BMC Palliative Care最新文献

{"title":"Meta-aggregation of facilitators and barriers to home-based palliative care.","authors":"Zixuan Liu, Hui Zhang, Yuxuan Zhang, Yuqing Dai, Yu Sheng","doi":"10.1186/s12904-025-01788-1","DOIUrl":"10.1186/s12904-025-01788-1","url":null,"abstract":"<p><strong>Background: </strong>Home-based palliative care is in the early stages of development, and its implementation continues to face numerous challenges.</p><p><strong>Objective: </strong>This study aims to systematically synthesize qualitative research on the facilitators and barriers to home-based palliative care, offering evidence-based recommendations to support the advancement of palliative care in China.</p><p><strong>Methods: </strong>A systematic search was conducted across multiple databases including PubMed, Web of Science, Embase, Cochrane Library, CINAHL, CNKI, Wanfang,2222 and VIP Database for qualitative studies related to home-based palliative care, with the search covering studies published up to October 3, 2024. Quality assessment was performed using the JBI standards for qualitative research. Meta-Aggregation was performed using an aggregative integration approach, and the data were analyzed and managed using Nvivo software.</p><p><strong>Conclusions: </strong>Twelve studies involving 334 participants were included. Ninety-nine initial findings were extracted and categorized into eight groups. Facilitators included family support, collaboration within interdisciplinary teams, and community resource availability. Barriers comprised challenges in healthcare policies, cultural and social influences, lack of Knowledge and Attitudes of Healthcare Workers, lack of Knowledge and Attitudes of Patients and Families, and insufficient home care resources.</p><p><strong>Conclusion: </strong>To advance palliative care in China, it is critical to enhance policy support and financial backing, improve the education and training of healthcare professionals and the public in diverse cultural settings, strengthen community nursing capabilities, and explore the integration of information technology in care delivery.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"146"},"PeriodicalIF":2.5,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12101005/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144129189","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Process evaluation of a self-compassion-based online group psychotherapy programme for bereavement-related grief: a thematic analysis of the COMPACT feasibility trial.","authors":"Haruka Tani, Misako Yamada, Shoko Sugao, Yasuhiro Kotera, Yu Uneno","doi":"10.1186/s12904-025-01780-9","DOIUrl":"10.1186/s12904-025-01780-9","url":null,"abstract":"<p><strong>Background: </strong>Bereavement-related grief and prolonged grief disorders are highly prevalent; however, standardised care approaches are lacking. To address this gap, the self-COMPAssion-based online group psyChoTherapy for bereavement-related grief (COMPACT) feasibility trial was developed; it showed promising participant engagement and potential effectiveness. This study aimed to elucidate the mechanisms underlying the impact, contextual factors, and implementation considerations of the COMPACT programme.</p><p><strong>Methods: </strong>Online semi-structured interviews were conducted and analysed using a deductive reflexive thematic analysis guided by the UK Medical Research Council process evaluation framework. The interviews involved 21 participants and 10 intervention personnel from the COMPACT feasibility trial. The Helpful Aspects of Therapy Form (HATF) was used to guide the interviews, ensuring a focus on identifying mechanisms of impact, contextual factors, and implementation considerations.</p><p><strong>Results: </strong>Four main \"mechanism of impact\" themes were identified: common humanity and self-awareness, perceived importance of self-care, deepening self-insights and personal growth, and amplified self-compassion. Two associated \"contextual factor\" themes (group therapy and a secure programme environment) were highlighted. Additionally, two \"implementation consideration\" themes (barriers and facilitators) were found, with related contextual themes of group therapy and online delivery.</p><p><strong>Conclusions: </strong>The core impact mechanisms of the COMPACT programme included accessible online delivery, group work enhancing common humanity, and a safe, supportive environment deepening self-insight, self-care, and self-compassion. Future research should prioritise refining programme content, improving participant assessment, and enhancing training for intervention personnel to enable a randomised controlled trial testing the effectiveness of the intervention.</p><p><strong>Trial registration: </strong>UMIN000048554, registered 2nd August 2022.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"144"},"PeriodicalIF":2.5,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12101004/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144129265","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Describing the elements of an effective dementia palliative care service.","authors":"Siobhan Fox, Jonathan Drennan, Suzanne Guerin, W George Kernohan, Aileen Murphy, Niamh O'Connor, Suzanne Timmons","doi":"10.1186/s12904-025-01701-w","DOIUrl":"10.1186/s12904-025-01701-w","url":null,"abstract":"<p><strong>Background: </strong>As dementia is a life-limiting illness, it is now widely accepted that people with dementia benefit from palliative care. The core components of palliative care for people with dementia have been suggested, however little is known about what an effective dementia palliative care service looks like in practice. While some services exist, a lack of description and scant detail on how and why they work makes it difficult for others to learn from existing successful models and impedes replication. Accordingly, we set out to describe an effective dementia palliative care service using programme theory, and to visually represent it in a logic model.