Jill Carlton, Philip A Powell, Andrew Kirkcaldy, Donna Rowen
{"title":"Determining the Content Validity of the EQ-5D-5L, EQ-5D-Y-3L, and CHU9D Instruments for Assessing Generic Child and Adolescent Health-Related Quality of Life: A Qualitative Study.","authors":"Jill Carlton, Philip A Powell, Andrew Kirkcaldy, Donna Rowen","doi":"10.1007/s40271-025-00743-9","DOIUrl":"https://doi.org/10.1007/s40271-025-00743-9","url":null,"abstract":"<p><strong>Background: </strong>Health technology assessment agencies typically recommend generic measures of health to generate quality-adjusted life-years. Most agencies provide recommendations on which measure to use for adults, whereas few make recommendations for children. Two widely used preference-weighted measures of child and adolescent health that have evidence of good psychometric performance are the EQ-5D-Y-3L and the Child Health Utility 9D Index (CHU9D). The EQ-5D-5L has also been used to assess adolescent health. However, evidence on their content validity-a core measurement property-is limited. The objective of this study was to explore the content validity of the EQ-5D-5L, EQ-5D-Y-3L, and CHU9D measures, including their relevance, comprehensiveness, and comprehensibility.</p><p><strong>Methods: </strong>We assessed the content validity of the EQ-5D-5L, EQ-5D-Y-3L, and CHU9D using online semi-structured cognitive interviews in the UK. Participants were asked to comment on the relevance, comprehensibility, and comprehensiveness of the measures, including response options, recall period, and completion instructions. Interviews were informed by a topic guide. Purposive sampling allowed for appropriate breadth in the sample, with variation in gender, and presence of health conditions, disease, or disability. Interviews were recorded and transcribed verbatim before thematic content analysis.</p><p><strong>Results: </strong>In total, we conducted 49 interviews between August 2022 and June 2023: 21 children/adolescents aged 8-17 years and 28 parents/guardians of children aged 4-17 years. The mean duration of the interviews was 45 min. Relevance was broadly supported, but issues were identified. Comprehensibility was inconsistent on some items, and participants expressed difficulty with grouped items (e.g., 'anxiety/depression'). Participants had difficulty distinguishing qualitatively between some response options (e.g., 'a little bit/a bit'). Some participants noted that instrument comprehensiveness was insufficient.</p><p><strong>Conclusions: </strong>Although the content of the EQ-5D-5L, EQ-5D-Y-3L, and CHU9D was broadly supported, potential problems were identified in aspects of comprehensibility, relevance, and comprehensiveness. These present opportunities for future research and refinement to ultimately improve the content validity of these measures for assessing child and adolescent health.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144081756","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}
Jonathan I Silverberg, Dina Filipenko, Carla Dias Barbosa, Danielle Rodriguez, Olivier Chambenoit, Katrin Jack, Christophe Piketty, Ram Subramanian, Jorge Puelles
{"title":"Patients' Experiences of Atopic Dermatitis and Nemolizumab Treatment: An In-Trial Interview Study Embedded in a Phase 3 Clinical Trial (ARCADIA).","authors":"Jonathan I Silverberg, Dina Filipenko, Carla Dias Barbosa, Danielle Rodriguez, Olivier Chambenoit, Katrin Jack, Christophe Piketty, Ram Subramanian, Jorge Puelles","doi":"10.1007/s40271-025-00741-x","DOIUrl":"https://doi.org/10.1007/s40271-025-00741-x","url":null,"abstract":"<p><strong>Background: </strong>Patients with atopic dermatitis (AD) often experience a multitude of interrelated symptoms and impacts linked to the cardinal symptom of itch. Individual patient-reported outcome measures do not on their own reflect the complex physical and psychosocial burden experienced by patients with AD. This manuscript describes a qualitative in-trial interview substudy embedded in a phase 3 trial of nemolizumab in adults and adolescents with moderate-to-severe AD (ClinicalTrials.gov NCT03985943) and supplements evidence gathered during the core clinical trial.</p><p><strong>Methods: </strong>Clinical trial participants enrolled at sites in Canada, Australia, Great Britain, and the USA were invited to the substudy. They participated in blinded telephone interviews within 2 weeks of treatment completion. Interviews were conducted in English using a semi-structured interview guide. They explored participants' experiences of AD symptoms and impacts pre-trial and during the trial. Deidentified interview transcripts were coded and analyzed deductively following a content analysis approach. The interview sample was described using sociodemographic and key clinical trial data.