Approximately one-third of the U.S. population has basic or below basic health literacy skills and only 12% of the population possess proficient health literacy.(1) Lower health literacy has been associated with poor health outcomes and poor compliance with care plans.(2) Pelvic floor disorder questionnaires are commonly administered in clinical care and clinical research, but little is known about how health literacy status impacts the utilization of these forms. Our aim was to evaluate the performance of two commonly used measures, Pelvic Floor Distress Inventory–Short Form 20 (PFDI-20) and Pelvic Floor Impact Questionnaire–Short Form 7 (PFIQ-7) in a low health literacy population.

Readability assessment was performed using Flesch-Kincaid grade level calculator, SMOG readability calculator, Fry graph readability calculator, and FORCAST readability formula.  Scores from readability assessments reflected the average U.S. reading level required to comprehend the content. Two health literacy experts performed independent assessment using Patient Education Materials Assessment Tool for Printable Materials (PEMAT) to rate ease of understanding and Evaluative Linguistic Framework for Questionnaires (ELF-Q) to evaluate questionnaire quality, then arrived at consensus. A single focus group was conducted to obtain information on the domains of actionability, readability, and organization of questionnaires using facilitator prompts and Stop Light Coding (3), a validated method for eliciting qualitative assessment of print materials from low health literacy participants. The focus group was designed to include female participants with low health literacy across a broad age range. Demographic data and health literacy status were collected on focus group participants.

Readability scores are presented in Table 1. PEMAT consensus for PFDI-20 included: the purpose of the form was not clear; the questionnaire included unfamiliar medical jargon and symptoms; and the response format was confusing. PEMAT consensus for PFIQ-7 included: the purpose of the form was not clear; it could be difficult for respondents to distinguish between “somewhat” and “moderately” responses; and the question format was confusing. ELF-Q consensus findings for both included: concerns regarding organization and question flow and suggestions to include more detailed instructions and explain purpose. Nine women participated in a single focus group; all were English speaking and African-American, with median age group of 41-60 years (range <40 to >80 years). 89% had no prior pelvic floor disorder care.  78% percent had completed some college or beyond, though only one woman screened as having adequate health literacy. Focus group participants felt instructions were clear for PFDI-20 but had trouble understanding many questions due to unfamiliar terms.  Participants disliked the PFDI-20 format and length.  Participants understood most of the PFIQ-7 questions and liked the table format but felt it would be hard to recall a three month timespan. Participants recommended assistance with questionnaire completion from clinical staff and gave mean overall ratings (0-10/worst-best) of 5.4 for PFDI-20 and 8.0 for PFIQ-7.

Higher reading level is needed to interpret PFIQ-7 compared to PFDI-20, though focus group participants preferred the structure of the PFIQ-7 to that of the PFDI-20.  Focus group participants and trained expert consensus reviews revealed concerns regarding formatting, organization, and language for both questionnaires.

Knowledge of potential barriers to understanding and completion may improve utilization of PFDI-20 and PFIQ-7 in women with low health literacy. Assistance with form completion, either from clinic staff or research team members, may improve quality of data collection in respondents with low health literacy.

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Hadden, K. The Stoplight Method: A Qualitative Approach for Health Literacy Research. Health Literacy Research and Practice. 2017;1(2):e18-e22