[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