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

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Abstract

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.

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Abbreviations

*ACEND:

Assessment of caregiver experience with neuromuscular disease

*AOM-QoL:

Acute otitis media quality of life questionnaire

BDI:

Beck depression inventory

*CADIS:

Childhood atopic dermatitis impact scale

CBS:

Caregiver burden scale

CHQ—PF:

Child health questionnaire—parent form

COSMIN:

Consensus-based standards for the selection of health measurement instruments

*CQOLC:

Caregiver quality of life—cancer

*CQOLCF:

Caregiver quality of life—cystic fibrosis

*DFI:

Dermatitis family impact

*FAQLPB:

Food allergy quality of life—parental burden

*FDLQI:

Family dermatology life quality index

*FIS—OFD:

Family impact scale—oral facial disorder

*FQoLS—2006:

Family quality of life survey—2006 version

GWBI:

General well-being index

*ICCAP:

Impact of a child with congenital anomalies on parents

*IFABI-R:

Cuestionario de Impacto Familiar del Asma Bronquial Infantil Revisado

*IPES:

Impact of pediatric epilepsy scale

*ITP—PB:

Idiopathic thrombocytopenic purpura—parental burden

*IXT—QoL:

Intermittent eXoTropia—quality of life

MCSDS:

Marlowe-Crowne social desirability scale

*PACQLQ:

Pediatric asthma caregivers’ quality of life questionnaire

PAQLQ:

Pediatric asthma quality of life questionnaire

*PAR-ENT-QoL:

PARent-ear nose and throat—quality of life

*PDQoL:

Parents’ diabetes quality of life

*PEMQoL—SF:

Pediatric enuresis module quality of life—short form

*PIQoL-AD:

Parents’ index of quality of life in atopic dermatitis

PSI:

Parenting stress index

QoL:

Quality of life

*QoL-PAC:

Quality of life of parents of asthmatic children

*QLCCDQ:

Quality of life in a child’s chronic disease questionnaire

*QPCAD:

Quality of life in primary caregivers of children with atopic dermatitis

SCORAD:

Severity scoring of atopic dermatitis

STAI:

State-trait anxiety inventory

VAS:

Visual analog scale

*WE-CARE:

WEll-being and satisfaction of CAREgivers of children with diabetes

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Acknowledgments

We would like to acknowledge the questionnaire authors for providing original copies and translations of their questionnaires. We also wish to thank our librarian Ms. Catherine King for her advice on search strategy development.

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There are no competing interests.

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Authors and Affiliations

  1. National Centre for Immunisation Research and Surveillance, The Research Building, Kids Research Institute, The Children’s Hospital at Westmead, Locked Bag 4001, Westmead, NSW, 2145, Australia

    Maria Yui Kwan Chow & Julie Leask

  2. Discipline of Paediatrics and Child Health, Sydney Medical School, The University of Sydney, Locked Bag 4001, Westmead, NSW, 2145, Australia

    Maria Yui Kwan Chow, Angela M. Morrow & Julie Leask

  3. Kids Rehab, The Children’s Hospital at Westmead, Locked Bag 4001, Westmead, NSW, 2145, Australia

    Angela M. Morrow

  4. School of Public Health, Sydney Medical School, A27 Edward Ford Building, The University of Sydney, NSW, 2006, Australia

    Julie Leask

  5. Sexually Transmitted Infection Research Centre, Sydney Medical School, The University of Sydney, L4 Jeffrey House, 162 Marsden Street, Parramatta, NSW, 2150, Australia

    Spring Chenoa Cooper Robbins

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  1. Maria Yui Kwan Chow
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Correspondence to Maria Yui Kwan Chow.

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Chow, M.Y.K., Morrow, A.M., Cooper Robbins, S.C. et al. Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: a systematic review. Qual Life Res 22, 2183–2200 (2013). https://doi.org/10.1007/s11136-012-0343-z

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