Challenges around optimal survivorship care are shared, internationally. These include the growing number of cancer survivors together with a limited health workforce. There is good evidence that survivors experience similar symptom burdens, unmet needs, and difficulties accessing necessary care. A survey of 27 countries including low, middle and high-income countries, found major variation in the provision of survivorship care (Mollica et al 2020). All countries face challenges in providing optimal care and none consistently provides care as recommended by international guidelines. ASCO is working with international colleagues to develop new models of survivorship care (Alfano et al 2019 and Alfano et al 2019). It is clear that care should be personalized according to individual circumstances. The most appropriate model of care will depend on factors such as type of cancer and type of treatments, presence of comorbid illness, current health issues, predicted risks, and time since completing treatments.

England and Northern Ireland have significant experience with redesigned models of post-treatment care. These countries have experience with the ‘recovery package’ including holistic needs assessment and care planning, health and wellbeing events, treatment summaries and care reviews in primary care. Many survivors will be able to self-manage, provided necessary testing is continued. This redesign has been adopted for survivors of breast, prostate and colorectal cancer (Alfano et al 2019 and Alfano et al 2019).

Testing Alternate Models of Care

Recognizing that traditional, oncologist-led models of survivorship care are unsustainable, alternate models of care have been designed and tested in randomized controlled trials (RCTs). Data below discusses primary care-led care, shared care, and nurse-led care.

Primary care-led follow up
Landmark studies by Grunfeld and colleagues initially showed that general practitioner (GP, also primary care practitioner)-led follow-up is a safe, effective and acceptable alternative to hospital (cancer center)-based survivorship care for survivors of stage I-III breast cancer.1-4 Clinical outcomes, such as detection of recurrence and time to diagnosis, and health-related quality of life (QoL) appeared similar.3 Patients assigned to GP-led care reported higher satisfaction,1 and reduced costs at both the patient and health care system level.2 Subsequently, RCTs have examined GP-led follow-up for survivors of colon cancer5,6 and melanoma.7 These trials found no differences between groups in clinical outcomes (number and time to recurrence, death) or patient-reported outcomes including QoL, anxiety, and depression. GP-led care resulted in greater patient satisfaction in one study7 and reduced costs in another.5

Care shared between oncology and primary care providers
An alternative to primary care-led follow-up is a shared care model. An RCT of a structured shared care model (care shared between a GP and cancer specialist) for survivors of low to medium risk prostate cancer found no differences between groups regarding adherence to PSA testing, patients’ QoL, and other patient-reported outcomes, including distress and unmet needs.8 Patients who experienced shared care preferred this model. Shared care was also found to cost less per patient compared to usual care.8 Further RCTs of shared care are underway for colorectal9 and breast cancer.10

Nurse-led survivorship care
A 2019 review examined the effectiveness of nurse-led cancer survivorship care, compared with existing models.11 Nurse-led care appears to result in improved cognitive and social functioning and reduced fatigue in survivors.11 A Cochrane review found that GP or nurse-led (compared to oncology specialist) follow-up made little or no difference to QoL, anxiety or depression, or time to detection of recurrence.12 Meta-analysis found that nurse-led telephone supportive interventions in early and post-treatment survivorship reduced cancer symptoms with a moderate effect size (ES) (-0.33) and emotional distress with a small ES (-0.12), and improved self-care with a large ES (0.64) and health-related QoL with a small ES (0.3).13

Limitations of Research Data
These studies suggest that a number of different models of care appear safe, effective, and applicable to large numbers of survivors. Trials have generally considered survivors of breast, colorectal, and prostate cancer, or melanoma, and these models may not apply to survivors of rarer cancers. Trial endpoints have been limited to adherence to recommended testing, management of suspected recurrence, QoL, satisfaction, and costs without consideration of functional outcomes such as return to work, or management of comorbid illness; none have been powered to detect differences in survival.

