Journal of pain and symptom management最新文献

Introduction/aim: Distressing symptoms such as cough, fatigue and chronic breathlessness are highly prevalent among people with interstitial lung disease (ILD). Despite high symptom burden, treatment options are limited and access to palliative care is suboptimal. We aimed to explore the knowledge and beliefs of people with ILD and their carers regarding symptom management, and understand the barriers and facilitators to accessing supportive and palliative care.

Methods: Qualitative interviews with people with ILD and carers recruited from Australian public and private respiratory clinics were conducted. Transcripts were analysed thematically.

Results: Four themes emerged from 15 people with ILD and 2 carer interviews: (1) symptom burden and management; (2) beliefs and perceptions regarding opioids and supportive and palliative care; (3) informational needs; and (4) access to care and trust through continuity of care. Participants described managing frightening breathlessness, challenging symptoms and treatment side effects as overwhelming. Relentless functional decline and variable self-management adherence were reported. Opioids and palliative care were associated with end-of-life care. Participants indicated greater acceptance of supportive care if more reliable information and educational resources regarding disease and symptom management were available. Participants noted that healthcare access requires multimodal delivery, digital literacy, the establishment of trust, continuity of care and multidisciplinary collaboration.

Conclusion: People with ILD had high symptom burden but limited knowledge regarding symptom management and palliative care, with misperceptions influencing acceptance. Early integration of palliative care within multidisciplinary specialist ILD clinics, together with educational resources, is needed to facilitate holistic care.

Purpose: Video recording facilitates continuous monitoring of patients with agitated delirium, but its role in inpatient palliative care remains unexplored. This study examined the benefit of video monitoring for assessing persistent agitated delirium in an inpatient palliative supportive care unit (PSCU).

Methods: This was a prospective observational study as a part of secondary analysis of a multicenter, double-blind, randomized clinical trial examining the proportional sedation for PSCU patients with persistent agitated delirium (RECORD trial). The presence or absence of agitation (modified Richmond Agitation-Sedation Scale [RASS] score, ≥+1 vs. ≤0) was documented over 24 h using various methods (in-person vs. video), observer occupations (registered nurse [RN] vs. physician [MD]), and frequencies (intermittent [every 2 h] vs. continuous [every 5 min]).

Results: Fourteen patients underwent 227.2 h of video monitoring (median: 16.2 h/patient; IQR, 12.4-22.2 h), including 170 in-person intermittent RN, 109 video intermittent RN, 109 video intermittent MD, and 2,445 video continuous MD RASS assessments. Agreement (generalized estimating equations) was 75% between in-person and video intermittent RN RASS assessments, 95% between video intermittent RN and MD RASS assessments, and 73% between video intermittent and continuous MD RASS assessments. Video intermittent RN RASS assessment documented 17 (16%) agitation episodes, whereas in-person RN RASS assessment did not. Also, in-person RN RASS assessment documented 10 (9%) agitation episodes, whereas video intermittent RN RASS assessment did not. Video continuous MD RASS assessment identified 28% more agitation episodes than video intermittent MD RASS assessment and revealed three patterns of agitation (persistent, interval, and intermittent).

Conclusion: Our preliminary findings highlight the level of interrater agreement of video monitoring with in-person assessments and its potential advantage to provide higher resolution data and patterns of agitation.

Context: Preferred place of death (PPOD) reflects an essential component of patient-centered palliative care. Understanding preferences and their determinants is key to guiding health system planning and improving end-of-life care quality.

Objectives: To identify the preferred place of death among patients with serious chronic illnesses in Lebanon and determine factors influencing this preference.

Methods: A cross-sectional study was conducted at a tertiary medical center in Lebanon between November 2020 and January 2022. Adults with serious chronic illnesses were identified using the "surprise question" approach. A structured interview collected demographic, medical, social, and psychosocial data, including PPOD. Logistic regression was used to identify predictors of preferring home versus hospital death.

