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Perspectives on Suvivorship Care Planning

INTRODUCTION

Moderator: Ms. Caroline Huffman


To further understand the opportunities and challenges associated with cancer survivorship care planning, the Institute of Medicine (IOM) commissioned work from three qualitative research groups:

  1. Rebecca Day and Reynolds Kinzey of Kinzey & Day Market Research conducted focus groups among cancer survivors.

  2. Catherine Harvey and Marsha Fountain of The Oncology Group conducted interviews and focus groups among nurses.

  3. Annette Bamundo of Bamundo Qualitative Research conducted interviews with oncology physicians and focus groups with primary care providers.

This section of the report summarizes the results of the qualitative research conducted by the individuals listed above and presented at the workshop. When interpreting the findings described below, it is important to consider the limitations of qualitative research. Insights and hypotheses, rather than firm conclusions, have been generated from these research efforts. In addition, the behavior, attitudes, and perceptions expressed in the interviews and focus groups are not necessarily representative of those of the general population or of particular population subgroups.



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Implementing Cancer Survivorship Care Planning: Workshop Summary 3 Perspectives on Suvivorship Care Planning INTRODUCTION Moderator: Ms. Caroline Huffman To further understand the opportunities and challenges associated with cancer survivorship care planning, the Institute of Medicine (IOM) commissioned work from three qualitative research groups: Rebecca Day and Reynolds Kinzey of Kinzey & Day Market Research conducted focus groups among cancer survivors. Catherine Harvey and Marsha Fountain of The Oncology Group conducted interviews and focus groups among nurses. Annette Bamundo of Bamundo Qualitative Research conducted interviews with oncology physicians and focus groups with primary care providers. This section of the report summarizes the results of the qualitative research conducted by the individuals listed above and presented at the workshop. When interpreting the findings described below, it is important to consider the limitations of qualitative research. Insights and hypotheses, rather than firm conclusions, have been generated from these research efforts. In addition, the behavior, attitudes, and perceptions expressed in the interviews and focus groups are not necessarily representative of those of the general population or of particular population subgroups.

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Implementing Cancer Survivorship Care Planning: Workshop Summary PERSPECTIVES OF CANCER SURVIVORS Presenters: Ms. Rebecca Day and Mr. Reynolds Kinzey Three focus groups were conducted among cancer survivors to learn more about follow-up care that is currently being provided, levels of satisfaction with posttreatment care, receptivity to the concept of a Survivorship Care Plan, and reactions to a specific draft care plan template that would summarize a particular patient’s cancer treatment and specify a plan for follow-up care (see draft template in Appendix E). The composition of the three groups was as follows:1 Older cancer survivors (age 56 to 70), both men and women, Younger women survivors only (age 25 to 55), and Younger men only (age 25 to 55). 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. All groups were held in Fairfax, Virginia, on April 5, 2006.2 Views on Follow-Up Care In general, participants reported that they were satisfied with their follow-up care, most rating it 7 or above on a 10-point scale on which 10 means “completely satisfied.” Only a few expressed open dissatisfaction initially. In describing their follow-up care, it became evident that satisfaction was high for the medical or clinical aspects of their care; however, many expressed dissatisfaction with their physician’s lack of attention to their psychological needs. One man said, “They are very good clinically, but there wasn’t much attention paid to the psychological aspect, just very clinical.” And an older person said, “They also did nothing in terms of follow-up, in terms of the psychological follow-up, nutrition, exercise, support groups, none of that, and I know some of the hospitals and doctors do things that way, but even a sheet of paper would have been nice, so I was not struggling on the Internet.” Older patients, more of whom have survived past the 1-year mark, and 1 The first (older) group was led by Ms. Day, the all-women group was led by Ms. Day, and the all-men group was led by Mr. Kinzey. 2 Fairfax is a fairly affluent community and group membership reflected this. For example, all group members were well educated and had searched the Internet for information on their cancer. Responses to survivorship care planning would probably have been different if the groups had been held in a rural area or among individuals of low socioeconomic status.

