Palliative Medicine最新文献

Background: Family caregivers play a crucial role in providing home palliative care for non-cancer patients with advanced illnesses. Given the complexity and heterogeneity of end-of-life caregiving experiences, there is a need to understand factors influencing caregiver outcomes for different profiles of caregivers. It is also crucial to consider the influence of cultural values on caregiving experiences, particularly in Asian settings.

Aim: To explore the lived experiences of caregivers of non-cancer patients with advanced illnesses in Singapore.

Design: A secondary qualitative analysis of transcripts from interviews conducted as part of a realist evaluation of a non-cancer home-based palliative care programme. Framework analysis was carried out using a combined theoretical framework to identify determinants, mediators and outcomes of caregiving. Analysis was stratified according to five caregiver profiles characterised based on the perceived burdens and benefits of caregiving.

Setting/participants: Twenty interview transcripts of family caregivers of non-cancer patients with advanced illnesses were analysed.

Results: Two, eight, three and seven family caregivers were profiled to have 'Intensive', 'Balanced', 'Relationship' and 'Satisfied' caregiving experiences respectively. Across all profiles, caregivers' psychological outcomes were found to be more prominent than physical outcomes. Caregivers with 'Intensive'' and 'Balanced' profiles experienced greater caregiving intensity and poorer psychological well-being, as compared to caregivers with 'Relationship' and 'Satisfied' profiles. Caregiver appraisal and quality of relationship with others were found as key mitigating factors impacting caregiving demands on well-being.

Conclusions: Insights gleaned from this study can be used to develop resources for home palliative providers, tailored to the different caregiving profiles.

Background: Recent research has demonstrated higher levels of psychological distress for bereaved same-gender partners compared to different-gender partners. Economic outcomes have not yet been examined.

Aim: To examine whether there are differences between same- and different-gender civil partners or spouses (hereafter 'partners') in the amount of unpaid care provided in the 3 months pre-bereavement, and time taken off work and formal healthcare used in the 3 months pre- or post-bereavement.

Design: A population-based cross-sectional survey of bereaved partners from England/Wales was conducted including three economic outcomes of interest: unpaid care, time taken off work, and formal healthcare used. We estimated formal healthcare costs using reference costs. We balanced groups on sociodemographic characteristics using propensity score weights and estimated average marginal difference in outcomes between groups using multivariable regressions.

Setting/participants: There were 542 complete cases for primary analysis (220 same-gender partners, 322 different-gender partners).

Results: Same- and different-gender partners provided very high levels of unpaid care pre-bereavement (mean 122 h/week). Of those in paid employment, 85% missed some work pre- and post-bereavement. Same-gender partners had higher formal healthcare costs post-bereavement (+£79, 95% CI: +2 to +156). There were no other significant differences between groups.

Conclusion: The economic burdens of bereavement are substantial. Same-gender partners were associated with more formal healthcare use than different-gender partners post-bereavement, possibly connected to higher levels of psychological distress. Future research should consider longer-term impacts of partner bereavement on health outcomes, explore whether care services are experienced as inclusive, and target ethnically diverse and gender diverse communities.

Background: A dearth of evidence exists on how to include children and young people in palliative care research.

Aim: We aimed to identify successful practices in involvement, recruitment and data collection with children and young people with life-limiting illness in research.

Design: We synthesised methods from five primary studies from three geographical regions in which children with life-limiting conditions were recruited and interviewed. Using Expert Elicitation Methodology we identified successful practices in the three areas of involvement, recruitment and data collection. We established consensus on methodological challenges and solutions, and developed 10 recommendations for inclusion in research protocols.

Setting: Primary cross-national research in three regions; Middle East (one study), sub-Saharan Africa (one study), Europe (three studies), reporting on studies that recruited N = 244 children aged 5-18 years.

Results: Recommendations are: (1) research team supported by advisory group of children for entire research process; (2) appropriate distress protocol tailored to population; (3) opt not to use term 'palliative care' in study materials if significant distress is a risk; (4) be deliberate in purposive sampling to ensure diagnoses heterogeneity where appropriate; (5) age-appropriate information materials pre-tested by children; (6) clinical teams receive training in recruitment; (7) time to build rapport before starting data collection; (8) consider potential biases and advantages of having parent/carer present during interview; (9) use age-appropriate toys/games during interviews; (10) selfcare for researchers to manage distress.

Conclusions: These recommendations can guide design and conduct of research, enabling children with life-limiting illness to meaningfully participate and express their views.

