Jean Sellers, RN, MSN, Clinical Administrative Director, University of North Carolina (UNC) Lineberger Comprehensive Cancer Center, Chapel Hill, and her team use volunteer lay navigators who are trained to be [ Read More ]
February 2016 VOL 7, NO 1
Transitioning from Oncology Treatment to Primary Care: An integrative review of young adult cancer survivors
Carolyn Rooney, RN, MSN, OCN, NP-C
Some of the many effects of cancer treatment include fatigue, memory/concentration changes, pain, nervous system abnormalities (eg, neuropathy), lymphedema, swelling, mouth/teeth problems, changes in weight and eating habits, difficulty swallowing, and problems with bladder or bowel control.1 Many of these effects become chronic medical issues for cancer survivors, even years after successful treatment was achieved. Oncology patients of all ages can experience serious consequences from cancer treatment, such as depression, anxiety, incontinence, and peripheral neuropathy.1 Young adult patients have a high risk for adverse, long-term, physical and psychological effects that may not manifest until adulthood.2 A qualitative research study by pediatric physicians demonstrated that adults treated for cancer during childhood had substantial morbidity: 70% of patients treated between 1970 and 1986 had ≥1 chronic conditions, and >40% had ≥1 severe or life-threatening conditions.2
Managing care for young adult cancer survivors requires a dedicated team of healthcare professionals who are knowledgeable about screening for, preventing, and treating the late effects of cancer treatment. Primary care providers, along with support groups (eg, cancer programs for adolescents and young adults), can give survivors the individualized care that they need. Although programs that support the transition for young adult cancer survivors to adult-focused primary care are becoming more accessible for patients, a care team of many subspecialists, along with the primary care provider, is necessary to ensure optimal patient care.3
Primary care providers, in conjunction with oncologists, are vital in managing health issues after completion of cancer treatment. In a quantitative research study, several medical professionals compared primary care providers and oncologists with regard to their knowledge, attitude, and practices of follow-up care.4 Only 40% of primary care providers were very confident about their own knowledge of testing schedules. Considering the anticipated shortage of oncologists, and the growth in the cancer survivor population, there is greater need for primary care providers to assume the responsibility of survivorship care, the study authors concluded. In another study, researchers reported that primary care physicians have inadequate understanding of young adult cancer survivors’ healthcare needs, and that internists and specialists who care for adults require better training in childhood-onset conditions.2
Young adulthood (age range, 18-30 years) marks a transition to independent living that often includes attending college, pursuing vocational goals, having intimate relationships, and starting a family. These are significant life changes that may further complicate the transition to adult-focused primary care. Many patients have developed a strong bond with their oncologists, and thus may experience insecurity about transition of care, especially if they have inconspicuous health issues.2 With clear guidance in place, such as the long-term follow-up guidelines for childhood cancer survivors developed by the Children’s Oncology Group (COG), primary care providers can provide optimal care for these patients as they transition from oncology care.2
To increase knowledge and confidence, to cultivate positive survivor health behaviors, and to promote successful transition from oncology care, it is important to integrate survivorship care into the teaching of internists, family practitioners, obstetricians, and gynecologists.2 Guidelines for long-term follow-up care of young cancer survivors, such as the guidelines from COG, should be clearly defined for primary care providers. When used, these guidelines assist providers in preventing complications, minimizing disease recurrence, and improving the quality of life for cancer survivors.4
The role of the nurse practitioner is an essential component of survivors’ transition from cancer care. It is enhanced through continuity of care, which can lead to more successful follow-up and promotes positive health behaviors for young adult cancer survivors. This integrative review is intended to shed light on essential aspects of the barriers to successful transition from oncology treatment to primary care among young adult survivors, including the division between oncologists, primary care providers, and survivors after the experience of cancer, as well as the factors involved in the care transition process.
The search for sources focused on previous findings related to the transition from cancer care to primary care, specifically for young adults. Scholarly publications and other sources were obtained via the Cumulative Index to Nursing and Allied Health Literature, PubMed Central, SpringerLink, Wiley Online Library, and Elsevier ScienceDirect databases. Search terms used were childhood cancer, survivorship, and transition. Studies that focused on the transition of the young adult cancer survivor (aged 18-30 years) to adult primary care, as well as studies of the knowledge and perceptions of the oncology and primary care providers involved in survivorship care, were included. Other criteria for inclusion were publications from 2010 through 2014, and publications in peer-reviewed, English-language literature. The final number of studies included was 10. The level of evidence and quality of each included study was assessed, and the studies were summarized and synthesized.