</p><p><strong>Results: </strong>A total of 73 participants reported 40 pre-trial symptoms, 10 of which affected more than half of the participants. Itch was simultaneously the most common pre-trial symptom and the symptom most commonly perceived as burdensome. Other common burdensome pre-trial symptoms were peeling/flaky/scaly skin (n = 9/43; 21%), skin redness (n = 8/43; 19%), painful skin and dry skin (n = 6/43; 14 % each), and burning sensation (n = 5/43; 12%). Itch was reported by 18% (n = 13/73) of participants to have caused other symptoms, and by a further 12% (n = 9/73) to have impacted their sleep. Participants reported 45 AD-related impact concepts across 6 health-related quality of life domains. Sleep disturbance (n = 20/52; 38%), emotions (n = 14/52; 27%), and daily activities (n = 12/52; 23%) were most often reported as being the most burdensome impact domains. More nemolizumab-than placebo-treated participants reported improvement of the 10 most common pre-trial AD symptoms and all 6 impact domains. More nemolizumab-than placebo-treated participants reported that the treatment helped manage their condition (n = 37/46; 80% versus n = 15/27; 56%), met their expectations (n = 32/46; 70% versus n = 15/27; 56%), and that they would recommend it to others (n = 41/46; 89% versus n = 20/27; 74%).</p><p><strong>Conclusions: </strong>This qualitative study captures the heterogeneous symptoms and impacts of AD and highlights the perceived interrelatedness of itch and other AD symptoms and impacts. Our results show that alleviation of itch via targeted treatment may also reduce the complex physical and psychosocial burden of patients with moderate-to-severe AD, underscoring nemolizumab's potential as a valuable addition to existing AD treatments.</p><p><stro","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-05-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144059293","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}
Maame Esi Woode, Udeni De Silva Perera, Chris Degeling, Yves Saint James Aquino, Nehmat Houssami, Stacy M Carter, Gang Chen
{"title":"Preferences for the Use of Artificial Intelligence for Breast Cancer Screening in Australia: A Discrete Choice Experiment.","authors":"Maame Esi Woode, Udeni De Silva Perera, Chris Degeling, Yves Saint James Aquino, Nehmat Houssami, Stacy M Carter, Gang Chen","doi":"10.1007/s40271-025-00742-w","DOIUrl":"https://doi.org/10.1007/s40271-025-00742-w","url":null,"abstract":"<p><strong>Background: </strong>Breast cancer screening is considered an effective early detection strategy. Artificial intelligence (AI) may both offer benefits and create risks for breast screening programmes. To use AI in health screening services, the views and expectations of consumers are critical. This study examined the preferences of Australian women regarding AI use in breast cancer screening and the impact of information on preferences using discrete choice experiments.</p><p><strong>Methods: </strong>The experiment presented two alternative screening services based on seven attributes (reading method, screening sensitivity, screening specificity, time between screening and receiving results, supporting evidence, fair representation, and who should be held accountable) to 2063 women aged between 40 and 74 years recruited from an online panel. Participants were randomised into two arms. Both received standard information on AI use in breast screening, but one arm received additional information on its potential benefits. Preferences for hypothetical breast cancer screening services were modelled using a random parameter logit model. Relative attribute importance and uptake rates were estimated.</p><p><strong>Results: </strong>Participants preferred mixed reading (radiologist + AI system) over the other two reading methods. They showed a strong preference for fewer missed cases with a high attribute relative importance. Fewer false positives and a shorter waiting time for results were also preferred. Strength of preferences for mixed reading was significantly higher compared to two radiologists when additional information on AI is provided, highlighting the impact of information.</p><p><strong>Conclusions: </strong>This study revealed the preferences among Australian women for the use of AI-driven breast cancer screening services. Results generally suggest women are open to their mammograms being read by both a radiologist and an AI-based system under certain conditions.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-05-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144056649","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}
Lawrence Mwenge, Matthew Quaife, Lucheka Sigande, Sian Floyd, Melvin Simuyaba, Mwelwa Phiri, Chisanga Mwansa, Mutale Kabumbu, Musonda Simwinga, Kwame Shanaube, Ab Schaap, Sarah Fidler, Richard Hayes, Helen Ayles, Bernadette Hensen, Peter Hangoma
