To understand the cultural, linguistic and other factors leading to differences between in-person and patient-reported mRS scores among adults with stroke in Zambia. 

The patient-reported modified Rankin scale (mRS) is commonly used to assess functional status in people with stroke. Previous research in Zambia has noted low concordance between in-person clinician evaluation and self-reported mRS questionnaire results.

Consecutive adults with stroke were prospectively enrolled in this mixed methods cross-sectional study.  In-person mRS was determined by a neurologist’s clinical evaluation.  Verbal mRS questionnaire was administered to the patient/caregiver in their preferred language (English, Nyanja, or Bemba) within seven days of in-person evaluation.  Semi-structured interviews were conducted to understand respondents’ reasons for their answers to the mRS questionnaire. Responses were recorded and transcripts analyzed for themes related to patients’ comprehension of questions, perceptions of their health, and demonstrated behavior.

Of 51 participants, in-person and self-reported mRS scores were equivalent in 51% of cases, suggesting moderate agreement (weighted kappa=0.548). Self-reported mRS was 1-point higher and 1-point lower than in-person mRS scores in 19% (n=10) and 11% (n=6) of cases, respectively, and 2 points higher in 8% (n=4) of cases. Agreement between dichotomized (good: <2; poor: >3) mRS outcomes was moderate (K = 0.60). Differences in scoring could be attributed to (1) language/translation errors; (2) responses from caregivers with incomplete knowledge of patients’ conditions; (3) patients’ apprehension about attempting to perform physical tasks such as sitting or walking; (4) patient underestimating non-motor-related stroke deficits; and (5) patient-physician mismatch in assessment of patients’ abilities.

In-person clinician-determined and patient self-reported mRS scores matched for only half of patients with stroke in Zambia.  Further work to refine mRS translations and understand patients’ own perceptions of their abilities will enable better interpretation of in-person and self-reported mRS scores in this population and ultimately improve post-stroke care in Zambia.