Overall, communication or consultation between providers was found to be lacking or inadequate. Continuity and quality were considered key aspects in the transition from cancer care to primary care. A survivor care plan was deemed essential to support successful transition of care for young adults. Individualization of the care plan was a major concern for patients.5 The implementation of consistent, individualized care plans assisted in the assessment and management of symptoms, enhanced communication among providers, and increased the knowledge of long-term follow-up care for healthcare professionals.5
Lack of survivorship care plans, copies of medical rec-ords, and written treatment summaries were associated with lower confidence of patients in managing their care.6 Although most primary care physicians and oncologists in one study thought that a survivor care plan would be useful, many oncologists did not provide information about late effects or symptoms of recurrence in their follow-up reports.7 Primary care providers reported that having information on histology, treatment, requirements for screening/surveillance, referral guidance, potential late effects, and symptoms of recurrence is very important, and indicated that the information they did receive was often inadequate.7
In the study by Nathan and colleagues, implementation of an individualized care plan from a cancer center, or a long-term follow-up program with appropriate recommendations, ensured primary care providers that they were delivering optimal care for every patient.8 Almost half of the primary care physicians in their study did not receive a treatment summary prior to their first visit with a survivor patient, and the majority of these physicians wished to care for survivors in consultation with a physician from a cancer center or long-term follow-up program.8 Receipt of a patient-specific standardized letter with surveillance recommendations and access to guidelines for clinical care of childhood cancer survivors from oncology specialists was the most useful way to assist family physicians in their ability to care for childhood cancer survivors, according to participants of that study.8 The majority of survivors and family physicians were satisfied with the use of the survivor care plan.9
In research by DiCicco-Bloom and Cunningham, nurse practitioners and physicians in primary care settings described their experience of information sharing with cancer survivors and treating oncologists.10 The nurse practitioners and physicians responded similarly, noting lack of interaction with patients undergoing cancer treatment, inconsistent communication with oncologists or surgeons in community and academic cancer centers, difficulty in attaining clinical information from oncologists, and lack of integrated electronic medical records or survivor care plans.10 Primary care providers reportedly had a more holistic approach to caring for these patients, focusing not just on the cancer diagnosis, but also on providing psychological and social support.10 There was a difference in the quality of communication between primary care providers and oncologists from the community versus large academic centers.10 There was less communication with oncologists from large academic centers, including fewer provider-to-provider conversations and greater lack of treatment summaries or care plans.10
Another study showed that family physicians who had a higher volume of patients, been in practice longer, and seen ≥1 survivors in the past 5 years were more comfortable caring for survivors.8 Most of these physicians were knowledgeable about yearly thyroid function surveillance, but very few were familiar with the COG guidelines for long-term breast cancer surveillance and cardiac surveillance for a hypothetical woman and survivor of Hodgkin lymphoma, aged 26 years.8 However, Casillas and colleagues found that 70% of their study’s 376 survivors identified their oncologist as the dominant care provider in terms of cancer-related testing and treatment decisions, and only 18% believed that their primary care provider would likely know about treating symptoms related to previous cancer care.6
Many of the health conditions addressed by primary care providers (eg, obesity, metabolic syndrome, stroke, cerebrovascular disease, cardiac disease, decreased bone mineral density, growth hormone deficiency, neurocognitive defects, cataracts, hepatitis, hypothyroidism, and dental disease) could be late effects of childhood cancer treatment that manifest in young adulthood.11 Although primary care providers are familiar with the treatment of these health issues, many lack the knowledge of surveillance for young cancer survivors.12 For example, a patient treated with methotrexate, glucocorticoids, and/or cranial irradiation should be ensured adequate intake of vitamin D and calcium, and be encouraged to perform weight-bearing exercises.11
