---
title: "Patient, Family, and Caregiver Engagement in Palliative Care Quality Indicator Development"
id: "pubmed-42701333"
canonical_url: "https://medichelpline.com/clinical-feed/pubmed-42701333"
content_type: "clinical_feed_article"
specialty: "Critical Care"
source_name: "PubMed / NCBI"
source_url: "https://pubmed.ncbi.nlm.nih.gov/42701333/"
doi: "10.1177/08258597261466512"
published_at: "2026-09-06T00:00:00.000Z"
evidence_level: "Journal Article"
license: "CC-BY-NC-4.0 / Informational Use"
---
# Patient, Family, and Caregiver Engagement in Palliative Care Quality Indicator Development
## Provenance & Clinical Metadata
- **Canonical URL:** https://medichelpline.com/clinical-feed/pubmed-42701333
- **Specialty:** [Critical Care](https://medichelpline.com/clinical-feed/critical-care.md)
- **Primary Source:** PubMed / NCBI
- **Source URL:** [Original Journal Publication](https://pubmed.ncbi.nlm.nih.gov/42701333/)
- **DOI:** [10.1177/08258597261466512](https://doi.org/10.1177%2F08258597261466512)
- **Published At:** 2026-09-06T00:00:00.000Z
- **Evidence Rating:** Journal Article
## Executive GIST (TL;DR)
- This scoping review assessed how **patients**, **family members**, and **caregivers** are incorporated into the development of **palliative care quality indicators (QIs)**. - The review followed Arksey and O’Malley’s framework as updated by Levac et al., searching MEDLINE, EMBASE, CINAHL, PsycInfo, and Google for grey literature for publications from 2010–2025. - Thirty-one peer-reviewed studies and one grey literature source met inclusion criteria. QI sets covered diverse populations and settings, including **cancer care**, disease-specific groups, ambulatory and home palliative care, intensive care, hospice, and general palliative care populations. - Most studies (25/31, 80.6%) used multi-method, consensus-based approaches to develop QIs, commonly combining literature reviews with Delphi or RAND/UCLA consensus processes. - Only 11 of 31 (35.5%) peer-reviewed studies involved patients, family members, and/or caregivers in QI development; involvement typically occurred as Delphi panellists or via early qualitative interviews and focus groups. - Twenty of 31 (64.5%) studies reported no engagement of patients, family, or caregivers. The single grey literature source reported more extensive engagement through advisory committee participation and public consultation. - The authors conclude that patients, family, and caregivers are infrequently and inconsistently involved, raising concern that existing QIs may reflect clinician and system priorities more than the lived experiences of care recipients and their supports. - The review underscores a need for more systematic and active engagement of patients, families, and caregivers in future development of **palliative care quality indicators** to ensure alignment with priorities, preferences, and needs.
## Clinical Analysis & Structured Key Points
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Online ahead of print. # Patient, Family, and Caregiver Engagement in the Development of Palliative Care Quality Indicators: A Scoping Review [Kruti Patel](https://pubmed.ncbi.nlm.nih.gov/?term=Patel+K&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada.")[ 2 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-2 "Co-first authors."), [Lauren Konikoff](https://pubmed.ncbi.nlm.nih.gov/?term=Konikoff+L&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada.")[ 2 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-2 "Co-first authors."), [Deena Fremont](https://pubmed.ncbi.nlm.nih.gov/?term=Fremont+D&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada."), [Samuel Tiukuvaara](https://pubmed.ncbi.nlm.nih.gov/?term=Tiukuvaara+S&cauthor_id=42701333)[ 3 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-3 "School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada."), [James Downar](https://pubmed.ncbi.nlm.nih.gov/?term=Downar+J&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada.")[ 4 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-4 "Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.")[ 5 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-5 "Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada."), [Penelope Hedges](https://pubmed.ncbi.nlm.nih.gov/?term=Hedges+P&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada."), [Colleen Webber](https://pubmed.ncbi.nlm.nih.gov/?term=Webber+C&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#full-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada.") Affiliations Expand ### Affiliations * 1 Bruyère Health Research Institute, Ottawa, ON, Canada. * 2 Co-first authors. * 3 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada. * 4 Ottawa Hospital Research Institute, Ottawa, Ontario, Canada. * 5 Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada. * PMID: **42701333** * DOI: [ 10.1177/08258597261466512 ](https://doi.org/10.1177/08258597261466512) Item in Clipboard Review # Patient, Family, and Caregiver Engagement in the Development of Palliative Care Quality Indicators: A Scoping Review Kruti Patel et al. J Palliat Care. 2026. Show details Display options Display options Format Abstract PubMed PMID J Palliat Care Actions * [ Search in PubMed ](https://pubmed.ncbi.nlm.nih.gov/?term=%22J+Palliat+Care%22%5Bjour%5D&sort=date&sort_order=desc) * [ Search in NLM Catalog ](https://www.ncbi.nlm.nih.gov/nlmcatalog?term=%22J+Palliat+Care%22%5BTitle+Abbreviation%5D) * [ Add to Search ](https://pubmed.ncbi.nlm.nih.gov/42701333/) . 