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Implementing Cancer Survivorship Care Planning: Workshop Summary younger women were the most likely to vividly describe feeling somewhat “abandoned” after active care, and they even described the difference in using the word “plan.” They said that 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. One woman, for example, said that she felt, during active care, that she was in the front seat of the car. Somebody was driving, they were going along, and she could see where they were going. As soon as she finished her active care, she had to get into the backseat, and then she did not know and could not see what was going on. Some men also agreed and said that they felt their follow-up care was “sporadic.” At least some participants in all three groups complained that they found their specialist (oncologists, urologists) “uncommunicative” and even “uncompassionate” or “uncaring” during follow-up. Younger women were not only the most vocal about this, but also they were much more likely to report switching oncologists because of the problem. Men were more reticent about complaining about any aspect of their care, but they said very directly that their physicians had not done a good job of meeting their psychological needs. They agreed that counseling should be part of follow-up care. One also pointed out that physicians need to be more active in this area with men, precisely because men are so reluctant to seek out psychological help. Men particularly said that physicians had not even warned them about the possible sexual consequences of their treatment. One man said, “I think they treated everything that was physical, but if I wanted any support—mental health, anything like that—I would have to seek it out. It was available, but it wasn’t like I was offered it or it was talked about at all.” One woman pointed out in a similar way that she had not even considered that she might need spiritual counseling, but if a plan had suggested it, she might have understood her need better. Relatively few participants seemed to have been directed to support groups, but those who had used such groups seemed to have benefited tremendously. One of the participants said, “I don’t feel cared for. The treatment ended, and then you are out the door of the hospital, and you don’t know what happens next. I don’t have any information about what the effect might be on the rest of my life.” Another group member said, “Posttreatment is really important for your peace of mind, if nothing else. I was terribly fearful. I woke up in the middle of the night. I felt like I was just dropped.” Reactions to Survivorship Care Plans Participants in all three groups expressed a great desire for a written follow-up plan. Only one or two members in the three groups had received

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Implementing Cancer Survivorship Care Planning: Workshop Summary anything in writing. Most received information orally, but some were told only when their first follow-up appointment was scheduled. One participant said, “At least in my situation, when I was being discharged, the doctor came in and sat down and talked to me, and you are going through a fire hose of a lot of stuff. You are happy, but there is a lot of stuff. There is just so much going on. I nodded and smiled a lot, and I am not sure how much I took in. If I had had something that I could have carried home and then read over, maybe later, you know, it would have put things in perspective a little more. Walking out of there, probably the only thing I remember is that I got an appointment in three months. That was it.” Most participants said that a written follow-up plan would have given them greater “peace of mind” and would have made them feel better psychologically (one said that having a plan would reassure him that the doctors were confident that he “would be around to follow the plan” and that he had survived). Given what the participants said they felt about the failures of their doctors to provide for their psychological needs, this seems very significant. One or two of the younger women suggested that they might have had significantly better clinical outcomes if they had been given better supervision during follow-up care. Participants also said that having a follow-up plan “in front of them” would have been very helpful. Many said that they had been overwhelmed at the end of active treatment, and they 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. Participants were very clear in demanding that everything be written in lay terms. Generally, group members said, the plan needed to be given in both paper and digital formats. They liked the idea of a paper copy in a binder form 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. There was an expectation that the specialist (oncologist or urologist) would complete the plan with necessary information. Most participants said that their primary care physicians were not very involved with their follow-up care, and virtually none was using oncology nurses or social workers for follow-up care (some said that oncology nurses had been extremely helpful during their active treatment, but not with follow-up). Receiving a written plan at the final session of their active care was viewed favorably by most participants, although some suggested that a written plan, including follow-up care, should have been given to them when they began active treatment (they commented that the plan could always be changed, according to how treatment went). Participants were generally very receptive to the template they were

