COSMIN database

Health-related quality of life measurement in children and adolescents in Ibero-American countries, 2000 to 2010

Authors:
Rajmil, L., Roizen, M., Psy, A. U., Hidalgo-Rasmussen, C., Fernandez, G., Dapueto, J. J., and Working Group on, Hrqol in Children in Ibero-American Countries
Abstract:
OBJECTIVES: To analyze the characteristics of instruments designed to assess the health-related quality of life (HRQOL) in children, developed or adapted from 2000 to 2010 in Argentina, Chile, Mexico, Spain, and Uruguay.

METHODS: The protocol-led literature review included database searching (e.g., Medline, ISI Science Citation Index) and manual searching to retrieve studies focused on measures of HRQOL, health status, or well-being addressed to children and adolescents. Country-specific filters were applied to identify studies carried out in the participating countries. The characteristics of the instruments and type of studies were analyzed. Descriptive characteristics and psychometric properties were analyzed following the guidelines of the Scientific Advisory Committee of the Medical Outcomes Trust.

RESULTS: Ninety-nine documents were included. Thirty-one questionnaires were identified, 24 instruments were adapted, and the psychometric properties of 20 HRQOL instruments were reported in the study period. There was substantial variability in the number and characteristics of the dimensions included. Reliability was generally acceptable, and the majority of instruments provided data on internal consistency (n = 18) and, to a lesser extent, on test-retest reliability (n = 12). Nearly all studies reported construct validity, but only four analyzed sensitivity to change.

CONCLUSIONS: There is a scarcity of instruments to measure HRQOL of children and adolescents in the countries analyzed. Certain psychometric characteristics have been reasonably well tested, but others, most notably sensitivity to change, have not been tested in most instruments. Extension of this study to other Latin American countries would help to further identify gaps in this area and promote the use of HRQOL measurement in children and adolescents in Spanish-speaking cultures.
DOI:
10.1016/j.jval.2011.11.028
URL:
https://www.ncbi.nlm.nih.gov/pubmed/22433763
Journal:
Value Health
issn:
1524-4733 (Electronic)
Publication year:
2012
pages:
312-22
Symptom status:
Cognitive/mental state
General health perceptions / HRQoL:
Health-related quality of life
Age:
Children (0-18)
Disease:
Certain conditions originating in the perinatal period and related symptoms
Certain infections and parasitic diseases and related symptoms
Congenital malformations, deformations and chromosomal abnormalities and related symptoms
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism
Diseases of and symptoms related to the circulatory system
Diseases of and symptoms related to the digestive system
Diseases of and symptoms related to the ear and mastoid process
Diseases of and symptoms related to the eye and adnexa
Diseases of and symptoms related to the genitourinary system
Diseases of and symptoms related to the musculoskeletal system and connective tissue
Diseases of and symptoms related to the nervous system
Diseases of and symptoms related to the respiratory system
Diseases of and symptoms related to the skin and subcutaneous tissue
Endocrine, nutritional and metabolic diseases and related symptoms
External causes of morbidity and mortality
Injury, poisoning and certain other consequences of external causes
Mental and behavioural disorders and related symptoms
Neoplasms and related symptoms
Pregnancy, childbirth and puerperium and related symptom
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
Instrument:
ACS - Adolescent Coping Scale
CDLQI - Children's Dermatology Life Quality Index
CHAQ - Childhood Health Assessment Questionnaire
Child-OIDP - Child Oral Impact on Daily Performance Index
CHIP-AE - Child Health and Illness Profile-Adolescent Edition
CHIP-CE - Child Health and Illness Profile-Child Edition
CHIP-CE/CRF - Child Health and Illness Profile Child-Edition, Child Report Form
CHIP-CE/PRF - Child Health and Illness Profile Child-Edition, Parent Report Form
CHIP - Child Health and Illness Profile
CHQ - Child Health Questionnaire
EBBIT - Eating Behaviors and Body Image Test for Preadolescent Girls (eating behaviors in girls)
EQ-5D-Y - European Quality of Life-5 Dimensions (youth version), 5 item
HAEMO-QOL - Hemophilia Quality of Life Questionnaire
KIDSCREEN - 27 items
KIDSCREEN - 52 items
KINDL
PACES - Physical Activity Enjoyment Scale
PAQLQ - Pediatric Asthma Quality of Life Questionnaire
PedsQL - Pediatric Quality of Life Inventory
PI-QoL-AD - Parent’s Index of Quality of Life-Atopic Dermatitis (atopic dermatitis)
QOLIE-AD-48 - Quality of Life in Epilepsy Inventory for Adolescents (epilepsy)
QUALIN - Infant Quality of Life
SPPC - Self-Perception Profile for Children
VSP-A - Vecú de Santé Percué Adolescent