Health Expectations最新文献

{"title":"Anticipating the Future in an Uncertain Present: How Individuals Living With Medically Unexplained Cognitive Complaints Value Biomarker-Based Prognostics","authors":"Anne-Fleur van der Meer, Marjan Knippenberg, Denise Visser, Marianne Boenink","doi":"10.1111/hex.70284","DOIUrl":"https://doi.org/10.1111/hex.70284","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>In research on Alzheimer's disease (AD) individuals experiencing cognitive problems but not satisfying criteria for mild cognitive impairment (MCI) or AD are referred to as having ‘Subjective Cognitive Decline’ (SCD). A small subset of them will progress to a state justifying an AD diagnosis. AD research trying to identify prognostic biomarkers aims to inform individuals labelled with SCD about the future development of their complaints. This paper explores how persons experiencing these cognitive complaints currently anticipate the future and how they would value emerging biomarker-based prognostic tests.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Semi-structured interviews with 10 individuals experiencing cognitive complaints, some accompanied by their partners. The interviews were coded using ATLAS.ti 22. The exploratory qualitative analysis was conducted using thematic content analysis (TA).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The interviewees experience pervasive uncertainty concerning their persistent but medically unexplained cognitive symptoms. Lacking a diagnosis and a prognosis, they anticipate their future considering various scenarios, while mainly acting upon the scenario of developing further cognitive decline/AD dementia.</p>\u0000 \u0000 <p>Interviewees often interpret questions about prognostication as asking about predicting the likelihood of a future diagnosis, clearly valuing the latter. Most interviewees are positive, assuming it would help them and their relatives prepare for the future. They have specific ideas about what type of prognostic information would be helpful, usually focusing on how cognitive decline would impact their lives, for example, what activities they will be able to continue to engage in, when they will no longer recognise loved ones or what character they will have as a patient.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>People experiencing unexplained cognitive complaints experience pervasive uncertainty about their situation and future. They clearly value the idea of a test predicting with high certainty whether they will be diagnosed with AD in the future. Regarding prognostication, most interviewees expect that such tests could help prepare for the future. However, there is a discrepancy between the outcomes usually measured in prognostic research (like the expected speed of decline) and the specific outcomes meaningful to our interviewees. In view of this gap, it is important to reconsider whether and how the development ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70284","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144125968","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":"Barriers to Care for Adults With Sickle Cell Disease: A Qualitative Descriptive Study","authors":"Chanell Grismore,&nbsp;Lisa R. Roberts,&nbsp;Zephon D. Lister,&nbsp;Akshat Jain,&nbsp;Julio Silvestre,&nbsp;Ja'Nece Dickerson,&nbsp;Susanne B. Montgomery","doi":"10.1111/hex.70310","DOIUrl":"https://doi.org/10.1111/hex.70310","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Objective</h3>\u0000 \u0000 <p>We sought to understand barriers to care among adults with sickle cell disease (SCD) within our healthcare system.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Study Setting and Design</h3>\u0000 \u0000 <p>This qualitative descriptive study was conducted as part of a needs and assets assessment in preparation for the development of an adult sickle cell clinic.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Data Sources and Analytic Sample</h3>\u0000 \u0000 <p>We conducted key informant interviews (<i>n</i> = 19) and a focus group (<i>n</i> = 10) with administrators, patients, caregivers and healthcare providers (HCPs). Audio recordings were transcribed verbatim, coded inductively and analysed thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Principle Findings</h3>\u0000 \u0000 <p>Four themes emerged: (1) People with SCD identified structural barriers, such as the lack of individualised care, access barriers to medical, community, adult-specific resources and inadequate transitional care support from paediatric to adult care. (2) HCP-related barriers, which included a lack of understanding and education, communication gaps and access barriers to finding HCPs trained in caring for people with SCD. (3) Discrimination biases by HCPs and outright prejudice towards people with SCD. (4) Financial barriers such as lack of incentives for comprehensive SCD centres and HCPs and funding reimbursement. We found that adult people with SCD had unique challenges. Interestingly, patients had perspectives similar to HCPs, while administrators were more focused on the financial barriers that affect continuity of care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These barriers require a concerted and multidisciplinary effort from patients, caregivers, HCPs, administrators and the community.