Department of Medicine, Division of Palliative Care (C.L.W., J.R., R.M., S.H.B.), University of Ottawa, 451 Smyth Road, Ottawa, Ontario K1H 8M5, Canada; The Ottawa Hospital (C.L.W., J.R., R.M., A.B., S.M., B.Z., J.Z.), 501 Smyth Rd, Ottawa, Ontario K1H 8L6, Canada; Bruyère Continuing Care (C.L.W., J.R., R.M., S.H.B.), 60 Cambridge St. N., Ottawa, Ontario K1R 7A5, Canada; Bruyère Research Institute (C.L.W., J.R., S.H.B.), 43 Bruyère St., Ottawa, Ontario K1N 5C8, Canada; Ottawa Hospital Research Institute (C.L.W., I.C.S., J.R., A.B., M.D., D.N., S.H.B., J.Z.), 1053 Carling Ave, Ottawa, Ontario K1Y 4E9, Canada.
Ottawa Hospital Research Institute (C.L.W., I.C.S., J.R., A.B., M.D., D.N., S.H.B., J.Z.), 1053 Carling Ave, Ottawa, Ontario K1Y 4E9, Canada.
J Pain Symptom Manage. 2024 Jul;68(1):43-52.e2. doi: 10.1016/j.jpainsymman.2024.03.024. Epub 2024 Apr 2.
Palliative care (PC) benefits patients with amyotrophic lateral sclerosis (ALS), however the needs of patients and caregivers and the optimal timing of PC discussions remains unclear. This study reports the analysis of PC consult notes from a larger feasibility trial. The specific aims of this analysis were to i) identify the PC needs of patients with ALS via qualitative analysis and ii) identify characteristics of patients and caregivers that could predict specific PC needs.
This study was nested within a nonrandomized, prospective study of patients with ALS (and their caregivers) being treated at a multidisciplinary ALS clinic. Exclusion criteria of the main study were age <18 years, inability to complete questionnaires, and prior receipt of PC. All patients were offered a PC consultation (PCC); those who accepted were included in this nested study. Consultation notes were reviewed and thematic and content analyses were conducted. The occurrence of themes across patient and caregiver contextual variables were examined.
Thirty-two PCCs were completed between October 2020 and April 2022. Six major themes were identified: PC roles (with subthemes encompassing the spectrum of specialist PC practice including symptom management and advance care planning), engagement with PC, patients' concerns for their caregivers, caregiver-specific concerns, finances, and COVID-19. An average of 12 topics were discussed per PCC (range = 3-22). Discussion of advance care planning, care coordination, and symptom management was common, and these topics were not discussed more frequently in PCCs with patients with lower functional status, more bulbar symptoms, or lower quality of life. Time from diagnosis did not impact topics of discussion. Patients reporting more symptoms of depression more frequently required psychological support, particularly regarding loss of independence, employment, and leisure activities.
Patients with ALS and their caregivers have a wide range of PC needs. These needs vary irrespective of time from diagnosis, functional status, or quality of life, therefore PCC is recommended for all patients with ALS. PCC should be individualized based on patient and caregiver preferences.
The study was registered with ClinicalTrials.gov (NCT04257760; https://clinicaltrials.gov/ct2/show/NCT04257760) on February 6, 2020. The first enrollment occurred on October 20, 2020.
姑息治疗（PC）有益于肌萎缩侧索硬化症（ALS）患者，但患者及其照顾者的需求以及 PC 讨论的最佳时机仍不清楚。本研究报告了一项更大可行性试验中 PC 咨询记录的分析。本分析的具体目的是：i）通过定性分析确定 ALS 患者的 PC 需求；ii）确定可以预测特定 PC 需求的患者和照顾者特征。
本研究嵌套于对在多学科 ALS 诊所接受治疗的 ALS 患者（及其照顾者）进行的非随机、前瞻性研究中。主要研究的排除标准为年龄<18 岁、无法完成问卷以及先前接受过 PC。所有患者均提供 PC 咨询（PCC）；接受者被纳入这项嵌套研究。对咨询记录进行了审查，并进行了主题和内容分析。检查了主题在患者和照顾者背景变量中的出现情况。
2020 年 10 月至 2022 年 4 月期间完成了 32 次 PCC。确定了六个主要主题：PC 角色（包含涵盖专科 PC 实践范围的子主题，包括症状管理和预先护理计划）、参与 PC、患者对照顾者的担忧、照顾者特定的担忧、财务状况和 COVID-19。每次 PCC 平均讨论 12 个主题（范围=3-22）。经常讨论预先护理计划、护理协调和症状管理，而在功能状态较低、延髓症状较多或生活质量较低的 PCC 中，这些主题讨论得并不更频繁。从诊断到现在的时间并未影响讨论的主题。报告有更多抑郁症状的患者更频繁地需要心理支持，尤其是在失去独立性、就业和休闲活动方面。
ALS 患者及其照顾者有广泛的 PC 需求。这些需求因患者的诊断时间、功能状态或生活质量而异，因此建议对所有 ALS 患者进行 PCC。PCC 应根据患者和照顾者的偏好进行个性化设置。
该研究于 2020 年 2 月 6 日在 ClinicalTrials.gov 注册（NCT04257760；https://clinicaltrials.gov/ct2/show/NCT04257760）。首次入组于 2020 年 10 月 20 日进行。
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