The objectives of this review are to:

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)

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.

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.

Exclusion criteria:

Qualitative methods

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.

Primary outcomes

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.

Secondary outcomes

We will report on the psychometric properties of the identified instruments (reliability and validity).

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.

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.

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.

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.

Conference presentation

Dr Jenni Jardine

Institute of Health & Society,

Newcastle University,

Baddiley-Clark Building,

Richardson Road,

Newcastle-Upon-Tyne,

NE2 4AX

jenni.jardine@ncl.ac.uk

Institute of Health & Society, Newcastle University

http://www.ncl.ac.uk/ihs/

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

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.

doi: 10.1002/bdra.23030.

09 July 2012

09 July 2013

Newcastle-Upon-Tyne Hospitals NHS Foundation Trust 'Flexibility and Sustainability Fund'

None known

English

England

Subject indexing assigned by CRD

Adolescent; Child; Chronic Disease; Humans; Infant; Infant, Newborn; Quality of Life

10 August 2012

10 August 2012