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient or Public Contribution</h3>\u0000 \u0000 <p>Patients, caregivers and community members played a crucial role in this study by sharing their lived experiences and perspectives on barriers to care for adults with SCD.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70310","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144125967","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":"Processes Underpinning Successful Co-Design: Lessons From a Digital Health Project","authors":"Catherine Burns,&nbsp;Monique F. Kilkenny,&nbsp;Tara Purvis,&nbsp;Seana L. Gall,&nbsp;Christine Farmer,&nbsp;Seamus Barker,&nbsp;Brenda Booth,&nbsp;Janet E. Bray,&nbsp;Dominique A. Cadilhac,&nbsp;Jan Cameron,&nbsp;Lachlan L. Dalli,&nbsp;Stephanie Ho,&nbsp;Eleanor Horton,&nbsp;Timothy Kleinig,&nbsp;Lisa Murphy,&nbsp;Mark R. Nelson,&nbsp;Muideen T. Olaiya,&nbsp;Amanda G. Thrift,&nbsp;Rosanne Freak-Poli","doi":"10.1111/hex.70272","DOIUrl":"https://doi.org/10.1111/hex.70272","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Co-design helps to align research with end-user needs, but there is no consistent method for reporting co-design methodology and evaluation. We share our experiences co-designing the Love Your Brain digital platform for stroke prevention. We evaluated the core attributes that guided our co-design approach, including recruitment, focus group coordination, participant engagement and satisfaction.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Online co-design focus groups were conducted fortnightly (May 2023 to March 2024) with two cohorts (health knowledge experts and community members; &lt;i&gt;n&lt;/i&gt; = 8 sessions per cohort) to design the content and structure of Love Your Brain. Snowballing methods and purposive sampling were used to recruit participants in Australia. Coordination involved tracking the time spent by the research team for one round of focus groups. Participant engagement was measured through focus group attendance and survey feedback and analysed using descriptive statistics and thematic analysis. Count and length of verbal and/or written contributions during focus groups were summarised with descriptive statistics as a measure of engagement, with differences between cohorts assessed using &lt;i&gt;χ&lt;/i&gt;&lt;sup&gt;2&lt;/sup&gt;/Wilcoxon rank-sum tests. Participant satisfaction was evaluated using survey responses and input at a final evaluative focus group.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Sixteen health knowledge experts (clinicians/researchers) and 28 community members expressed interest, of which 10 health knowledge experts and 12 community members (including 9 people with lived experience of stroke) participated. Conducting two identical focus groups required 29 h of project manager/coordinator time, 8–11 h for facilitators and 6.5–8.5 h for chief investigators. Most participants (86%) attended ≥ 5/8 focus groups. Engagement was enhanced through pre-reading material, structured/well-organised focus groups and experienced facilitators. All participants contributed at each focus group, with varying levels of input. Health knowledge experts preferred written contributions over verbal contributions and wrote longer messages compared to community members. Community members spoke for a longer duration than health knowledge experts. Participant satisfaction was high, with participants reporting that the research team ‘always valued our opinions’. Importance was placed on a final evaluative focus group, and participants stated that their contributions were incorporated into the final product.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70272","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144118035","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":"Co-Designing a Digital Stroke Prevention Platform: Leveraging Lived Experience and Expert Advice","authors":"Tara Purvis,&nbsp;Catherine Burns,&nbsp;Seamus Barker,&nbsp;Monique F. Kilkenny,&nbsp;Seana L. Gall,&nbsp;Christine Farmer,&nbsp;Vaishnavi Sudhakar,&nbsp;Dominique A. Cadilhac,&nbsp;Brenda Booth,&nbsp;Janet E. Bray,&nbsp;Jan Cameron,&nbsp;Lachlan L. Dalli,&nbsp;Stephanie Ho,&nbsp;Eleanor Horton,&nbsp;Timothy Kleinig,&nbsp;Lisa Murphy,&nbsp;Mark R. Nelson,&nbsp;Muideen T. Olaiya,&nbsp;Amanda G. Thrift,&nbsp;Rosanne Freak-Poli","doi":"10.1111/hex.70293","DOIUrl":"https://doi.org/10.1111/hex.70293","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The majority of strokes are preventable through effective risk factor management. Existing primary prevention strategies have insufficient reach and effectiveness. Digital health technologies offer the potential to overcome some of these barriers. The aim of this study was to co-design the ‘Love Your Brain’ digital platform, including an online education program (Massive Open Online Course, MOOC) and text messaging system, for community stroke prevention education and management.