Establish what instruments are being utilised to measure health-related quality of life of children who have a chronic health condition to guide clinicians as to what constitutes a candidate measure.
Evaluate the reliability and validity of the instruments, and whether they are generalisable to a clinical setting.
Where both self-report and proxy-report are used:
To what extent do child self-reports correspond with the assessment made by parent proxy?
Databases: MEDLINE, EMBASE, PsycINFO, Scopus, Web of Science and Grey Literature
Limits: English Language, Human, 1989 - current.
A combination of both text words and indexed terms (such as MeSH) will be applied in each database. Search terms will be modified as necessary for each electronic database searched:
(Chronic illness OR Chronic health condition OR Chronic disease including congenital conditions).
AND (quality of life OR wellbeing OR health status OR subjective well-being OR subjective life satisfaction OR satisfaction with life OR self esteem OR self concept)
AND (Child OR Paediatrics OR infant Or toddler)
AND (measurement OR questionnaire OR tool OR instrument OR assessment)
Types of study to be included
Restrictions on study design:
Studies that target children starting at 12 years and over; development/validation studies; review articles; published abstracts and studies that report parent proxy only.
Condition or domain being studied
Quality of life in children with chronic health conditions.
Inclusion: Children from birth - 12 years with a chronic health condition
Measures and assessments of health-related quality of life and/or subjective wellbeing in children with a diagnosis of a chronic health condition. Methods accepted are quantitative (questionnaires) studies that report the child's perspective.
Quality of life in children with chronic health conditions will be examined for evidence of differences between control groups and other health conditions.
Research and clinical settings.
The primary outcome measure will be the child's self-reported quality of life. Depending on the study design this will be compared to a control group of children or changes in Qol pre-post medical/therapeutic intervention.
Where additional parent proxies are reported in studies, a comparison of concordance between self-report and parent proxy will be made.
We will report on the psychometric properties of the identified instruments (reliability and validity).
Data extraction, (selection and coding)
All studies identified using the search strategy outlined above will be screened for inclusion in the review. They will be screened independently by two review authors. The full text of the potential eligible studies will be retrieved independently by the reviewers and any disagreement over eligibility will be resolved through re-examination by both reviewers until an outcome is agreed. If the two reviewers are unable to resolve the disagreement, a third reviewer will be consulted to make the final decision. To ensure transparency in the review process any disagreements will be documented. All full text articles that are identified in the identification process will be presented in a flowchart with a summary of the reasons why they were excluded from the systematic review.
A standardised data extraction form will be developed and pre-piloted to ensure comprehensive data collection and synthesis.
Extracted information will include: study setting, chronic health condition, participant demographics, details of intervention and control group/conditions, study methodology, Qol instrument, reliability and validity of instrument, self-reported Qol, parent proxy (if included).
The two reviewers will independently extract the data and any discrepancies will be identified and discussed (with the third reviewer if necessary). Missing data will be requested from authors.
Risk of bias (quality) assessment
The reviewers will adhere to PRISMA guidance and compare the review to the 27-item checklist. Independent reviewers will screen identified articles and access the full text articles to ensure study selection bias is minimised.
The quality of the studies will be assessed using the following paremeters: Recruitment (selection bias and non-response bias); Design (course of measurement, informants and type of controls); Outcome Assessment; and Confounding and effect modification.
Strategy for data synthesis
The characteristics of selected studies will be presented in a summary table. If there are sufficient data we will provide a quantitative synthesis of the findings from the studies, including frequency of QoL instruments for different health conditions. We will provide a narrative synthesis of the findings structured around the target population characteristics, the reliability and validity of the instruments and outcomes, and generalisability to clinical settings.
Analysis of subgroups or subsets
Where both self-report and parent proxy data are reported, analyses of concordance rates will be examined and commented on.
Where studies have analysed their results in age subgroups (e.g. 5-7 yrs; 8-12yrs) we will examine any differences between them.
Where studies have targeted a wider range of children (e.g. 6-14 years) and data is not presented in a way for us to explore the subgroups, we will contact the authors for further information.
Contact details for further information
Dr Jenni Jardine
Institute of Health & Society,
Organisational affiliation of the review
Institute of Health & Society, Newcastle University
Dr Jenni Jardine, Newcastle-Upon-Tyne Hospitals NHS Foundation Trust Professor Judith Rankin, Institute of Health & Society Dr Svetlana Glinianaia, Institute of Health & Society Professor Helen McConachie, Institute of Health & Society Dr Nicholas Embleton, Newcastle-Upon-Tyne Hospitals NHS Foundation Trust
Dr Heather Borrill, Newcastle-Upon-Tyne Hospitals NHS Foundation Trust
Details of any existing review of the same topic by the same authors
Glinianaia SV, Embleton ND, Rankin J. A systematic review of studies of quality of life in children and adults with selected congenital anomalies. Birth Defects Res A Clin Mol Teratol 2012;94:511 - 520.
Anticipated or actual start date
09 July 2012
Anticipated completion date
09 July 2013
Newcastle-Upon-Tyne Hospitals NHS Foundation Trust 'Flexibility and Sustainability Fund'
Conflicts of interest
Subject index terms status
Subject indexing assigned by CRD
Subject index terms
Adolescent; Child; Chronic Disease; Humans; Infant; Infant, Newborn; Quality of Life
Date of registration in PROSPERO
10 August 2012
Date of publication of this revision
10 August 2012
Stage of review at time of this submission
Piloting of the study selection process
Formal screening of search results against eligibility criteria
Risk of bias (quality) assessment
PROSPERO This information has been provided by the named contact for this review. CRD has accepted this information in good faith and registered the review in PROSPERO. CRD bears no responsibility or liability for the content of this registration record, any associated files or external websites.