</p><p><strong>Methods: </strong>This was mixed-methods study. An exemplary dementia palliative care service, which cares for people with advanced dementia in their own home in the last year of life, had been identified from a previous survey. The development of the programme logic model was informed by interviews with staff (n = 6), staff surveys (n = 1), service user surveys (n = 10) and the analysis of secondary data sources including routinely collected service data.</p><p><strong>Results: </strong>The logic model and summary results explain in detail how this dementia palliative care service undertook activities relating to person-centred care, carer support, end-of-life care, accessible care, timely care, and integrated care. It maps each activity to specific outputs and outcomes, showing that dementia palliative care, when provided appropriately, can greatly improve the quality of care received by people living and dying with advanced dementia, and their families, in the community.</p><p><strong>Conclusions: </strong>The logic model presented may support those developing dementia palliative care services, or guide others running existing services in how to systematically present their service activities to others, and demonstrates how clinicians, policy-makers, and others involved in service planning can utilise logic models to design new services and improve existing services.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"143"},"PeriodicalIF":2.5,"publicationDate":"2025-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12096784/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144129078","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Cross-cultural adaptation and validation of the Chinese version of the quality of communication questionnaire.","authors":"Jacqueline K Yuen, Helen Y L Chan, Tracy W T Chen, Steven T Chu, Annie O L Kwok, Doris Y P Leung, Harinder S Gill, Kwok-Wai Tsang, Doris M W Tse, Desmond Y H Yap, Terence Yip, Robert M Arnold","doi":"10.1186/s12904-025-01786-3","DOIUrl":"10.1186/s12904-025-01786-3","url":null,"abstract":"<p><strong>Background: </strong>Effective clinician-patient communication is essential for delivering quality end-of-life care. However, there are no validated measures to assess the quality of end-of-life communication for Chinese patients.</p><p><strong>Methods: </strong>This study aims to cross-culturally adapt and validate the patient-reported Quality of Communication Questionnaire (QOC) for Chinese speaking patients. The QOC was translated and adapted using a standardized methodology consisting of forward translations, backward translations, expert panel review, and testing with patients. We conducted a cross-sectional study to perform principal component, content validity, internal consistency, convergent and discriminant validity analyses of the 16-item Chinese QOC (C-QOC). Subjects were Chinese-speaking advanced cancer (n = 82) and advanced chronic kidney disease (n = 68) patients attending outpatient clinics in five hospitals or receiving home-based palliative care in Hong Kong.</p><p><strong>Results: </strong>The content validity of the C-QOC was established by an expert panel. The C-QOC has a 3-component structure (general communication skills, communication about illness trajectory, and end-of-life care planning subscales) and demonstrated good internal consistency (Cronbach's α = 0.88; subscales 0.84-0.90). Convergent validity was supported by positive association between C-QOC score and overall clinician communication quality (r = 0.47, p < 0.001) and clinician comfort in discussing dying (r = 0.63, p < 0.001). Discriminant validity was demonstrated by the stronger association between overall clinician communication quality and general communication skills, compared to the other two subscales.</p><p><strong>Conclusions: </strong>The C-QOC is a valid, reliable, and culturally relevant instrument for evaluating the quality of clinician end-of-life care communication by Chinese patients with advanced cancer and chronic kidney disease.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"140"},"PeriodicalIF":2.5,"publicationDate":"2025-05-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12087113/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144103083","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"It's my life, it's my choice and I want to say when\" vs \"A good death is to be on good terms with God\". Comparing the views of people with dementia in the UK and Brazil about a good death: a cross-cultural qualitative study.","authors":"Rasa Mikelyte, Karen Harrison Dening, Déborah Oliveira, Julia Maria Vanelli, Adriele Ferreira Neves, Natashe Lemos Dekker, Francelise Pivetta Roque, Edison Iglesias de Oliveira Vidal","doi":"10.1186/s12904-025-01771-w","DOIUrl":"10.1186/s12904-025-01771-w","url":null,"abstract":"<p><strong>Background: </strong>It is unclear what People Living with Dementia (PLwD) consider a good death to entail, or how those perspectives vary according to culture and context. We aimed to compare the meaning of a good death for PLwD in Brazil and in the United Kingdom (UK).