Abstract
BackgroundNew technologies to collect patient - reported outcomes have substantially solved the challenge of integrating a questionnaire in a busy clinical practice. At Memorial Sloan Kettering, we have been collecting patient reported outcomes electronically for many years. Our experience confirms the predicted benefits of obtaining patient reported outcomes but has also raised serious concerns about whether instruments developed for the research setting are appropriate for routine clinical use.DiscussionWe summarize four principles for a clinically - relevant psychometrics. First, minimize patient burden: the use of a large number of items for a single domain may be of interest for research but additional items have little clinical utility. Secondly, use simplified language: patients who do not have good language skills are typically excluded from research studies but will nonetheless present in clinical practice. Third, avoid dumb questions: many questionnaire items are inappropriate when applied to a more general population. Fourth, what works for the group may not work for the individual: group level statistics used to validate survey instruments can obscure problems when applied to a subgroup of patients.ConclusionThere is a need for a clinically-oriented psychometrics to help design, test, and evaluate questionnaires that would be used in routine practice. Developing statistical methods to optimize questionnaires will be highly challenging but needed to bring the potential of patient reported outcomes into widespread clinical use.
Highlights
New technologies to collect patient - reported outcomes have substantially solved the challenge of integrating a questionnaire in a busy clinical practice
We summarize our clinical experience of using patientreported outcomes in terms of four principles for a clinically-relevant psychometrics
What works for the group may not work for the individual Survey instruments are validated by providing group level statistics, such as correlations
Summary
We summarize four principles for a clinically - relevant psychometrics. Minimize patient burden: the use of a large number of items for a single domain may be of interest for research but additional items have little clinical utility. Use simplified language: patients who do not have good language skills are typically excluded from research studies but will present in clinical practice. Avoid dumb questions: many questionnaire items are inappropriate when applied to a more general population. What works for the group may not work for the individual: group level statistics used to validate survey instruments can obscure problems when applied to a subgroup of patients
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