Eugenie Evelynne Johnson, Cyril Onwuelazu Uteh, Emma Belilios, Fiona Pearson
{"title":"Reporting of Patient and Public Involvement in Technology Appraisal and Assessment Reports: A Rapid Scoping Review.","authors":"Eugenie Evelynne Johnson, Cyril Onwuelazu Uteh, Emma Belilios, Fiona Pearson","doi":"10.1007/s40271-024-00721-7","DOIUrl":"https://doi.org/10.1007/s40271-024-00721-7","url":null,"abstract":"<p><strong>Background: </strong>The National Institute for Health and Care Excellence (NICE) produces guidance on the use of health technologies (including new and existing medicines, medical devices, diagnostics and interventional procedures) in the National Health Service. Technology Appraisals inform recommendations on the use of new and existing health technologies. As part of its health technology evaluation process, NICE ask independent research groups known as Evidence or External Assessment Groups (EAGs) to assess or evaluate the available evidence surrounding health technologies. Although patients and the public are involved in the wider NICE Heath Technology Evaluation and Assessment process, little is known about the extent to which patient and public involvement and engagement (PPIE) is undertaken and documented in EAG Reports.</p><p><strong>Objectives: </strong>This rapid scoping review aimed to discover the extent to which PPIE is currently undertaken and documented in EAG Reports, which feed into the wider NICE health technology assessment process, and whether EAG Reports contain a plain language summary.</p><p><strong>Methods: </strong>We searched the NICE website for guidance published between 27 September, 2022 and 27 September, 2023. All records were downloaded directly from the NICE website into an Excel spreadsheet for extraction. Evaluations that were terminated before guidance was published or where an EAG Report was not available as supporting evidence were excluded. One researcher charted information regarding the type of each EAG Report, whether a plain language summary was included, and whether documentation of PPIE was included in the EAG Report either within a stand-alone section or throughout the main text of the report. A second researcher checked charted information for 20% of these records. We tabulated data and described PPIE conduct and documentation in included EAG Reports within a narrative synthesis.</p><p><strong>Results: </strong>A total of 97 EAG Reports were included in this rapid scoping review, the majority of which were documenting Single Technology Appraisals (N = 55). Of the 97 EAG Reports, 11 included a plain language summary. Of these 11 reports, two were Multiple Technology Appraisals, five were Diagnostic Assessment Reviews and four were Early Value Assessments. One Early Value Assessment, one Diagnostic Assessment Review and one Multiple Technology Appraisal reported that they did not conduct PPIE because of time constraints and noted that patients were involved in the wider NICE Appraisal process. Two Early Value Assessments that explicitly reported on PPIE used heterogenous methods of involvement.</p><p><strong>Conclusions: </strong>There is currently limited PPIE documented in EAG Reports and inclusion of a plain language summary is uncommon. Further guidance is required to assist EAGs with embedding PPIE and a plain language summary into their Reports taking into consideration the ultra-rapi","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142565220","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}
Alexander Keenan, Chiara Whichello, Hoa H Le, David M Kern, Gabriela S Fernandez, Vicky Turner, Anup Das, Matthew Quaife, Amy Perrin Ross
{"title":"Patients' Preferences for Sphingosine-1-Phosphate Receptor Modulators in Multiple Sclerosis Based on Clinical Management Considerations: A Choice Experiment.","authors":"Alexander Keenan, Chiara Whichello, Hoa H Le, David M Kern, Gabriela S Fernandez, Vicky Turner, Anup Das, Matthew Quaife, Amy Perrin Ross","doi":"10.1007/s40271-024-00699-2","DOIUrl":"10.1007/s40271-024-00699-2","url":null,"abstract":"<p><strong>Background: </strong>Several sphingosine-1-phosphate receptor (S1PR) modulators are available in the US for treating relapsing forms of multiple sclerosis (RMS). Given that these S1PR modulators have similar efficacy and safety, patients may consider the clinical management characteristics of the S1PR modulators when deciding among treatments. However, none of the S1PR modulators is clearly superior in every aspect of clinical management, and for some treatments, clinical management varies based on a patient's comorbid health conditions (e.g., heart conditions [HC]).