</p><p><strong>Methods: </strong>In this cross-sectional qualitative study, we conducted semi-structured interviews with a convenience sample of 32 PLwD (16 in Brazil and 16 in the UK) using jointly designed, equivalent interview guides. Two teams of interdisciplinary researchers independently analysed transcripts for their country using inductive thematic analysis, followed by jointly developing overarching themes on the contrasts and similarities across both settings.</p><p><strong>Results: </strong>We identified three shared themes: choice and control; spirituality; and fears and wishes. Choice and control permeated all aspects of what a good death meant to PLwD in the UK but was largely absent from Brazilian narratives. The opposite was true for spirituality, which was central to the meaning of a good death in Brazil, while far less prominent in the UK. In both countries, previous experiences with the death of others often shaped wishes and fears towards their own deaths.</p><p><strong>Conclusion: </strong>Our results have potential to expand the awareness and sensitivity of health and social care professionals around different cultural views on what a good death means for PLwD and what helps or hinders achieving it. Additionally, our findings challenge global indices of quality of death that do not take cultural and contextual differences into account.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"138"},"PeriodicalIF":2.5,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12082953/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144086718","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical, legal, and social aspects of health technologies for home-based paediatric palliative care - a systematic review.","authors":"Erik Bjørnerud, Simen A Steindal, Bjørn M Hofmann, Anette Winger, Kirsti Riiser, Weiqin Chen, Heidi Holmen","doi":"10.1186/s12904-025-01774-7","DOIUrl":"10.1186/s12904-025-01774-7","url":null,"abstract":"&lt;p&gt;&lt;strong&gt;Background: &lt;/strong&gt;Home-based health technologies for paediatric palliative care have great potential to improve care for children, caregivers, healthcare professionals, and health systems. However, no systematic reviews have directly addressed the intersections among the ethical, legal, and social aspects of these technologies for paediatric palliative care. The objective of this systematic review was to identify and analyse the ethical, legal, and social aspects of health technologies for home-based paediatric palliative care.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Methods: &lt;/strong&gt;We have conducted a systematic review, inspired by the framework suggested by McCullough. We registered the review protocol in PROSPERO (CRD42024496034) and conducted a systematic search in six databases (ASSIA, Cinahl, Embase, Medline, PsycInfo, and Web of Science) on 27 November 2023 to identify relevant studies. Pairs of authors independently assessed the eligibility of the studies and extracted data. The eligible studies employed a range of different methods from randomised controlled trials to usability studies. We then synthesised the data according to the ethical, legal and social aspects of the technologies.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Results: &lt;/strong&gt;Overall, our search resulted in 9,545 reports, which were screened after deduplication. The quality of the reports was assessed according to being published in peer reviewed journals. Fifteen reports were included, which showed that the main ethical issues are harm reduction, improved services, agency and autonomy, trust and empowerment. The main legal aspects are privacy equal access to care, participation in decisions and standardisation. The main social issues are cost reduction, transformation of family relations and novel modes of communication. Health technologies have the potential to alleviate burdens and improve the quality of care for children in paediatric palliative care and their families, but they also create novel burdens through constant reporting requirements and the vulnerability of some health technologies to technological malfunction. Nevertheless, they can increase family inclusion and children's autonomy and participation, thus empowering children, particularly through co-development of solutions. Furthermore, studies have indicated that health technologies themselves may have positive effects on children's health. The legal aspects of health technologies pertain to privacy and control over one's health information and equitable access to care and participation in care, while social issues can potentially reduce costs for health systems but also involve novel costs.&lt;/p&gt;&lt;p&gt;&lt;strong&gt;Conclusion: &lt;/strong&gt;The reviewed studies concerning the co-development of health technologies reported increased benefits in terms of health, agency, well-being, and strengthened children's rights in home-based paediatric palliative care. However, the social dimensions of such technologies can lead to both public savings and reconfigura","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"139"},"PeriodicalIF":2.5,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12082856/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144086805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"You like to be in control of your own destiny to a degree, don't you?