Living with Coeliac Disease: Controlled Study of the Burden of Illness

BACKGROUND: Coeliac patients improve vastly when started on a gluten-free diet. After 10 years. however, women show a lower level of subjective health than men do. We investigated whether this could be explained by differences in the perceived disease burden. METHODS: We studied 68 coeliac patients (34 women) (mean age 57 years, range 32-75) and matched type-2 diabetes controls treated for a mean of 10 years. They were examined by a 9-item Burden of Illness (BI) protocol comprising perceived worries, restrictions and subjective outcome. The subjective health was assessed with the Short Form 36 Health Survey (SF-36) questionnaire. RESULTS: The importance of complying with the diet was ranked similarly high by male and female coeliac patients. However, women were less satisfied with the outcome at 10 years than men were, and expressed more concern about the impact on socializing with friends and having to abstain from important things in life. None of these aspects distinguished male and female diabetic patients. Coeliac women showed a higher BI sum score than men did, and this was inversely related to their SF-36 General health, Vitality and Mental Health scores. CONCLUSIONS: Coeliac women adhering to the treatment regimen for several years perceive the disease burden to be worse than men do. In the light of similar differences in their quality of life, inquiry is warranted into the way coeliac men and women are coping with the disorder.