Objectives: Using the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry, we aimed to investigate the health literacy of persons with MS.
Methods: In 2012, we assessed the health literacy among participants in NARCOMS, a voluntary survey-based patient registry. Respondents completed The Medical Term Recognition Test (METER) which assesses the ability to distinguish medical and non-medical words; and the Newest Vital Sign (NVS) which uses a nutrition label and 6 questions to test reading, interpretation and numeracy skills. Functional literacy is indicated by scores of 35-40 on the METER scores and scores ≥4 on the NVS. Respondents also reported their sociodemographic characteristics, disability status using Patient Determined Disease Steps and Performance Scales, smoking status, height and weight, visits to the emergency room (ER) in the last six months, and overnight hospitalizations in the last six months.
Results: Of 13020 eligible participants, 8934 (68.6%) completed the questionnaire and were US residents. Of these 78.2% were women, 95.4% were white, and 7707 (87.5%) did not smoke currently. The responders’ mean (SD) age was 57 (10.4) years. Most of them performed well on the instruments with 81.0% having functional literacy on the METER and 74.6% having adequate numeracy on the NVS. Only 90 (1.0%) participants had low literacy on both the METER (score 0-20) and the NVS (score 0-1), while 5721 (65.5%) had functional literacy/numeracy on both instruments. METER scores correlated weakly with NVS scores (r = 0.31, p<0.0001). Participants who reported being non-smokers were more likely to have functional literacy on the METER and adequate numeracy on the NVS (all p<0.0001). Participants had a lower probability of an ER visit (p=0.002) or hospitalization (p = 0.0005) in the six months preceding the survey if they had higher literacy on the METER. Similarly, participants had a lower probability of an ER visit or hospitalization if they had adequate numeracy on the NVS (both p<0.0001).
Conclusions: In the 2012 NARCOMS cohort, functional health literacy is high. However, lower levels of health literacy are associated with adverse health behaviours such as smoking and greater health care utilization.