\": conscientious autonomy and planning for future care with dementia.","authors":"Josie Dixon, Jacqueline Damant, Edmund Stubbs, Ben Hicks, Kate Gridley, Derek King, Eleanor Miles, Sube Banerjee","doi":"10.1186/s12904-025-01782-7","DOIUrl":"10.1186/s12904-025-01782-7","url":null,"abstract":"<p><strong>Background: </strong>We explored people with dementia and their family carers' experiences of future care planning, guided by Kukla's model of conscientious autonomy. This relational autonomy concept focuses on the alignment of self-managed health-care practices with people's authentic goals and values. It involves people adopting recommended practices for their own authentic reasons, questioning them where necessary, and being supported by the health and care system to understand their rationale and implement them effectively.</p><p><strong>Methods: </strong>In-depth interviews were conducted with 16 people recently diagnosed with dementia and 31 family carers, purposively and selectively sampled from a large research cohort on the basis of their 'conscientiousness,' using the indicator of already having had informal family conversations about future care. Data were analysed thematically using NVivo software and methods informed by interpretive grounded theory.</p><p><strong>Findings: </strong>Participants sought to feel secure by following recommended practices, manage uncertainty, avoid crises, share burdens within families, and avoid poor end-of-life experiences. However, support was often lacking. Many were unable to speak with specialists and described limited conversations with GPs, leaving them with unaddressed questions. Some described feelings of abandonment. Disease progression was commonly poorly explained, with some participants later encountering information they found confronting. Carers who continued researching the condition felt responsible but under-resourced for discussing disease progression with their relative and believed this should be undertaken by a professional. Formal processes-e.g. Lasting Power of Attorney (LPAs), advance care planning, Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) could prompt informal discussions but gaining an overview was difficult, with confusion about how they would be utilised, what information to include and apparent overlap between processes. Misunderstandings about medical and end-of-life decision-making were commonplace.</p><p><strong>Conclusion: </strong>If even those who are most conscientious about planning for future care struggle to access adequate support, others likely face greater challenges. Clearer communication, at an individual and public level, about disease progression, the practical challenges of medical and end-of-life decision-making, and palliative care options is urgently needed. Early group education sessions and communication strategies that engage with existing lay concepts and public discourse are likely to be helpful. Formal care planning processes should be clearer, more streamlined, and better aligned with the practical goals of people with dementia and their family carers.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"137"},"PeriodicalIF":2.5,"publicationDate":"2025-05-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12082967/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144086776","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The influence of spirituality on psychological resilience in cancer patients undergoing oncological treatment: a cross-sectional study.","authors":"Angie Gutierrez-Rojas, Christian Manco-Herrera, Ximena Nuñez-Escarcena, Libya Loayza-Ramirez, Silvia Sanca-Valeriano, Wuilbert Rodriguez-Pantigoso, Marcos Espinola-Sanchez","doi":"10.1186/s12904-025-01768-5","DOIUrl":"https://doi.org/10.1186/s12904-025-01768-5","url":null,"abstract":"<p><strong>Introduction: </strong>Spirituality and resilience have been studied as possible factors influencing psychological adjustment in cancer patients. However, the evidence on their relationship remains inconsistent, and their impact in this context is not fully established.</p><p><strong>Objective: </strong>This study assessed the influence of spirituality on psychological resilience in cancer patients undergoing chemotherapy and/or radiotherapy.</p><p><strong>Methods: </strong>This cross-sectional observational study included 170 oncology outpatients who were receiving chemotherapy and/or radiotherapy at a specialized oncology center in Peru. Spirituality was measured with the Spiritual Perspective Scale (SPS) and resilience with the Wagnild and Young Resilience Scale. Spearman correlation coefficient (r_s) analyses and multiple linear regression models adjusted for age, gender, educational level, socioeconomic status, clinical stage, and comorbidities were applied.</p><p><strong>Results: </strong>A significant positive correlation was found between spirituality and resilience (r_s=0.53, p < 0.001). The spiritual beliefs dimension exhibited a stronger association with resilience (r_s=0.56, p < 0.001) compared to spiritual practices (r_s=0.28, p < 0.001). In the multivariate analysis, spiritual beliefs (β = 2.38; 95%CI: 1.92-2.83) and a higher educational level (β = 12.61; 95%CI: 6.27-18.95) were significant predictors of higher resilience.</p><p><strong>Conclusions: </strong>Spirituality, particularly spiritual beliefs, had a positive influence on resilience in cancer patients, regardless of educational level. These findings enhance the need to integrate the spiritual approach in psycho-oncological care to contribute to patients' emotional well-being. However, further studies are required to deepen this relationship and explore its impact in different clinical contexts.