</p><p><strong>Objectives: </strong>This study aimed to determine which S1PR modulator patients with relapsing-remitting multiple sclerosis (RRMS) would prefer based on clinical management considerations, and to estimate how different clinical management considerations might drive these preferences. Preferences were explored separately for patients with and without comorbid HC.</p><p><strong>Methods: </strong>A multicriteria decision analysis was conducted on S1PR modulators approved to treat RMS: fingolimod, ozanimod, siponimod, and ponesimod. Clinical management preferences of patients with RRMS were elicited in a discrete choice experiment (DCE) in which participants repeatedly chose between hypothetical S1PR modulator profiles based on their clinical management attributes. Attributes included first-dose observations, genotyping, liver function tests, eye examinations, drug-drug interactions, interactions with antidepressants, interactions with foods high in tyramine, and immune system recovery time. Preferences were estimated separately for patients with HC and without HC (noHC). Marginal utilities were calculated from the DCE data for each attribute and level using a mixed logit model. In the multicriteria decision analysis, partial value scores were created by applying the marginal utilities for each attribute and level to the real-world profiles of S1PR modulators. Partial value scores were summed to determine an overall clinical management value score for each S1PR modulator.</p><p><strong>Results: </strong>Four hundred patients with RRMS completed the DCE. Ponesimod had the highest overall value score for patients both without (n = 341) and with (n = 59) HC (noHC: 5.1; HC: 4.0), followed by siponimod (noHC: 4.9; HC: 3.3), fingolimod (noHC: 3.4; HC: 2.8), and ozanimod (noHC: 0.9; HC: 0.8). Overall, immune system recovery time contributed the highest partial value scores (noHC: up to 1.9 points; HC: up to 1.2 points), followed by the number of drug-drug interactions (noHC: up to 1.2 points; HC: up to 1.7 points).</p><p><strong>Conclusions: </strong>When considering the clinical management of S1PR modulators, the average patient with RRMS is expected to choose a treatment with shorter immune system recovery time and fewer interactions with other drugs. Patients both with and without heart conditions are likely to prefer the clinical management profile of ponesimod ove","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140923686","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}
Carolina Navas, Alexandra Palmer Minton, Ana Maria Rodriguez-Leboeuf
{"title":"The Role of Patient-Reported Outcomes to Measure Treatment Satisfaction in Drug Development.","authors":"Carolina Navas, Alexandra Palmer Minton, Ana Maria Rodriguez-Leboeuf","doi":"10.1007/s40271-024-00702-w","DOIUrl":"10.1007/s40271-024-00702-w","url":null,"abstract":"<p><p>Treatment satisfaction is a person's rating of his or her treatment experience, including processes and outcomes. It is directly related to treatment adherence, which may be predictive of treatment effectiveness in clinical and real-world research. Consequently, patient-reported outcome (PRO) instruments have been developed to incorporate patient experience throughout various stages of drug development and routine care. PRO instruments enable clinicians and researchers to evaluate and compare treatment satisfaction data in different clinical settings. It is important to select fit-for-purpose PRO instruments that have demonstrated adequate levels of reliability, validity, and sensitivity to change to support their use. Some of these instruments are unidimensional while some are multidimensional; some are generic and can be applied across different therapeutic areas, while others have been developed for use in a specific treatment modality or condition. This article describes the role of treatment satisfaction in drug development as well as regulatory and Health Technology Assessment (HTA) decision making and calls for more widespread use of carefully selected treatment satisfaction PRO instruments in early- and late-phase drug development.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461569/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141555860","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":"Preferences of Cancer Survivors for Follow-Up Care: A Systematic Review of Discrete Choice Experiments.","authors":"Tongyu Zhang, Zhuobing Bai, Bingyan Zhao, Yu Chen, Chunmei Zhang","doi":"10.1007/s40271-024-00722-6","DOIUrl":"https://doi.org/10.1007/s40271-024-00722-6","url":null,"abstract":"<p><strong>Background and objective: </strong>Cancer survivors frequently encounter multiple challenges, including physical, psychological, social, emotional, and financial difficulties. These challenges significantly impact their quality of life and recovery process. This systematic review intends to delineate and assess the evidence gathered from discrete choice experiments, aiming to unravel the preferences of cancer survivors towards their follow-up care.