Patient-Patient Centered Outcomes Research最新文献

{"title":"Comparing Outcomes of a Discrete Choice Experiment and Case 2 Best-Worst Scaling: An Application to Neuromuscular Disease Treatment.","authors":"Vikas Soekhai,&nbsp;Bas Donkers,&nbsp;Jennifer Viberg Johansson,&nbsp;Cecilia Jimenez-Moreno,&nbsp;Cathy Anne Pinto,&nbsp;G Ardine de Wit,&nbsp;Esther de Bekker-Grob","doi":"10.1007/s40271-023-00615-0","DOIUrl":"https://doi.org/10.1007/s40271-023-00615-0","url":null,"abstract":"<p><strong>Background and objectives: </strong>Case 2 best-worst scaling (BWS-2) is an increasingly popular method to elicit patient preferences. Because BWS-2 potentially has a lower cognitive burden compared with discrete choice experiments, the aim of this study was to compare treatment preference weights and relative importance scores.</p><p><strong>Methods: </strong>Patients with neuromuscular diseases completed an online survey at two different moments in time, completing one method per occasion. Patients were randomly assigned to either first a discrete choice experiment or BWS-2. Attributes included: muscle strength, energy endurance, balance, cognition, chance of blurry vision, and chance of liver damage. Multinomial logit was used to calculate overall relative importance scores and latent class logit was used to estimate heterogeneous preference weights and to calculate the relative importance scores of the attributes for each latent class.</p><p><strong>Results: </strong>A total of 140 patients were included for analyses. Overall relative importance scores showed differences in attribute importance rankings between a discrete choice experiment and BWS-2. Latent class analyses indicated three latent classes for both methods, with a specific class in both the discrete choice experiment and BWS-2 in which (avoiding) liver damage was the most important attribute. Ex-post analyses showed that classes differed in sex, age, level of education, and disease status. The discrete choice experiment was easier to understand compared with BWS-2.</p><p><strong>Conclusions: </strong>This study showed that using a discrete choice experiment and BWS-2 leads to different outcomes, both in preference weights as well as in relative importance scores, which might have been caused by the different framing of risks in BWS-2. However, a latent class analysis revealed similar latent classes between methods. Careful consideration about method selection is required, while keeping the specific decision context in mind and pilot testing the methods.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/fc/c1/40271_2023_Article_615.PMC10121531.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9755036","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient Preferences for Attributes that Characterise Alternative Models of Care in Gastroenterology: A Discrete Choice Experiment.","authors":"Rumbidzai N Mutsekwa,&nbsp;Katrina L Campbell,&nbsp;Russell Canavan,&nbsp;Brendan Mulhern,&nbsp;Rebecca L Angus,&nbsp;Joshua M Byrnes","doi":"10.1007/s40271-022-00609-4","DOIUrl":"https://doi.org/10.1007/s40271-022-00609-4","url":null,"abstract":"<p><strong>Objectives: </strong>Increased demand for gastroenterology services has resulted in growing waitlists, with patients at risk of exceeding clinically recommended wait-times. Given limited healthcare resources, expanded scope models of care are an option to help address this demand, but little is known about patient preferences for these models of care.</p><p><strong>Methods: </strong>Low-risk gastroenterology patients (n = 1198) referred to an outpatient tertiary service in Australia over a 2-year period were invited to participate in an unlabelled discrete choice experiment with seven attributes: primary healthcare professional, wait-time, continuity of care, consultation length, manner and communication skills, reassurance, and cost. These were developed using qualitative research, literature review, and stakeholders' experiences. A d-efficient fractional design was used to construct four blocks of 12 choice sets, with two alternatives. A 13th choice set was included as a data and quality check. Latent class and mixed logit regression were used for analysis. The resulting preference parameters for individual attributes were then used to calculate willingness to pay and willingness to wait.</p><p><strong>Results: </strong>Overall, the model based on the 347 respondents suggested no strong preference for professional background. All other attributes were statistically significant predictors of preference (p < 0.001), with respondents willing to make significant trade-offs (time and cost) before accepting deterioration in attributes. There was strong emphasis on manner and communication skills, with a clinician who listens and provides good explanations overwhelmingly the most important attribute. Latent class analysis identified two patient segments who differed in their preference for the primary treating healthcare professional (doctor or dietitian) based on exposure to either traditional medical or non-medical professional role substitution model.