COSMIN database

Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments

Authors:
Solans, M., Pane, S., Estrada, M. D., Serra-Sutton, V., Berra, S., Herdman, M., Alonso, J., and Rajmil, L.
Abstract:
OBJECTIVE: To identify currently available generic and disease-specific health-related quality of life (HRQOL) instruments for children and adolescents up to 19 years old, to describe their content, and to review their psychometric properties.

STUDY DESIGN: Previous reviews on the subject and a new literature review from 2001 to December 2006 (MEDLINE, the ISI Science Citation Index, HealthSTAR and PsycLit) were used to identify measures of HRQOL for children and adolescents. The characteristics (country of origin, age range, type of respondent, number of dimensions and items, name of the dimensions and condition) and psychometric properties (reliability, validity, and sensitivity to change) of the instruments were assessed following international guidelines published by the Scientific Committee of the Medical Outcomes Trust.

RESULTS: In total, 30 generic and 64 disease-specific instruments were identified, 51 of which were published between 2001 and 2005. Many generic measures cover a core set of basic concepts related to physical, mental and social health, although the number and name of dimensions varies substantially. The lower age limit for self-reported instruments was 5-6 years old. Generic measures developed recently focused on both child self-report and parent-proxy report, although 26% of the disease-specific questionnaires were exclusively addressed to proxy-respondents. Most questionnaires had tested internal consistency (67%) and to a lesser extent test-retest stability (44.7%). Most questionnaires reported construct validity, but few instruments analyzed criterion validity (n = 5), structural validity (n = 15) or sensitivity to change (n = 14).