</p><p><strong>Methods: </strong>A systematic literature review was conducted across PubMed, Web of Science, Embase, CINAHL, PsycINFO, CNKI, Wanfang, and SinoMed databases up to July 2024. Two reviewers independently conducted the screening, data extraction, and quality appraisal of the studies. The collected data were synthesized through a narrative approach. Additionally, semi-quantitative analyses were used to evaluate the frequency, importance, and significance of each attribute.</p><p><strong>Results: </strong>Eight studies conducted across four countries were analyzed, yielding 41 distinct attributes grouped into eight main categories and 14 subcategories, further refined by subject matter. Despite the differences in payment systems between countries, the type of provider topped the list of preferences for cancer survivors' follow-up care. Next in preference was the contact modality. Service quality (comprehensive plans, personalized service, detailed information) was also valued. However, opinions diverged on continuity, additional support, and service frequency.</p><p><strong>Conclusions: </strong>The attributes of follow-up care preferences integrated in this review demonstrate a diverse range among cancer survivors. Generally, they prioritize skilled professionals, flexible contact modality, and other high-quality follow-up care elements. Future studies should analyze cancer survivors' preferences for follow-up care from the perspectives of different stakeholders, and further consider internal and external factors to ensure authentic decision making.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142559314","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}
Benjamin Matthew Craig, Maksat Jumamyradov, Oliver Rivero-Arias
{"title":"The Performance of Kaizen Tasks Across Three Online Discrete Choice Experiment Surveys: An Evidence Synthesis.","authors":"Benjamin Matthew Craig, Maksat Jumamyradov, Oliver Rivero-Arias","doi":"10.1007/s40271-024-00708-4","DOIUrl":"10.1007/s40271-024-00708-4","url":null,"abstract":"<p><strong>Background: </strong>Kaizen is a Japanese term for continuous improvement (kai ~ change, zen ~ good). In a kaizen task, a respondent makes sequential choices to improve an object's profile, revealing a preference path. Including kaizen tasks in a discrete choice experiment has the advantage of collecting greater preference evidence than pick-one tasks, such as paired comparisons. OBJECTIVE AND METHODS: So far, three online discrete choice experiments have included kaizen tasks: the 2020 US COVID-19 vaccination (CVP) study, the 2021 UK Children's Surgery Outcome Reporting (CSOR) study, and the 2023 US EQ-5D-Y-3L valuation (Y-3L) study. In this evidence synthesis, we describe the performance of the kaizen tasks in terms of response behaviors, conditional logit and Zermelo-Bradley-Terry (ZBT) estimates, and their standard errors in each of the surveys.</p><p><strong>Results: </strong>Comparing the CVP and Y-3L, including hold-outs (i.e., attributes shared by all alternatives) seems to reduce positional behavior by half. The CVP tasks excluded multi-level improvements; therefore, we could not estimate logit main effects directly. In the CSOR, only 12 of the 21 logit estimates are significantly positive (p < 0.05), possibly due to the fixed attribute order. All Y-3L estimates are significantly positive, and their predictions are highly correlated (Pearson: logit 0.802, ZBT 0.882) and strongly agree (Lin: logit 0.744, ZBT 0.852) with the paired-comparison probabilities.</p><p><strong>Conclusions: </strong>These discrete choice experiments offer important lessons for future studies: (1) include warm-up tasks, hold-outs, and multi-level improvements; (2) randomize the attribute order (i.e., up-down) at the respondent level; and (3) recruit smaller samples of respondents than traditional discrete choice experiments with only pick-one tasks.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461645/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141731565","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}
Pakhi Sharma, Sanjeewa Kularatna, Bridget Abell, Steven M McPhail, Sameera Senanayake