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Implementing Cancer Survivorship Care Planning: Workshop Summary shown.3 They did not, however, like the use of the term “cancer survivor” in the title (even though most, if not all, generally found the term acceptable in general). They suggested that the plan should be titled something “more descriptive,” such as “Cancer Patient Follow-Up Care Plan.” 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. Men particularly seemed to want something very specific to them to avoid “information overload.” Some of the specific content areas that were recommended by group members included contact information for providers (including e-mail); the location where tests were done; normal ranges for test results; risk of recurrence or second cancer; specific information related to worrisome signs and symptoms; a follow-up schedule; and recommendations for diet and good health. Finally, participants in all groups strongly agreed that they would have wanted this kind of plan in writing. Summary of Key Observations from Qualitative Research There appears to be strong patient demand for a written follow-up plan for cancer patients, and a template should be developed and distributed to cancer specialists for their use. The proposed template appears to be on target both in terms of organization and format, although it should use a more descriptive title, such as Follow-Up Care Plan for Cancer Patients. The more individualized and personalized the care plan is for the patient, the more helpful it will be. Obtaining full participation among health care providers will be key to the development and implementation of these plans. The plans could be given in both paper and digital formats. The paper copy may be most useful if kept in a loose-leaf binder so that information can be added. For the digital format, the possibility of Web-based formats could be considered, although a CD or even a file that can be sent through e-mail may be sufficient. 3 A copy of the draft template that was tested in this qualitative research is included in Appendix E. 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.

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Implementing Cancer Survivorship Care Planning: Workshop Summary PERSPECTIVES OF NURSES Presenter: Dr. Catherine Harvey Three focus groups were held with nurses during the Oncology Nursing Society (ONS) annual meeting in Boston, Massachusetts (May 4-7, 2006). Nurses were asked about their current and potential roles in providing posttreatment survivorship care, reactions to the draft templates, and suggested approaches to adoption of survivorship care planning. The focus groups also addressed perceptions that nurses have of patient and family needs at the juncture between active treatment and the transition to extended follow-up. Special efforts were made to identify nurses in community-based physician practice settings and, in addition, advanced nurse practitioners who currently function in expanded roles in outpatient and/or physician practices. There were 34 nurses representing various practice settings: academic centers (13), hospital-based (6), and private practice (15). Of them, 16 were certified as oncology nurses, and a number of others were certified through organizations representing nurse practitioners. More than half (19) of the nurses were employed and paid by a third party, not the physician in their practice. The remaining nurses (15) were dependent on a physician for their salary as part of their office-based responsibilities. If nurses are to be compensated for some aspects of survivorship care planning, there will have to be acceptance of such involvement on the part of hospital administrators and office-based physicians. About half of the nurses worked in environments in which electronic medical records were in use. In terms of the potential nursing workforce that might be available to provide survivorship care, about 3,000 certified nurses have an advanced oncology certification. In the past year, the ONS split the certification exam between advanced nurse practitioners, who are considered clinical nurse specialists, and nurse practitioners. ONS reports that it has about 1,600 nurse practitioner members. These Advance Practice Nurses could play an important role in creating and implementing survivorship care plans. The focus groups explored existing clinical practices and survivorship programs and examined: Current development and use of care plans and transition from active treatment to surveillance; Perceived (and observed) needs of patients and families as they complete active therapy and transition to extended follow-up; Reaction to the proposed content of care plans and treatment summaries;

