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• W4386886427 abstract "<h3>Background and Aims</h3> Wilson disease (WD) is a rare genetic disorder, causing copper accumulation in organs, particularly the liver and brain. Chelation therapy is required to remove excess copper and avoid development or worsening of hepatic and neurological symptoms. Chronic illness is known to impact quality of life (QoL), with lower QoL and increased risk of depression reported in WD. We report QoL outcomes in a prospective study to assess long-term outcomes in patients with WD treated with Trientine dihydrochloride (TETA-2HCl). <h3>Method</h3> Patients with WD who were withdrawn from therapy with D-penicillamine and treated for at least 6 months with TETA-2HCl were eligible for this prospective, observational study. Patients were administered their routine dose of TETA-2HCl and completed the EQ-5D-3L questionnaire at Baseline, Month 6, and Month 12. <h3>Results</h3> EQ-5D-3L questionnaires were completed by all patients (N = 51). The five dimensions of the EQ-5D-3L (mobility, self-care, usual activities, pain/discomfort, anxiety/depression) were stable. Most patients had no difficulty in mobility or performing self-care activities while on treatment with TETA-2HCl, however one (2%) patient was confined to bed and not able to perform self-care (unable to wash or self-dress) throughout the study. Some problems in performing usual activities were reported by 7 (13.7%) patients, 10 (19.6%) patients and 10 (19.6%) patients at Baseline, Month 6, and Month 12, respectively, while two (3.9%) patients were completely unable to perform any usual activities during the study. Overall, 20 (39.2%) patients, 20 (39.2%) patients and 24 (47.1%) patients experienced moderate pain or discomfort at Baseline, Month 6, and Month 12, respectively. Extreme pain or discomfort was experienced by 4 (7.8%) patients, 2 (3.9%) patients and 3 (5.9%) patients at Baseline, Month 6 and at Month 12 respectively. Moderate anxiety or depression was noted in 15 (29.4%) patients, 11 (21.6%) patients and 9 (17.6%) patients at Baseline, Month 6, and at Month 12, respectively. Extreme anxiety or depression were experienced by 2 (3.9%) patients at Baseline, Month 6 and at Month 12, respectively. <h3>Conclusion</h3> Patients with WD receiving long-term TETA-2HCl therapy generally reported good mobility, self-care and ability to carry out their usual activities. However, pain or discomfort were reported by almost half of patients. Anxiety or depression also affected up to half of patients at Baseline, although the proportion decreased substantially during the 12 months of treatment. As a clinical consequence, assessment of anxiety and depression in patients with WD is warranted." @default.
• W4386886427 created "2023-09-21" @default.
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• W4386886427 date "2023-09-01" @default.
• W4386886427 modified "2023-09-27" @default.
• W4386886427 title "P25 Quality of life in patients with Wilson disease treated with Trientine dihydrochloride: a prospective study" @default.
• W4386886427 doi "https://doi.org/10.1136/gutjnl-2023-basl.41" @default.
• W4386886427 hasPublicationYear "2023" @default.
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