{"title":"Preferences for Neurodevelopmental Follow-Up Care for Children: A Discrete Choice Experiment.","authors":"Pakhi Sharma, Sanjeewa Kularatna, Bridget Abell, Steven M McPhail, Sameera Senanayake","doi":"10.1007/s40271-024-00717-3","DOIUrl":"10.1007/s40271-024-00717-3","url":null,"abstract":"<p><strong>Introduction: </strong>Identifying and addressing neurodevelopmental delays in children can be challenging for families and the healthcare system. Delays in accessing services and early interventions are common. The design and delivery of these services, and associated outcomes for children, may be improved if service provision aligns with families' needs and preferences for receiving care. The aim of this study is to identify families' preferences for neurodevelopmental follow-up care for children using an established methodology.</p><p><strong>Methods: </strong>We used a discrete choice experiment (DCE) to elicit families' preferences. We collected data from families and caregivers of children with neurodevelopmental needs. The DCE process included four stages. In stage 1, we identified attributes and levels to be included in the DCE using literature review, interviews, and expert advice. The finalised attributes were location, mode of follow-up, out-of-pocket cost per visit, mental health counselling for parents, receiving educational information, managing appointments, and waiting time. In stage 2, we generated choice tasks that contained two alternatives and a 'neither' option for respondents to choose from, using a Bayesian d-efficient design. These choice tasks were compiled in a survey that also included demographic questions. We conducted pre- and pilot tests to ensure the functionality of the survey and obtain priors. In stage 3, the DCE survey was administered online. We received 301 responses. In stage 4, the analysis was conducted using a latent class model. Additionally, we estimated the relative importance of attributes and performed a scenario analysis.</p><p><strong>Results: </strong>Two latent classes were observed. More families with full-time employees, higher incomes, postgraduate degrees, and those living in metropolitan areas were in class 1 compared with class 2. Class 1 families preferred accessing local public health clinics, face-to-face follow-up, paying AUD100 to AUD500, mental health support, group educational activities, health service-initiated appointments, and waiting < 3 months. Class 2 families disliked city hospitals when compared with private, preferred paying AUD100 or no cost, and had similar preferences regarding mental health support and wait times as class 1. However, no significant differences were noted in follow-up modality, receiving educational information, and appointment management. The relative importance estimation suggested that location was most important for class 1 (28%), whereas for class 2, cost accounted for nearly half of the importance when selecting an alternative. The expected uptake of follow-up care, estimated under three different hypothetical scenarios, may increase by approximately 24% for class 2 if an 'ideal' scenario taking into account preferences was implemented.</p><p><strong>Conclusion: </strong>This study offers insights into aspects that may be prioritised by ","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461776/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142114561","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}
Luis E Loría-Rebolledo, Hugo C van Woerden, Helen Bryers, Seda Erdem, Verity Watson
{"title":"Preferences of Recent Mums in Remote and Rural Areas for Type of Intrapartum Care: A Discrete Choice Experiment.","authors":"Luis E Loría-Rebolledo, Hugo C van Woerden, Helen Bryers, Seda Erdem, Verity Watson","doi":"10.1007/s40271-024-00704-8","DOIUrl":"10.1007/s40271-024-00704-8","url":null,"abstract":"<p><strong>Background and objectives: </strong>Pregnant women living in rural areas considering their preferred place of birth may have to 'trade-off' travel time/distance and other attributes of care (e.g. the full choice of birthplace options is rarely available locally). This study assesses the preferences and trade-offs of recent mothers who live in remote and rural areas of Great Britain.</p><p><strong>Methods: </strong>An online survey, informed by qualitative research, was administered to women living in rural areas who had given birth in the preceding 3 years. The survey included a discrete choice experiment (DCE) to elicit women's preferences and trade-offs for place of birth. The DCE presented women with a series of eight choice tasks in which place of birth was defined by four attributes: (1) type of facility, (2) familiarity with staff, (3) understanding options and feel relaxed and reassured and (4) the travel time to the place of intrapartum care. DCE data were analysed using an error components logit model to identify preferences.