COSMIN database

Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes

Authors:
Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Graham, H. K., Mehmet-Radji, O., and Boyd, R.
Abstract:
With an increasing number of paediatric quality of life (QOL) instruments being developed, it is becoming difficult for researchers and clinicians to select the most appropriate instrument. Reviews of QOL instruments tend to report only basic properties of the instruments such as domains and psychometric properties. This paper seeks to appraise critically the conceptual underpinnings of paediatric QOL instruments. A systematic review was conducted to identify QOL instruments for children aged 0 to 12 years, and to examine and compare their conceptual frameworks, definitions employed, and structure. Both generic and condition-specific measures were reviewed. Fourteen generic and 25 condition-specific QOL instruments were identified. Eleven types of definition of QOL and health-related QOL and three theories of QOL were identified. QOL was measured by a variety of domains including emotional, social and physical health, and well-being. Items commonly assessed difficulties, or intensity/frequency of feelings/symptoms, in contrast to positive aspects of life and happiness. The findings highlight the diversity that is apparent in the conceptualization of paediatric QOL and draw attention to the lack of empirical evidence for many of the fundamental assumptions. The impact of the conceptual underpinnings of the instruments on the resulting QOL scores is discussed.
DOI:
10.1017/S0012162206000673
URL:
https://www.ncbi.nlm.nih.gov/pubmed/16542522
Journal:
Dev Med Child Neurol
issn:
0012-1622 (Print)
Publication year:
2006
pages:
311-8
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
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
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
6 - Clinical rating scales
Instrument:
AIM-ADHD
AMA - About my Asthma
AUQEI - Autoquestionnaire Qualité de Vie Enfant Imagé
Behavioural, Affective and Somatic Experiences Scale
CAQ - Childhood Asthma Questionnaires
CDLQI - Children's Dermatology Life Quality Index
CFQ-C - Cystic fibrosis questionnaire-child version
CQOL - Child Quality of Life Questionnaire
Epilepsy QOL Questionnaire
Exqol - Exeter Quality of Life Measure
GCQ - Generic Children’s Quality of Life Measure
HAEMO-QOL - Hemophilia Quality of Life Questionnaire
HAY - How Are You
HUI-2 - Health Utilities Index Mark 2
HUI-3 - Health Utilities Index-Mark 3
IMPACT
Impact of Childhood Illness Scale
KIDSCREEN - 27 items
KIDSCREEN - 52 items
KINDL
MPQOLQ - The Miami Pediatric Quality of Life Questionnaire
Nordic Quality of Life Questionnaire for Children
PAQLQ - Pediatric Asthma Quality of Life Questionnaire
PCQL - Pediatric Cancer Quality of Life Inventory
Perception of Illness Experience
POQOLS - Pediatric Oncology Quality of Life Scale
PRQLQ - Pediatric Rhinoconjunctivitis Quality of Life Questionnaire
QOL Childhood Epilepsy Questionnaire
QOL index for Pediatric Inflammatory Bowel Disease
QOL of Children with Otitis Media
Quality of Life and Short Stature
Quality of Life in Childhood Cancer
Quality of Life in Children Epilepsy-89
Quality of Life in Children with Crohn’s Disease
Spina Bifida HRQOL Scale
TACQOL - TNO-AZL Child Quality of Life   [see: ZUYD (NL)]
TAIQOL - TNO-AZL Infant Quality Of Life