Hereditary hemochromatosis: patient experiences of the disease and phlebotomy treatment.

BACKGROUND: Hereditary hemochromatosis (HH) is a genetic disorder resulting in increased accumulation of dietary iron. It is associated with various clinical complications such as liver cirrhosis and diabetes. The aim of this study was to explore patients' experiences of living with HH, the diagnosis process, and phlebotomy treatment. STUDY DESIGN AND METHODS: An online survey was developed and completed by a total of 210 HH patients across the United States (n = 70), France (n = 50), Ireland (n = 40), and the United Kingdom (n = 50). RESULTS: Of the 210 patients, 30% were induction patients, 49% were maintenance patients, and 22% had never received phlebotomy. The most common route to diagnosis was by chance (42%), although most patients (87%) reported experiencing symptoms they now associated with HH at the time of diagnosis. Fatigue (60%) and joint pain (50%) were the most frequently reported current symptoms. While 87% of patients felt that treatment with phlebotomy was "quite worthwhile" or "very worthwhile," 52% of induction patients and 37% of maintenance patients experienced side effects "always" or "most of the time" after phlebotomy and 16% of patients would "definitely" or "probably" decide not to receive phlebotomy if alternative options were available. CONCLUSION: Diagnosis of HH is likely made late in many patients and subsequent phlebotomy treatment, while considered worthwhile by most, leads to concerns over side effects and inconvenience, often impacting patients' lives. Greater efforts to promote awareness of the disease and reduce the treatment burden associated with phlebotomy are required to improve detection and management of this disease.

Patients' knowledge and experience of adjuvant endocrine therapy for early breast cancer: a European study.

Little is known about patients' experience of, and knowledge about adjuvant endocrine therapy. A European survey was carried out to explore this knowledge gap. The 547 post-menopausal women with early breast cancer, from 9 European countries, completed a questionnaire about their experience and knowledge of their therapy. Forty one percent of women surveyed were not at all involved in the decision to start adjuvant endocrine therapy and only 10% were fully involved. Only 57% received information about possible side effects, 26% about the risk of their cancer returning and 15% about the possible long term effects of treatment. Older women, less educated women or those without Internet access were less likely to receive information or be involved in decision making. Women's right to information and involvement in decision making are not respected. Greater efforts are required to ensure that all patients understand how different therapies work so that they can make informed decisions.