</p><p><strong>Results: </strong>Across 251 survey responses, holding everything else equal, respondents preferred: intrapartum care in locations with more specialist staff and equipment, locations where they understood their options and felt reassured and where travel time was minimal. Women were willing to travel (92-183 min) to a well-staffed and equipped facility if they understood their options and felt relaxed and reassured. Willingness to travel was reduced if the care received at the specialist facility was such that they did not understand their options and felt tense and powerless (41-132 min).</p><p><strong>Conclusion: </strong>These insights into the preferences of recent mums from remote and rural areas could inform future planning of rural intrapartum care.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141621786","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}
Nyi Nyi Soe, Phyu Mon Latt, Alicia King, David Lee, Tiffany R Phillips, Christopher K Fairley, Lei Zhang, Jason J Ong
{"title":"What Do People Want from an AI-Assisted Screening App for Sexually Transmitted Infection-Related Anogenital Lesions: A Discrete Choice Experiment.","authors":"Nyi Nyi Soe, Phyu Mon Latt, Alicia King, David Lee, Tiffany R Phillips, Christopher K Fairley, Lei Zhang, Jason J Ong","doi":"10.1007/s40271-024-00720-8","DOIUrl":"https://doi.org/10.1007/s40271-024-00720-8","url":null,"abstract":"<p><strong>Background: </strong>One of the World Health Organization (WHO) recommendations to achieve its global targets for sexually transmitted infections (STIs) is the increased use of digital technologies. Melbourne Sexual Health Centre (MSHC) has developed an AI-assisted screening application (app) called AiSTi for the detection of common STI-related anogenital skin conditions. This study aims to understand the community's preference for using the AiSTi app.</p><p><strong>Methods: </strong>We used a discrete choice experiment (DCE) to understand community preferences regarding the attributes of the AiSTi app for checking anogenital skin lesions. The DCE design included the attributes: data type; AI accuracy; verification of result by clinician; details of result; speed; professional support; and cost. The anonymous DCE survey was distributed to clients attending MSHC and through social media channels in Australia between January and March 2024. Participant preferences on various app attributes were examined using random parameters logit (RPL) and latent class analysis (LCA) models.</p><p><strong>Results: </strong>The median age of 411 participants was 32 years (interquartile range 26-40 years), with 64% assigned male at birth. Of the participants, 177 (43.1%) identified as same-sex attracted and 137 (33.3%) as heterosexual. In the RPL model, the most influential attribute was the cost of using the app (24.1%), followed by the clinician's verification of results (20.4%), the AI accuracy (19.5%) and the speed of receiving the result (19.1%). The LCA identified two distinct groups: 'all-rounders' (88%), who considered every attribute as important, and a 'cost-focussed' group (12%), who mainly focussed on the price. On the basis of the currently available app attributes, the predicted uptake was 72%. In the short term, a more feasible scenario of improving AI accuracy to 80-89% with clinician verification at a $5 cost could increase uptake to 90%. A long-term optimistic scenario with AI accuracy over 95%, no clinician verification and no cost could increase it to 95%.</p><p><strong>Conclusions: </strong>Preferences for an AI-assisted screening app targeting STI-related anogenital skin lesions are one that is low-cost, clinician-verified, highly accurate and provides results rapidly. An app with these key qualities would substantially improve user uptake.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142562431","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":"Appropriateness of the EQ-HWB for Use in Residential Aged Care: A Proxy Perspective.","authors":"Lidia Engel, Cate Bailey, Ekaterina Bogatyreva, Frances Batchelor, Nancy Devlin, Briony Dow, Andrew S Gilbert, Brendan Mulhern, Rosalie Viney, Tessa Peasgood","doi":"10.1007/s40271-024-00715-5","DOIUrl":"10.1007/s40271-024-00715-5","url":null,"abstract":"<p><strong>Background and objective: </strong>The EQ Health and Wellbeing (EQ-HWB) is a new generic quality-of-life measure for use in evaluating interventions in health, public health and social care. This study aimed to explore proxies' views regarding the appropriateness of the EQ-HWB for measuring residents' quality of life living in residential aged care facilities.