Results: Among 165 participants, 58.8% expressed a preference to die at home, while 41.2% preferred a hospital setting. Preference for home death was associated with higher social support, older age, and having family caregivers, whereas preference for hospital death was associated with higher disease burden and dependency on medical technology. Spiritual well-being and socioeconomic factors showed no independent association after adjustment.

Conclusion: Most Lebanese patients with serious illnesses wish to die at home, yet structural and medical barriers limit fulfillment of this preference. Integration of home-based palliative care services and financial coverage mechanisms are essential to align care with patient values and improve end-of-life outcomes.

Background: There is a lack of information in the literature about patients with amyotrophic lateral sclerosis (ALS) followed at home.

Aim: To characterize ALS patient demographics, longitudinal symptom trajectories, cognition, healthcare utilization, and advance care planning of an Italian home-based palliative care program cohort.

Methods: New patients with ALS who required home palliative care were recruited for a period of one year and followed up for six months. Demographics, Karnofsky, ALS subtype, date of diagnosis, awareness, as well as ECAS (Edinburgh Cognitive and Behavioural ALS Screen) were recorded, as well as the date of diagnosis and initiation of home palliative care were collected. The use of non-invasive ventilation (NIV), mechanical ventilation by tracheostomy, gastrostomy, nasogastric tube, parenteral nutrition, were recorded at admission and during home care assistance. The existence of advance directives and shared advance care planning (ACP) was also collected. The ALS Functional Rating Scale - Revised (ALS-FRS-R) and symptom burden was measured by Edmonton Symptom Assessment System (ESAS) were measured at two-month intervals for six months.

Results: Data from 34 consecutive patients with ALS admitted to palliative home care were analyzed over the period considered. While Karnofsky level significantly decreased, ECAS did not show significant changes. The need for vital supports, partcularly NIV, increased over time. Only one patient provided a ACP decision at admission, and none provided a living will. The involvement of a legal administrator facilitated the use of ACP significantly over the six months. Seven patients died at home during the first six months of home palliative care, and one patient was lost to follow-up, because they were transferred to another region. No patient was admitted to hospice in the first six months of home palliative care.

Conclusion: In patients with ALS admitted to home palliative care Karnofsky level, total ESAS and ALS-FRS-R score slowly but significantly decreased over six months. Only six patients died within this period. The use of NIV increased over time. No patient required hospital or hospice admission. ACP and living wills were minimal, although ACP rate increased during the study period. The program enabled patients to remain in their homes, reducing the need for hospital care.

Context: . The relationship between advance care planning (ACP) and religious beliefs is controversial in Western countries; a previous study in Japan has shown an association without, however, elucidating its mechanism.

Objectives: . To quantitatively investigate the association between ACP discussions and intrinsic religious motivations and to qualitatively analyze how motives influence discussions in Japan.

Methods: . An explanatory sequential mixed-methods study 2023-2025 in Japan. Responses were analyzed from 124 religious adults aged 51-84 years participating in Christian and Buddhist religious services in Tokyo, Ibaraki, and Fukushima. The outcome was measured by asking whether respondents had ever discussed ACP; intrinsic motivations were measured using the "Relationship with Transcendence" domain of the Scale of Motives for Faith. Intrinsic motivations were analyzed in relation to the occurrence of discussions using modified Poisson regression models with robust error variance adjusted for possible sociodemographic covariates. Qualitative analysis of 14 in-depth interviews applied constructivist grounded theory to identify how intrinsic motivations influence discussions.

Results: . 37 respondents (31%) discussed ACP. Respondents with intrinsic religious motivations had a significantly higher prevalence of having had discussions than those without (adjusted prevalence ratio: 2.18, 95% confidence interval: 1.07-4.44). This association was qualitatively explained by the dialectical process of prayer and shared end-of-life experiences within their faith communities and reflection on the meaning of life that engaged them in discussions.

Conclusion: . Intrinsic religious motivations facilitate Japanese Buddhists' and Christians' ACP discussions;​ knowing this may help health-care providers develop end-of-life decision-making strategies in palliative care settings.

