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Journal of Clinical Oncology, Vol 25, No 16 (June 1), 2007: pp. 2270-2273 © 2007 American Society of Clinical Oncology. DOI: 10.1200/JCO.2006.10.0826 Perspectives on Post-Treatment Cancer Care: Qualitative Research With Survivors, Nurses, and Physicians
From the Institute of Medicine, The National Academies, Washington, DC; Bamundo Qualitative Research, Brooklyn, NY; Kinzey & Day Market Research, Richmond, VA; and The Oncology Group LLC, Raleigh, NC Address reprint requests to Maria Hewitt, 885 Oliver St, Victoria, British Columbia, Canada V8S 4W5; e-mail: Maria.hewitt{at}gmail.com
Purpose: Cancer survivors have many medical and psychosocial needs that are unaddressed in the post-treatment period. Qualitative research was carried out to assess how a survivorship care plan created by oncologists could improve the quality of survivorship care. Participants and Methods: Focus groups and interviews conducted with cancer survivors, nurses, primary care physicians, and oncologists provide insights into post-treatment follow-up practices and the acceptability and feasibility of providing survivors and referring physicians with a cancer survivorship care plan. Results: Cancer survivors reported satisfaction with post-treatment medical care, but felt that their psychosocial needs were not met. Survivors expressed enthusiastic support for receipt of a follow-up care plan. Primary care physicians viewed themselves as playing an important role during the post-treatment period and indicated that a written care plan for follow-up would help them improve their survivorship practices. Nurses recognized the need to improve the care of cancer survivors and suggested that they could play an active role in creating and implementing cancer survivorship plans. Physicians providing oncology care acknowledged the value of survivorship care plans, but were not inclined to complete them because such plans would not reduce other reporting and communication requirements and would be burdensome to complete given their busy schedules. Conclusion: Survivorship care planning is viewed favorably by consumers, nurses, and physicians, however there are several barriers to its adoption. Barriers may be overcome with: electronic medical records, changes in reporting requirements of insurers, advocacy on the part of patients, and incorporation of care planning in education and training programs.
Many clinical and psychosocial issues faced by individuals after their primary treatment for cancer are not adequately addressed in the post-treatment phase of care.1,2 As described in the Institute of Medicine's (IOM) 2006 report, From Cancer Patient to Cancer Survivor: Lost in Transition,3 cancer survivorship is a distinct phase of the cancer trajectory which needs to be better recognized to overcome these shortcomings in care. The IOM identified four essential components of survivorship care: prevention of recurrent and new cancers, and other late effects; surveillance for cancer and assessment of medical and psychosocial late effects; intervention for consequences of cancer and its treatment; and coordination between specialists and primary care providers to ensure that all of the survivor's health needs are met. To help ensure the delivery of this care, the IOM Survivorship Committee recommended that patients completing primary treatment be given a comprehensive care summary and follow-up plan that is clearly and effectively explained. The Committee concluded that this survivorship care plan should be written by the principal provider(s) who coordinated oncology treatment and that the service should be reimbursed by third-party payers of health care. Survivorship care planning has also been recommended by the President's Cancer Panel,4 the Centers for Disease Control and Prevention, and the Lance Armstrong Foundation.5 There are an estimated 10 million Americans alive with a personal history of cancer, all of whom are considered cancer survivors.3 Widespread adoption of cancer screening, successes in treating cancer, and the aging of the population will contribute to an even larger cohort of cancer survivors in the near future. A host of practical issues arise when considering implementation of survivorship care planning for this population: how will the demand for care plans be met? What are the essential elements of the care plan? What are the respective roles of oncology and primary care physicians and nurses in creating the plan and discussing the plan with patients? What barriers exist to creating the care plan and how can they be overcome? To further understand the opportunities and challenges associated with cancer survivorship care planning, the IOM commissioned work from three qualitative research groups to learn from the varying perspectives of cancer survivors, nurses, primary care physicians, and oncologists.
