This report highlights the diversity of challenges that people with MBC face around the world. It further identifies priorities for policymakers, advocacy organisations, health system administrators and other key stakeholders to improve the quality of life for individuals with MBC. Key takeaways and priorities identified in this research include:
Support for people with MBC and caregivers is often inadequate. People with incurable diseases face numerous physical, emotional, psychosocial, family and financial hurdles, reducing their quality of life. Such conditions are made worse when they face stigma and discrimination within social groups or the workplace, compounded by limited knowledge about their disease in the general public. Policies and campaigns can help raise awareness, educate the public and enforce workplace flexibility (eg adapting the role and conditions) for individuals who want to work, but these actions vary across geographies. Underserved groups including racial and ethnic minorities, those of lower socioeconomic status, and other underrepresented populations report greater levels of adversity due to these challenges. It is critical to consider all these complex quality of life factors beyond the limits of symptoms and treatment reactions.
Optimal care delivery is dependent on numerous patient-centred factors. Best practices, such as multidisciplinary teams, shared decision-making and provision of comprehensive supportive and palliative care services, are universally recognised and adopted. However, access and quality of care vary by country and geographic location based on proximity to specialist care centres. People with MBC frequently express frustration with the inconsistency and lack of continuity for meeting their needs as they move through health systems and the stages of treatment.
Lack of workforce expertise impacts the quality of available care. A shortage of qualified and specialised healthcare professionals with expertise and experience in MBC care means equal access to quality care is not guaranteed. Further disparity is seen in access to specialty care between urban and rural populations. Healthcare providers are often unequipped with the appropriate training or tools to meet the complex care needs of people with MBC. These challenges will become more acute as the population of people with MBC grows.
Existing policies create barriers to accessing best-available care. A spectrum of policies and health financing systems means that access to treatment and care is highly impacted by the individual’s geography and economic situation. Particularly where there is no cost parity for oral medications, individuals’ realistic treatment choices can be limited. Similarly, where health technology assessments (HTAs) are not routinely utilised, are methodologically inflexible or are subject to other delays, people with MBC may lack access to the latest and most novel therapeutics. Involving individuals with MBC in the policy development process and addressing quality of life needs for both people with MBC and their caregivers should be the priority.
Incomplete data limit advances in care for people with MBC and evidence-based policy. Clinical databases for people with MBC are often incomplete, and the full burden of MBC is obscured. National cancer registries often fail to capture information on when a person with early stage breast cancer develops recurrent MBC or if the person is newly diagnosed with metastatic disease. Other priority data gaps include individual experience, quality of life and caregiver needs. Privacy and data sharing restrictions may limit collaboration between members of an individual’s care team, and policy makers should act to facilitate data sharing needs for all stakeholders. While this report presents several challenges encountered by those living with MBC, it is important to consider the actions necessary to change the status quo. Action will require purposeful multistakeholder involvement while putting those living with MBC at the centre of all decision-making. This will not be possible without the support of the MBC community.
Looking to the future, key areas of action are needed:
• Frame effective treatment as a long-term investment in patients and caregivers.
• Incentivise and align data collection initiatives.
• Commit to research and defining disparities and unmet needs for MBC patients.
• Improve quality of life for people with MBC and caregivers.
• Enhance education and knowledge transfer to prepare patients for the challenges of MBC.