Context: Following a perinatal death, parents experience physical, psychological, social, and spiritual hardships, and may benefit from community-based support.

Objective: Study a new bereavement referral program (BRP) that connects parents to community-based resources after perinatal death and describe families' utilization of bereavement resources by exploring the BRP use, feasibility of obtaining parent feedback about the BRP, parent grief and practical resource use and outcomes after perinatal death, and parent feedback about the BRP.

Methods: A single site, mixed-methods, prospective study of a BRP involving an academic women's hospital, a community-based organization, and an academic children's hospital. We identified eligible parents using electronic health records and tracked BRP use. We surveyed and interviewed eligible parents (mother and partner, if the partner was identified by the mother) 6 months after the perinatal death.

Results: Of 121 eligible mothers, 19 (15.7%) used the BRP. Thirty-five mothers (28.9%, 35/121) completed a survey, 8 of whom (23%, 8/35) also completed an interview. All 3 partners identified (100%, 3/3) completed a survey, and 2 (67%, 2/3) also completed an interview. 87% (33/38) of people surveyed used community-based bereavement resources and 26% (10/38) used community-based practical resources. Interview themes related to resources used, the value of used resources, barriers to resource use, BRP feedback, and guidance for supporting grieving parents.

Conclusions: While implementation and study of the BRP was challenging, our results show parent needs that could potentially be addressed by the BRP. Future research should quantitatively evaluate the BRP impact on self-efficacy and parent outcomes.

Context: In a multi-site randomized clinical trial, a nurse and social worker telecare team intervention (ADAPT) improved quality of life, disease-specific health status, depression, and anxiety among high-risk patients with chronic obstructive pulmonary disease (COPD), heart failure (HF), or interstitial lung disease (ILD).

Objectives: Examine the content, processes, and cost of delivering the ADAPT intervention.

Methods: Analysis of prospectively collected data from the ADAPT randomized clinical trial, including intervention session frequency/duration, team recommendations, and per-patient cost to deliver the intervention using time-driven activity-based costing.

Results: Mean length of the intervention was 115.1 (SD 33.4) days. Participants (n=153) averaged 10.0 (SD 3.3) sessions with the nurse and 9.5 (SD 3.4) sessions with the social worker; 80.4% completed all required social work sessions and all required nurse sessions. The team discussed each participant an average of 3.7 (SD 1.8) times and made 7 (SD 3.8) recommendations per participant. Common recommendations included referrals/consults (79.7%, e.g., mental health, sleep, PT/OT, other specialists), medication additions (58.1%) or changes (31.8%), and tests (33.1%) The mean cost to implement and deliver the intervention per patient was $1,139.68 (SD $368.15).

Conclusion: In a successful nurse and social work telecare team intervention, there was high participation in nurse and social worker sessions, individualized medical and behavioral interventions, and connecting of participants to existing medical and community resources. The intervention produced clinically meaningful changes in multiple quality of life outcomes for a relatively low cost.

For patients with serious illnesses, goals of care conversations improve quality of life and patient and family satisfaction and may reduce healthcare costs. However, these conversations often happen late in a serious illness or not at all. To better integrate goals of care into routine clinical practice, health systems across the country have implemented initiatives to increase and document these conversations. In this paper, we describe the landscape of goals of care initiatives across eight large health systems in the United States and identify core elements for effective programs: 1) Defining the purpose of the initiative; 2) Identifying the target patient population using patient diagnoses, artificial intelligence algorithms, or length of stay; 3) Engaging key stakeholders, including patient, caregiver, frontline provider, and leadership; 4) Encouraging the conversation through clinician and patient education and electronic health record prompts; 5) Documenting conversations within the electronic health record; 6) Measuring data by building electronic health record and information technology infrastructure; and 7) Planning for sustainability and scalability through leadership and funding support. These core elements can help inform how health systems plan goals of care initiatives, build infrastructure, and garner support to successfully implement these initiatives.