{"title":"Co-designing Healthcare Interventions with Users: A Discrete Choice Experiment to Understand Young People's Preferences for Sexual and Reproductive Health Services in Lusaka, Zambia.","authors":"Lawrence Mwenge, Matthew Quaife, Lucheka Sigande, Sian Floyd, Melvin Simuyaba, Mwelwa Phiri, Chisanga Mwansa, Mutale Kabumbu, Musonda Simwinga, Kwame Shanaube, Ab Schaap, Sarah Fidler, Richard Hayes, Helen Ayles, Bernadette Hensen, Peter Hangoma","doi":"10.1007/s40271-025-00737-7","DOIUrl":"https://doi.org/10.1007/s40271-025-00737-7","url":null,"abstract":"<p><strong>Introduction: </strong>Like in many countries, coverage of sexual and reproductive health (SRH) services among adolescents and young people (AYP) aged 15-24 remains low in Zambia. Increasing coverage of SRH services requires interventions that are responsive to the needs and preferences of AYP. We conducted a discrete choice experiment (DCE) to elicit AYP's preferences for SRH service delivery in Lusaka, Zambia.</p><p><strong>Methods: </strong>A cross-sectional DCE was conducted with AYP aged 15-24 years. Consenting participants were presented with alternative SRH service delivery strategies represented by six attributes, namely: location, type of provider, type of services, service differentiation by sex, availability of edutainment, and opening hours. Multinomial logit and random parameters logit models were used to analyse the data. All variables were effect coded.</p><p><strong>Results: </strong>A total of 423 AYP aged 15-24 years (61% female) completed the DCE. Respondents preferred SRH services that were integrated with other healthcare services (b = 0.65, p < 0.001), delivered by medical staff and peer support workers (b = 0.44, p < 0.001), and provided at a hub within a health facility (b = 0.62, p < 0.001). AYP also preferred services to be available on weekends during the daytime (b = 0.37, p < 0.001). Participants also preferred alternatives which included edutainment (b = 0.22, p < 0.001). Service differentiation by sex had little effect on the preference for SRH service delivery (b = - 0.05, p = 0.08). The coefficient for the \"neither\" option was negative and statistically significant (b = - 5.31, p < 0.001), implying that AYP did not favor routine SRH service delivery in an outpatient department.</p><p><strong>Conclusion: </strong>Efforts to increase SRH service utilization among AYP should focus on providing comprehensive SRH services that are integrated with other healthcare services. These services should be delivered by a combination of medical staff and peer supporter workers in youth-friendly spaces. Careful attention should be paid to opening times to ensure that these are convenient to AYP.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-05-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144059544","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}
Karen V MacDonald, Geoffrey C Nguyen, Maida J Sewitch, Deborah A Marshall
{"title":"Identifying and Managing Fraudulent Respondents in Online Stated Preferences Surveys: A Case Example from Best-Worst Scaling in Health Preferences Research.","authors":"Karen V MacDonald, Geoffrey C Nguyen, Maida J Sewitch, Deborah A Marshall","doi":"10.1007/s40271-025-00740-y","DOIUrl":"https://doi.org/10.1007/s40271-025-00740-y","url":null,"abstract":"<p><strong>Background: </strong>There is limited evidence and guidance in health preferences research to prevent, identify, and manage fraudulent respondents and data fraud, especially for best-worst scaling (BWS) and discrete choice experiments with nonordered attributes. Using an example from a BWS survey in which we experienced data fraud, we aimed to: (1) develop an approach to identify, verify, and categorize fraudulent respondents; (2) assess the impact of fraudulent respondents on data and results; and (3) identify variables associated with fraudulent respondents.</p><p><strong>Methods: </strong>An online BWS survey on healthcare services for inflammatory bowel disease (IBD) was administered to Canadian IBD patients. We used a three-step approach to identify, verify, and categorize respondents as likely fraudulent (LF), likely real (LR), and unsure. First, responses to 12 \"red flag\" variables (variables identified as indicators of fraud) were coded 0 (pass) or 1 (fail) then summed to generate a \"fraudulent response score\" (FRS; range: 0-12 (most likely fraudulent)) used to categorize respondents. Second, respondents categorized LR or unsure underwent age verification. Third, categorization was updated on the basis of age verification results. BWS data were analyzed using conditional logit and latent class analysis. Subgroup analysis was done by final categorization, FRS, and red flag variables.