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Patients with advanced liver disease (ALD) may benefit from the early integration of supportive care toward the end of life. Engagement with supportive and palliative care could decrease disease-related distress and alleviate pressure on the health system. This trial evaluated whether a transdisciplinary supportive care model, aligned with standard care and guided by patient- and carer-identified needs, could optimize health service utilization and outcomes for patients and carers living with ALD.
Methods
A 90-day multicenter, mixed-methods pilot randomized controlled trial, “Liver Life,” was conducted at 1 regional tertiary and 1 rural referral hospital in NSW, Australia. The intervention group received patient- and carer-centered supportive care interventions during 5 scheduled allied health-led outpatient visits, alongside ongoing standard care. This paper reports health service utilization and associated costs, and participant-reported measures.
Results
Over 90 days, emergency department presentations were reduced by 66% (incidence rate ratio: 0.34 [0.13–0.80]), and hospital admissions by 64% (incidence rate ratio: 0.36 [0.12–0.98]). Intervention patients were 5 times more likely to have more days “alive and out of hospital” than those receiving standard care alone (odds ratio: 5.34 [1.43–22.1]). As a result, the overall cost of health service use per intervention patient was less than half that of standard care alone.
Significance of results
The Liver Life trial demonstrated the feasibility, acceptability, efficacy, and potential cost savings of a transdisciplinary supportive care model for ALD patients and their caregivers. Future research should investigate the sustainability and transferability of this approach to other populations and other chronic diseases.
To examine the relationships between patient activation, depressive symptoms, and quality of life among older adults receiving palliative oncology care.
Methods
A cross-sectional correlational study was conducted among 145 adults aged ≥60 years receiving palliative oncology care at King Khalid Hospital, Saudi Arabia, using stratified random sampling. Data were collected via a demographic and clinical questionnaire, the Patient Activation Measure-13 (PAM-13), the Patient Health Questionnaire-9 (PHQ-9), and the McGill Quality of Life Questionnaire–Revised (MQOL-R). Descriptive statistics, Pearson correlation, independent t-tests, one-way ANOVA, and multiple linear regression were performed using SPSS version 26.
Results
All participants demonstrated Level 2 patient activation, with a mean PAM-13 score of 50.83 (SD = 1.04). Moderate depressive symptoms were prevalent (mean PHQ-9 = 13.56, SD = 3.48), and overall quality of life was moderate (mean MQOL-R = 55.21, SD = 10.14). Patient activation was weakly but significantly inversely correlated with depressive symptoms (r = −0.179, p < 0.05). No significant associations were found between patient activation and quality of life, or between depressive symptoms and quality of life. Regression analysis showed that patient activation, depressive symptoms, and demographics accounted for only 3.2% of the variance in quality of life (R2 = 0.032, p = 0.714).
Significance of results
Patient activation may modestly reduce depressive symptoms but is not sufficient to improve quality of life in older adults receiving palliative oncology care. Quality of life appears influenced by broader multidimensional factors beyond activation and mood, highlighting the need for comprehensive interventions in palliative care settings.
People with serious illnesses often experience spiritual and emotional pain, manifesting in conditions such as depression, anxiety, and demoralization. Emerging research in psychedelic-assisted therapy has shown efficacy in treating these conditions. Despite evidence that psychedelics frequently occasion mystical/spiritual experiences in participants, there has been little research on support for spiritual, existential, religious, and theological needs, including the use of chaplains on therapeutic teams. Spiritual wellbeing outcomes have been inconsistently used and reported on in current psychedelics studies. The aims of this article are to identify and review patient-centered outcome measures focused on spiritual wellbeing for use in psychedelic research.
Methods
A literature review of instruments was conducted, with 286 articles included, identifying spiritual wellbeing measures within the palliative care population.
Results
Three measures were selected for inclusion: Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being 12- Item Scale (FACIT-Sp-12), European Organization for Research and Treatment of Cancer Quality of Life Spiritual Well-being Questionnaire (EORTC QLQ-SWB-32), and the National Institutes of Health Healing Experience of All Life Stressors (NIH-HEALS). Instrument development, psychometric properties, and use in research for each are discussed.
Significance of Results
Suitability in the context of psychedelic-assisted therapy with the palliative care population includes strong reliability and validity, and they should be accessible to people with various spiritual traditions, practices, and sources of connection. They should be patient-centered in their development, involve multiple stakeholders, and be appropriate for use with palliative care populations. According to these criteria and its orientation toward identifying spiritual change in the context of serious illness, the NIH-HEALS is recommended for wider use in psychedelic-assisted therapy.