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Implementing Cancer Survivorship Care Planning: Workshop Summary The role of nurses in the survivorship care planning process, including levels of participation and needed skill sets; and Barriers to implementation of care planning. Current Practice In describing current survivorship care practices, nurses acknowledged that there is not a formalized approach to the posttreatment transition period. Most of the nurses agreed that patient education and treatment planning at the initiation of treatment had improved markedly over the past 15 years. Chemotherapy teaching has been institutionalized so that most practices now have packets of materials reviewing what chemotherapy is, the treatment side effects, signs and symptoms to watch for, and guidance on when to call for assistance. If this model were applied to the posttreatment transition, there would be some synergy at the beginning and end of primary treatment. Most nurses reported that some informal activities are in place, for example, routine conversations after treatment about the critical importance of follow-up, plans for surveillance, and the schedule for visits. A distinction was often made between what happened in the short term (within 2 years) and the longer term surveillance period. When they were asked whether there was any kind of “handoff” of patients following treatment, variations in practice emerged. Some nurses indicated that patients returned to their primary care physician at about 5 years, while other nurses reported that handoff practices were inconsistent and could vary by practitioner or by disease. Nurses in academic programs were more likely to have a formalized handoff to some kind of a survivorship or long-term follow-up program. The handoff process was usually not well defined. In some cases, the volume of survivors in their active treatment clinics necessitated the development of survivorship programs because the medical staff could not handle both survivors and their patients in active treatment. Nurses Perceptions of Survivors’ Needs Nurses observed that patients often felt abandoned or “cut loose” following their treatment and were often uncertain and anxious about what was going to happen next and who should be seen for various aspects of their care. It used to be common practice to have end-of-treatment celebrations for patients, but this has been largely discontinued because of the adverse psychological consequences for those who, 2 or 3 months later, have a recurrence. There is now a recognition that it is important to ac-

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Implementing Cancer Survivorship Care Planning: Workshop Summary knowledge this new survivorship phase of the cancer experience and to let patients know how nurses can help. During the active treatment phase, medical oncologists often manage comorbid medical conditions, but at the end of active treatment, there is an expectation for patients to return to their usual provider for hypertension or diabetes management. This handoff causes some confusion among patients. Concerns about finances and time arise when patients realize that they are scheduled to see their radiation therapist, surgeon, and oncologist for follow-up. So while patients report being anxious about being cut loose, they are also concerned about the number of visits they have scheduled with so many different practitioners. Nurses reported a common set of questions asked by patients at the conclusion of treatment: What is going to happen to me now? How long are my side effects going to last? When am I going to feel normal again? What can I do? How am I going to feel about returning to work? What level of physical activity should I have? What about my sexual feelings and function? Nurses pointed out the importance of managing patient expectations in the first 6 months after treatment. Helping patients deal with the fear of recurrence was identified as a key nursing role. Some patients really look forward to their last treatment but then feel anxious because they sense that the treatment has been “keeping them going.” These anxieties relate to not being able to do something active at that point. Nursing Roles in Survivorship Nurses in the groups believed that they could develop and deliver sur-vivorship care plans from the materials they had available to them and the experiences they had with their patients. The nurse practitioners, as a group, noted that this role was consistent with their training, skills, and experience. They stated “We ought to do it. We can do it. We want to do it, and we will try to do it.” The evolving nature of surveillance guidelines and the rapidity with which cancer treatment is advancing were felt to pose major challenges to implementing care planning. They recognized the need to keep the care plan updated and, in some instances, change recommendations for the patient. 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. This could be accomplished by having the physician say to a patient, “We have asked this person to assume this role for you. They have the skills, the competence and the referral base to help you with this.” Physicians would also need to approve of nurses allotting time in their schedules for this role. In terms of billing, the 99211 Evaluation and Management (E&M)