</p><p><strong>Results: </strong>Overall, n = 4334 respondents underwent initial categorization resulting in 24% (n = 1019) LF and 76% (n = 3315) needing further review. After review, 75% (n = 3258) were categorized as LF and n = 484 underwent age verification. Respondent categorization was updated on the basis of age verification, with final categorization of 76% (n = 3297) LF, 14% (n = 592) unsure, 10% (n = 442) LR, and < 1% (n = 3) duplicates of LR. BWS item rankings differed most by respondent category. Latent class analysis demonstrated final categorization was significantly associated with class membership; class 1 had characteristics consistent with LR respondents and item ranking order for class 1 closely aligned with LR respondent conditional logit results. Suspicious email was the most frequently failed red flag variable and was associated with fraudulent respondents.</p><p><strong>Conclusions: </strong>Additional steps to review data and verify age resulted in better categorization than only FRS or single red flag variables. Email authentication, single use/unique survey links, and built-in identification verification may be most effective for fraud prevention. Guidance is needed on good research practices for most effective and efficient approaches for preventing, identifying, and managing fraudulent data in health preferences research, specifically in studies with nonordered attributes.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144057827","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}
Thi Quynh Anh Ho, Lidia Engel, Long Khanh-Dao Le, Glenn Melvin, Jemimah Ride, Ha N D Le, Cathrine Mihalopoulos
{"title":"Discrete Choice Experiment Versus Best-Worst Scaling: An Empirical Comparison in Eliciting Young People's Preferences for Web-Based Mental Health Interventions.","authors":"Thi Quynh Anh Ho, Lidia Engel, Long Khanh-Dao Le, Glenn Melvin, Jemimah Ride, Ha N D Le, Cathrine Mihalopoulos","doi":"10.1007/s40271-025-00739-5","DOIUrl":"https://doi.org/10.1007/s40271-025-00739-5","url":null,"abstract":"<p><strong>Background: </strong>Discrete choice experiments (DCEs) and best-worst scaling (BWS) profile cases (BWS case 2, or BWS-2) have been increasingly used in eliciting preferences towards health care interventions. However, it remains unclear which method is more suitable for preference elicitation, particularly in the mental health context. This study aims to compare: (1) the preference results elicited from a DCE and BWS-2; and (2) the acceptability of the two methods in the context of web-based mental health interventions (W-MHIs) for managing anxiety and depression in young people.</p><p><strong>Methods: </strong>Participants were aged 18-25 years, lived in Australia, and self-reported experiencing anxiety and/or depression in the past 12 months. They also had either an intention to use W-MHIs or previous experience with W-MHIs for managing anxiety and/or depression. Recruitment was conducted online via social media and Deakin University notice boards. Eligible participants completed an online survey containing eight DCE and eight BWS-2 choice tasks. Both types of choice tasks comprised six attributes. A multinominal logit model was used to estimate the preference weights and relative importance of attributes. Acceptability was assessed on the basis of dropout rate, completion time, task difficulty, understanding, and participants' preferred type of choice task.</p><p><strong>Results: </strong>A total of 198 participants (mean age: 21.42 ± 2.3 years, 64.65% female) completed the survey. Both DCE and BWS-2 predicted that cost was the most important attribute in young people's decision to engage with W-MHIs. However, the two methods differed in the relative importance of attributes and the preference ranking of levels within attributes. The DCE was perceived as easier to understand and answer, with nearly 64% of the participants preferring it over the BWS-2.</p><p><strong>Conclusions: </strong>While both methods found cost was the most important attribute associated with engagement with W-MHIs, differences in the ranking of other attributes suggest that DCE and BWS-2 are not necessarily interchangeable. Increased acceptability by study participants of the DCE format suggests that this technique may have more merit than BWS-2-at least in the current study's context. Further research is required to identify the optimal method for determining the relative importance of attributes.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-05-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144048981","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}
Lucile Mulot, Fanny Monmousseau, Sophie Dubnitskiy-Robin, Maurine Diot, Pierre Marionnaud, Solène Brunet-Houdard, Bertrand Fougere