Background: Young carers support family members with a range of health issues but with known detrimental impacts on young carers themselves suggesting they require support. The Carer Support Needs Assessment Tool (v3.0) is a well-established tool enabling unpaid/family carers to identify and express their support needs to healthcare professionals. However its comprehensiveness for young carers is unknown.

Aim: To explore whether the Carer Support Needs Assessment Tool (v3.0) covers the support needs of young carers identified within published literature.

Design: Systematic literature search and narrative review. English language studies were identified against predetermined inclusion/exclusion criteria through searching databases and reference lists of included papers. Papers were critically appraised, and data extracted and synthesised by three reviewers. Identified needs were mapped to the Carer Support Needs Assessment Tool (v3.0) questions.

Data sources: CINAHL (EBSCO), EMBASE (Ovid), Applied Social Science Index and Abstract, Medline (EBSCO), American Psychological Association, PsycINFO and the Cochrane Database of Systematic Reviews (January 2010-December 2024).

Result: Thirty-four papers were included. Synthesis of findings confirmed that young carers have (often unmet) support needs relating to information, emotional distress, relationships (including parent-child relationships), accessing services and education. Mapping these to the Carer Support Needs Assessment Tool (v3.0) questions suggested it requires adapting to ensure coverage of education and parent-child relationships.

Conclusion: Young carers can require support across many areas, suggesting they would benefit from identifying and expressing their needs to healthcare professionals. The Carer Support Needs Assessment Tool Intervention could enable this but requires identified adaptations to the v3.0 tool.

Background: Phase 1 cancer clinical trials offer potential disease modifying treatments for patients with advanced cancer who have not responded to standard treatments. These patients also experience palliative care needs that should be addressed. However, misunderstandings may arise between the goals of experimental treatments and the goals of palliative care, especially when the latter focuses on quality of life.

Aim: This study aimed to map the existing literature on the provision and integration of palliative care within phase 1 clinical trials, identifying knowledge gaps and informing future research.

Design: A systematic scoping review.

Data sources: Studies published from 2003 to 2023 were identified through searches in PubMed, Web of Science, Scopus, CINAHL, PsycINFO and Google Scholar, focussing on people living with advanced cancer enrolled in phase 1 clinical trials.

Results: Fifty studies were included from 452 screened. Key results revealed patients' limited life expectancy, high symptom burden, distress and unmet spiritual needs. Notably, patients were reluctant to seek prognostic information or engage in end-of-life discussions, complicating advance care planning. End-of-life care involved frequent unscheduled hospital admissions, hospital deaths and late hospice-care referrals. Caregivers experienced significant distress, while healthcare professionals faced barriers to integrating palliative care. Palliative care interventions varied widely in approaches, settings and outcomes.

Conclusion: This review highlights the unique needs of patients and caregivers in Phase 1 Cancer Clinical Trials and the complexities of integrating palliative care. Future research should focus on integrating specialised palliative care into oncology trials and developing standardised guidelines for clinical trial units.

Background: Opioid-induced constipation is a common side effect of Oxycodone. Oxycodone/Naloxone Prolonged Release (OXN PR) mitigates opioid-induced constipation in non-cancer pain, however its evidence is limited in people with pain from advanced cancer.

Aims: To demonstrate analgesic non-inferiority, and superiority in reducing constipation for Oxycodone/Naloxone Prolonged Release (OXN PR) compared to Oxycodone Prolonged Release (Oxy PR).

Design: Multi-centre open-label randomised controlled trial comparing OXN PR to Oxy PR over 5 weeks. The primary aim was to demonstrate analgesic non-inferiority of OXN PR compared to Oxy PR. The secondary aim was to demonstrate superiority of constipation reduction in the OXN PR arm.

Setting/participants: Participants with moderate-severe pain (⩾4/10) from advanced cancer were eligible.

Results: Thirty seven of planned 96 patients were recruited with the study stopping early due to enrolment challenges during the COVID-19 pandemic. Average pain was -1.5 points (95% CI -3.3; 0.4) favouring the OXN PR arm compared to Oxy PR at 5 weeks, meeting analgesic non-inferiority, defined as falling within a one point non-inferiority margin. The OXN PR arm demonstrated less constipation with a significantly lower Bowel Function Index score (-24.87 (95% CI 47.54; 2.21), p = 0.03) compared to Oxy PR. Adverse effect safety profile favoured OXN PR.

Conclusions: OXN PR is non-inferior to Oxy PR in analgesic effectiveness and superior in reducing constipation. These results indicate OXN PR as the choice of opioid preparation in advanced cancer. Future studies may explore adding naloxone to other slow and immediate release opioid preparations.