</p><p><strong>Conclusions: </strong>Patients have strong but varied preferences for gastroenterology services based on whether they have been exposed to expanded scope models of care. Design and implementation of new models of care need to consider strategies to overcome any perceived loss in utility or deterioration in healthcare quality for those unfamiliar with professional role substitution.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9088901","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Long-Term Improvement in the Patient-Reported Outcomes of Rectal Bleeding, Stool Frequency, and Health-Related Quality of Life with Tofacitinib in the Ulcerative Colitis OCTAVE Clinical Program.","authors":"David P Hudesman,&nbsp;Joana Torres,&nbsp;Leonardo Salese,&nbsp;John C Woolcott,&nbsp;Rajiv Mundayat,&nbsp;Chinyu Su,&nbsp;Mahmoud H Mosli,&nbsp;Jessica R Allegretti","doi":"10.1007/s40271-022-00603-w","DOIUrl":"https://doi.org/10.1007/s40271-022-00603-w","url":null,"abstract":"<p><strong>Background: </strong>Tofacitinib is an oral small molecule Janus kinase inhibitor for the treatment of ulcerative colitis (UC). The tofacitinib OCTAVE clinical program included phase III induction (OCTAVE Induction 1 and 2) and maintenance (OCTAVE Sustain) studies, and an open-label, long-term extension study (OCTAVE Open).</p><p><strong>Objective: </strong>This post hoc analysis assessed selected long-term, disease-specific patient-reported outcome (PRO) and health-related quality-of-life (HRQoL) measurements in patients with UC receiving tofacitinib in the OCTAVE clinical program.</p><p><strong>Methods: </strong>Analyses included patients from OCTAVE Open assigned to tofacitinib 5 mg twice daily (subpopulation in remission at Week 52 of OCTAVE Sustain). OCTAVE Open data from the final analyses are shown to Month 48. Endpoints included rectal bleeding subscore (RBS) = 0, stool frequency subscore (SFS) ≤ 1, and HRQoL measure, Inflammatory Bowel Disease Questionnaire (IBDQ) remission (IBDQ total score ≥ 170); with non-responder imputation for missing data at all visits, and last observation carried forward for visits after a patient advanced to the next study (NRI-LOCF). Observed cases were also assessed.</p><p><strong>Results: </strong>At Month 48, of 175 patients, 95 (54.3%) and 96 (54.9%) achieved/maintained RBS = 0 and SFS ≤ 1, respectively (NRI-LOCF). Additionally, 93 (53.1%) patients achieved/maintained IBDQ remission at Month 48 (NRI-LOCF).</p><p><strong>Conclusions: </strong>Among patients who entered OCTAVE Open in remission, most maintained normalization of rectal bleeding and improvement in stool frequency for ≤ 4 years of follow-up in OCTAVE Open. IBDQ remission was also generally maintained in OCTAVE Open. These data show robust maintenance of key UC PROs and durability of response with tofacitinib 5 mg twice daily.</p><p><strong>Trial registration: </strong>http://www.</p><p><strong>Clinicaltrials: </strong>gov (NCT01465763 [21/10/2011]; NCT01458951 [21/10/2011]; NCT01458574 [21/10/2011]; NCT01470612 [21/10/2011]).</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/28/00/40271_2022_Article_603.PMC9911479.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9081909","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Perception of Women in Rural and Remote Scotland About Intrapartum Care: A Qualitative Study.","authors":"Verity Watson, Helen Bryers, Nicolas Krucien, Seda Erdem, Mary Burnside, Hugo C van Woerden","doi":"10.1007/s40271-022-00608-5","DOIUrl":"10.1007/s40271-022-00608-5","url":null,"abstract":"<p><strong>Background: </strong>The views of mothers are important in shaping policy and practice regarding options for intrapartum care. Mothers in rural and remote areas face unique challenges accessing services, and these need to be well understood. Therefore, our aim was to understand the compromises that women who live in remote and rural settings, more than 1 h from a maternity unit, face regarding intrapartum care.</p><p><strong>Methods: </strong>Qualitative semi-structured telephone interviews (n = 14) were undertaken in rural Scotland with 13 women who had young children and one who was pregnant. Interviews were transcribed and thematically analysed by two researchers.</p><p><strong>Results: </strong>Key themes identified were women's perceptions about risk and the safety of different pathways of maternity care and birth locations; the actual and perceived distance between home and the place of birth, and the type of maternity care available at a place of birth. Mothers in rural and remote areas face particular challenges in choosing where to have their babies. In addition to clinical decisions about 'place of birth' agreed with healthcare professionals, they have to mentally juggle the implications of giving birth when at a distance from family support and away from familiar surroundings. It was clear that many women from rural communities have a strong sense of 'place' and that giving birth in a geographical location, community and culture that feels familiar is important to many of them.