Health literacy and equity challenges in validating a rheumatoid arthritis flare questionnaire

Background

Patient-reported outcome measures (PROMs) are central to patient-centered care and international research. However, when wording is not aligned with patients’ everyday language or literacy level, PROMs may hinder participation, compromise self-report validity, and limit equity and international comparability, particularly where formal written language differs from everyday spoken language. We assessed comprehension of the French FLARE-RA questionnaire translated into Modern Standard Arabic (MSA), a formal language, among Moroccan patients with rheumatoid arthritis (RA), whose primary spoken language is Darija.

Methods

The questionnaire was translated by two independent translators, reconciled, and reviewed by an expert committee. Wording was simplified into plain Arabic to address varying literacy levels. Arabic cognitive debriefing interviews with verbal probing were conducted with RA patients at Rabat Hospital, using structured guides based on Tourangeau’s framework. Patients reported understanding of instructions, items, and response options, and identified ambiguities. Interviews were audio-recorded with consent, transcribed verbatim, and analyzed using reflexive thematic analysis.

Results

Twenty-eight patients participated (71% women), with a median age of 62 years (25-76); 39% were illiterate, 14% had formal literacy instruction, 25% had primary education, 15% had secondary education, and 7% had higher education. Frequent comprehension difficulties were observed, including hesitation, unanswered items, and reliance on contextual inference, driven by lexical ambiguities, conceptual overlap between items, temporal framing confusion, and false equivalences between MSA and Darija terms.

Conclusions

MSA FLARE-RA showed poor comprehension by Moroccan patients. These findings support the development of an adapted Darija version, currently under development, as language mismatch may systematically disadvantage lower-literacy and linguistic minorities.

Key messages

• Patient-reported outcomes should use accessible, context-adapted language that considers health literacy to ensure equitable, patient-centered care.

• Language and cultural adaptation of PROMs using plain language and cognitive testing improves accessibility and data accuracy while supporting fair comparability across diverse populations.