Abstract
CONTEXT: Interest in implementing palliative care for adults living with progressive central nervous system diseases (PCNSD) and their caregivers is increasing. OBJECTIVES: To inform evidence-based practice and future research by critically evaluating randomized clinical trials (RCTs) investigating palliative care interventions (PCIs) for adults living with PCNSD and their caregivers using self-reported outcomes and the patient- and caregiver-reported outcome measures employed. METHODS: A systematic search using PRISMA methods of EMBASE, PubMed, Scopus, Web of Science databases using index and keyword methods for articles published from inception through February 28, 2021 was performed. RCTs investigating PCI as their primary aim using patient- and/or caregiver-reported outcomes to assess PCI effectiveness in adults living with PCNSD and their caregivers were included for qualitative synthesis. RESULTS: Five RCTs met criteria and used 21 unique outcome measures. Pooled patient diagnoses included multiple sclerosis, motor neuron disease and movement disorders, primarily Parkinson's Disease. All five RCTs assessed PCI effectiveness on patient symptom burden and caregiver burden, and three RCTs used patient QOL as a primary outcome. Overall risk of bias was low. Pooled positive findings were limited to very modest changes in patient QOL, specific physical symptoms and caregiver burden. Most outcome measures lacked clinimetric responsiveness to detect change whether caused by disease or an intervention to the patient or caregiver. CONCLUSION: Sparse, low-certainty evidence for PCI impact on patient QOL, symptom burden and caregiver burden indicate future research should consider refining study populations, interventions, outcomes assessed and outcome measures to detect any change due to PCI.