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Using snowballing methods, expressions of interest were sought from community members and health knowledge experts (e.g., health professionals and researchers) from across Australia. Participants were purposively selected for diversity in age, sex, location, education (community) and profession (health knowledge experts). A series of eight focus groups were planned. From May 2023 to August 2023, seven online focus groups were undertaken separately with each cohort, to explore perceptions related to the core functions, content and design features. Their insights were used to develop the digital platform. Following a testing period, a final focus group was held with each cohort (March 2024) to evaluate the digital platform further. Focus groups were recorded with participant consent. Recordings and transcripts, live chats and interactive polls from the focus groups were analysed using inductive and deductive thematic approaches, with themes mapped to the Framework for the Design and Evaluation of MOOCs.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Twelve community members and ten health knowledge experts participated in at least one of the eight focus groups, with overall 86% attending five or more. Although some diversity existed in group opinions about the delivery and content, all participants emphasised the importance of using simple, easy-to-understand language and layout throughout, with the inclusion of a variety of statistics, personal stories and expert information. Focusing on emotional motivation was perceived as essential for engagement with the digital platform. Furthermore, being able to personalise the content and provide options for people to explore more advanced information (via external resources and a project-specific website with trusted links) was considered advantageous.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Co-design with community and knowledge expert cohorts informed and enriched the development of the Love Your Brain digital platform. The co-designed p","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70293","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144118036","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":"Understanding Inclusion and Participation of People From Black African Diaspora Communities in Health and Care Research: A Realist Review","authors":"Eleanor Hoverd,&nbsp;Sophie Staniszewska,&nbsp;Jeremy Dale,&nbsp;Dawn Edge,&nbsp;Rachel Spencer,&nbsp;Violet Effiom,&nbsp;Dionne Gravesande,&nbsp;Lorna Hollowood,&nbsp;Samantha Johnson,&nbsp;Tony Kelly,&nbsp;Roy McFarlane,&nbsp;Esther Mukuka,&nbsp;Shane Ward","doi":"10.1111/hex.70298","DOIUrl":"https://doi.org/10.1111/hex.70298","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;People from Black African Diaspora Communities (BAFDC) experience poorer health outcomes and are persistently under-represented in health and care research. There is limited understanding about how to support their greater inclusion and participation.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Objectives&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Explore secondary data providing insights for the co-development of a realist theory of inclusion and participation for people from BAFDC in health and care research in the United Kingdom. Drawing on these theories, co-produce a realist review with a diverse range of people from BAFDC.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;A realist approach underpinned the study. Pawson's five steps to a realist approach were taken to shape the review, identify relevant sources, extract the data and then analyse and synthesise to inform an overarching programme theory. Initial programme theories (IPTs) were developed through context (C), mechanism (M), outcome (O) configurations (CMOCs).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Main Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The review identified 43 relevant documents. Synthesis of evidence from the documents resulted in 8 IPTs and 17 CMOCs helping to understand and explain the inclusion and participation of people from BAFDC. Four key thematic clusters emerged: (1) &lt;i&gt;Health and care research as a White space,&lt;/i&gt; (2) &lt;i&gt;Trust deficit: the expansiveness of broken trust,&lt;/i&gt; (3) &lt;i&gt;Implicit and complicit bias&lt;/i&gt; and (4) &lt;i&gt;Processes that affect inclusion and participation&lt;/i&gt;. Findings were underpinned by five existing mid-range theories (MRTs) around central concepts of candidacy, social dominance, networks, narratives and racism that guided analysis and synthesis, supporting conceptualisation of CMOCs. An overarching programme theory was developed.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The review identifies how the influence of perspectives, attitudes and beliefs held by individuals or groups about people from BAFDC operates in health and care research, resulting in exclusion, lack of trust and deficit thinking. The findings should be used to inform interventions aimed at increasing inclusion and participation of people from BAFDC.