Psychedelic therapies are gaining attention as a novel therapy for existential distress in cancer patients. However, such treatments are often stigmatized and the views of support networks are unknown. Caregivers play an essential role in supporting the wellbeing and decision-making of people with cancer. In the context of a trial investigating psychedelic therapy for cancer patients, understanding the experience of the caregiver is important.
Objectives
The objectives of this research were to investigate the hopes, beliefs, perceptions, and experience of caregivers for advanced cancer patients undergoing a trial investigating a psychedelic-assisted therapy.
Methods
Semi-structured interviews asked 15 caregivers about their experience at baseline and 1 month after their close associate had completed treatment in a feasibility trial where participants were randomized to receive either lysergic acid diethylamide (LSD) microdoses or placebo alongside meaning-centered psychotherapy (MCP). Blinded to condition, reflexive thematic analysis was used to analyze interview transcripts.
Results
This study demonstrates the importance of bidirectional influences between caregiver and patient; the experience of one influences the experience of both. Caregivers were generally supportive of their close associate participating in a psychedelic-assisted trial, although some admitted hesitancy in them taking part. Caregivers described a desire to make the most of now, referring to the role of LSD microdose-assisted MCP as a means of accessing hope, improving the dyad relationship, and reducing existential distress.
Significance of Results
Participation in trials investigating psychedelic-assisted MCP may offer hope for patients and their caregivers. Given the bidirectional relationship in wellbeing between cancer dyads, caregivers should be included alongside patients in such trials.
Amyotrophic lateral sclerosis (ALS) is a rare, progressive, and fatal disease that impacts the lives of affected individuals and their caregivers. Informal caregivers play a crucial role in supporting people with ALS (pwALS), yet they face major challenges. This study aims to analyze caregiver burden and health status among informal caregivers of pwALS in Portugal.
Methods
A cross-sectional survey-based study was conducted with adult informal caregivers of pwALS in Portugal, recruited through the Portuguese ALS patient association and healthcare professionals. Data included sociodemographics, caregiving activities, caregiver health (SF-36), patient functional status (ALSFRS-R), and caregiver burden (ZBI).
Results
The study included 113 caregivers. Most were female (61.9%) and the partner (65.5%) or offspring (23.9%) of the pwALS. A quarter of caregivers received no social benefits. Mean ZBI was 32 ± 14.8, with most reporting mild to moderate burden. On the SF-36, general health was 51.1 ± 19.8, with mental health (55 [40; 70]) and vitality (43.8 [31.3; 56.3]) particularly impaired. ZBI scores correlated positively with caregiving hours (r = 0.274, p = 0.003) and negatively with ALSFRS-R (r = −0.411, p < 0.001). High burden caregivers exhibited poorer sleep quality (p = 0.026).
Significance of results
Caregivers experienced mild to moderate burden, with impaired mental health and vitality, but preserved physical functioning. A higher burden was linked with lower quality of life, poorer sleep, and greater patient disability. These findings underline the need for targeted education and training to support caregivers of pwALS.
Previous studies indicate that African immigrant women in the United States have lower rates of cervical cancer screening and prevention than other racial and immigrant groups, with additional heterogeneity by country of origin, language proficiency, and length of U.S. residence.
Objectives
This review aimed to (a) summarize barriers and facilitators to screening, (b) examine how existing studies conceptualize African immigrant identity and employ disaggregated analyses, and (c) apply intersectionality and stress process frameworks to highlight structural determinants shaping screening behaviors.
Methods
This systematic review, registered with PROSPERO (CRD420251151600), synthesizes evidence on cervical cancer screening and HPV vaccination among African immigrant women in the United States. PubMed, ProQuest, EBSCO, PsycINFO, MEDLINE, Scopus, and Google Scholar were searched for peer-reviewed studies published between January 2010 and December 2024. Seventeen studies met inclusion criteria, including cross-sectional surveys (n = 7), qualitative studies (n = 5), mixed-methods studies (n = 3), retrospective cohort analyses (n = 1), and one randomized controlled trial.
Results
Only 11 of the 17 studies disaggregated African immigrant women by country of origin or related subgroup characteristics. Risk of bias was assessed using the Newcastle–Ottawa Scale for observational studies and the Critical Appraisal Skills Programme checklist for qualitative studies. Across studies, African immigrant women consistently faced barriers to screening, including language discordance, lack of insurance, limited HPV awareness, cultural stigma, and unfamiliarity with the U.S. healthcare system. Interventions such as HPV self-sampling and culturally tailored education showed promise in improving screening uptake.