</p><p><strong>Conclusions: </strong>Health care staff need to appreciate the impact of non-clinical factors that are important to mothers in remote and rural areas and acknowledge these, even when they cannot be accommodated. Local and national policy also needs to reflect and respond to the practical challenges faced by rurality.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9440302","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How Does the Public Evaluate Vaccines for Low-Incidence, Severe-Outcome Diseases? A General-Population Choice Experiment.","authors":"F Reed Johnson,&nbsp;Angelyn Fairchild,&nbsp;Dale Whittington,&nbsp;Amit K Srivastava,&nbsp;Juan Marcos Gonzalez,&nbsp;Liping Huan","doi":"10.1007/s40271-022-00602-x","DOIUrl":"https://doi.org/10.1007/s40271-022-00602-x","url":null,"abstract":"<p><strong>Background: </strong>Because immunizing large numbers of healthy people could be required to reduce a relatively small number of infections, disease incidence has a large impact on cost effectiveness, even if the infection is associated with very serious health outcomes. In addition to cost effectiveness, the US Advisory Committee on Immunization Practices requires evidence of stakeholders' values and preferences to help inform vaccine recommendations. This study quantified general-population preferences for vaccine trade-offs among disease severity, disease incidence, and other vaccine features.</p><p><strong>Methods: </strong>We developed a best-practice discrete choice experiment survey and administered it to 1185 parents of children aged 12-23 years and 1203 young adults aged 18-25 years from a national opt-in consumer panel. The data were analyzed using exploded-logit latent-class analysis.</p><p><strong>Results: </strong>Latent-class analysis identified two classes with similar relative-importance weights in both samples. One of the two classes represented about half the samples and had preferences consistent with well-structured, logically ordered, and acceptably precise stated-preference utility. Preferences for the other half of the samples were poorly defined over the ranges of vaccine and disease attributes evaluated. Both parents and young adults in the first class evaluated protection from a disease with 1 in 100 incidence and full recovery at home as having statistically the same preference utility as a disease with 1 in 1 million incidence requiring hospitalization and resulting in permanent deafness.</p><p><strong>Conclusions: </strong>The results suggest that vaccines that protect against low-incidence, severe-outcome diseases, provide 'peace of mind' benefits not captured by standard health-outcome metrics. The fact that half the respondents had poorly defined vaccine preferences is a reminder of the challenges of implementing patient-centric vaccine decision making.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9744670/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9087285","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Rethinking Patient Engagement in Cancer Research.","authors":"Anne L R Schuster,&nbsp;Heather Hampel,&nbsp;Electra D Paskett,&nbsp;John F P Bridges","doi":"10.1007/s40271-022-00604-9","DOIUrl":"https://doi.org/10.1007/s40271-022-00604-9","url":null,"abstract":"","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/de/23/40271_2022_Article_604.PMC9911482.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9561365","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patients' Preferences for Connected Insulin Pens: A Discrete Choice Experiment Among Patients with Type 1 and Type 2 Diabetes.","authors":"Jaein Seo,&nbsp;Sebastian Heidenreich,&nbsp;Esraa Aldalooj,&nbsp;Jiat Ling Poon,&nbsp;Erik Spaepen,&nbsp;Elizabeth L Eby,&nbsp;Rachel S Newson","doi":"10.1007/s40271-022-00610-x","DOIUrl":"https://doi.org/10.1007/s40271-022-00610-x","url":null,"abstract":"<p><strong>Background: </strong>This study quantified how people with diabetes value the unique features of connected insulin pens and related mobile apps, and the underlying reasons for preferring connected versus non-connected insulin pens.</p><p><strong>Methods: </strong>A discrete choice experiment (DCE) was conducted in the USA and UK to elicit preferences of adults (≥ 18 years) with type 1 or 2 diabetes for attributes of insulin pens. Attributes included device type, dosing support, glucose monitoring, additional app features, and data sharing. Relative attribute importance (RAI) scores were calculated to capture the relative importance of an attribute. Predicted choice probabilities were obtained to compare different profiles for connected and non-connected insulin pens.