</p><p><strong>Methods: </strong>Qualitative think-aloud and semi-structured interviews were conducted with family members and aged care staff across three facilities in Melbourne, Australia. Proxies completed the 25-item EQ-HWB proxy version 2 (i.e. proxy-person perspective) whilst talking through the reasons for choosing their response. All interviews were audio-recorded and transcribed verbatim. A thematic analysis was used for data analysis.</p><p><strong>Results: </strong>The sample included 29 proxies; nine family members and 20 aged care staff. The first theme summarised proxies' ability to proxy report residents' health and well-being using the EQ-HWB, which highlighted challenges with adherence to the proxy perspective, proxies' limited knowledge about residents, disagreement with residents' self-evaluation and use of heuristics. The second theme reflected feedback on the suitability of the EQ-HWB for use in residential aged care. Although proxies perceived that the EQ-HWB covered important domains, there were concerns about ambiguity, inappropriate examples, double-barrelled items and perceived repetition. Suggestions were made to improve the response options, comprehensiveness, recall period, layout and instructions of the questionnaire.</p><p><strong>Conclusions: </strong>While the EQ-HWB captures domains relevant to residential aged care, modifications to item wording and examples are necessary to improve its appropriateness. Use of the proxy-person perspective revealed some challenges that require further consideration.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461598/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142134426","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}
Thi Quynh Anh Ho, Lidia Engel, Glenn Melvin, Long Khanh-Dao Le, Ha N D Le, Cathrine Mihalopoulos
{"title":"Young People's Barriers and Facilitators of Engagement with Web-Based Mental Health Interventions for Anxiety and Depression: A Qualitative Study.","authors":"Thi Quynh Anh Ho, Lidia Engel, Glenn Melvin, Long Khanh-Dao Le, Ha N D Le, Cathrine Mihalopoulos","doi":"10.1007/s40271-024-00707-5","DOIUrl":"10.1007/s40271-024-00707-5","url":null,"abstract":"<p><strong>Background: </strong>The prevalence of anxiety and depressive symptoms in young people have increased in many countries around the world. Web-based mental health interventions (or W-MHIs) have the potential to reduce anxiety and depression symptoms for young people. Although W-MHIs have become more widely used by young people since the coronavirus disease 2019 (COVID-19) pandemic, real-world engagement in these W-MHIs has remained low compared with engagement reported in research studies. Moreover, there are limited studies examining factors influencing engagement with W-MHIs in the post-COVID-19 pandemic years.</p><p><strong>Objective: </strong>This study aims to explore barriers and facilitators of engagement with W-MHIs for anxiety and depression among young people.</p><p><strong>Method: </strong>Seventeen semi-structured interviews and one focus group with three participants were conducted online via Zoom between February and March 2023. Participants were young people aged 18-25 years who had self-reported experience of anxiety and/or depression in the past 6 months, lived in Australia, and considered using W-MHIs to manage their anxiety and/or depression symptoms. Inductive thematic analysis was performed to understand the key barriers and facilitators of young people's engagement with W-MHIs.</p><p><strong>Results: </strong>Both individual- and intervention-related factors influenced young people's engagement with W-MHIs. Facilitators of engagement included personal trust and beliefs in W-MHIs, ability to contact a health professional, programme suitability (e.g., affordability, content aligning with user needs), programme usability (e.g., user interface), and accessibility of the online platform. Barriers included concerns about online security, lack of human interaction and immediate responses from health professionals (if any), and negative experience with mental health programmes. Participants expressed greater willingness to pay if they could contact health professionals during the programme.</p><p><strong>Conclusion: </strong>Better promotion strategies for mental health and W-MHI awareness are needed to increase the perceived importance and priority of mental health interventions among young people. Young people should be involved in the W-MHI co-design to enhance the programme suitability and usability for young people, fostering their engagement with W-MHIs.</p>","PeriodicalId":51271,"journal":{"name":"Patient-Patient Centered Outcomes Research","volume":null,"pages":null},"PeriodicalIF":3.4,"publicationDate":"2024-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11461805/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141604464","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}