Effects of age and cognitive impairment on PROMIS-57 profile responses: Qualitative analyses from cognitive interviews

This study uses qualitative cognitive interviews to study meanings and processes used by participants, stratified by age and cognitive status, who are responding to questions on the PROMIS-57 Profile measure. The thirty-eight participants included 36% (n=13) with MoCA (Montreal Cognitive Assessment) 30-26, 36% (n=13) MoCA 25-18, 28% (n=12) MoCA 17-10; 56% (n=21) age 65-79, and 44% (n=17) age 80+. Four themes of response difficulty were identified: 1) comprehension, 2) use of the response set, 3) adaptation and activity limitations related to disability, and 4) positive frame of mind. Problems with Comprehension of Question or Concept were most common in the lowest MoCA group (10-17). Difficulty with Mapping Experience onto Response Set was also most common in the lowest MoCA group, and slightly more common in those age 80+. Adherence to the 7-day timeframe and mismatches of response and rationale were surprisingly more common in the middle MoCA group (18-25; associated with Mild Cognitive Impairment) and those age 65-79. Disability-related adaptive strategies were more common in the lower age group (65-79), and somewhat more common in the highest and middle MoCA groups (normal cognition and MCI). An optimistic outlook (Positive Frame of Mind) was more likely to influence responses in the cognitively intact group and the 80+ group. Twenty-one PROMIS Profile items were misinterpreted frequently: 6 items in the Fatigue scale, 6 in Anxiety, 4 in Pain Interference, 2 in Depression, 2 in Social Roles, and 1 in Sleep. This study shows that cognitive impairment and aging affect the accuracy and reliability of patient responses on the PROMIS Profile measure, indicating the need for development of patient-reported outcome measures customized for these populations. Based on these results, clinicians caring for older adults and those with cognitive impairment should be aware of the common limitations of patient responses on validated questionnaires.