Palliative & Supportive Care最新文献

Objectives: 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.

Objectives: 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.

Objectives: 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.

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.

Objectives: 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.