COSMIN database

Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use

Coombes, L. H., Wiseman, T., Lucas, G., Sangha, A., and Murtagh, F. E.
BACKGROUND: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care.

AIM: To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties.

DESIGN: A systematic literature review and analysis of psychometric properties.

DATA SOURCES: PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed.

RESULTS: From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly.

CONCLUSION: There is currently no 'ideal' outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field.
Palliat Med
1477-030X (Electronic); 0269-2163 (Linking)
Publication year:
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Role functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Self-rated health
Overall quality of life:
Overall quality of life
Children (0-18)
Certain conditions originating in the perinatal period and related symptoms
Congenital malformations, deformations and chromosomal abnormalities and related symptoms
Diseases of and symptoms related to the circulatory system
Diseases of and symptoms related to the nervous system
Neoplasms and related symptoms
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
6 - Clinical rating scales
CHQ-PF50 - Child Health Questionnaire – Parent Form 50
ConQOL - Quality of Life for Children with Congenital Cardiac Disease
CP-QOL - Cerebral Palsy Quality of Life
CP-QOL Teen - Cerebral Palsy Quality of Life Teenagers
DISABKIDS Smileys-6 - DISABKIDS Smiley Measure
GEOS - Glasgow Epilepsy Outcome Scale (versions: GEOSYP - GEOS for Young Person; GEOS-90; GEOS-35; GEOS-C; GEOS-Client version)
KIDSCREEN - 52 items - Health Related Quality of Life Questionnaire for Children and Young People and their Parents-52 items
MSAS 10-18 - Memorial Symptom Assessment Scale 10-18
MSAS 7-12 - Memorial Symptom Assessment Scale 7-12
PCQL-32 - Pediatric Cancer Quality of Life Inventory
Pediatric Cardiac Quality of Life Inventory
PedsQL 3.0 Cancer Module - Pediatric Quality of Life Inventory Cancer Module
PedsQL 3.0 NMM -Pediatric Quality of Life Inventory 3.0 Neuromuscular Module
PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales (versions: PedsQL 4.0 Generic Short Form; PedsQL Generic Core Scales version 4.0 TODDLER; PedsQL Generic Core Scales version 4.0 YOUNG CHILD; PedsQL Generic Core Scales version 4.0 CHILD; PedsQL Generic Core Scales version 4.0 TEENAGER)
PedsQL-Brain Tumor Module - Pediatric Quality of Life Inventory-Brain Tumor Module
PedsQL-Cardiac - Pediatric Quality of Life Inventory Cardiac Module
PedsQL-CP - Pediatric Quality of Life Inventory-Cerebral Palsy module
POQOLS - Pediatric Oncology Quality of Life Scale
QOL Childhood Epilepsy Questionnaire
RMH-PO-QOL - Royal Marsden Hospital Paediatric Oncology Quality of Life Questionnaire