Background/ Objective: Myelofibrosis (MF) is a severe form of Myeloproliferative Neoplasms (MPNs). It is a rare disease in Indonesia and is reportedly associated with symptoms resulting in poor quality-of-life, pre-mature mortality, disability, and loss of productivity. As the disease is rare, there are limited published information around MF, particularly in Indonesia.
Methods: A cross-sectional survey was designed and administered between November and December 2021 among practicing Haematologists-Medical Oncologists who are experienced in treating patients with MF. The objectives of the survey were to assess physician's understanding of the overall diagnosis of MF, the disease burden, current treatment practices and remaining unmet needs. Outcomes were analysed descriptively.
Result: The survey was completed by 30 respondents. The findings suggest that symptom burden is high and has a significant negative impact on quality-of-life. Treatment burden is also high which can result in high healthcare resource utilisation. Physicians expressed need for novel therapeutic options and improved access and coverage for such options. There is also a need to improve access and coverage for JAK V617F testing locally and local hospital infrastructures should be upgraded to ensure MF is accurately diagnosed. Patient may benefit from information on MPN, which may result in earlier presentation, diagnosis and treatment which can improve outcomes.
Conclusion: The findings align with previous international research reporting that symptoms and treatment burden are high, and that novel therapeutic options are needed. Additional patient research might be required to better understand the patient experience of MF and how this can be improved.
Keywords: Myelofibrosis; Unmet needs; disease burden; quality-of life.