DO WORDS MATTER? PATIENT PERSPETIVES ON CONCEPTUALLY SIMILAR SYMPTOMS AND IMPACTS FREQUENTLY UTILIZED IN PATIENT-REPORTED OUTCOME (PRO) MEASURES
Author(s)
Gauthier M1, Egan S1, Ryan A2, Khurana L3, Dallabrida SM3, Evans C2
1Endpoint Outcomes, Long Beach, CA, USA, 2Endpoint Outcomes, Boston, MA, USA, 3ERT, Boston, MA, USA
OBJECTIVES : Patients often use a variety of words to describe similar disease experiences, leading to challenges during analysis and concept selection for patient-reported outcome (PRO) measures. This study aimed to determine if conceptually similar symptoms and impacts are defined as the same or different among patients with different diseases. METHODS : RESULTS : A total of 419 subjects were enrolled, with n=104 for all disease groups except depression (n=107). More than two-thirds of the sample identified “annoyed” and “irritated” (87.3%), “tired” and “fatigued” (86.3%), “irritated” and “aggravated” (82.2%), “frustrated” and “aggravated” (75.9%), and “sad” and “depressed” (67.7%) as conceptually the same. The only words categorized as different by more than two-thirds of the sample were “not confident” and “embarrassed” (80.8%). Subjects did not provide definitive responses (i.e., no group achieved two thirds agreement in either direction) for the remaining pairs. Results showed little variation across disease groups. CONCLUSIONS : Words patients use to describe disease concepts do not always align with clinical and regulatory definitions. As patients use words interchangeably, concept-level analysis can help narrow the selection of items and produce more concise questionnaires. The homogeneity of results across disease groups suggests that patients’ vocabulary is not impacted by the underlying disease state (e.g., a depressed patient is as likely to report “sad” and “depressed” as conceptually the same as a non-depressed patient). For words identified as conceptually the same, factors like readability or translatability should be considered and perhaps prioritized when selecting language used in PRO measures.
Conference/Value in Health Info
2018-05, ISPOR 2018, Baltimore, MD, USA
Value in Health, Vol. 21, S1 (May 2018)
Code
PHP143
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Multiple Diseases