Rebecca A Aslakson1, Sydney M Dy2, Renee F Wilson2, Julie Waldfogel3, Allen Zhang2, Sarina R Isenberg4, Alex Blair5, Joshua Sixon6, Karl A Lorenz7, Karen A Robinson8. 1. Department of Anesthesiology and Critical Care Medicine, The Johns Hopkins School of Medicine, Baltimore, Maryland, USA; Department of Oncology, Palliative Care Program, Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, Maryland, USA. Electronic address: raslaks1@jhmi.edu. 2. Department of Health Policy and Management, Johns Hopkins School of Public Health, Baltimore, Maryland, USA. 3. Department of Pharmacy, The Johns Hopkins Hospital, Baltimore, Maryland, USA. 4. Department of Health, Behavior and Society, The Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA. 5. Department of Surgery, The Johns Hopkins School of Medicine, Baltimore, Maryland, USA. 6. Herbert Wertheim College of Medicine, Florida International University, Miami, Florida, USA. 7. VA Palo Alto Health Care System, Palo Alto, California; Stanford School of Medicine, Department of Medicine, Palo Alto, California. 8. Department of Health Policy and Management, Johns Hopkins School of Public Health, Baltimore, Maryland, USA; Department of Medicine, The Johns Hopkins School of Medicine, Baltimore, Maryland, USA; Department of Epidemiology, The Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
Abstract
CONTEXT: Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. OBJECTIVES: The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation. METHODS: We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain. RESULTS: We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. CONCLUSION: Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.
CONTEXT: Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. OBJECTIVES: The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation. METHODS: We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain. RESULTS: We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. CONCLUSION: Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.
Authors: Karla T Washington; Jacquelyn J Benson; Daphne E Chakurian; Lori L Popejoy; George Demiris; Abigail J Rolbiecki; Debra Parker Oliver Journal: J Hosp Palliat Nurs Date: 2021-06-01 Impact factor: 2.131
Authors: Katharina Fetz; Hendrik Vogt; Thomas Ostermann; Andrea Schmitz; Christian Schulz-Quach Journal: BMC Palliat Care Date: 2018-07-07 Impact factor: 3.234