COSMIN database

Systematic review of health-related quality of life measures for children with respiratory conditions

Quittner, A. L., Modi, A., and Cruz, I.
Patient-reported outcomes (PROs) are increasingly used in both clinical trials and clinical care to evaluate patient benefits. The purpose of this review was to identify currently available PROs for children with pulmonary conditions and to make recommendations regarding future development and application of these measures. Systematic searches were conducted and disease-specific health-related quality of life (HRQOL) measures, a type of PRO, were identified for asthma, cystic fibrosis (CF), vocal cord dysfunction and sleep-related breathing disorders. Psychometric properties, age-appropriateness, respondent burden and minimal clinically importance difference scores were evaluated in accordance with the Food and Drug Administration guidelines. For both asthma and CF there are several psychometrically sound, well-established measures; however, for vocal cord dysfunction and sleep-related breathing disorders there are no measures children can complete for themselves. In summary, this review indicated that although significant progress has been made, there are still a number of pulmonary conditions for which there is no disease-specific HRQOL measure.
Paediatr Respir Rev
1526-0550 (Electronic)
Publication year:
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
Children (0-18)
Diseases of and symptoms related to the respiratory system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
AAQOL - Adolescent Asthma Quality of Life Questionnaire
AMA - About my Asthma
ARQOLS - Asthma-Related Quality of Life Scale
CAQ - Childhood Asthma Questionnaires
CFQ - Cystic Fibrosis Questionnaire (versions: CFQ-R - CFQ-revised; 14+ for teens; Adolescents; Child; Parent/proxy)
CFQoL - Cystic Fibrosis Quality of Life Questionnaire
CHSA - Children’s Health Survey for Asthma
FLZM-CF - Questions on Life Satisfaction-Cystic Fibrosis
HAY - How Are You
ITG-CASF - Integrated Therapeutics Group Child Asthma Short Form
Life Activities Questionnaire for Childhood Asthma
OSA-18 - Obstructive Sleep Apnea 18-item quality of life survey
OSD-6 - Obstructive Sleep Disorders-6 Survey
PACQLQ - Pediatric Asthma Caregiver’s Quality of Life Questionnaire
PAQLQ - Pediatric Asthma Quality of Life Questionnaire
PedsQL-Asthma - Pediatrics Quality of Life-Asthma Module
pVHI - Pediatric Voice Handicap Index
PVOS - Pediatric Voice Outcome Survey
PV-RQoL - Pediatric Voice-Related Quality of Life
TACQOL-Asthma - TNO-AZL Child Quality of Life-Asthma