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The co-production group comprised a diverse range of individuals from within the health and care ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70298","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144118037","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":"Improving Diversity in Recruitment: Lessons Learned During the REACH Pregnancy Circles Pilot Trial","authors":"Octavia Wiseman,&nbsp;Sidera Tahir,&nbsp;Christine McCourt,&nbsp;Anita Mehay,&nbsp;Helliner Robinson,&nbsp;Kade Mondeh,&nbsp;Lorna Sweeney,&nbsp;Meg Wiggins,&nbsp;Mary Sawtell,&nbsp;Angela Harden,&nbsp;the REACH Research Team","doi":"10.1111/hex.70300","DOIUrl":"https://doi.org/10.1111/hex.70300","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Introduction&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Our ability to address inequities in health outcomes is hampered by the under-representation of underserved groups in research. Research exploring this topic has focused on observational studies in the American context. This is a pivotal concern for maternity research in the UK as perinatal outcome variables vary by ethnicity, socioeconomic and linguistic background. This paper reports the findings of an analysis of the diversity achieved by different recruitment strategies used within a feasibility study and pilot trial of group antenatal care (Pregnancy Circles).&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Method&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;A pilot randomised controlled trial involved implementation of Pregnancy Circles across three maternity services in an area of high ethnic, socioeconomic and linguistic diversity. Following findings of high ethnic diversity but low levels of educational and linguistic diversity amongst participants recruited in our prior feasibility study, equity-informed strategies were put into place to attempt to increase recruitment diversity in the pilot trial, addressing organisational barriers (additional language support); attitudinal barriers (staff training to counteract recruitment bias) and practical barriers (extending the recruitment period to reach women accessing care late). Women who declined participation were invited to complete a short anonymous questionnaire covering demographic details and reasons for declining. The demographic characteristics of participants in the feasibility and pilot studies, and the pilot study decliners, were compared using descriptive statistics and free-text reasons for declining were analysed thematically.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The targeted recruitment processes were successful in widening the diversity of participants in this study, in particular for women with limited English proficiency and low educational achievement. Nevertheless, comparison of participants to those who declined showed some barriers persisted. The most common reason to decline was lack of time, most commonly due to caring responsibilities, and this was more likely to be cited by ethnically minoritized women.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Recruitment plans focused on widening diversity can be effective but are likely to require additional resources such as funding longer recruitment periods or interpreting services. The gendered nature of maternity research poses particular challenges, and our study suggests that addressing barriers such as those around child","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70300","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144100730","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":"‘All I Do Is Sit in a Chair Until the Pain Fades’—Experiences of Living With Gout","authors":"Helene Sedelius,&nbsp;Renée Flacking,&nbsp;Mats Dehlin,&nbsp;Anna Svärd,&nbsp;Malin Tistad","doi":"10.1111/hex.70302","DOIUrl":"https://doi.org/10.1111/hex.70302","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Living with gout impacts most dimensions of life. However, there is a lack of studies exploring the trajectory of patients' experiences of living with and being treated for gout, beyond the experiences during a flare. This study aimed to explore how individuals with gout experience the disease, its effects on daily life and their encounters with healthcare.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A constructivist grounded theory was used, involving simultaneous data collection and analysis. Semi-structured individual interviews were conducted with 12 individuals living with gout and aged between 40 and 87 in Central Sweden.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Navigating the uncertainty of living with gout was represented through two categories: ‘a mismatch between individuals' needs and the provision of care’ and ‘a process of adaptation’. The mismatch involved unmet needs for pain relief, feeling dismissed as having a minor condition and a lack of personalised care. The adaptation process included seeking explanations, developing self-management strategies and adjusting to pain and functional limitations.