Significance of Results
The findings point to the need for standardized disaggregated data collection, culturally responsive interventions, and theory-driven research to reduce cervical cancer prevention disparities among African immigrant women in the United States.
Withholding or withdrawing life-sustaining therapies (WLST) was introduced in France in 2005 through the Leonetti law to prevent futile treatments and “unreasonable obstinacy.” In France, WLST decisions affect 8.5–14% of ICU patients, according to the literature. The 2016 Claeys–Leonetti law updated the previous legislation, but debates surrounding end-of-life care persist.
Methods
To describe WLST patients and practices under current legislation, we conducted a multicenter, prospective, observational study in ICUs across Eastern France. Eligible adult patients facing WLST decisions were included, requiring written consent from the patient or a trusted person. Patients were followed for 1 month. We described the decision-making process and assessed family satisfaction using the FS-24R-ICU questionnaire.
Results
Between May 3rd and October 3rd, 2023, 73 patients were included (mean age 69 years). The majority of admissions were medical (72.7%), and 50.7% of patients had neurological impairments. ICU staff initiated WLST discussions primarily due to poor survival or quality of life prospects. Only 12.5% of patients had written advance directives, and 59.1% had designated a trusted person. External consultation was not involved in 19.1% of decisions. Families were informed in 91.7% of cases. Decisions to withhold therapies occurred in 68.1% of cases, with resuscitation during cardiac arrest being the most commonly withheld intervention (98.0%). Treatment withdrawal occurred in 31.9% of cases. Family satisfaction was generally positive.
Conclusions
WLST management in Eastern French ICUs is partially compliant with the Claeys–Leonetti law. Improved law application and public awareness could enhance end-of-life care management in France.
To explore hospital healthcare professionals’ (HCPs) knowledge, attitudes, and experiences on advance care planning (ACP), comparing different professions and care specialties, in a country where ACP is formally regulated.
Methods
An online survey involving HCPs from different care specialties involved in ACP working in Italian hospitals. Different tests were used for comparisons among HCPs.
Results
We included responses from 724 HCPs (259 physicians, 86 residents, 339 nurses, 40 physiotherapists). Despite only 29.7% of participants having received education on ACP, the majority (75.5%) had heard of ACP and were aware of its key elements. The main misconceptions concerned legal aspects, while uncertainty regarding ACP practical implementation and correct timing were among the main reported barriers. Virtually all participants favored ACP, and 81.1% considered ACP part of their duty, but ACP is seldom offered to patients and is not always documented. Knowledge and attitudes toward ACP were similar across professional roles, while ACP education and discussion varied across specializations, with the highest levels reported by Palliative Care HCPs. In most specialties, a substantial overlap can be noted between levels of ACP education and ACP discussion among all HCPs, while higher levels of discussion were generally observed among physicians, though the magnitude of the gap between education and discussion levels differed across care specialties.
Significance of results
Despite ad hoc regulation and HCPs’ favorable attitudes, the legal aspects of ACP remain poorly understood and ACP implementation in hospitals is still low. This study supports the need for clear procedures and for inclusion of ACP education and training in the core curricula of all HCPs, suggesting the need for studies integrating social sciences to explore specialty-specific barriers and facilitators to ACP. Due to their unique level of engagement in the process, palliative care HCPs may play a pivotal role in implementing hospital-based ACP.
Assessing the multidimensional nature of suffering in palliative care is challenging. The Suffering Pictogram (SP) is a visual instrument developed to facilitate the communication and measurement of this experience in clinical practice.
Objectives
To translate, cross-culturally adapt, and validate the SP into Brazilian Portuguese (SP-BR) for cancer patients.
Methods
A sample of 222 cancer patients completed the SP-BR and the FACIT-Sp-12 scale. Psychometric properties were assessed using exploratory factor analysis (EFA), internal consistency (Cronbach’s alpha), and convergent validity (Pearson’s correlations).
Results
EFA confirmed a unidimensional structure (loadings 0.40–0.73; variance explained 34.42%). Internal consistency was robust (α = 0.80). The SP-BR showed a moderate correlation with the FACIT-Sp-12 (r = −0.50, p ≤ 0.001).
Conclusion
The SP-BR is a validated, unidimensional Brazilian Portuguese instrument suitable for holistic suffering assessment in clinical settings.
Significance of results
The SP-BR is a brief tool for holistic suffering assessment, making it suitable for efficient screening in clinical and research settings, including those with limited resources.
Carers of people living with breathlessness face common challenges due to the chronic, distressing and unpredictable nature of the symptom. These include unmet information and support needs resulting in worsened health and psychosocial outcomes. This review aimed to (1) identify the relative volume of studies on supportive interventions for carers of people living with breathlessness due to different respiratory diseases, (2) characterize the nature of the interventions, and (3) explore their reported effectiveness on outcomes identified by carers as being important.
Methods
Medline and CINAHL were searched for studies reporting interventions targeting unpaid adult carers of people with breathlessness, lung cancer, chronic obstructive pulmonary disease (COPD), Interstitial Lung Diseases (ILD) published 2000-2025. Intervention characteristics and reported outcomes were extracted and compared across diagnoses and intervention categories. Our findings were shaped by consultation with unpaid carers in a series of patient and public involvement workshops.
Results
From 72 included interventions, three approaches were identified: Education, therapeutic support, and interventions for patient management. Interventions for lung cancer carers most frequently offered therapeutic support to the carer, while those for COPD carers most frequently focused on managing the patient. COPD and ILD carers have been underserved by research. We found few therapeutic support interventions for COPD carers. Reporting of carer demographics was poor, including among RCTs.
Significance of results
There was a dominance of research focusing on carers of people with lung cancer (56% of participants). In PPI consultations, carers identified stigma and poor communication with health providers as factors contributing to the disparity between lung cancer and other respiratory diseases. More research is needed to compare the efficacy of different intervention strategies to improve outcomes that matter most to carers. To improve equity, researchers must consistently report carer demographics and prioritize developing interventions for carers underserved by research.
The aim of this review was to identify, review, and synthesize primary qualitative literature to answer the question “what are the roles and experiences of informal caregivers providing care to a person with non-malignant respiratory disease at end of life from the perspectives of the caregiver and recipient of care?”
Methods
This qualitative systematic review was undertaken using thematic synthesis. Electronic databases (British Nursing Database, Cumulative Index to Nursing and Allied Health Literature Plus, Medline, PsycInfo, ProQuest Sociology, Allied and Complementary Medicine Database [AMED]) covering nursing, medicine, and social sciences were systematically searched from inception to October 2024. Studies were included if they reported data on the experiences and roles of caregivers in non-malignant respiratory disease at end of life, from the perspective of the caregiver or the person with non-malignant respiratory disease. Twenty-two papers met the eligibility criteria and were included in the review. Quality assessment was undertaken using the JBI Critical Appraisal Checklist for Qualitative Research.
Results
Thematic synthesis of the data generated five analytical themes: Caregivers experience shifting identity and new roles; Adaptation is necessary to cope with loss and change; Caregivers need more information and coordinated care services; Emotional effects of caregiving; and Future uncertainty and facing death. The findings illustrated the complexity of the caregiving role and highlight unmet needs during the end of life stage.
Significance of results
This evidence synthesis highlights the significant contribution caregivers make in the lives and deaths of those with non-malignant respiratory disease. Challenges of caregiving in this context increase the stress of caregivers, including unpredictable disease progression and difficult symptoms such as breathlessness. There are persistent inequalities between malignant and non-malignant care pathways. Caregivers would welcome more recognition and information from healthcare professionals to support their role.
Randomized controlled trials (RCTs) of the Collaborative Care Model demonstrate strong evidence for effectively managing depression in a stepped-care approach across diverse patient populations. Despite alignment with the American Society of Clinical Oncology guidelines, which recommend a stepped-care approach for managing depression and anxiety in cancer patients, implementation of collaborative care in cancer centers remains limited and sparse real-world data exist. The Supportive Oncology Collaborative, a program integrating behavioral health and palliative care, was developed at an NCI-designated academic cancer center. This study aims to evaluate depression outcomes within this collaborative care program.
Methods
A retrospective analysis was conducted on patients with at least 2 Patient Health Questionnaire-9 (PHQ-9) scores recorded within a 12-month period between January 2022 and December 2023 at 1 regional campus. Depression response, defined as a 50% reduction in PHQ-9 scores, was assessed at 12 and 24 weeks. Response rates were compared to those reported in RCTs of collaborative care.
Results
Mean PHQ-9 scores were 17.3 at baseline (n = 47), 11.1 at 12 weeks (n = 43), and 10.1 at 24 weeks (n = 22). Depression response rates were 34.9% at 12 weeks (n = 43) and 54.5% at 24 weeks (n = 22).
Significance of results
We observed depression response rates comparable to those reported in RCTs of collaborative care in individuals with cancer. However, the high proportion of missing data highlights the difficulty of tracking outcomes in real-world clinical settings and the need for further evaluation and strategies to improve data completeness.