Revisiting the meaning and the source of health‐related constructs and their applications in neurodisability

The aim of this review is to revisit the meaning of common concepts and frameworks promoted to capture subjective outcomes of patients, the content of their corresponding measurements, and the preferred sources of the information of interest. This is important because conceptualizations of ‘health’...

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Bibliographic Details
Published in:Developmental medicine and child neurology 2024-02, Vol.66 (2), p.155-160
Main Author: Ronen, Gabriel M.
Format: Article
Language:English
Subjects:
Health Status
Humans
Patient Reported Outcome Measures
Psychometrics
Quality of Life
Surveys and Questionnaires
Citations: Items that this one cites
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Summary:The aim of this review is to revisit the meaning of common concepts and frameworks promoted to capture subjective outcomes of patients, the content of their corresponding measurements, and the preferred sources of the information of interest. This is important because conceptualizations of ‘health’ and the subject evaluations thereof continue to evolve. Related but distinct concepts like quality of life (QoL), health‐related QoL (HRQoL), functional status, health status, and well‐being are often used indiscriminately to assess clinical impacts of interventions and to influence decisions about patient care and policymaking. The discussion addresses and illustrates the following issues: (1) the required features of effective and valid health‐related concepts; (2) understanding underlying factors that often create confusion about QoL and HRQoL; and (3) how these concepts provide insight into, and promote, health in the context of populations with neurodisability. The hope is to illustrate how a combination of a clear research question, a hypothesis, conceptualization of the required outcomes, and operational definitions of the domains and items of interest, including item mapping, can help to achieve robust methodology and valid findings beyond the required psychometric properties. What this paper adds The language, content, and the source of perceived health and life issues are clarified. Using the same terms for different constructs, or different terms for the same constructs, creates confusion and hinders outcome research. The challenges of using patient‐reported outcomes in neurodisability are addressed. What this paper adds The language, content, and the source of perceived health and life issues are clarified. Using the same terms for different constructs, or different terms for the same constructs, creates confusion and hinders outcome research. The challenges of using patient‐reported outcomes in neurodisability are addressed.
ISSN:0012-1622
1469-8749
DOI:10.1111/dmcn.15664