More than half of the oncologists in the study by Potosky and colleagues preferred that follow-up care be led solely by oncologists, whereas primary care providers preferred a shared care model between themselves and the oncologists.4 With respect to follow-up clinics for survivorship care, primary care providers favored physician-led clinics to those led by nurses or physician assistants, and oncologists were divided evenly between the 2 types of clinics.4 More than half of the primary care providers in that study believed that they had the skills to provide follow-up care for breast and colon cancer survivors, but less than one-fourth of the oncologists believed that primary care providers possessed those skills.4 Less than one-quarter of these primary care providers were confident about caring for patients who experience late effects of cancer treatment, and >75% of the oncologists expressed a high confidence level in this type of care.4 However, almost half the primary care providers were very confident about managing the psychosocial effects of cancer treatment.4 Nonguideline imaging tests—such as chest x-rays, bone scans, and magnetic resonance imaging—were endorsed much more by primary care providers than oncologists; however, most primary care providers were accurate in their recommendations of routine testing and examination to detect recurrence of breast and colon cancers.4
Hudson and colleagues researched patients’ perspectives on physicians’ roles in their cancer follow-up care, and found that most patients believed that primary care physicians did not possess knowledge of this specialty.13 Many patients in the study reported that their primary care physician was not engaged in their cancer treatment, and mentioned that their personal relationships with their oncologists were important in follow-up care.13 Many patients noted that their primary care physician deferred and referred cancer-related questions back to the treating oncologist, presuming that the patient was still undergoing oncologic care, and several of these patients reported receiving conflicting information about when to call their primary care physician.13
Meacham and colleagues interviewed 14 healthcare providers who cared for ≥1 young adult cancer survivors in their practice, and found a high level of interest in online learning for survivor care.3 Although physicians, nurse practitioners, nurses, and social workers preferred an in-person lecture, continuing education (CE) modules were also considered a favorable method of sharing information on survivor care, neurocognitive late effects, endocrine late effects, and infertility.3 Primary care providers in that study did have the knowledge to manage late effects and participate in long-term follow-up care for young adult cancer survivors. Patients and oncologists lacked confidence in primary care providers. Changing this perception of primary care providers required enhanced communication by oncologists or providers in cancer centers to ensure continuity of care in the primary practice setting. Survivor care plans were a solution to this problem, ensuring accurate knowledge of diagnoses, treatment regimens, surveillance testing, and available community resources.12
Some late effects of cancer therapy may not arise until the third decade of life or later, when survivors may have discontinued care with their treating oncologist.3 In general, primary care providers desire to enhance their knowledge of survivor healthcare. This interest by providers is essential for improving the health of the young adult survivor population.2 Health maintenance through primary care is essential for young adult cancer survivors, a vulnerable population who need comprehensive, accessible, and affordable care. A smooth transition for these patients from cancer care to adult-focused primary care will result in healthier, longer lives. There is an obligation to educate survivors and providers on long-term health risks to ensure successful transition to primary care. This transition should be a gradual process that includes addressing the educational needs of each unique patient, their families, and primary care practitioners.2 Primary care providers should be educated using a universal tool or survivor care plan specific to each patient, thereby increasing the confidence and knowledge of testing for recurrence.4
More effective communication between oncologists and primary care providers must exist to enhance the quality of care for young adult survivors of cancer. Many primary care providers are not receiving a treatment summary from patients’ referring cancer centers.8 As our research suggests, most family physicians prefer to care for survivors in consultation with a cancer center–based physician or long-term follow-up program because of their lack of familiarity with the health risks associated with cancer occurring in childhood, adolescence, or young adulthood. Also found to be very useful was having a patient-specific letter from a specialist in which surveillance recommendations are noted.
