NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.
Assessment Tools for Palliative Care
Technical Brief, No. 30
Investigators: Rebecca Aslakson, MD, PhD, Sydney M Dy, MD, MS, Renee F Wilson, MS, Julie M Waldfogel, PharmD, Allen Zhang, BS, Sarina R Isenberg, MA, Alex Blair, MD, Joshua Sixon, BS, and Karen A Robinson, PhD.
Author Information and AffiliationsStructured Abstract
Objectives:
To (1) provide an overview of palliative care assessment tools designed to be completed by or with patients or caregivers, including which tools have been applied to clinical care, as quality indicators, or in evaluations of interventions, and (2) identify needs for future palliative care assessment tool development and evaluation.
Methods:
First, we engaged Key Informants representing both patient/caregiver and provider/researcher perspectives to help guide the project. We then sought systematic reviews of palliative care assessment tools and applications of tools through searches of PubMed, CINAHL, Cochrane, PsycINFO and PsycTESTS from January 1, 2007 to August 29, 2016. We conducted supplemental searches of information on palliative care tools, including comprehensive reviews published prior to our date limitation, Web sites, and a targeted search for primary articles to identify tools where no recent high-quality systematic review was identified. We organized tools by the eight domains (subdomains) from the National Consensus Project Clinical Practice Guidelines for Palliative Care: structure and process, physical, psychological and psychiatric, social (caregiver), spiritual and religious, cultural, care at the end of life (bereavement), ethical and legal; as well as a ninth domain for multidimensional tools (quality of life and patient experience).
Results:
We included 10 systematic reviews of palliative care assessment tools (7 addressing different domains and 3 addressing applications of tools). We identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included: no identified systematic review for the subdomain of pain and a paucity of tools to assess structure and process, cultural, ethical and legal domains, and patient-reported experience. Information on internal consistency, reliability, construct validity, and usability was available for many tools, but few studies evaluated responsiveness (sensitivity to change). Only six studies evaluated the use of assessment tools in clinical practice, and we identified only one quality indicator with a specified assessment tool. Twenty-three different palliative care assessment tools were used in 43 intervention studies.
Conclusions:
We identified more than 150 assessment tools addressing most domains of palliative care, but few tools addressed the spiritual, structure and process, ethical and legal, or cultural domains, or the patient-reported experience subdomain. While some data on the psychometric properties of tools exist, the responsiveness of different tools to change has largely not been evaluated. Future research should focus on: (1) developing or testing tools in palliative care populations for domains with few or no tools, (2) evaluating responsiveness of tools for all domains, and (3) further studying the use of palliative care tools in clinical care and as quality indicators.
Contents
- Preface
- Acknowledgments
- Key Informants
- Peer Reviewers
- Introduction
- Methods
- Results
- Discussion (Guiding Question 4)
- References
- Appendix A. Glossary
- Appendix B. List of Acronyms
- Appendix C. Key Informant Questions
- Appendix D. Detailed Search Strategy
- Appendix E. ROBIS Assessment
- Appendix F. Systematic Review and Supplemental Search Flow
- Appendix G. Inclusion Criteria for the Systematic Review
- Appendix H. Results of the Literature Search
- Appendix I. Palliative Care Tools Master List
- Appendix J. Evidence Tables
Suggested citation:
Aslakson R, Dy SM, Wilson RF, Waldfogel JM, Zhang A, Isenberg SR, Blair A, Sixon J, Robinson KA. Assessment Tools for Palliative Care. Technical Brief No. 30 (Prepared by Johns Hopkins University under Contract No. 290-2015-00006-I.) AHRQ Publication No. 14-17-EHC007-EF. Rockville, MD: Agency for Healthcare Research and Quality; May 2017. www.effectivehealthcare.ahrq.gov/reports/final.cfm. doi: https://doi.org/10.23970/AHRQEPCTB30.
This report is based on research conducted by the Johns Hopkins University Evidence-based Practice Center (EPC) under contract to the Agency for Healthcare Research and Quality (AHRQ), Rockville, MD (Contract No. 290-2015-00006-I). The findings and conclusions in this document are those of the authors, who are responsible for its contents; the findings and conclusions do not necessarily represent the views of AHRQ. Therefore, no statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services.
None of the investigators have any affiliations or financial involvement that conflicts with the material presented in this report.
The information in this report is intended to help health care decisionmakers—patients and clinicians, health system leaders, and policymakers, among others—make well-informed decisions and thereby improve the quality of health care services. This report is not intended to be a substitute for the application of clinical judgment. Anyone who makes decisions concerning the provision of clinical care should consider this report in the same way as any medical reference and in conjunction with all other pertinent information, i.e., in the context of available resources and circumstances presented by individual patients.
AHRQ or U.S. Department of Health and Human Services endorsement of any derivative products that may be developed from this report, such as clinical practice guidelines, other quality enhancement tools, or reimbursement or coverage policies, may not be stated or implied.
- 1
5600 Fishers Lane, Rockville, MD 20857; www
.ahrq.gov
- NLM CatalogRelated NLM Catalog Entries
- Review Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief.[J Pain Symptom Manage. 2017]Review Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief.Aslakson RA, Dy SM, Wilson RF, Waldfogel J, Zhang A, Isenberg SR, Blair A, Sixon J, Lorenz KA, Robinson KA. J Pain Symptom Manage. 2017 Dec; 54(6):961-972.e16. Epub 2017 Aug 15.
- A Systematic Review in Support of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Fourth Edition.[J Pain Symptom Manage. 2018]A Systematic Review in Support of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Fourth Edition.Ahluwalia SC, Chen C, Raaen L, Motala A, Walling AM, Chamberlin M, O'Hanlon C, Larkin J, Lorenz K, Akinniranye O, et al. J Pain Symptom Manage. 2018 Dec; 56(6):831-870. Epub 2018 Oct 31.
- Review A psychometric evaluation of measures of spirituality validated in culturally diverse palliative care populations.[J Pain Symptom Manage. 2011]Review A psychometric evaluation of measures of spirituality validated in culturally diverse palliative care populations.Selman L, Siegert R, Harding R, Gysels M, Speck P, Higginson IJ. J Pain Symptom Manage. 2011 Oct; 42(4):604-22. Epub 2011 Jun 2.
- Review Patient-reported outcome measures evaluating postpartum maternal health and well-being: a systematic review and evaluation of measurement properties.[Am J Obstet Gynecol MFM. 2022]Review Patient-reported outcome measures evaluating postpartum maternal health and well-being: a systematic review and evaluation of measurement properties.O'Byrne LJ, Bodunde EO, Maher GM, Khashan AS, Greene RM, Browne JP, McCarthy FP. Am J Obstet Gynecol MFM. 2022 Sep 7; 4(6):100743. Epub 2022 Sep 7.
- Review Refinement of the HCUP Quality Indicators[ 2001]Review Refinement of the HCUP Quality IndicatorsDavies SM, Geppert J, McClellan M, McDonald KM, Romano PS, Shojania KG. 2001 May
- Assessment Tools for Palliative CareAssessment Tools for Palliative Care
Your browsing activity is empty.
Activity recording is turned off.
See more...