Survivorship care for people affected by advanced or metastatic cancer: MASCC-ASCO standards and practice recommendations

A total of 77 participants (> 10% were people with lived experience) across 33 countries (33% were low-to-middle resource countries) achieved ≥ 94.8% agreement for seven standards and ≥ 84.2% agreement across 45 practice recommendations. Demographic characteristics of participants in are presented in Supplementary File 2, with levels of agreement for each standard and practice recommendation are presented in  Supplementary File 3. The full list of MASCC-ASCO Standards and Practice Recommendations are provided in Table 1 (The Bottom Line).

Standards of survivorship care for people affected by advanced or metastatic cancerStandard 1: person-centered care

Providing person-centered, survivorship care empowers people affected by advanced or metastatic cancer to have agency and be active partners in their care. This approach should facilitate active collaboration with trusted healthcare systems and practitioners who assess and respond to the unique needs of cancer survivors and caregivers respectively. Embedded within a person-centered approach, survivorship care and unmet needs must be regularly assessed and addressed as these fluctuate over time [4, 5, 11, 14, 24, 25, 28, 35, 36]. Areas of increased need for people affected by advanced or metastatic cancer are particularly identified in the financial, health system and information, psychological, and physical and daily living domains of supportive care [4, 5, 14, 24, 25, 36]. Survivorship care planning and discussions should use a written plan and ideally consider both clinical and personal needs and be regularly reviewed. This approach enhances adherence to care recommendations, communication with providers, and overall satisfaction with care [11,12,13,14, 20,21,22, 24, 25, 35, 37, 38]. While existing literature has not shown the necessary evidence that survivorship care plans improve clinical outcomes [39,40,41], cancer survivors and caregivers continue to value, and report benefit from such documents, supporting their use [42,43,44]. To facilitate person-centered care, a written survivorship care plan is considered fundamental for this subpopulation of cancer survivors that may have evolving treatment recommendations, treatment toxicities, and other healthcare needs that must be communicated in an ongoing fashion to multiple providers. Future research addressing the unique person-centered outcomes of survivorship care plans specifically for those with advanced or metastatic cancer is needed. In addition, self-management implemented with support and education that is tailored to capacity (including cognitive function; for example, among those with primary brain cancer or those with metastatic cancer to the brain) and health literacy is an additional powerful lever for achieving personalized high-quality cancer care, particularly for people with disease that requires complex and ever-changing regimens [11, 14, 17, 20, 25, 26, 37, 38, 45,46,47]. In the context of person-centered care for those with advanced or metastatic cancer, it is imperative to respect and support the goals and personal agency of survivors and their caregivers through a collaborative and shared decision-making process. Taking this approach ensures alignment with personal preference, despite having advanced or metastatic cancer, to have an active role in their cancer care and survivorship care provision [6, 11, 28, 35, 48, 49]. However, the fluidity of preferences must be taken into consideration for people who may be facing progression of disease, changes of treatment regimen and declines in overall health status and self-management capabilities. Hence, survivorship care should incorporate person-reported outcome and experience measures (PROMs and PREMs) that are routinely used to facilitate active cancer survivor and caregiver engagement and voices in shared decision-making and self-management strategies [11, 14, 24, 25, 28, 50, 51].

Standard 2: coordinated and integrated care

Continuity of care, care coordination, and the seamless integration of health services throughout survivorship phase are fundamental to best manage people affected by advanced or metastatic cancer. As care for these people may be more complex and involve additional healthcare providers in different disciplines and healthcare settings, providing patient navigation support is instrumental to facilitate access to appropriate and enduring care and care coordination through individualized assistance to overcome healthcare system barriers [21, 28, 29, 52,53,54,55]. Patient navigation not only improves cancer survivor and caregiver outcomes and satisfaction, but also yields economic and resource benefits, including reductions in emergency department visits, hospitalizations, and staff utilization [55]. An integrated team-care approach involving specialists, nursing, primary care, social workers and allied health with early referral to multidisciplinary and interprofessional supportive care services significantly improves the timely coordination and delivery of quality care [11, 12, 14, 20, 21, 24,25,26, 36, 49, 56, 57, 58]. This also includes timely referral to specialist palliative/end-of-life care based on needs, which is associated with improved quality of life, psychosocial outcomes, physical symptoms, and period of survival [19, 24,25,26, 48, 57, 58]. In addition, people affected by advanced or metastatic cancer often are, or feel, excluded from existing survivorship programs and resources; and may also not feel ‘celebrating survivorship’ resonates with their experiences; thus, should be offered models of peer support, such as support groups and other community-led organizations specifically targeting this patient population. These opportunities for informational support, shared experience, learning from others with similar experiences and disease trajectories, and cultivating coping strategies having positive impacts on psychological outcomes and personal empowerment [59, 60]. Lastly, different models of care have equivalent effectiveness for managing physical and psychosocial outcomes, and thus the model of care provided should be chosen based on the individual needs and preferences of people affected by advanced or metastatic cancer within various resource settings [12, 13, 17, 28, 36, 51, 61, 62]. In order to fulfill the needs of this population of cancer survivors and caregivers, building bridges and promoting close collaboration between survivorship, supportive care, and palliative care clinicians and programs is needed.

Standard 3: evidence-based and comprehensive care

People affected by advanced or metastatic cancer should not only receive the most up-to-date, evidence-based, best practice treatment, but also be provided with access to comprehensive survivorship care programs [11, 13, 14, 20, 25, 63] that continue to evolve their approach as guided by evidence. This dual approach ensures that care encompasses the broad spectrum of support required to address the multifaceted challenges experienced by people with advanced or metastatic cancer and their caregivers. Further, evidence-based and comprehensive care with multidisciplinary involvement plays a pivotal role in actively encouraging and supporting informed decision making, ultimately improving health and disease management as well as distress reduction [6, 11, 12, 14, 20, 25, 28, 48, 57]. It is also fundamental that evidence-based practice encompass culturally sensitive care and information on supportive care strategies that is not only derived from and informed by research, but also tailored to be relevant to the local context of those receiving care [6, 11, 25, 28, 35, 63]. People with different cultural backgrounds may manage uncertainty of their disease, referral to specialist palliative care, and ultimately end-of-life discussions differently [64, 65]. To facilitate continual best-practice, evidence-based care provision, it is also integral that survivorship care programs for people affected by advanced or metastatic cancer are informed by the ongoing professional development of healthcare professionals, with education programs to be delivered to all stakeholders [11, 13, 24,25,26, 29, 31, 63, 66]. Such education should include content and updates on the changing landscape of treatment and survival outcomes and cover the range of biopsychosocial issues people affected by advanced or metastatic cancer are prone to experience. Healthcare systems must address the significant barrier of resource allocation, ensuring that adequate resources are available to support staff in their ongoing educational pursuits [

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