• J Pain Symptom Manage · Jan 2022

    Review

    Palliative Care Intervention Trials for Adults Living with Progressive Central Nervous System Diseases and Their Caregivers: A Systematic Review.

    • HeatherE Leeper, Diane Cooper, and TerriS Armstrong.
    • Neuro-Oncology Branch, National Cancer Institute, National Institutes of Health, Bethesda, Maryland; Office of Research Services, Division of Library Services, National Institutes of Health, Bethesda, Maryland. Electronic address: heather.leeper@nih.gov.
    • J Pain Symptom Manage. 2022 Jan 1; 63 (1): e88e110e88-e110.

    ContextInterest in implementing palliative care for adults living with progressive central nervous system diseases (PCNSD) and their caregivers is increasing.ObjectivesTo 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.MethodsA 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.ResultsFive 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.ConclusionSparse, 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.Published by Elsevier Inc.

      Pubmed     Free full text   Copy Citation     Plaintext  

      Add institutional full text...

    Notes

     
    Knowledge, pearl, summary or comment to share?
    300 characters remaining
    help        
    You can also include formatting, links, images and footnotes in your notes
    • Simple formatting can be added to notes, such as *italics*, _underline_ or **bold**.
    • Superscript can be denoted by <sup>text</sup> and subscript <sub>text</sub>.
    • Numbered or bulleted lists can be created using either numbered lines 1. 2. 3., hyphens - or asterisks *.
    • Links can be included with: [my link to pubmed](http://pubmed.com)
    • Images can be included with: ![alt text](https://bestmedicaljournal.com/study_graph.jpg "Image Title Text")
    • For footnotes use [^1](This is a footnote.) inline.
    • Or use an inline reference [^1] to refer to a longer footnote elseweher in the document [^1]: This is a long footnote..

    hide…