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Living with gout entails a significant degree of uncertainty. The process of adaptation is affected by a mismatch between individuals' needs and the care provided, in addition to the disease's ‘roller coaster’ nature and its slow progression.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Patient and Public Contribution</h3>\u0000 \u0000 <p>This study is part of a research project aimed at gathering knowledge essential for developing an intervention in primary care. A patient, appointed by the Swedish Rheumatism Association, is actively participating in the project's research group. The results of this study have been discussed and analysed within the research group, including input from the patient participant.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70302","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144100729","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":"‘Before and After’. The Journey of Patients With Low Back Pain Consulting in Elective Spine Surgery Clinics. A Qualitative Study Protocol","authors":"Matthew Fernandez,&nbsp;Deb Lees,&nbsp;Katie de Luca,&nbsp;Dawn Dane,&nbsp;Peter Stilwell,&nbsp;Leanda McKenna,&nbsp;Brigitte Tampin,&nbsp;Caroline Bulsara,&nbsp;Tamar Pincus,&nbsp;Michelle Kendell","doi":"10.1111/hex.70301","DOIUrl":"https://doi.org/10.1111/hex.70301","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Introduction&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Low back pain (LBP) is a highly prevalent and disabling condition. People with LBP may be referred to elective surgical clinics for further evaluation and consideration of surgery. Despite long waits for an initial appointment, many of these patients are not surgical candidates and may be discharged, receiving minimal-to-no care, advice or alternative treatment options, leaving a critical gap in care.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Approximately &lt;span&gt;25&lt;/span&gt; participants with dominant, chronic non-specific axial LBP who are (1) referred to and (2) discharged without spinal surgery following consultation in two elective spinal surgery clinics in Western Australia will participate in a one-on-one pre-consultation semi-structured interview and a similar post-consultation qualitative interview. Purposive sampling will be used to recruit participants. Interviews will be audio-recorded and transcribed, underpinned by a qualitative descriptive approach to explore participants' care journey, including pre-consultation expectations and overall experiences post-consultation. We will use inductive content analysis to analyse our data, allowing for the identification of themes that are generated from the participants' responses.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Discussion/Conclusion&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This protocol outlines the methodological process for a qualitative study exploring the experiences and expectations of LBP patients before and after consulting in elective spinal surgery clinics in Western Australia. The findings may give rise to consumer-focused solutions to improve the care journey and highlight gaps in patient expectations and understanding of non-surgical management, informing the development of tailored educational resources, communication strategies and new care pathways.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This study will incorporate patient and/or public involvement by engaging representatives from Musculoskeletal Australia (https://muscha.org/) to contribute to the study design and interpretation of findings. Specifically, a consumer with lived experience of low back pain will be invited to review and provide feedback on the semi-structured interview questions, to ensure they are appropriate, accessible and reflective of patient experiences.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Clinical Trial Registration&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;This study is not a clinical trial and is therefore n","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70301","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091795","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":"Development and Psychometric Testing of EPAT-16: A Short and Valid Measure for Patient-Centeredness From the Patient's Perspective","authors":"Eva Christalle,&nbsp;Levente Kriston,&nbsp;Stefan Zeh,&nbsp;Hannah Führes,&nbsp;Alica Schellhorn,&nbsp;Pola Hahlweg,&nbsp;Jördis Maria Zill,&nbsp;Martin Härter,&nbsp;Isabelle Scholl","doi":"10.1111/hex.70296","DOIUrl":"https://doi.org/10.1111/hex.70296","url":null,"abstract":"&lt;div&gt;\u0000 \u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Background&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We previously developed the EPAT-64, a patient-reported experience measure designed to assess patient-centeredness (PC) across 16 dimensions of the validated integrative model of PC. While its modular structure makes it highly adaptable to examine certain dimensions of PC, generating an overall PC score requires assessing all 64 items. This is often challenging in routine settings with limited resources. Therefore, we developed and psychometrically tested a 16-item short form.