Three focus groups were conducted among cancer survivors in April 2006 to discuss post-treatment follow-up care and receptivity to survivorship care planning. The composition of the three groups was as follows: older cancer survivors (age, 56 to 70 years), both men and women; younger women survivors only (age, 25 to 55 years); and younger men only (age, 25 to 55 years). Participants had completed their primary treatment for various types of cancer (excluding superficial skin cancer) and their initial follow-up care within the past 5 years. Participants were recruited by telephone through an established focus group facility in Fairfax, VA, where the groups were held. Quotas were used in recruitment to ensure that no more than two individuals in the groups of 10 to 12 participants had the same type of cancer. Three focus groups were held among 34 nurses during the Oncology Nursing Society (ONS) annual meeting in Boston, MA, May 4 to 7, 2006. Participants were recruited by telephone and e-mail: using the ONS listserve of members of Special Interest Groups for Nurse Practitioners and Ambulatory/Office Nursing. Subjects were also recruited at the ONS meeting. To ascertain different viewpoints of the nurses, one focus group was made up exclusively of advanced practice nurses who function as midlevel practitioners (14 total), a second group included only ambulatory office-based nurses (eight total), and a third group included both types of nurses (12 total). Twenty in-depth, one-on-one, structured interviews were conducted among oncologists to obtain the unique perspectives of different oncology providers practicing in varied settings. Oncology providers included 12 medical oncologists, four radiation oncologists, three urologists, and one gynecologic oncologist. Oncologists were recruited by telephone through two professional focus group facilities in Bethesda, MD, and St Louis, MO, where the interviews were held in early April 2006. Lists of members of the American Society of Clinical Oncology (ASCO) were used to identify oncology professionals practicing in close proximity to the facilities. Two focus group sessions were conducted in early April 2006 among primary care physicians to learn of their reactions to receipt of a care plan. Nearly equal numbers of family practitioners and internists participated at each seven-member focus group session. Primary care physicians were recruited by telephone through the two aforementioned professional focus group facilities using local telephone directory listings and facility databases. After a general exploration of survivorship care, subjects were shown a copy of a draft template for a survivorship care plan. Two versions of the template were available: one was blank and the other was filled out for a typical patient with colorectal cancer. Survivors were shown the blank version and were told that the template would be personalized to reflect their clinical situation and needs. Providers were shown both the blank and completed versions and were told that they could complete the template electronically. The IOM contracted with three qualitative research companies to conduct the interviews and focus groups. To ensure a uniform approach, the investigators were given a common charge: to describe current practices/experiences regarding post-treatment follow-up care; to elicit reactions to a draft survivorship care plan template; and to identify opportunities and challenges to implementing survivorship care planning. Physician and survivor groups were audiorecorded. Nurse focus groups were attended by a note taker. Transcripts were not made and the interviews and focus groups were not subject to formal content analyses.
Perspectives of Cancer Survivors Participants in all three focus groups expressed a great desire for a written follow-up plan. Only one or two participants had received anything in writing. Many said that they had been overwhelmed at the end of active treatment, and were given so much information about follow-up care orally that they couldn't take it all in. The younger women, in particular, said that a written plan would have been very helpful in explaining to their families what they still needed to do. Survivors reported being very satisfied with the clinical aspects of their care, however, many expressed dissatisfaction with their physician's lack of attention to their psychological needs. During active treatment, they felt that there was a plan in place, and they knew what to do and what to expect. Once active care was over, however, they did not know what to do or what to expect, and some felt that they were not being cared for. The draft survivorship care plan reviewed by focus group members included sections to prompt providers to identify psychosocial concerns, document referrals, and list sources of information and services. This content was viewed by most participants as key to overcoming the absence of attention to psychosocial issues during follow-up. At least some participants in all three groups complained that they found their oncology specialist uncommunicative, lacking compassion, or uncaring during follow-up. Younger women were not only the most vocal about this, but they were also much more likely to report switching oncologists because of the problem. Men were more reticent about criticizing any aspect of their care, but they said very directly that their physicians had not done a good job of meeting their psychological needs. There was general agreement that counseling should be part of follow-up care. Relatively few participants had been directed to support groups, but those who had used support groups said that they had benefited from the information and emotional support provided. Participants generally liked the format and the content of the draft template they were shown, but participants in all groups stressed that the more personalized and tailored the treatment plan was for the individual, the more helpful it would be. Participants in all groups strongly agreed that they would have wanted this kind of plan in writing and in layman's terms. Generally, group members liked the idea of a hard copy in a binder so that information could be added, and they were very receptive to a Web-based personalized site, which their physicians could update with the latest information, including ongoing research. Two of the younger women felt that they would have had significantly better clinical outcomes if they had received a care plan alerting them to signs of late effects of treatment and the importance of supervision during follow-up care.