CONCLUSIONS: The development of HRQOL instruments for children and adolescents has continued apace in recent years, particularly with regard to disease-specific questionnaires. Many of the instruments meet accepted standards for psychometric properties, although instrument developers should include children from the beginning of the development process and need to pay particular attention to testing sensitivity to change.
DOI:
10.1111/j.1524-4733.2007.00293.x
URL:
https://www.ncbi.nlm.nih.gov/pubmed/18179668
Journal:
Value Health
issn:
1524-4733 (Electronic)
Publication year:
2008
pages:
742-64
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
Age:
Children (0-18)
Disease:
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 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
Factors influencing health status and contact with health services
Mental and behavioural disorders and related symptoms
Neoplasms and related symptoms
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
6 - Clinical rating scales
Instrument:
16D - Sixteen-dimensional health-related measure
17D - Seventeen-dimensional health-related measure
AAQOL - Adolescent Asthma Quality of Life Questionnaire
ADHD IMPACT MODULE - Life Satisfaction Index for Adolescents with Neuromuscular Disorders
AdolRQLQ - Adolescent Rhinoconjunctivitis Quality of Life Questionnaire
AMA - About my Asthma
ARQOLS - Asthma-Related Quality of Life Scale
ASDQ - Asthma Symptoms and Disability Questionnaire
AUQEI - Autoquestionnaire Qualité de Vie Enfant Imagé
BASES - Behavioral, Affective, and Somatic Experiences Scale
BrQ - Brace Questionnaire
CAQ - Childhood Asthma Questionnaires
CAVE - Escala de Calidad de Vida del Niño con Epilepsia
CDLQI - Children's Dermatology Life Quality Index
CEQ-P - Child Epilepsy Questionnaire
CFQ - Child Feeding Questionnaire
CHAQ - Childhood Health Assessment Questionnaire
Child-OIDP - Child Oral Impact on Daily Performance Index
Children with Crohn's disease questionnaire
CHIP-AE - Child Health and Illness Profile-Adolescent Edition
CHIP-CE - Child Health and Illness Profile-Child Edition
CHQ - Child Health Questionnaire
CHRIs - Child Health Rating Inventories
CHRS - Children’s Health Ratings Scale
CHSCS - Child’s health self-concept scale
CLQI - Children’s Life Quality Index
ConQOL - Quality of Life for Children with Congenital Cardiac Disease
COOP charts - Dartmouth COOP Functional Health Assessment Charts
CPQ11–14 - Child Perceptions Questionnaire 11–14
CPQ6-7 - Child Perceptions Questionnaire 6–7
CPQ8-10 - Child Perceptions Questionnaire 8–10
CP QOL-Child - Cerebral Palsy Quality of Life, child version
CQOL - Child Quality of Life Questionnaire
DDL - Defecation Disorder List
DHP-A - DUKE Health Profile-Adolescent version
DIRQ - Diabetes-specific Illness Representations Questionnaire
DISABKIDS
DPSMA - Diabetes Problem Solving Measure for Adolescents
DQOL-Y - Diabetes Quality of Life-Youth questionnaire
DQOL-Y-SF - Diabetes Quality of Life-Youth questionnaire short form
ECVNO - Escala de Calidad de Vida para Niños Oncológicos
EHRQL - Exeter Health-Related Quality Life Measure
FSIIR - Functional Status (II) Revised
GCQ - Generic Children’s Quality of Life Measure
HAEMO-QOL - Hemophilia Quality of Life Questionnaire
HAY - How Are You
HOQ - Hydrocephalus Outcome Questionnaire
HSCS - Health Status Classification System
HUI-2 - Health Utilities Index Mark 2
HUI-3 - Health Utilities Index-Mark 3
ICIS - Impact of Childhood Illness Scales
ICND - Impact of Childhood Neurologic Disability Scale
IDQoL - Infant’s Dermatitis Quality of Life Index
IMPACT
ITG-CASF - Integrated Therapeutics Group Child Asthma Short Form
ITP - Immune Thrombopenic Purpura Child Quality of life Questionnaire
ITP-QOL - Idiopathic Thrombocytopenic Purpura Quality of Life Questionnaire
ITQoL - Infant Toddler Quality of Life Questionnaire
JAQQ - Juvenile Arthritis Quality of Life Questionnaire
JSCA-QOL v3 - Quality of Life Questionnaire for Japanese School-aged Children with Asthma
KIDSCREEN - 27 items
KIDSCREEN - 52 items
KINDL
LAQCA - Life Activities Questionnaire for Childhood Asthma
LSIA - Life Satisfaction Index A
MMQL-AF - Minneapolis-Manchester Quality of Life-Adolescent Form
MMQL-YF - Minneapolis-Manchester Quality of Life-Youth Form
MPQOLQ - The Miami Pediatric Quality of Life Questionnaire
NLDO - NasoLacrimal Duct Obstruction questionnaire score
Nordic Quality of Life Questionnaire for Children
OM-6 - Otitis Media 6 items
OSA-18 - Obstructive Sleep Apnea 18-item quality of life survey
PADQLQ - Pediatric Allergic Disease Quality of Life Questionnaire
PAHOM - Pediatric Asthma Health Outcome Measure
PAQLQ - Pediatric Asthma Quality of Life Questionnaire
PATC - Pain Assessment Tool for Children
PCQL-32 - Pediatric Cancer Quality of Life Inventory
PEDQOL® - quality of life in children and adolescents with cancer
PedsQL 4.0 Generic Core Scales - Pediatric Quality of Life Inventory Generic Core Scales
PIE - Perceived Illness Experience
PinQ
POQOLS - Pediatric Oncology Quality of Life Scale
PQ-LES-Q - Pediatric Quality of Life Enjoyment and Satisfaction Questionnaire
PRQLQ - Pediatric Rhinoconjunctivitis Quality of Life Questionnaire
PV-RQoL - Pediatric Voice-Related Quality of Life
QLH-Y - Quality of Life Headache in Youth
QLPSD - Quality of Life Profile for Spine Deformities
QOLCC - Quality of life in Childhood Cancer
QOLIE-89 - Quality of Life in Epilepsy Inventory 89 items
QOLIE-AD-48 - Quality of Life in Epilepsy Inventory for Adolescents (epilepsy)
QOLP-AV - Quality of Life Profile-Adolescent Version
QOLQA - Quality of Life Questionnaire for Adolescents
QUALIN - Infant Quality of Life
Quality of Life in Spina Bifida Questionnaire
QVCE50 - Qualidade deVida Relacionada à Saúde para Crianças Brasileiras com Epilepsia
SN-5
SQLI - Scoliosis Quality of Life Index
TACQOL - TNO-AZL Child Quality of Life   [see: ZUYD (NL)]
TAPQOL - TNO-AZL Preschool Children Quality of Life   [see: ZUYD (NL)]
TedQL.4
TNO-AZL/DUX-25 - Dutch Children TNO-AZL Quality of Life Questionnaire
Tonsil and Adenosil HS Instrument
TQOLQA - Taiwanese Quality of Life Questionnaire
VSP-A - Vecú de Santé Percué Adolescent
WCHMP - Warwick Child Health & Morbidity Profile
YQOL - Youth Quality of Life Instrument