Abstract
Background: Bispecific antibodies (BsAbs) are effective treatments for relapsed/refractory multiple myeloma (RRMM), but uptake remains inequitable. Outpatient step-up dosing protocols have increased access in community hospitals, but barriers such as patient awareness, understanding and acceptance of new treatments remain. This may contribute to disparities in access, particularly for underserved and racially diverse populations who already experience inequities in health care. To address these concerns, the EMMBRAce group conducted patient and public involvement engagement (PPIE) aiming to explore awareness, gather insight of lived experience, understand perceived barriers, and co-develop practical recommendations for equitable access to BsAbs.
Methods: This work was embedded within the EMMBRAce project assessing BsAbs readiness across the UK. Eleven sessions-four focus groups and seven one-to-one interviews-were conducted with 20 people living with MM. Participants were recruited via the EMMBRAce steering group and patient advocacy groups to ensure inclusion of ethnically diverse and underserved communities. Discussions were audio-recorded, transcribed and transcripts analysed using thematic analysis. Findings would guide future service development initiatives, referral templates, and educational resources for both patients and healthcare professionals to support equitable access of novel treatments.
Results: 20 participants were interviewed with an average age of 54 years (range 30-70), there were more women (55%) than men (45%). Racial identity was reflective of the UK population: White (70%), Black(15%) and South Asian(15%). All had relapsed and were receiving second line or beyond treatment with 30% currently receiving BsAbs. Those receiving BsAbs were above 40 years of age and having treatment at a tertiary centre, with one participant travelling over 2 hours across the English border to receive treatment in Wales. Interviews were held until no new discussion themes were raised. The core themes which emerged were:
1. Lack of awareness and health literacy: Many participants had limited or no knowledge of BsAbs, expressing a desire for simple, culturally appropriate educational resources. Most were unfamiliar with BsAbs and their therapeutic role. Many felt that existing patient education materials were overly complex, not culturally tailored, and not readily accessible. There was a strong call for co-created, jargon-free, multilingual resources using trusted community channels with accommodation for patients without internet access.
2. Structural and cultural barriers to access: Participants from minority backgrounds described deep-rooted mistrust in the healthcare system, shaped by experiences of racism, unconscious bias, and poor communication with clinicians. Language barriers, inadequate use of interpretation services, and culturally insensitive interactions were reported as major impediments to accessing care. These issues were seen especially at critical decision points such as at diagnosis and changing treatment. Several participants discussed chronic understaffing, impacting access to senior doctors and specialist nurses, which led patients to adapt by seeking early appointments or private care. Without addressing such systemic issues, participants felt that the quality of myeloma care will continue to be compromised.
3. Variability in service access and support: Concerns were raised about geographic disparities, limited availability of specialist nurses and support services, lack of support navigating treatment options, and lack of transparent guidance on BsAbs eligibility and pathways for patients. Participants emphasised the emotional toll of navigating complex systems alone, especially for older or socially isolated individuals.
Recommendations: improving patient education and awareness of BsAbs; enhancing cultural competency in clinical settings; standardising BsAbs implementation across regions; engage underserved communities in research and clinical trials; improving trial inclusion for ethnic minorities; and incorporating PPIE feedback into local policy and practice.
Conclusions: Our work highlights ongoing inequities in access to BsAbs and demonstrates the value of engaging patients and communities in identifying barriers and shaping solutions. For BsAbs to fulfil their transformative potential, strategies must be equity-driven, community-informed, and systematically embedded in cancer care delivery.
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