Perspectives of Nurses In describing current survivorship care practices, nurses acknowledged that there is no formalized approach to the post-treatment transition period. Most nurses reported informal activities (eg, routine conversations after treatment about the critical importance of follow-up, plans for surveillance, and the schedule for visits). The length of time patients were observed post-treatment within oncology practices and transitions to primary care were described as varying by practitioner or disease. Nurses in academic programs were more likely to have a survivorship or long-term follow-up program available. Such programs had often been developed because the medical staff could not handle both survivors and their patients in active treatment. There was consensus among nurses in the groups that they could develop and deliver survivorship care plans from the clinical record and their knowledge of the patient. The nurse practitioners, as a group, said that this role was consistent with their training, skills, and experience. Nurses identified three main barriers to their involvement in care planning: staffing, the recognition of a nursing role in care planning, and reimbursement. Nurses report being very busy with their current patient loads and responsibilities and indicated that current staffing levels would not permit them to incorporate care planning into their practices. The creation of the treatment summary was viewed as especially time-consuming given the lack of electronic medical records in most offices. Nurses concluded that they could assume an active role in care planning only if additional resources are allocated and practice patterns change to accommodate survivorship visits. Concerns were also expressed regarding the adequacy of local support services if patients were routinely screened to assess their need for support services. All participants felt strongly that in order for nurses to assume a key role in survivorship care planning, attending physicians would need to reinforce the importance of the nursing role with patients. Physicians would also need to approve of nurses allotting time in their schedules for this role. The adequacy of reimbursement to cover a survivorship visit was also a concern expressed by nurses. An office-based nurse could use a 99211 Evaluation and Management code for billing purposes, but the associated reimbursement would be inadequate for the time needed to both develop and administer the care plan.
Perspectives of Primary Care Physicians and Oncologists While recognizing its potential benefit, oncology providers who were interviewed were disinclined to provide this summary because they would receive no time-saving or monetary benefit as a result of doing so. Oncology providers would benefit only if the document created could replace that which is sent to insurers and the other physicians who are treating the patient. The templates presented for review would not be acceptable to private insurance companies, Medicaid, or Medicare, and were not considered to be personalized enough to send to the other physicians treating the patient. Oncology providers send all physicians involved in a patients' care letters after every visit informing them of their patient's progress. Of seemingly lesser importance to oncology providers is the belief that they would not be compensated for filling out this template. It was typically suggested that, for oncology providers to even consider filling out the template, it must take no longer than 20 minutes. Oncology providers reported rarely discharging their cancer patients to primary care physicians for follow-up after active treatment. Instead, patients are monitored for as long they live, at least annually. Oncology providers indicated that this long-term commitment provides patients with a level of assurance that any potential problems will be detected as soon as possible. Primary care physicians, many of whom have long-standing relationships with their patients, reported that they address the ongoing needs and psychological stress of dealing with cancer. However, they are inundated with work and do not have sufficient time to address all their patients' concerns. Primary care physicians acknowledged receipt of the letters from oncologists, but reported that the sheer volume of correspondence made it difficult to assess patients' status at a glance.
