Achieving optimal self-management in hereditary haemochromatosis: Results from a community questionnaire

Background and objectives: Hereditary haemochromatosis is a chronic inherited iron overload disorder that is primarily treated with venesection. The aim of this study was to investigate factors associated with optimal haemochromatosis self-management. Methods: A national online questionnaire was developed. Questions covered demographics, and individual haemochromatosis history and management. The theory of planned behaviour also guided question development. Two logistic regression models were developed for the binary outcomes of serum ferritin within target range and intention to continue venesection. Results: There were 378 complete responses collected. Questions measuring factors of importance (P = 0.022; odds ratio [OR]: 2.284; 95% confidence interval [CI]: 1.125, 4.637), preventing complications (P = 0.017; OR: 2.967; 95% CI: 1.211, 7.265), feeling involved with doctors' decisions (P = 0.006; OR: 1.482; 95% CI: 1.121, 1.958) and control of iron levels (P