{"title":"Elderly People's Preferences for Different Organizational Models for Frailty Screening: A Discrete Choice Experiment.","authors":"Lucile Mulot, Fanny Monmousseau, Sophie Dubnitskiy-Robin, Maurine Diot, Pierre Marionnaud, Solène Brunet-Houdard, Bertrand Fougere","doi":"10.1007/s40271-025-00738-6","DOIUrl":"https://doi.org/10.1007/s40271-025-00738-6","url":null,"abstract":"<p><strong>Objectives: </strong>Frailty dimensions can be evaluated in a comprehensive geriatric assessment (CGA). As frailty is often reversible, early detection can help to maintain a person's independence. The objective of the present study was to identify organizational factors that would encourage people aged 60 years or over to agree to frailty screening.</p><p><strong>Methods: </strong>A face-to-face discrete choice experiment was conducted to elicit older adults' preferences for five attributes of the CGA: the initiator, pre-assessment, location, schedules, and announcement of the results. To assess the relative importance of attributes and explore relationships between preferences and participant characteristics, the data were analyzed using conditional logit, mixed logit, and bivariate probit models.</p><p><strong>Results: </strong>A total of 224 people (women: 61.2%; mean age: 72.2 years; urban dwellers: 61.6%; caregivers for other people: 35.6%) completed the survey. The CGA initiator, schedules, and location significantly influenced the respondents' preferences. The organizational preferences varied according to the respondent's quality of life and relationship with the family physician, as well as knowledge of the CGA; while agreement to attend a CGA depended on the person's gender, living environment, socioprofessional category, and caregiver status. Ideally, the CGA should be initiated by the family physician, carried out at the family physician's office or in hospital (but not at home), and split into two parts on the same day. The CGA results should preferably be presented by the healthcare professional who carried out the assessment.</p><p><strong>Conclusions: </strong>Early frailty screening by a mobile geriatric team or specifically trained professionals in a neutral location close to the older person's home might be envisaged.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-05-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144007813","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}
Miriam Kimel, Leah Kleinman, Tobias Di Marco, Antonio Olivieri, Andrea Schulz, Katherine Kirk, Andrea Phillips Beyer
{"title":"Content Validity Assessment of the Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ) Among Adults with Insomnia and Nocturia.","authors":"Miriam Kimel, Leah Kleinman, Tobias Di Marco, Antonio Olivieri, Andrea Schulz, Katherine Kirk, Andrea Phillips Beyer","doi":"10.1007/s40271-025-00733-x","DOIUrl":"10.1007/s40271-025-00733-x","url":null,"abstract":"<p><strong>Purpose: </strong>The study aimed to support use of the Insomnia Daytime Symptoms and Impacts Questionnaire (IDSIQ) in clinical trials for patients with concomitant insomnia disorder and nocturia.</p><p><strong>Methods: </strong>Eligible participants in this observational study were United States (US) residents aged ≥ 55 years who experienced self-reported symptoms reflecting the diagnostic criteria for insomnia disorder and nocturia (i.e., experienced ≥ 2 nocturnal voids per night within 30 days of screening). Concept elicitation (n = 10), confirmation of limited concepts (n = 5), and cognitive debriefing of the IDSIQ (n = 10) were conducted with 20 participants. A content analysis approach was used.</p><p><strong>Results: </strong>Most participants in the overall sample were female (n = 13/20, 65%) and white (n = 17/20, 85%), with a mean age of 60.9 years. Based on concept elicitation, most participants (n = 9/10, 90%) experienced insomnia 5-7 nights per week and nocturia 7 nights per week. Participants identified impacts to their emotions, social activities, physical abilities, cognitive function, daily activities, work, and family for insomnia disorder and nocturia. These concepts were confirmed with the five additional interviews. Concept saturation for both disorders was achieved in all participants by the seventh concept elicitation interview. All cognitive interview participants (n = 10) understood the IDSIQ instructions, items, and response options.</p><p><strong>Conclusions: </strong>Having concurrent insomnia disorder and nocturia is associated with daytime symptoms and impacts to functioning. All participants who were debriefed understood all IDSIQ items and response options. These findings suggest the IDSIQ is a content-valid instrument for use in clinical trials with patients with insomnia and comorbid nocturia.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"249-261"},"PeriodicalIF":3.4,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11985609/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143517259","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}
Alicia J King, Tiffany R Phillips, Erica L Plummer, Natasha Wild, Christopher K Fairley, Eric P F Chow, Lenka A Vodstrcil, Catriona S Bradshaw