Mandating that treatment summaries and surveillance recommendations be provided to primary care practices would help reduce survivors’ fears about seeing their primary care physician for cancer-related follow-up care. These materials should also be provided and explained to the survivors themselves to enhance health knowledge. Whether this information is supplied by an oncology program or survivor clinic, a support person should be named for each patient transitioning to primary care. Different opinions exist, and this will be unique to each patient, but patients’ visits to primary care physicians during cancer treatment can help these physicians better understand and become more familiar with the disease process and treatment effects, in turn creating an easier transition after cancer treatment is complete.10
Successful transition from oncology to primary care for young adult survivors will require additional research on supportive services, and comparisons of the cost-effectiveness of regular surveillance for late effects in primary care settings versus cancer centers. Also necessary is continued assessment of the impact of survivorship care plans, Internet-based services (including CE learning), and effects of treatment detection and prevention. Nekhlyudov and colleagues described various settings that appear to be well-suited for conducting cancer survivorship research, many of which are in early stages of development.14 The HMO Cancer Research Network has contributed to collective research in cancer survivorship, and its resources are a foundation for future study of cancer survivorship.14 This network has conducted studies of prevention, early detection, treatment, survivorship, surveillance, and end-of-life care.14
The essential aspects of survivorship research, as outlined by the Institute of Medicine report, are addressed in the Cancer Research Network research environment, which offers opportunities for future collective research.14 One essential aspect is surveillance recommendations. Testing the effectiveness of care plan components through the Cancer Research Network can be applied to existing as well as new research.14 The role of survivorship care plans is important in innovative models of care, which are being developed and tested through the Cancer Research Network, and may be used to inform and enhance cancer survivorship.14 Healthcare use and costs also are being studied through the Cancer Research Network to address concerns about the cost-effectiveness of different models of care, such as specialist and primary care. Also being evaluated are surveillance strategies (eg, imaging vs clinical follow-up), adjuvant therapies, and prevention modalities.14
Impaired communication was a common theme in our review. The Cancer Research Network has focused on strategies to improve communication and test its impact on psychosocial and health outcomes in survivorship care.14 Although advances in treatment have increased survival duration substantially, the psychosocial effects of survivorship lack precedence and research.14 The goal of the network’s research on communication and decision-making is to collect patient-oriented outcomes and integrate them into electronic medical records or survivor care plans.14 There is a growing effort to explore the effectiveness of survivor care plans for cancer survivors. Through research, health professionals can continue to establish effective surveillance strategies, and increase communication between providers.14 Future research on survivor care plans should further support the individualization of care, encouraging a patient-centered approach for young adults as they transition from oncology care to primary care.
Changes can be made to help young adult cancer survivors transition more successfully to adult-focused primary care. If primary care physicians have the ability to obtain regular progress reports directly from oncologists, the late effects of cancer therapy can be managed and minimized through primary care. Effective transition to primary care is achieved through information sharing, which means that all young adult survivors should receive copies of their cancer-related medical records, a treatment summary, and a survivorship care plan. Although most patients identified their oncologist as the most important healthcare provider for decisions regarding tests and treatment, having a survivorship care plan in place will increase the confidence of patients in primary care providers managing survivorship care.
Author Disclosure Statement
Ms Rooney has no conflicts of interest to report.
- National Cancer Institute. Facing forward: life after cancer treatment. www.cancer.gov/publications/patient-education/life-after-treatment.pdf. Updated May 2014. Accessed December 31, 2015.
- Henderson TO, Friedman DL, Meadows AT. Childhood cancer survivors: transition to adult-focused risk-based care. Pediatrics. 2010;126:129-136.
- Meacham LR, Edwards PJ, Cherven BO, et al. Primary care providers as partners in long-term follow-up of pediatric cancer survivors. J Cancer Surviv. 2012;6:270-277.
- Potosky AL, Han PK, Rowland J, et al. Differences between primary care physicians’ and oncologists’ knowledge, attitudes and practices regarding the care of cancer survivors. J Gen Intern Med. 2011;26:1403-1410.
- Keesing S, McNamara B, Rosenwax L. Cancer survivors’ experiences of using survivorship care plans: a systematic review of qualitative studies. J Cancer Surviv. 2015;9:260-268.
- Casillas J, Syrjala KL, Ganz PA, et al. How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network. J Cancer Surviv. 2011;5:371-381.
- Watson EK, Sugden EM, Rose PW. Views of primary care physicians and oncologists on cancer follow-up initiatives in primary care: an online survey. J Cancer Surviv. 2010;4:159-166.
- Nathan PC, Daugherty CK, Wroblewski KE, et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2013;7:275-282.
- Blaauwbroek R, Barf HA, Groenier KH, et al. Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan. J Cancer Surviv. 2012;6:163-171.
- DiCicco-Bloom B, Cunningham RS. The experience of information sharing among primary care clinicians with cancer survivors and their oncologists. J Cancer Surviv. 2013;7:124-130.
- Diller L. Adult primary care after childhood acute lymphoblastic leukemia. N Engl J Med. 2011;365:1417-1424.
- Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011;117(10 suppl):2335-2341.
- Hudson SV, Miller SM, Hemler J, et al. Adult cancer survivors discuss follow-up in primary care: “not what I want, but maybe what I need.” Ann Fam Med. 2012;10:418-427.
- Nekhlyudov L, Greene SM, Chubak J, et al. Cancer research network: using integrated healthcare delivery systems as platforms for cancer survivorship research. J Cancer Surviv. 2013;7:55-62.
In this community outreach example, the daunting challenges of treatment, and the impact on quality of life, drive the questions, “How can we better serve these patients?” and “Is there [ Read More ]