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Implementing Cancer Survivorship Care Planning: Workshop Summary code is available for patient education when another code is not billed on the same day. For chemotherapy counseling, a number of practices have the physician provide some information regarding treatment on the first visit, and then schedule time with the nurse the next day for additional education and counseling. Because the patient is not seeing the physician that day, the 99211 billing code can be used. The 99211 code is associated with very low payments, and it does not actually cover the nurse’s time spent counseling. When patients come in for a separate counseling visit, they can avoid having to absorb too much information at once. However, scheduling multiple visits may not work well for those with transportation problems or who live in rural areas. In terms of referrals, although nurses reported knowing who to call for social work or nutritionist support, most acknowledged that they do not have formalized referral mechanisms. If patients were routinely screened to assess their need for support services, there were concerns expressed by nurses regarding the adequacy of local resources. Many office-based practices depend on the hospital-based social worker. A few office-based nurses had a system in place for social workers and/or dieticians to work with them, but this arrangement was not common. Components of the Care Plan Participants in the focus groups were asked to itemize important elements of survivorship care plans before they were shown an example of a care plan template. Their suggestions, summarized in Box 3-1, included a plan for surveillance, the postrecovery treatment period, and the long term. They recommended that the treatment summary be included at the end of the plan. Language and how information is presented was viewed as critical. Nurses pointed out that many patients have difficulty understanding written materials and that any information provided had to be in lay terms and at a sixth grade reading level. There were concerns about raising anxiety and a need to craft the language so as to not raise fear. Important also is the need to be culturally sensitive. The care plan should be viewed as being delivered to someone, not necessarily handed to them, so attention must be paid to the quality of the interaction with patients at this juncture. The nurses felt strongly that the treatment summary should go at the very end of the plan. This “future first, history last” approach was viewed as addressing immediate concerns and focusing on the positive and hopeful aspects of survivorship. The focus group participants did not like the title “Survivor-ship Care Plan” for this document and suggested alternatives: Cancer Recovery Plan; Cancer Wellness Plan; End-of-Treatment Care Plan, Prescription for Living; and Cancer Rehabilitation Plan.

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Implementing Cancer Survivorship Care Planning: Workshop Summary BOX 3-1 Elements of the Survivorship Care Plan Suggested by Nursing Focus Group Participants Surveillance plan Immediate Longer-term Posttreatment recovery period Expectations of next few months Port removal Side effects management Rehabilitation Psychosocial issues Longer term issues and risks Importance of ongoing evaluation for long-term effects/recurrence/second malignancy Treatment summary Care/treatment to date Pathology report A suggestion to facilitate nursing involvement in care planning was the establishment of a website for current surveillance guidelines. Without such a resource, it would be difficult for nurses to keep up with the issuance of new guidelines or changes in existing guidelines. Alternatively, having the guidelines embedded in an online survivorship plan template would ease access to the latest guidelines. Nurses suggested that the care plan be viewed as an active and not a static document and felt that, given the rapid pace of advancement in oncology, the plan would need to be updated at least annually or when the patient’s disease status changed. One subgroup of patients may require special attention: those who never get off therapy. Nurses report that they have many patients in their practices who are stable and receiving maintenance therapy, but they need surveillance education and some of the same transition education as those who have completed their treatment. Nurses indicated that how the care plan is packaged is important. They said it should “look important, feel important, and be important.” The value of the document needs to be emphasized as it is given to patients in a good binder, and the materials need to be organized in such a way that when other providers are consulted, the binder will provide easy access to all necessary information. Legal issues and the need for a disclaimer were discussed. Nurses were

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Implementing Cancer Survivorship Care Planning: Workshop Summary concerned that as surveillance guidelines change and as information about late effects becomes available, the care plan should indicate that the recommendations reflect the best current thinking and that the plan may need updating as recommendations change. Nurses felt that, like hospital discharge summaries, care plans should be required by the Joint Commission on Accreditation of Healthcare Organizations. After a hospital-based nurse discusses discharge plans with a patient, he or she signs and the patient signs the plan. Nurses thought this formal agreement following the interaction would be appropriate in the context of care planning following cancer treatment. Several concerns were raised about the interface between specialty and primary care. Nurses felt that the roles of oncology and primary care physicians needed to be clearly delineated and that it is the responsibility of the oncology community to educate referring physicians about posttreatment surveillance and late effects. The handoff from oncology to primary care also needs to be more actively managed to avoid duplication of effort or having patients fall between the cracks and not receive needed follow-up care and services. Barriers to Care Planning 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. Many nurses are, however, skilled chart abstractors, because they have experience in data collection for clinical trials. It is not only nursing time that needs to be factored in. The ability to implement survivorship care planning into practice will also depend heavily on having access to support services for patients, for example, social workers, nutritionists, and financial counselors. 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. In terms of adapting practice patterns, private office-based practices, because of their size, may have more flexibility than academic medical centers to innovate to meet the needs of survivors. In the nurses’ view, innovation will be predicated on physicians “blessing” their role in survivorship planning and committing the necessary resources. The adequacy of reimbursement to cover a survivorship visit was also a concern expressed by nurses. An office-based nurse could use a 99211 code

