Article (Scientific journals)
Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review
Friedel, Marie; Aujoulat, Isabelle; Dubois, Anne-Catherine et al.
2019In Pediatrics, 143 (1), p. 1-22
Peer Reviewed verified by ORBi
 

Files


Full Text
peds_20182379.pdf
Publisher postprint (1.41 MB)
Download

All documents in ORBilu are protected by a user license.

Send to



Details



Keywords :
Children's Palliative Outcome Scale; Pediatrics; Quality of life; Systematic review; PRISMA
Abstract :
[en] CONTEXT: Pediatric palliative care (PPC) is intended to promote children’s quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging. OBJECTIVE: To review the instruments used to assess the impact of PPC interventions. DATA SOURCES: Five databases (Embase, Scopus, The Cochrane Library, PsychInfo, Medline) were searched. STUDY SELECTION: Inclusion criteria were as follows: definition of PPC used; patients aged 0 to 18 years; diseases listed in the directory of life-limiting diseases; results based on empirical data; and combined descriptions of a PPC intervention, its outcomes, and a measurement instrument. DATA EXTRACTION: Full-text articles were assessed and data were extracted by 2 independent researchers, and each discrepancy was resolved through consensus. The quality of the studies was assessed by using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers From a Variety of Fields checklist. RESULTS: Nineteen of 2150 articles met the eligibility criteria. Researchers in 15 used quantitative methods, and 9 were of moderate quality. Multidimensional outcomes included health-related quality of life, spiritual well-being, satisfaction with care and/or communication, perceived social support, and family involvement in treatment or place-of-care preferences. PPC interventions ranged from home-based to hospital and respite care. Only 15 instruments (of 23 reported) revealed some psychometric properties, and only 5 included patient-reported (child) outcome measures. LIMITATIONS: We had no access to the developmental process of the instruments used to present the underlying concepts that were underpinning the constructs. CONCLUSIONS: Data on the psychometric properties of instruments used to assess the impact of PPC interventions were scarce. Children are not systematically involved in reporting outcomes.
Disciplines :
Pediatrics
Author, co-author :
Friedel, Marie  ;  University of Luxembourg > Faculty of Science, Technology and Medicine (FSTM) > Department of Life Sciences and Medicine (DLSM)
Aujoulat, Isabelle;  Université Catholique de Louvain - UCL
Dubois, Anne-Catherine;  Université Catholique de Louvain - UCL
Degryse, Jean-Marie;  Katholieke Universiteit Leuven - KUL
External co-authors :
yes
Language :
English
Title :
Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review
Publication date :
January 2019
Journal title :
Pediatrics
ISSN :
1098-4275
Publisher :
American Academy of Pediatrics, Elk Grove Village, United States - Illinois
Volume :
143
Issue :
1
Pages :
1-22
Peer reviewed :
Peer Reviewed verified by ORBi
Focus Area :
Sustainable Development
Available on ORBilu :
since 11 March 2023

Statistics


Number of views
96 (5 by Unilu)
Number of downloads
181 (2 by Unilu)

OpenCitations
 
28
WoS citations
 
34

Bibliography


Similar publications



Contact ORBilu