</p><p><strong>Results: </strong>The DCE was completed by 540 participants (58.9% male; 90.7% Caucasian; mean age, 58.3 years; 69.4% type 2 diabetes). Participants most valued the possibility of using a connected insulin pen with dosing support and automated dose logging (RAI = 39.9%), followed by automatic transfer of glucose levels (RAI = 29.0%), additional features of tracking diet and physical activity (RAI = 14.6%), data sharing (RAI = 13.6%), and device type (RAI = 2.9%). All profiles of connected insulin pens were preferred over a non-connected pen (p < 0.001), and pen profiles with advanced features were preferred over those without (p < 0.001). Preferences differed by age but not diabetes type, country of residence, or insulin regimen.</p><p><strong>Conclusion: </strong>People with diabetes in the USA and UK prefer connected over non-connected insulin pens due largely to the availability of automated logging of dose and glucose levels.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/58/a9/40271_2022_Article_610.PMC9911509.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9440324","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient-Reported Outcomes for Fully Vaccinated COVID-19 Patients Over 6 Weeks: The Experiences of Clinical Breakthrough Cases.","authors":"Keri Vartanian,&nbsp;Daniel Fish,&nbsp;Benjamin Gronowski,&nbsp;Natalie Kenton,&nbsp;Ari Robicsek","doi":"10.1007/s40271-022-00605-8","DOIUrl":"https://doi.org/10.1007/s40271-022-00605-8","url":null,"abstract":"<p><strong>Background: </strong>While coronavirus disease 2019 (COVID-19) vaccines have high rates of efficacy, fully vaccinated individuals can become infected with COVID-19. Among this population, symptoms tend to be less severe and shorter lasting. Less is known about how vaccinated individuals who contract COVID-19 experience the disease through patient-reported outcomes (PROs) and how this changes over time.</p><p><strong>Objective: </strong>The aim of this study was to describe the physical, mental, and social health PROs for fully vaccinated individuals who contracted COVID-19 over a 6-week period.</p><p><strong>Design: </strong>Prospective design using the Patient-Reported Outcomes Measurement Information System short-form (PROMIS-10) collected through a mobile application-based platform.</p><p><strong>Participant: </strong>1114 fully vaccinated patients who tested positive for COVID-19 at a large US health system and engaged with the study on or after 1 March 2021 and reported onset of illness prior to 1 November 2021.</p><p><strong>Main measures: </strong>Global physical and mental health PROMIS-10 T-scores for the 6-week period, component PROMIS-10 questions for the 6-week period, and component PROMIS-10 questions restricted to a subset of participants for the first month to measure individual recovery were analyzed.</p><p><strong>Key results: </strong>Mean global physical and mental health T-scores increased over time and remained within one standard deviation of the population mean. At baseline, at least 40% of participants reported good health for all component questions except Fatigue (25%), and the proportion reporting good health increased over time for all questions, with the largest improvements in Fatigue (25.5 to 67.5%), Pain (59.1 to 82.8%), and Emotional Problems (42.3 to 62.5%). Over the first month, the greatest positive changes in individual recovery were observed for Fatigue (65.0%), Pain (53.0%), and Emotional Problems (41.1%); at least 30% of respondents reported no change in at least one category, and the greatest decreases were for Usual Social Activities (23.9%), Social Satisfaction (23.2%), and Mental Health (21.8%).</p><p><strong>Conclusions: </strong>This study provides an important step towards better understanding the impact of 'breakthrough' COVID-19 infections on clinically engaged, fully vaccinated patients' physical and mental health to improve support for their treatment and recovery.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/63/86/40271_2022_Article_605.PMC9638265.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9081907","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Patient Preferences in the Management of Hidradenitis Suppurativa: Results of a Multinational Discrete Choice Experiment in Europe.","authors":"Damon Willems,&nbsp;Eva-Lotta Hinzpeter,&nbsp;Hessel H Van der Zee,&nbsp;Christopher J Sayed,&nbsp;John R Ingram,&nbsp;Charlotte Beaudart,&nbsp;Silvia M A A Evers,&nbsp;Mickael Hiligsmann","doi":"10.1007/s40271-022-00614-7","DOIUrl":"https://doi.org/10.1007/s40271-022-00614-7","url":null,"abstract":"<p><strong>Background and objective: </strong>Hidradenitis suppurativa is a chronic inflammatory skin disease that can lead to a substantial reduction in quality of life. Recent studies revealed high levels of unmet care needs of patients with hidradenitis suppurativa, but their preferences in treatment decision making have scarcely been investigated. This study aimed to reveal which treatment attributes adult patients with HS in Europe consider most important in treatment decision-making.