Trial registry: Australian New Zealand Clinical Trials RegistryTrial registration number:ACTRN12619001282178URL of trial registry record:https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=377673&isReview=true.

Background: Pain assessment in palliative care is essential, but differences between patient-reported and clinician-assessed pain can affect care decisions. Identifying factors contributing to these differences can improve pain management.

Aim: To investigate the clinical and symptom-related factors associated with variations between patient-reported and clinician-assessed pain among patients admitted to a palliative care ward.

Design: A retrospective observational study using palliative care outcomes collaboration instruments was conducted from July 2021 to September 2023.

Setting/participants: The study included 755 terminally ill patients admitted to a palliative ward in Taiwan. Pain was assessed daily using the symptom assessment scale for patient-reported pain and the palliative care problem severity score for clinician-assessed pain.

Results: Among 755 palliative care patients (median age = 69 years; 59.3% female), 181 were classified into the different group and 574 into the similar group based on initial patient-reported and clinician-assessed pain scores. Patients in the different group were younger, had a higher proportion of cancer diagnoses, and reported significantly higher levels of pain, fatigue, bowel problems, and difficulty sleeping. In multivariate analysis, bowel problems were the only independent factor associated with being in the different group (odds ratio = 1.07; 95% confidence interval = 1.01-1.14; p = 0.025).

Conclusions: Patients in the different group exhibited greater symptom burden compared to those in the similar group, particularly in pain, fatigue, and bowel problems. Bowel problems independently predicted differences between patient-reported and clinician-assessed pain scores. These results indicate that differences in pain assessment are linked to the severity and complexity of physical symptoms, reinforcing the need for comprehensive, symptom-based evaluations in palliative care.

Background: Despite the increasing prevalence of dementia, persons with dementia often receive suboptimal care near the end of life. In many countries, specialized end-of-life support is offered by hospice. During the transitions to end-of-life care, caregivers play a crucial role in the decision-making and care provision for the persons with dementia. However, caregivers' experiences regarding the initial entry to hospice have not been comprehensively assessed in the dementia context.

Aim: To synthesize qualitative evidence on the caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia.

Design: Systematic review and thematic synthesisData sources:We conducted a systematic literature search across PubMed, CINAHL, Embase, PsycINFO, and Scopus. We considered articles published between 2009 and 2024 that contained qualitative data on hospice entry collected from dementia caregivers.

Results: Twenty-two articles met our study eligibility criteria. Five themes were identified: (a) caregivers' observation and perception of severe stage dementia, (b) whether hospice was the right choice for persons with dementia, (c) burden due to the practical aspects of caregiving, (d) emotions and perception about death and hospice, and (e) guidance and access to hospice. These five themes encompassed 11 facilitators and 15 barriers.

Conclusions: Dementia caregivers experience intrapersonal, interpersonal, emotional, logistical, and physical challenges in ensuring quality end-of-life support for their loved one (e.g. limited understanding of end-stage dementia, gatekeeping providers, and family conflicts). The unique needs of caregivers caring for a seriously ill family member with dementia are not being fully addressed by the current available services and policies.

Background: The palliative care evidence base has grown substantially in recent years with the benefits, barriers, and facilitators of care delivery well established across many settings and contexts.

Aim: We aimed to rigorously and systematically delineate the trends, themes, and scope of the top 100 papers aided by bibliometrics to map the field of palliative care science and identify future directions for the field.

Design: We conducted a bibliometric analysis in accordance with the BIBLIO checklist for reporting the bibliometric reviews.

Data source: Employing a comprehensive search string we examined the Scopus online database from inception to December 14th, 2024, to identify and retrieve pertinent publications. Extracted data included year of publication, number of citations and other metrics, authorship, and study design, among others.

Results: Total citations for the 100 most cited articles ranged from 5083 to 419. Most articles originated from the US (43%), United Kingdom (16%), and Canada (15%). Overall, 83 different first authors and 87 senior authors contributed; about half first authors and 32% of senior authors were women. Forty-two different journals published the articles. Key themes were end-of-life care, palliative care integration within different medical sub-specialties (e.g. oncology, respiratory disease), clinical tool development and validation, and symptom management.

Conclusion: Our findings provide a comprehensive map of the palliative care scientific landscape with key implications for future research, clinical practice, and policy. These results can be used to mitigate scientific disparities in author representation, ensure appropriate evidence use across international contexts, and empower high-quality evidence-based palliative care advocacy.