{"title":"Getting Everyone on Board to Break the Cycle of Bacterial Vaginosis (BV) Recurrence: A Qualitative Study of Partner Treatment for BV.","authors":"Alicia J King, Tiffany R Phillips, Erica L Plummer, Natasha Wild, Christopher K Fairley, Eric P F Chow, Lenka A Vodstrcil, Catriona S Bradshaw","doi":"10.1007/s40271-025-00731-z","DOIUrl":"10.1007/s40271-025-00731-z","url":null,"abstract":"<p><strong>Introduction: </strong>Bacterial vaginosis (BV) is a common condition that affects the sexual wellbeing of women and other people with a vagina. Recurrence following individual treatment is frequent and exerts a cumulative burden over time. Researchers at the Melbourne Sexual Health Center have recently completed the first successful trial of male partner treatment (MPT) for BV, demonstrating the superior effectiveness of concurrent MPT in reducing recurrence.</p><p><strong>Method: </strong>Using a case study design, semi-structured interviews with trial participants explored the views and experiences of nine men who had received MPT and nine women whose partners had received MPT. Action and emotion coding were employed to create an explanatory model of experiences of BV recurrence and MPT.</p><p><strong>Results: </strong>Three key themes within this model related to the cycle of recurrent BV: the physical, psychological, and relationship impacts of BV (\"experiencing BV\"); the importance of healthcare providers exploring different options and understanding individual context (\"seeking care\"); and the frustration, cost, and inconvenience of individual treatment (\"dealing with it alone\"). This cycle was broken by \"Getting everyone on board\" with MPT. This involved women, men, and healthcare professionals understanding BV and MPT, overcoming barriers to access, and open communication between partners. These factors, in combination, resulted in couples \"dealing with BV together\", undertaking a week of inconvenience to share the responsibility of preventing recurrence.</p><p><strong>Conclusion: </strong>These findings suggest that the widescale adoption of MPT for BV will require multilevel approaches to address gaps in the awareness of BV with sensitivity to the relational, social, and structural context of delivering care.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"279-290"},"PeriodicalIF":3.4,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11985585/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143630306","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}
Andrew Simon Gilbert, Frances Batchelor, Nancy Devlin, Briony Dow, Brendan Mulhern, Rosalie Viney, Tessa Peasgood, Lidia Engel
{"title":"Routine Quality-of-Life Measurement in Residential Aged Care: Staff, Resident, and Family Perspectives.","authors":"Andrew Simon Gilbert, Frances Batchelor, Nancy Devlin, Briony Dow, Brendan Mulhern, Rosalie Viney, Tessa Peasgood, Lidia Engel","doi":"10.1007/s40271-025-00729-7","DOIUrl":"10.1007/s40271-025-00729-7","url":null,"abstract":"<p><strong>Background and objectives: </strong>There is interest in routinely measuring quality of life (QoL) in aged care homes, evidenced by the Australian Government's implementation of QoL as a mandatory quality indicator. This study explores views of aged care staff, residents, and family members on the benefits, challenges, and feasibility of implementing routine QoL measures.</p><p><strong>Methods: </strong>Qualitative data were gathered to explore staff, resident, and family perspectives on QoL measurement in aged care homes, including purpose, benefits, implementation, and best practice. Two staff workshops were conducted at different aged care homes, and semi-structured interviews were held with 29 proxies (9 family members and 20 staff) and 24 residents. Workshops and interviews were transcribed verbatim, and thematically analysed via a qualitative interpretive approach using NVivo software.</p><p><strong>Results: </strong>Analysis yielded four key themes: (1) benefits of routine QoL measurement; (2) challenges in implementation; (3) best practice for collecting surveys; (4) validity concerns. Identified benefits included potentially improved care, monitoring service performance, and informing family members. Staff participants recommended integrating measures into existing care planning and having oversight from a registered nurse. Participants identified potential implementation challenges, including administrative burden, time and resourcing constraints, conflicts of interest, and resistance from staff, providers, and residents.</p><p><strong>Conclusions: </strong>This study identifies potential benefits to implementing routine QoL measurement in residential aged care homes. To maximise these benefits, it is important to consider how measurement can be integrated in ways that contribute to existing care planning and practices.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":" ","pages":"211-223"},"PeriodicalIF":3.4,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11985636/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143082004","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}