COSMIN database

Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: a systematic review

Chow, M. Y., Morrow, A. M., Cooper Robbins, S. C., and Leask, J.
PURPOSE: Childhood illness or disability can affect the quality of life (QoL) of the child's primary caregiver. Our aim was to identify, describe the content and systematically review the psychometric properties of condition-specific QoL questionnaires for caregivers of children.

METHODS: Medline, PsycInfo, Embase, CINAHL, and the Cochrane library databases were searched from 1 January 1990 to 30 June 2011. Articles related to the development and measurement of caregiver QoL were screened to identify condition-specific questionnaires. The characteristics of the questionnaires were extracted, and their psychometric properties were evaluated using the consensus-based standards for the selection of health measurement instruments checklist with 4-point scale.

RESULTS: We identified 25 condition-specific caregiver QoL questionnaires covering 16 conditions. Conditions included atopic dermatitis, asthma, diabetes, oro-facial disorders, and two acute illnesses. Questionnaires were developed predominantly in high-income countries. Questionnaires had the highest quality rating for content validity, followed by hypothesis testing. Methodological quality was satisfactory for criterion validity; fair in reliability and responsiveness; and poor in internal consistency and structural validity.

CONCLUSIONS: The increasing number of questionnaires developed over time shows improved recognition of the importance of caregiver QoL. There is a paucity of QoL questionnaires for caregivers of otherwise healthy children suffering from physical injuries and acute conditions associated with significant caregiver burden. Cultural validation of existing and new questionnaires in lower-income countries is necessary. Data collected by condition-specific questionnaires can assist clinicians and health economists in estimating caregiver burden and the types of healthcare services caregivers require and may be useful for healthcare administrators to evaluate interventions.
Qual Life Res
1573-2649 (Electronic)
Publication year:
General health perceptions / HRQoL:
Health-related quality of life
Self-rated health
Adults (18-65)
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
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
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
ACEND - Assessment of Caregiver Experience with Neuromuscular Disease
AOM-QoL - Acute Otitis Media Quality of Life questionnaire
CADIS - Childhood Atopic Dermatitis Impact Scale – English version (US)
CQoLC - Caregiver Quality of Life Index–Cancer
CQOLCF - Caregiver Quality of Life Cystic Fibrosis
DFI - Dermatitis Family Impact
FAQLPB - Food Allergy Quality of Life– Parental Burden questionnaire
FDLQI - Family Dermatology Life Quality Index
FIS—OFD - Family Impact Scale-oro-facial disorders
FQoLS—2006 - Family Quality of Life Survey
IFABI-R-Questionnaire - Cuestionario de Impacto Familiar del Asma Bronquial Infantil Revisado
IPES - Impact of Pediatric Epilepsy Scale
ITP-PB - ITP-Parental burden QoL questionnaire
IXT-QoL - QoL questionnaire for Intermittent Exotropia
PACQLQ - Pediatric Asthma Caregiver’s Quality of Life Questionnaire
PAR-ENT-QoL - Parent Ear Nose and Throat QoL questionnaire
PDQoL - Parents’ diabetes QoL Questionnaire
PEMQoL— SF - Pediatric Enuresis Module QoLShort form
PIQoL-AD - Parents’ Index of Quality of Life in Atopic Dermatitis
QLCCDQ - Quality of Life in a Child’s Chronic Disease Questionnaire
QoL-PAC - Quality of Life of parents of asthmatic children
QPCAD - Quality of life in primary caregivers of children with atopic dermatitis
THAICLEFT QoL Questionnaire
WE-CARE - Well-being and Satisfaction of CAREgivers of children with Diabetes Questionnaire