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Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument
Author(s) -
WATERS ELIZABETH,
DAVIS ELISE,
RONEN GABRIEL M,
ROSENBAUM PETER,
LIVINGSTON MICHAEL,
SAIGAL SAROJ
Publication year - 2009
Publication title -
developmental medicine and child neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.658
H-Index - 143
eISSN - 1469-8749
pISSN - 0012-1622
DOI - 10.1111/j.1469-8749.2009.03324.x
Subject(s) - cerebral palsy , psychology , quality of life (healthcare) , clarity , cognition , proxy (statistics) , psychometrics , clinical psychology , reliability (semiconductor) , applied psychology , developmental psychology , medicine , psychiatry , psychotherapist , computer science , biochemistry , chemistry , power (physics) , physics , quantum mechanics , machine learning
Aim There are many misconceptions about what constitutes ‘quality of life’ (QoL). It is often difficult for researchers and clinicians to determine which instruments will be most appropriate to their purpose. The aim of the current paper is to describe QoL instruments for children and adolescents with neurodisabilities against criteria that we think are important when choosing or developing a QoL instrument. Method QoL instruments for children and adolescents with neurodisabilities were reviewed and described based on their purpose, conceptual focus, origin of domains and items, opportunity for self report, clarity (lack of ambiguity), potential threat to self‐esteem, cognitive or emotional burden, number of items and time to complete, and psychometric properties. Results Several generic and condition‐specific instruments were identified for administration to children and adolescents with neurodisabilities – cerebral palsy, epilepsy and spina bifida, and hydrocephalus. Many have parent‐proxy and self‐report versions and adequate reliability and validity. However, they were often developed with minimal involvement from families, focus on functioning rather than well‐being, and have items that may produce emotional upset. Interpretation As well as ensuring that a QoL instrument has sound psychometric properties, researchers and clinicians should understand how an instrument’s theoretical focus will have influenced domains, items, and scoring.