Cancer survivors participating in the IOM-sponsored focus groups expressed great interest in receiving a written post-treatment follow-up plan. Primary care physician focus group participants indicated that receipt of a follow-up care plan would improve their care of patients with a history of cancer. Nurse focus group participants also recognized the value of care plans and reported having the skills needed to create and implement care plans. They suggested, however, that current practice would have to change significantly to allow them to take on this responsibility. Although the oncology providers who were interviewed acknowledged the value of creating survivorship care plans, they expressed reluctance because the care plan did not appear to meet their reporting obligations to insurers and other healthcare providers involved in the patient's care. Completing the care plan also represented a time-consuming task for which there was no mechanism for adequate reimbursement. Several factors may have to work in tandem to overcome oncology providers' reluctance to create a document which summarizes a patient's diagnosis and the acute and follow-up plan of treatment. First, primary care physicians who view the summary as very helpful to their practices could ask for such a summary. Second, patient advocate groups could inform patients that follow-up care plans are a recommended component of quality cancer care and encourage patients to ask for them. Third, medical schools that educate oncology providers and the institutions where they train could encourage this practice. Fourth, insurers could reimburse oncology providers for the time spent creating the summary. The initial summary and updates could be used by insurers to preauthorize elements of care and to provide proof of service for reimbursement purposes. Lastly, steps could be taken by professional associations, institutions providing care, and consumer advocacy groups to encourage the adoption of electronic medical records, which will facilitate the creation of the summary and care plan. Virtually all participants felt that, for the document to be of value, it could not be a static snapshot of the patient's diagnosis, acute treatment, and the initial plan for follow-up treatment. Only when electronic medical records are in place will it be relatively easy for oncology providers to update the care plan. Steps could also be taken to encourage electronic medical record software designers to develop software packages that allow for the creation of the care plan document with minimal effort. Mechanisms to further the adoption of survivorship care planning were discussed at a 2-day IOM National Cancer Policy Forum Workshop held in May 2006.6 The IOM workshop was held in collaboration with the National Coalition for Cancer Survivorship and in partnership with the Lance Armstrong Foundation and the National Cancer Institute. Participants of the workshop identified further developmental work on the templates themselves as important next steps, including evaluations of the effectiveness of care planning in improving the quality of post-treatment care. The qualitative work presented here is a first step toward these development and evaluation efforts. Additional qualitative work is needed to better represent the range of survivors and providers involved in the post-treatment care of cancer patients. The behavior, attitudes, and perceptions expressed in the IOM sponsored interviews and focus groups reported here are not necessarily representative of those of the general population of survivors or providers, or of particular subgroups. As is the case in all qualitative work, insights and hypotheses, rather than firm conclusions, have been generated from the work presented here. Professional and consumer groups are actively involved in responding to the IOM Survivorship Committee's recommendations. For example, ASCO is developing evidence-based guidelines on the long-term medical care of adult cancer survivors, expanding educational opportunities related to survivorship, and cochairing with the National Coalition for Cancer Survivorship the Cancer Quality Alliance to encourage public/private partnerships to monitor and improve the care that survivors receive.7 ASCO is also developing a standardized format to summarize oncology treatment that could be used in creating a survivorship care plan.8 The November 10, 2006, special series issue of the Journal of Clinical Oncology focused on cancer survivorship and included several reviews regarding clinical and psychosocial issues,1,2,9,10 care delivery,11,12 research,13,14,15 training,16 and advocacy.17 A Cancer Survivorship Nursing Stakeholders meeting was held at the IOM in November 2006 to mobilize nurses as they move toward implementation of the IOM Survivorship Committee's recommendations. These and other actions will assist in making survivorship care planning a reality for patients completing their primary cancer treatment.
The authors indicated no potential conflicts of interest.