2026 Sep 6:8258597261466512. doi: 10.1177/08258597261466512. Online ahead of print. ### Authors [Kruti Patel](https://pubmed.ncbi.nlm.nih.gov/?term=Patel+K&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada.")[ 2 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-2 "Co-first authors."), [Lauren Konikoff](https://pubmed.ncbi.nlm.nih.gov/?term=Konikoff+L&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada.")[ 2 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-2 "Co-first authors."), [Deena Fremont](https://pubmed.ncbi.nlm.nih.gov/?term=Fremont+D&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada."), [Samuel Tiukuvaara](https://pubmed.ncbi.nlm.nih.gov/?term=Tiukuvaara+S&cauthor_id=42701333)[ 3 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-3 "School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada."), [James Downar](https://pubmed.ncbi.nlm.nih.gov/?term=Downar+J&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada.")[ 4 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-4 "Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.")[ 5 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-5 "Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada."), [Penelope Hedges](https://pubmed.ncbi.nlm.nih.gov/?term=Hedges+P&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada."), [Colleen Webber](https://pubmed.ncbi.nlm.nih.gov/?term=Webber+C&cauthor_id=42701333)[ 1 ](https://pubmed.ncbi.nlm.nih.gov/42701333/#short-view-affiliation-1 "Bruyère Health Research Institute, Ottawa, ON, Canada.") ### Affiliations * 1 Bruyère Health Research Institute, Ottawa, ON, Canada. * 2 Co-first authors. * 3 School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada. * 4 Ottawa Hospital Research Institute, Ottawa, Ontario, Canada. * 5 Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada. * PMID: **42701333** * DOI: [ 10.1177/08258597261466512 ](https://doi.org/10.1177/08258597261466512) Item in Clipboard Cite Display options Display options Format Abstract PubMed PMID ## Abstract ObjectiveQuality indicators (QIs) are vital to appraising and improving palliative care and should reflect the needs of patients, family members, and caregivers. This scoping review describes how patients', family members' and/or caregivers' priorities, preferences, and needs are incorporated into the development of palliative care QIs.MethodsWe conducted a scoping review in accordance with the framework developed by Arksey and O'Malley and updated by Levac et al We searched MEDLINE, EMBASE, CINAHL, and PsycInfo to identify peer-reviewed literature and Google to identify grey literature. Publications from 2010 to 2025 were screened for inclusion, with relevant information from eligible studies extracted and synthesized into categories that aligned with the objectives of the review and which were developed during data synthesis.ResultsThirty-one peer-reviewed studies met inclusion criteria, along with 1 grey literature source. QI sets targeted diverse populations and settings, including cancer care (n = 6, 19.3%), disease-specific groups (n = 5, 16.1%), ambulatory and home palliative care (n = 3, 9.7%), intensive care (n = 2, 6.4%), and hospice (n = 2, 6.4%), as well as general palliative care populations (n = 31, 25.5%). Most studies (25/31, 80.6%) used multi-method, consensus-based approaches to develop QIs, typically combining literature reviews with Delphi or RAND/UCLA processes. Eleven of 31 (35.5%) studies involved patients, family members, and/or caregivers in QI development, most often as Delphi panellists in the development stage or through early-stage qualitative interviews and focus groups; 20 of the 31 (64.5%) studies reporting no engagement. The grey literature source included more extensive engagement through advisory committee participation and public consultation.ConclusionsPatients, family, and caregivers are infrequently and inconsistently involved in the development of palliative care QIs. Existing QIs may reflect clinician and system priorities more than the lived experiences of those receiving care, underscoring the need for more systematic and active engagement in future QI development. **Keywords:** Palliative care; caregivers; healthcare; healthcare quality; patient-reported outcome measures; patients; quality indicators; review. 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