Systemic Amyloid Light Chain (AL) Amyloidosis Patient Experience Research

ABSTRACT

Background: There is limited empirical evidence exploring the patient experience and treatment needs in AL-amyloidosis. Many patients experience delays in receiving a diagnosis and research suggests they suffer from a lack of support and information about the condition, worsening the impact of the disease on their quality-of-life. In June 2021 the EMA granted marketing authorisation for daratumumab in combination with bortezomib, cyclophosphamide and dexamethasone (DBCd) to treat adults with newly diagnosed AL-amyloidosis. Previously, patients have been treated with off-label therapies for multiple myeloma. Objective(s) To develop greater understanding of the diagnosis, management of the disease, and impact on patients and carers, in the UK. Method(s) A literature review and focus groups with adults living with AL-amyloidosis and a carer. Group 1 consisted of 3 adults, group 2 of 3 adults plus 1 carer. Groups were semi-structured;discussion topics included the patient journey, impact of disease, and COVID-19. Result(s) Despite delays to diagnosis, ongoing relationships with consultants fostered good communication with patients. In the treatment pathway, patients prioritised extension of life and quality-of-life, even if side-effects from treatment impaired quality-of-life. Participants spoke highly of their healthcare teams and experiences with the National Amyloidosis Centre. Impacts on daily life and emotional well-being tended to be more prominent among patients with a more complex disease pathway. For patients, time to diagnosis, ongoing communication with a trustworthy consultant, treatment outcomes and support was important. Although generally satisfied, suggestions for change across the diagnostic and treatment pathway were recommended. Striving for consistency of care and communication was paramount, and treatment impacts on day-to-day life (e.g., through minimising side-effects and convenient administration) should be prioritised. Conclusion(s) Results have the power to better inform healthcare decisions and the development of specific treatments, prioritising interventions that align with the unmet needs and preferences of people living with AL-amyloidosis. Copyright © 2022