Health literacy and disease understanding among aging women with pelvic floor disorders.

OBJECTIVES: Few studies on health literacy and disease understanding among women with pelvic floor disorders have been published. We conducted a pilot study to explore the relationship between disease understanding and health literacy, age, and diagnosis type among women with urinary incontinence and pelvic organ prolapse.
METHODS: The study subjects were recruited from urology and urogynecology specialty clinics based on a chief complaint suggestive of urinary incontinence or pelvic prolapse. Subjects completed questionnaires to assess symptom severity, and health literacy was measured using the Test of Functional Health Literacy in Adults. Patient-physician interactions were audiotaped during the office visit. Immediately afterward, patients were asked to describe diagnoses and treatments discussed by the physician and record them on a checklist, with follow-up phone call, where the same checklist was administered 2 to 3 days later.
RESULTS: A total of 36 women with pelvic floor disorders, aged 42 to 94 years, were enrolled. We found that health literacy scores decreased with increasing age. However, all patients had low percentage recall of their pelvic floor diagnoses and poor understanding of their pelvic floor condition despite high health literacy scores. Patients with pelvic prolapse seemed to have worse recall and disease understanding than patients with urinary incontinence.
CONCLUSIONS: High health literacy as assessed by the Test of Functional Health Literacy in Adults may not correlate with patients' ability to comprehend complex functional conditions such as pelvic floor disorders. Lack of understanding may lead to unrealistic treatment expectations, inability to give informed consent for treatment, and dissatisfaction with care. Better methods to improve disease understanding are needed.