Health Literacy and Disease Understanding Among Aging Women With Pelvic Floor Disorders

Abstract

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 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 afterwards, 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 2–3 days later. RESULTS A total of 36 women with pelvic floor disorders, aged 42–94, 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 appeared to have worse recall and disease understanding than patients with urinary incontinence. CONCLUSIONS High health literacy as assessed by the TOFHLA 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.

Instrumentos de avaliação do letramento em saúde: revisão de literatura

“…The articles that considered health literacy the response variable (n=11, 40.7%) (14,15,17,21,22,26,27,31,32,36,37) include the 5 instrument validation studies (18.5%) (22,26,31,32,37) , 4 population-based studies (14.8%) -2 in Taiwan (14,15) , 1 in Finland (27) and 1 intercontinental study (17) , -and 2 studies with diabetic patients (7.4%), carried out in Japan (21,36) . As for place of origin, studies carried out in North America predominated (n=13; 48.1%) (11,12,(18)(19)(20)23,24,(30)(31)(32)(33)(34)(35) , all of them in the United States. Six European studies were identified (22.2%): 2 from the Netherlands (7.4%) (13,29) , 1 from Ireland (3.7%) (25) , 1 from Finland (3.7%) (27) , 1 from Serbia (3.7%) (22) , and 1 jointly developed by 15 European countries (3.7%) (16) .…”

“…Concerning design, the majority of the studies was observational and cross-sectional (n= 22; 81.5%) (11,12,(14)(15)(16)(17)(18)(20)(21)(22)(24)(25)(26)(27)(28)(29)(30)(31)(32)(35)(36)(37) , and some received additional specifications: 3 were pilot studies (11.1%) (20,24,25) , 4 were multi-center studies (14.8%) (11,16,17,30) , and 5 focused on validation of assessment instruments (18.5%) (22,26,31,32,37) . Randomized clinical trials -studies that present higher levels of scientific evidence -totaled only 4 occurrences (14.8%) (19,23,33,34) , and 2 of them were multi-center studies (7.4%) (33,34) .…”

“…The other 2 studies (40.0%) proposed to develop new health literacy assessment instruments, both in the United States: Health LiTT (31) and METER (which includes many words from REALM) (32) . Health literacy was considered an explanatory variable in the majority of the articles (n=16, 59.3%) (11)(12)(13)16,(18)(19)(20)(23)(24)(25)(28)(29)(30)(33)(34)(35) . The articles that considered health literacy the response variable (n=11, 40.7%) (14,15,17,21,22,26,27,31,32,36,37) include the 5 instrument validation studies (18.5%) (22,26,31,32,37) , 4 population-based studies (14.8%) -2 in Taiwan (14,15) , 1 in Finland (27) and 1 intercontinental study (17) , -and 2 studies with diabetic patients (7.4%), carried out in Japan (21,36) .…”

“…In 14 articles (51.9%) (11,13,(17)(18)(19)(20)(21)23,24,28,30,33,34,36) , general and specific health literacy assessment instruments were used in an associated form, and the approached specialties were: Rheumatology (13,19) Endocrinology (21,36) , Surgery (33,34) (each area approached in 2 articles, 7.4%), Ophthalmology (11) , Pharmacy (17) , Cardiology (18) , Nutrition and Physical Education (20) , Pneumology (23) , Urology and Urogynecology (24) , Speech-Language Pathology and Audiology (28) , Orthopedics and Physiotherapy (30) (each area approached in 1 article, 3.7%). The main characteristics of the health literacy assessment instruments most frequently used in the selected articles are presented on Chart 2.…”

“…TOFHLA was chosen in 8 articles (29.6%) (18,19,(22)(23)(24)28,35,37) , and 1 of these studies used both versions of this test (the full and the short versions) (22) . The short version -S-TOFHLA -was the most frequent one (6 articles) (22.2%) (18,19,22,23,28,37) .…”