Numerous challenges may exist when implementing a survivorship care program. These include barriers related to providers, survivors, community resources, and the healthcare delivery system. Although not all of these issues may be addressed here, the more common barriers to implementation and potential solutions are highlighted below.

Provider-Level Challenges

Survivorship care is increasingly provided by a collaborative care team that includes the oncologists, primary care providers, and advanced-practice providers (AAPs). The movement toward collaborative team care and focus on health maintenance is a new model for the oncology community. The well-being of the survivor requires a level of integrated coordination requiring a cultural shift in approach away from a disease-only focus.

Barriers

  • PCPs, APPs, and even oncology providers themselves may be unfamiliar with the ongoing needs of cancer survivors, including cancer-related health risks, screening guidelines, and risk reduction methods.
  • PCPs and APPs may lack the experience and expertise in managing cancer survivors with complex needs, and there may be limited local resources to assist in providing follow-up care.
  • There may be limited local resources to assist PCPs and others in the care team with providing follow-up care.
  • Barriers to communication between the oncology team and the external care team may inhibit the provision of quality survivorship care. A contributing factor is that busy oncology professionals often lack the time to coordinate needed long-term follow-up care.
  • The extended rehabilitation community may lack education and expertise or awareness of cancer survivorship issues.

Solutions

  • Regional educational programs can be established to increase provider awareness of survivorship issues and reorient toward the model of communication, coordination and collaboration. Technology (e.g. webinars) can also be helpful to distribute survivorship resources and education.
  • Advocating for the development of survivorship programs is also important to address provider-level challenges surrounding communication and coordination of care.
  • Electronic Medical Records (EMRs) and/or other technology such as patient portals and treatment summary and care plan documents can also assist in ensuring coordination and communication between the members of the care team.

Patient-Level Challenges

Barriers

  • Asymptomatic survivors may not realize the importance of ongoing follow-up care.
  • Survivors may be unaware of late- or long-term effects of cancer treatment and unlikely to seek follow-up care. As well, survivors and their family members and caretakers may be unsure who serves as the lead care coordinator.
  • Patient fear of another cancer diagnosis or of being diagnosed with a serious late effect of treatment may stop them from seeking appropriate follow-up care.
  • Many patients desire to feel “cured” and to leave the cancer diagnosis in the past, which may inhibit a survivor from seeking follow-up care.
  • Survivors at low risk of recurrence and late effects may overestimate the need for ongoing oncology care and find it difficult to transition to the PCP.
  • Survivors are members of a complex network of individuals including family members and caregivers; all members of the network experience stresses from the cancer diagnosis including depression, job security or work issues, and financial strains that may vary across time.

Solutions

  • Healthcare providers should communicate the plan for follow-up care early in the treatment process and clearly define to survivors and their family members and caretakers who will serve as the lead coordinator of care at various stages.
  • Survivors should be informed regarding their diagnosis, treatment history, and risk of developing second tumors, and/or late- or long-term effects.
  • Information should be presented in an appropriate manner to ensure comprehension (i.e. age, culture, language, and education level).
  • Survivors should be kept up to date regarding existing and newly available resources.
  • Providers must understand that follow-up care is dynamic. The care plan must be fluid to consistently assess and address changing needs of the survivor.

System-Level Challenges

Barriers

  • There is a lack of standardized guidance for the assessment and management of long-term and late effects, modes of communication and medical record technology.
  • ​A missing or insufficient support systems in place for transportation and/or paid time off work. These barriers affect survivors’ ability to travel distances to reach a specialized follow-up care center or provider.
  • The healthcare system requires independence and self-advocacy skills in order to effectively navigate it and secure services. Not all individuals are equipped with these abilities and skills.
  • Variation in insurance provisions and new healthcare system alignments under the Affordable Care Act may hinder the implementation of standard programs of survivorship care, as coverage may be continue to vary substantially from patient to patient.

Solutions

  • Models of care should be patient-centered so that services provided are appropriate to the level of care required by the individual survivor.
  • To help individuals navigate and access the healthcare system, outreach programs, resources and guidance can be strengthened, and satellite clinics can be explored to service remote areas. Develop outreach programs, resources, and guidance to assist community providers to provide long-term care for survivors of cancer.
  • To improve communication and coordination among providers and patients, and between providers, discussions about the transition process should be initiated early. Survivors, family members, and care takers should all receive education on the transition process.
  • Though not all measures may be feasible for some programs, the system of care should be required to respond to outcome measures, which are built into the program as it is developed.

Financial Challenges

Barriers

  • Survivors with multiple or complex late effects may be unemployed or underemployed and therefore unable to obtain or afford health insurance, even despite the implementation of the Affordable Care Act.
  • ​Even those with insurance may face restrictions on coverage. These restrictions affect which providers patients can see and their access to screenings, tests, and services.
  • The outright cost of care is prohibitive to uninsured survivors.
  • A lack of resources may limit the ability of providers to deliver robust survivorship care.

Solutions

  • Provide patients with information regarding government programs for adults with special needs or disabilities.
  • Develop a directory of community resources and referral options for survivors.
  • Provide survivors with access to personnel with expertise in financial and insurance issues.
  • Determine which resources are in place and how to seek reimbursement for services provided by the physician, advanced practice providers, and front office staff. See Coverage and Reimbursement.

References

  1. Silver JK. Strategies to overcome cancer survivorship barriers. PM R 2011 Jun;3(6);503-6.
  2. Establishing and Enhancing Services for Childhood Cancer Survivors: Long-term Follow-up Program Resource Guide. Children’s Oncology Group Nursing Discipline Clinical Practice Subcommittee/Survivorship in collaboration with the Late Effects Committee. W. Landier (ed). 2007.
  3. McCabe M S, Bhatia S, Oeffinger K C, et al. American Society of Clinical Oncology Statement: Achieving High-Quality Cancer Survivorship Care. J Clin Onc. Epub 01/07/13