</p><p><strong>Methods: </strong>A discrete choice experiment was conducted with adult patients with hidradenitis suppurativa in Europe to reveal which treatment attributes are most important when making treatment decisions. Participants were presented with 15 sets of two treatment options and asked for each to choose the treatment they preferred. The treatments were characterized by six attributes informed by a prior literature review and qualitative research: effectiveness, pain reduction, duration of treatment benefit, risk of mild adverse event, risk of serious infection, and mode of administration. A random parameter logit model was used to estimate patients' preferences with additional subgroup and latent class models used to explore any differences in preferences across patient groups.</p><p><strong>Results: </strong>Two hundred and nineteen adult patients with hidradenitis suppurativa were included in the analysis (90% women, mean age 38 years). For all six treatment attributes, significant differences were observed between levels. Given the range of levels of each attribute, the most important treatment attributes were effectiveness (47.9%), followed by pain reduction (17.3%), annual risk of a mild adverse event (14.4%), annual risk of a serious infection (10.3%), mode of administration (5.3%), and duration of treatment benefit (4.8%). Higher levels of effectiveness, namely a 75% or 100% reduction in the abscess and inflammatory nodule count, were preferred over levels of effectiveness primarily investigated in randomized clinical trials of hidradenitis suppurativa (a 50% reduction). Results were largely consistent across subgroups and three latent class groups were identified.</p><p><strong>Conclusions: </strong>This study revealed the most important treatment characteristics for patients with hidradenitis suppurativa that can help inform joint patient-physician decision making in the management of hidradenitis suppurativa. Designing future hidradenitis suppurativa treatments according to stated preferences, namely, to offer higher levels of effectiveness and pain improvement without higher risks of adverse events, may increase patients' treatment concordance and lead to improved disease management outcomes.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/b2/aa/40271_2022_Article_614.PMC9911507.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9143344","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Constructing Health State Descriptions for Low-Risk Thyroid Cancer: Stakeholder Engagement and Formative Qualitative Research.","authors":"Erin G Roth,&nbsp;Justin Kim,&nbsp;Julia F Slejko,&nbsp;C Daniel Mullins,&nbsp;Jennifer L Doyle,&nbsp;David L Levitt,&nbsp;Miguel Melendez,&nbsp;Kyle J Fletke,&nbsp;Yinin Hu","doi":"10.1007/s40271-022-00597-5","DOIUrl":"https://doi.org/10.1007/s40271-022-00597-5","url":null,"abstract":"<p><strong>Overview: </strong>This paper describes stakeholder involvement and formative qualitative research in the creation of health state descriptions (HSDs) or vignettes for low-risk thyroid cancer. The aim of this project was to engage stakeholders in the contribution of a novel set of HSDs, an important first step in the process of assessing value in thyroid cancer health states.</p><p><strong>Methods: </strong>We draw upon formative, descriptive qualitative methods, following a multi-stage framework of data collection. We conducted individual semi-structured interviews, cognitive interviews, and focus groups with thyroid cancer patients, community providers, academic subspecialists, and participants with no thyroid cancer diagnosis (N = 31). The HSDs went through several iterations over the course of a year, in collaboration with a highly engaged community advisory board, laying the groundwork for HSDs that are comprehensible, comparable, and appropriate for stated-preference research.</p><p><strong>Findings: </strong>Thyroid cancer survivors compared their experiences with those described in the HSDs. Feedback included concern for the emotional well-being of study participants who would be reading them. Providers were attuned to the need for clinical accuracy and made suggestions to reflect their clinical experience, including for patients with complications or disease progression. The pilot participants with no thyroid cancer were particularly valuable in promoting the need to simplify language and maximize readability.</p><p><strong>Discussion: </strong>Stakeholder engagement was critical to being responsive to feedback as the iterations were refined and presented. Continuous engagement and consultation with multiple sources strengthened the HSDs. A secondary outcome from this project is that stakeholders expressed interest in adapting the HSDs into decision aids for people newly diagnosed with low-risk thyroid cancer.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9381756","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}