</p><p><strong>Implications for practice: </strong>Including spiritual assessments, especially spiritual beliefs, in clinical practice may enhance personalized approaches to optimize psycho-oncological care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"136"},"PeriodicalIF":2.5,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12077010/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144081459","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Healthcare professionals' perspectives on assessing selected patient-reported outcome measures in specialist palliative care institutions: a multi-country mixed-methods study.","authors":"Elisabeth Saly, Judit Simon, Claudia Fischer","doi":"10.1186/s12904-025-01775-6","DOIUrl":"https://doi.org/10.1186/s12904-025-01775-6","url":null,"abstract":"<p><strong>Background: </strong>Despite the growing significance of patient-reported outcome measures (PROMs) for various purposes, including economic evaluations, implementing them effectively in palliative and end-of-life care settings remains a challenge. This study aimed to identify barriers and facilitators to PROMs data collection in inpatient specialist palliative care settings and to assess data collectors' applied perspectives on four relevant PROMs.</p><p><strong>Methods: </strong>We conducted an explanatory sequential mixed-methods study, including an online survey (N = 29) and qualitative interviews (N = 12) with healthcare professionals and researchers from eleven countries. These participants had direct experience with PROMs data collection in specialist palliative care settings, either as part of the international iLIVE project or the Austrian PallPROMS study. The aim was to identify opportunities for optimising clinical care and other assessment purposes in the future. We conducted a descriptive analysis of the survey data and a thematic analysis of the qualitative data.</p><p><strong>Results: </strong>The main reflected factors were patients' very limited ability to self-complete PROMs and the optimal timing and duration of assessments. Opinions on the usefulness of different PROMs varied significantly according to the role of the participants. Overall, setting-specific PROMs assessing symptom burden were preferred to more generic quality-of-life/wellbeing measures. Identified barriers and facilitators related to five themes: patient-related factors, data collection processes, PROM type, staff perceptions and organisational factors. Findings also highlighted better information and training needs.</p><p><strong>Conclusions: </strong>Prioritising care-relevant tools and carefully planning data collection, with main barriers addressed, can significantly increase the successful implementation of PROMs collection in specialist palliative care institutions. Since the preferred PROMs are not directly suitable for health economic evaluation, it is crucial to explore mapping alternatives for this purpose.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"135"},"PeriodicalIF":2.5,"publicationDate":"2025-05-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12076854/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144081457","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comparing EQ-5D-5L and IPOS among residents with malignant tumors in a community home hospice: a longitudinal study.","authors":"Takeshi Miura, Masato Kaneko, Kei Kawano, Yuka Kanoya, Makoto Kuroki","doi":"10.1186/s12904-025-01779-2","DOIUrl":"https://doi.org/10.1186/s12904-025-01779-2","url":null,"abstract":"<p><strong>Background: </strong>In community home hospices, limited medical staff and high workloads necessitate measurement models that objectively and effectively capture the needs of residents with malignant tumors. This study compares the measurement properties and feasibility of the EuroQol 5-Dimension 5-level (EQ-5D-5L) and Integrated Palliative care Outcome Scale (IPOS), primarily used in palliative care, as only few studies have compared their measurement properties and feasibility based on their actual application in home hospice care.</p><p><strong>Methods: </strong>Two-wave longitudinal data were collected from 2021 to 2023 at a community home hospice in Japan from a sample of 120 residents diagnosed with malignant tumors. Residents completed both the EQ-5D-5L and IPOS upon admission. Data were collected at three main time points: the initial admission date, one week after admission, and when residents' conditions changed. This study evaluates the feasibility and measurement properties of EQ-5D-5L and IPOS, including ceiling and floor effects, correlations among domains, and responsiveness.</p><p><strong>Results: </strong>The EQ-5D-5L demonstrated high feasibility, whereas the IPOS had moderate feasibility with a higher missing data rate. Both scales had low ceiling and floor effects. The EQ-5D-5L showed low responsiveness, while the IPOS showed moderate responsiveness. Anxiety and the emotional domains of the IPOS or EQ-5D-5L scores were insignificantly correlated. Participants who did not complete the IPOS had significantly lower EQ-5D-5L scores.</p><p><strong>Conclusions: </strong>The EQ-5D-5L may be slightly more suitable for the primary screening of needs in this setting owing to its higher feasibility. In contrast, the IPOS is an excellent tool when it is important to comprehensively and deeply capture the needs of individuals over time. We note that when selecting or using different measures, one must consider the specific characteristics of each measure.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"134"},"PeriodicalIF":2.5,"publicationDate":"2025-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12067693/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144062401","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}