International Experience Implementing New Models of Care

United Kingdom
The National Cancer Survivorship Initiative (NCSI) was active in England between 2008 and 2013, which has resulted in significant reform in post-treatment survivorship care.14,15 NCSI was a partnership between the National Health Service (NHS) and a major UK cancer charity, Macmillan Cancer Support. From 2008 to 2014, organizations in the UK tested stratified follow-up care pathways for survivors of breast, prostate, and colorectal cancer. Patients were triaged into pathways that either focused on self-management with limited routine specialist follow-up or usual care.14-17 A small group with complex multi-system issues was assigned to multidisciplinary management. Triage was initially based on risks of recurrence, subsequent cancers, and ongoing treatment-related effects. As the programs developed, functional ability, comorbidity, psychosocial issues, health literacy and confidence to self-manage emerged as equally important.14,16,17 All patients continued to see their GP for non-cancer-related care, including management of comorbid illness and health maintenance.14,16,17 They also received personalized care and support based on a brief holistic needs assessment. This assessment together with well-being information and support, an end-of-treatment summary, and a primary care review were described as the ‘recovery package’.14,16,17 Data from England and Northern Ireland suggested that personalized stratified follow-up care pathways could improve patient outcomes with more efficient use of oncology time, reduced hospital visits, and potential reduction in overall costs.18,20,21 Redesigned pathways have been estimated to result in cost savings of £90 million over 5 years in the UK.19 Program evaluation studies have shown improvements in patient activation, QoL, psychological well-being, satisfaction and lower program costs in comparison to historical controls in over 600 prostate cancer patients (£289 versus £327).18,20,21 Personalized stratified follow-up pathways for breast, colorectal, and prostate cancer are part of national cancer strategies across the UK. The US has looked to the UK experience.19

Australia
Beyond the UK, several other countries have recognized the need to improve their survivorship care delivery due to increased prevalence of long-term cancer survivors, the complexity of their needs, and clinician shortages. The Clinical Oncology Society of Australia (COSA) model of survivorship care also recommends stratified pathways determined by risk of recurrence and late effects, patient comorbidities, and the availability of resources in the patient’s local area.22 There is also a focus on helping patients to self-manage their health and on sharing care with primary care providers. Cancer Australia supports a shift to shared care for groups of cancer survivors, including people with early breast and endometrial cancer.

The COSA model recognizes the critical support provided by family and friends, and cancer support providers such as cancer charities and non-government organizations.22 Community support services address many of the care-navigation, psychosocial and information needs of cancer survivors and those affected by cancer. They also support equitable access, typically providing their services at low or no cost to service users, often in non-hospital settings close to where cancer survivors live. Australia has explored multiple demonstration models of care, with a particular emphasis on models of shared care and supported self-management, and has identified similar barriers and facilitators of success in care transformation as in the UK.23

Contextual factors relevant to implementation of reformed models of care. The majority of evidence on the effectiveness of new models of survivorship care has been generated in countries with well established, integrated primary healthcare systems such as the UK, Australia, and The Netherlands.24 Payment models are an additional contextual element that can create incentives or barriers to adoption of new models of survivorship care. Single-payer systems, such as in the UK and The Netherlands, tend to have greater levels of integration between hospital and primary care services and may have common financial drivers to adopt stratified models of cancer survivorship care. Private hospital systems, which may be less concerned by workload and depend on fee-for-service models of care, could potentially be more reluctant to transition to new models of survivorship care that reduce activity. In the US, it is recognized that shifts in payment models may be needed to incentivize further new patient visits over follow-up appointments, as well as reimbursing core components of survivorship care including self-management interventions and care planning. 

Finally, one should not underestimate the significance of top-down policy leadership to drive the development and implementation of new models of care. This is best illustrated by the UK National Cancer Survivorship Initiative, which (as above) has resulted in widespread implementation of stratified models of cancer follow-up.14,15

Resources

  • NHS England and NHS Improvement support the Cancer Alliance to ensure that every person receives personalized care and support from cancer diagnosis and onwards.
  • Macmillan Cancer Support in the United Kingdom provides resources for personalized care, assessment tools, and support plan templates.

Publications

References

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  3. Grunfeld E, Levine MN, Julian JA, et al. Randomized trial of long-term follow-up for early-stage breast cancer: a comparison of family physician versus specialist care. J Clin Oncol 2006; 24(6): 848-55.
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