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Methods&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;We conducted a cross-sectional study involving adult inpatients and outpatients receiving treatment for cardiovascular diseases, cancer, musculoskeletal disorders and mental health conditions in Germany. To ensure comprehensive content coverage, we selected one item per dimension based on content relevance as well as item characteristics such as item difficulty and item-total correlation. We assessed the structural validity of a unidimensional model using confirmatory factor analysis (CFA), measured reliability with McDonald's Omega and evaluated construct validity by investigating the intercorrelation of the EPAT-16 sum score with measures of general health status and satisfaction with care.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Results&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;All items of the final EPAT-16 showed high acceptability and good item-total correlations, with approximately two-thirds demonstrating appropriate item difficulty. CFA showed a slight misfit of the unidimensional model, but a high average variance explained. McDonald's Omega showed high reliability. All hypotheses about construct validity were confirmed.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Conclusions&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;The EPAT-16 demonstrated good psychometric properties, making it a feasible tool for assessing overall PC when resource constraints preclude using the full EPAT-64. In particular, it can be used in routine care for feedback and quality improvement, as well as in research to assess relationships with other relevant variables. Since its items were designed generically, it can be used for different medical conditions and settings, for example for public reporting. Future research should evaluate the EPAT-16 in diverse, independent patient samples to confirm that its positive characteristics are consistent across different populations and cultures.&lt;/p&gt;\u0000 &lt;/section&gt;\u0000 \u0000 &lt;section&gt;\u0000 \u0000 &lt;h3&gt; Patient or Public Contribution&lt;/h3&gt;\u0000 \u0000 &lt;p&gt;Patients did not participate as active members ","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70296","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091796","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":"Children and Young People's Priorities for Mental Health Research in Northern Ireland","authors":"Siobhan O'Neill,&nbsp;Carol Rhonda Burns,&nbsp;Edel Ennis,&nbsp;Raymond Bond,&nbsp;Maurice Mulvenna,&nbsp;Elaine Murray,&nbsp;Thomas Wilson","doi":"10.1111/hex.70295","DOIUrl":"https://doi.org/10.1111/hex.70295","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>There are a number of factors contributing to the poor mental health of children and young people (CYP) specific to life in Northern Ireland (NI). Prevention and early intervention are of critical importance to the mental health and well-being of CYP. Policy decisions and service provision in the health and education sectors must be informed by research so that we can understand the factors affecting the mental health of young people and develop effective policy responses. This study examines the perceptions of young people in NI regarding mental health research priorities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>CYP who live in NI and are aged between 11 and 25 were invited to contribute to this priority setting exercise. A short anonymous online survey asked: ‘What do you think is the most important question that researchers should be trying to answer about the mental health and wellbeing of young people in NI? You may submit more than one question.’ Two-hundred and seventy-nine questions were submitted from 147 respondents. The priorities were then further discussed and expanded through focus groups with young people.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>The study identified 12 research priorities. Using thematic analysis, these were grouped into four themes: (i) Ensuring that the voices of young people in NI are heard, (ii) Understanding and addressing the root causes, extent and impact of mental health challenges in young people, (iii) Creating accessible and effective youth mental health services in NI and (iv) Fostering a whole-school approach to mental health and resilience.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The research priorities of young people are discussed in relation to current governmental strategic policies and statistics. Suggestions are put forward regarding how these research priorities may be addressed.</p>\u0000 </section>\u0000 </div>","PeriodicalId":55070,"journal":{"name":"Health Expectations","volume":"28 3","pages":""},"PeriodicalIF":3.0,"publicationDate":"2025-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.70295","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144085229","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}