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Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review


Widger, Kimberley; Medeiros, Christina; Trenholm, Madeline; Zuniga-Villanueva, Gregorio; Streuli, Jürg C (2019). Indicators Used to Assess the Impact of Specialized Pediatric Palliative Care: A Scoping Review. Journal of Palliative Medicine, 22(2):199-219.

Abstract

BACKGROUND Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system. OBJECTIVE To identify and compare definitions of indicators used to assess the impact of specialized pediatric palliative care programs. DESIGN The scoping review protocol was prospectively registered on PROSPERO 2017 (CRD42017074090). DATE SOURCES MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Eligible studies included randomized controlled trials, experimental studies, or observational studies that compared specialized programs with usual care. Studies were excluded if most care recipients were older than 19 years or the article was not available in English, French, German, or Spanish. RESULTS Forty-six studies were included; one was a randomized controlled trial. We identified 82 different indicators grouped into 14 domains. The most common indicators included the following: location of death, length of stay in hospital, and number of hospital admissions. Only 22 indicators were defined identically in at least 2 studies. Only one study included children's perspectives in assessing indicators. CONCLUSIONS Many indicators were used to assess program outcomes with little definition consensus across studies. Development of a set of agreed-upon indicators to assess program impact concurrent with family and patient input is essential to advance research and practice in pediatric palliative care.

Abstract

BACKGROUND Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system. OBJECTIVE To identify and compare definitions of indicators used to assess the impact of specialized pediatric palliative care programs. DESIGN The scoping review protocol was prospectively registered on PROSPERO 2017 (CRD42017074090). DATE SOURCES MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Eligible studies included randomized controlled trials, experimental studies, or observational studies that compared specialized programs with usual care. Studies were excluded if most care recipients were older than 19 years or the article was not available in English, French, German, or Spanish. RESULTS Forty-six studies were included; one was a randomized controlled trial. We identified 82 different indicators grouped into 14 domains. The most common indicators included the following: location of death, length of stay in hospital, and number of hospital admissions. Only 22 indicators were defined identically in at least 2 studies. Only one study included children's perspectives in assessing indicators. CONCLUSIONS Many indicators were used to assess program outcomes with little definition consensus across studies. Development of a set of agreed-upon indicators to assess program impact concurrent with family and patient input is essential to advance research and practice in pediatric palliative care.

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Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
04 Faculty of Medicine > Institute of Biomedical Ethics and History of Medicine
Dewey Decimal Classification:610 Medicine & health
Scopus Subject Areas:Health Sciences > General Nursing
Health Sciences > Anesthesiology and Pain Medicine
Uncontrolled Keywords:Anesthesiology and Pain Medicine, General Nursing, General Medicine
Language:English
Date:1 February 2019
Deposited On:29 Jan 2019 13:12
Last Modified:29 Jul 2020 09:35
Publisher:Mary Ann Liebert
ISSN:1557-7740
OA Status:Closed
Free access at:Publisher DOI. An embargo period may apply.
Publisher DOI:https://doi.org/10.1089/jpm.2018.0420
PubMed ID:30526276

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