants, HRQL information was available seven years before and three years after the lung function test from the previous S4 (1999-2001) and the F4L follow-up study (2010). Using linear mixed models, the physical and mental component summary scores (PCS-12 / MCS-12) of the SF-12 were compared over time between COPD groups. Results: 7.8% of participants were classified as having COPD (according to the LLN definition and the Global Lungs Initiative), 59.4% of them in grade 1. Regression models showed a negative cross-sectional association of COPD grade 2+ with PCS-12 which persisted when comorbidities were considered. Adjusted mean PCS-12 scores for the COPD grade 2+ group were reduced (-3.5 (p = 0.008) in F4, -3.3 (p = 0.014) in S4 and -4.7 (p = 0.003) in F4L) compared to the group without airflow limitation. The size of the COPD effect in grade 2+ was similar to the effect of myocardial infarction and cancer. Over ten years, a small decline in PCS-12 was observed in all groups. This decline was larger in participants with COPD grade 2+, but insignificant. Regarding MCS-12, no significant cross-sectional or longitudinal associations with COPD were found. Conclusion: Despite small HRQL differences between COPD patients in early disease stages and controls and small changes over ten years, our results indicate that it is important to prevent subjects with airflow limitation from progression to higher grades. Awareness of HRQL impairments in early stages is important for offering early interventions in order to maintain high HRQL in COPD patients.

Background: Health-related quality of life (HRQL) is considered as an important outcome parameter in patients with chronic diseases. This study aimed to assess the role of disease-specific HRQL for long-term survival in patients of different diagnoses with chronic hypercapnic respiratory failure (CHRF). Methods: In a cohort of 231 stable patients (chronic obstructive pulmonary disease (COPD), n = 98; non-COPD (obesity-hypoventilation syndrome, restrictive disorders, neuromuscular disorders), n = 133) with CHRF and current home mechanical ventilation (HMV), HRQL was assessed by the disease-specific Severe Respiratory Insufficiency (SRI) questionnaire and its prognostic value was prospectively evaluated during a follow-up of 2-4 years, using univariate and multivariate regression analysis. Results: HRQL was more impaired in COPD (mean +/- SD SRI-summary score (SRI-SS) 52.5 +/- 15.6) than non-COPD patients (67.6 +/- 16.4; p < 0.001). Overall mortality during 28.9 +/- 8.8 months of follow-up was 19.1% (31.6% in COPD, 9.8% in non-COPD). To identify the overall role of SRI, we first evaluated the total study population. SRI-SS and its subdomains (except attendance symptoms and sleep), as well as body mass index (BMI), leukocyte number and spirometric indices were associated with long-term survival (p < 0.01 each). Of these, SRI-SS, leukocytes and forced expiratory volume in I s (FEV(I)) turned out to be independent predictors (p < 0.05 each). More specifically, in non-COPD patients SRI-SS and most of its subdomains, as well as leukocyte number, were related to survival (p < 0.05), whereas in patients with COPD only BMI and lung function but not SRI were predictive. Conclusion: In patients with CHRF and HMV, the disease-specific SRI was an overall predictor of long-term survival in addition to established risk factors. However, the SRI predominantly beared information regarding long-term survival in non-COPD patients, while in COPD patients objective measures of the disease state were superior. This on one hand highlights the significance of HRQL in the long-term course of patients with CHRF, on the other hand it suggests that the predictive value of HRQL depends on the underlying disease.

In der vorliegenden Arbeit wurde eine Querschnittsanalyse der Lungenfunktion und der gesundheitsbezogenen Lebensqualität bei insgesamt 50 Langzeitüberlebenden nach ARDS untersucht (im Median 5,5 Jahre nach Extubation). Das untersuchte Patientenkollektiv rekrutierte sich aus einer 1995 retrospektiv identifizierten Kohorte von 80 ehemaligen ARDS-Patienten, die zwischen Januar 1985 und Januar 1995 an der Klinik für Anaesthesiologie der Ludwig-Maximilians-Universität München behandelt wurden. Anhand der erhobenen Daten konnte gezeigt werden: 1. Bei der Mehrzahl der ehemaligen ARDS-Patienten persistieren pathologische Lungenfunktionswerte auch noch nach Jahren, wobei sich als häufigste Störung eine Reduktion des exspiratorischen Flows im Sinne einer während des ARDS erworbenen „small airway disease“ bei 32 % aller Patienten zeigte. 2. Es konnte zwischen Schwere der initialen Lungenschädigung und dem späteren Grad der Einschränkung der Lungenfunktion keine direkte Beziehung nachgewiesen werden. 3. Es besteht ein signifikanter Zusammenhang zwischen gesundheitsbezogener Lebensqualität und Zahl der eingeschränkten Lungenfunktionsparameter. 4. Bei den meisten Patienten war die gesundheitsbezogene Lebensqualität in allen Bereichen des SF-36-Scores im Vergleich zu einer alters- und geschlechtsspezifisch identischen Kontrollgruppe reduziert. Hierbei war die größte Reduktion im Bereich der auf somatischer Ebene erfassten Kategorien festzustellen, eine geringere Reduktion zeigte sich bei psychosozialen Kategorien. Erkennbar war durch Heranziehung des SF-36-Scores der Voruntersuchung ein signifikanter Trend der Besserung bei beiden Komplexen im Langzeitverlauf. 5. Lediglich bezüglich der Diffusionskapazität DLCO besteht eine positive Korrelation zwischen Normalisierung dieses Parameters der Lungenfunktion und der gleichzeitigen Verbesserung der HRQL. 6. Leichte somatische und psychosoziale Einschränkungen bei Langzeitüberlebenden nach ARDS sind häufig nach Jahren noch nachweisbar und vermutlich von bleibender Natur. 7. Der Großteil der Patienten erreicht wieder eine generelle körperliche Erholung, einen ausreichenden HRQL- Wert und war wieder in der Lage einer Erwerbstätigkeit nachzugehen. 8. Patienten, die multiple Einschränkungen ihrer Lungenfunktion nach ARDS aufweisen, sind gefährdet eine dauerhafte, schwere Beeinträchtigung ihrer körperlichen und geistigen gesundheitsbezogenen Lebensqualität zu erleiden und benötigen daher eine gründliche körperliche und psychologische Evaluierung.