Quality-of-life measures in chronic diseases of childhood
Authors:
Eiser, C. and Morse, R.
Abstract:
SCOPE OF THE REPORT: This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what extent are adult measures used in the evaluation of healthcare interventions in children? (2) How appropriate are adult measures for use with children? (3) To what extent do child self-reports correspond with assessments made by parents and carers? (4) How feasible and reliable are proxy measures of QoL in different disease contexts?
OBJECTIVES: (1) To review the state of the art with regard to measurement of QoL for children. (2) To make recommendations regarding the value of currently available measures for different purposes. (3) To identify further research needs.
METHOD: Electronic databases were searched for the period 1980-July 1999 for articles relating to measures of QoL, health status or well-being in children (under 18 years) with chronic disease. Handsearching of relevant journals and cross-referencing with reference lists in identified articles was also carried out. Key workers in the field were contacted for additional information, and the Internet was searched for relevant websites.
RESULTS: Forty-three measures were identified (19 generic and 24 disease-specific). Sixteen measures allowed for completion by children and parent/caregiver; seven only allowed for completion by a proxy, and the remainder (n = 17) allowed only for child completion. The measures were described as QoL (n = 30), health status, (n = 2), perception of illness (n = 1), life satisfaction (n = 1) and quality of well-being (n = 1). RESU
DOI:
URL:
PM:11262421
Journal:
Health Technology Assessment
issn:
Publication year:
2001
pages:
1-157
Symptom status:
Cognitive/mental state Emotional state Physical state
Functional status:
Physical functioning Role functioning Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Overall quality of life:
Overall 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 Codes for special purposes 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 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 Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified
