From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies
| العنوان: | From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies |
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| المؤلفون: | Nicole Graham, Charles P. Khoury, Ryan E. Wiley, Marni Williams, Lori Laudenbach, Cindy Milne-Wren, David Page, Jayson M. Stoffman, Adrian W.K. Snihur |
| المصدر: | Haemophilia |
| بيانات النشر: | John Wiley and Sons Inc., 2019. |
| سنة النشر: | 2019 |
| مصطلحات موضوعية: | Adult, Male, Work, Haemophilia A, haemophilia, 030204 cardiovascular system & hematology, Haemophilia, Health outcomes, Hemophilia A, Recombinant factor viii, 03 medical and health sciences, 0302 clinical medicine, Quality of life (healthcare), psychological well‐being, Nursing, medicine, Humans, adherence, Clinical Haemophilia, Genetics (clinical), Factor VIII, treatment, business.industry, Hematology, General Medicine, medicine.disease, Focus group, Treatment Outcome, quality of life, Caregivers, Psychological well-being, employment, Original Article, Female, ORIGINAL ARTICLES, business, Psychosocial, 030215 immunology |
| الوصف: | Introduction Haemophilia A is a chronic disease requiring frequent intravenous infusions of recombinant factor VIII. Previous studies have shown that challenges associated with current treatments may have significant impacts on quality of life (QoL) that are as important as the health outcomes conferred by the therapy. Emerging therapeutic innovations offer the potential to mitigate treatment-related challenges, and it is therefore important to develop a better understanding of patient and caregiver experiences with existing haemophilia A treatments in order to characterize the full value of new treatments. Aim To gather firsthand perspectives from people with haemophilia A (PWHA) and caregivers on the challenges with current treatment, their impact on QoL and desired improvements in future therapies. Methods Qualitative insights were gathered from 20 non-inhibitor PWHA or caregivers of PWHA across Canada through one-on-one interviews; insights were further explored through focus group sessions to uncover overarching themes and prioritize issues with current treatments. Results PWHA and caregivers identified several challenges, including administration of intravenous infusions, coordination of treatment schedules and ensuring adequate medication and supplies. Participants described how these challenges impact psychosocial well-being, physical health, personal/social life and work. Alternate modes of administration and longer-lasting treatment effects were identified as desired improvements over current treatments. Conclusion This study emphasizes the impact that existing haemophilia A treatments have on psychological well-being, employment opportunities and adherence to treatment regimens. These considerations may help to inform decision-making for policymakers and health systems around the true value of new therapies entering the haemophilia market. |
| اللغة: | English |
| تدمد: | 1365-2516 1351-8216 |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e299325d49c138fd74ab4c4435675af8 http://europepmc.org/articles/PMC6850753 |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....e299325d49c138fd74ab4c4435675af8 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 13652516 13518216 |
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