Conception and design: Maria E. Hewitt, Annette Bamundo, Rebecca Day, Catherine Harvey Financial support: Maria E. Hewitt Provision of study materials or patients: Annette Bamundo, Rebecca Day, Catherine Harvey Collection and assembly of data: Annette Bamundo, Rebecca Day, Catherine Harvey Data analysis and interpretation: Annette Bamundo, Rebecca Day, Catherine Harvey Manuscript writing: Maria E. Hewitt, Annette Bamundo, Rebecca Day, Catherine Harvey Final approval of manuscript: Maria E. Hewitt, Annette Bamundo, Rebecca Day, Catherine Harvey
Supported by the Lance Armstrong Foundation, the National Coalition for Cancer Survivorship, and the National Cancer Institute. Qualitative research results were presented in part at an Institute of Medicine Workshop (IOM), May 15, 2006 (A.B., R.D., C.H.). These presentations were summarized in an IOM workshop summary published by the National Academies Press. The analysis, opinions, and assertions contained herein are those of the author and are not to be construed as reflecting the views or position of the National Academy of Sciences, the Institute of Medicine, or the National Research Council. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
1. Ganz PA: Monitoring the physical health of cancer survivors: A survivorship-focused medical history. J Clin Oncol 24:5105-5111, 2006 2. Stanton AL: Psychosocial concerns and interventions for cancer survivors. J Clin Oncol 24:5132-5137, 2006 3. Hewitt M, Greenfield S, Stovall E: From Cancer Patient to Cancer Survivor: Lost in Transition. Washington DC, Institute of Medicine, National Academies Press, 2006 4. President's Cancer Panel: Living Beyond Cancer: Finding a New Balance. Bethesda, MD, National Cancer Institute, 2004 5. Centers for Disease Control and Prevention and Lance Armstrong Foundation: A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Atlanta, GA, Centers for Disease Control and Prevention, 2004 6. IOM: Implementing Cancer Survivorship Care Planning: Workshop Summary. Washington DC, National Academies Press, 2007 7. Hewitt M, Ganz PA: From Cancer Patient to Cancer Survivor: Lost in Transition, An American Society of Clinical Oncology and Institute of Medicine Symposium. Washington, DC, Institute of Medicine, National Academies Press, 2006 8. Schrag D, Donaldson M: A cancer treatment plan and summary: Re-engineering the culture of documentation to facilitate high quality cancer care, in IOM: Implementing Cancer Survivorship Care Planning: Workshop Report. Washington DC, National Academies Press, 2007 (in press), Appendix D1 9. Demark-Wahnefried W, Pinto BM, Gritz ER: Promoting health and physical function among cancer survivors: Potential for prevention and questions that remain. J Clin Oncol 24:5125-5131, 2006 10. Farley Short P, Vargo MM: Responding to employment concerns of cancer survivors. J Clin Oncol 24:5138-5141, 2006 11. Earle CC: Failing to plan is planning to fail: Improving the quality of care with survivorship care plans. J Clin Oncol 24:5112-5116, 2006 12. Oeffinger KC, McCabe MS: Models for delivering survivorship care. J Clin Oncol 24:5117-5124, 2006 13. Ayanian JZ, Jacobsen PB: Enhancing research on cancer survivors. J Clin Oncol 24:5149-5153, 2006 14. Meadows AT: Pediatric cancer survivorship: Research and clinical care. J Clin Oncol 24:5160-5165, 2006 15. Grunfeld E: Looking beyond survival: How are we looking at survivorship? J Clin Oncol 24:5166-5169, 2006 16. Ferrell BR, Winn R: Medical and nursing education and training opportunities to improve survivorship care. J Clin Oncol 24:5142-5148, 2006 17. Hoffman B, Stovall E: Survivorship perspectives and advocacy. J Clin Oncol 24:5154-5159, 2006 Submitted November 22, 2006; accepted March 12, 2007.
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Copyright © 2007 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