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Implementing Cancer Survivorship Care Planning: Workshop Summary with their own care plan. In terms of using evaluation and monitoring codes for billing purposes, he pointed out that there are two distinct activities that need to be coded. First is the preparation of the plan, whether it is a patient-centered plan or a provider-to-provider continuity-of-care plan. Second is the actual delivery of that plan and the patient education process that goes along with it. Billing for the delivery of the plan seems straightforward, but billing for the time that goes into preparing the plan is a much more involved process that requires a lot of input from many different sources. He suggested that if the current codes do not capture this activity, then it should be a very high priority to make sure that it can be captured, regardless of whoever puts it together, whether a nurse, the oncologist, or the primary care physician. As a general internist and as a person living with chronic recurring cancer, Dr. Wendy Harpham suggested that the purpose of the workshop is to figure out how to help each individual patient get good comprehensive care over the cancer trajectory. She described an image that might be helpful in deciding who the care plan should be addressed to and who should carry this record. On group trips involving many people in several cars that caravan to a destination, she insists that each patient’s luggage be in the car with that person, because whatever happens along the way, that person will be with the belongings that that person needs. Cancer survivors represent a huge group of widely divergent people trying to get to the same destination, which is good care. If the individual patient is the holder of this magnificent record, then wherever that patient is, that patient can help the doctors, the nurses, the social workers, the rehabilitation therapists, the psychologists, and the psychiatrists provide good care. Ms. Patricia Buchsel, a representative of the Oncology Nursing Society, described how advanced nurse practitioners have contributed a great deal to survivorship research and have provided leadership in a number of survivorship clinics. She pointed out that most oncology nurses do not have this level of advanced training and yet can assume many of the follow-up responsibilities that have been outlined. Ms. Kathryn Smolinski, representing the Association of Oncology Social Work (AOSW), emphasized how important a team approach is to the success of survivorship care planning. Social workers are professionally trained, skilled in counseling, and familiar with available community resources. Social workers have been at the helm of psychosocial care in oncology for over 100 years. However, she pointed out, much needs to be done to better connect patients to the many available community resources. When budget cuts hit a health care facility, oncology social workers are often one of the first professions to be cut. Ms. Smolinski and others at AOSW are working hard to overcome these staffing issues. She described physicians as a critical entry point for patients into the health care system.

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Implementing Cancer Survivorship Care Planning: Workshop Summary If a physician says psychosocial care is important, and if it is on the survivorship plan, then patients will follow through and request it. This will reinforce a team approach and facilitate a comprehensive care plan. Ms. Wendy Landier of City of Hope National Medical Center reported that, from the pediatric perspective, oncologist providers see the value of care plans but feel that they do not have time to prepare one and, second, that nurses are eager to assume a key role in care planning. She noted that the Children’s Oncology Group (COG) model uses nurses extensively in survivorship care planning. In pediatrics and in the COG, advanced practice nurses have specialized in long-term follow-up. The majority of long-term follow-up clinics are led by nurse practitioners with active physician involvement. Nurse practitioners prepare the treatment summary, sometimes with specially trained clinical research associates. Dr. Lawrence Shulman of Dana-Farber Cancer Institute observed in concluding the discussion session that, while there appeared to be some divergence in the perspectives of survivors, nurses, and physicians, there is also a tremendous amount of synergy and concrete ways to move forward to fill the gaps identified from all points of view. SMALL GROUP DISCUSSION Moderator: Dr. Sheldon Greenfield For this portion of the workshop, participants broke into small work groups of 8 to 10 members. Group members were asked to discuss the following questions, to focus on an assigned question, and then report back to the entire group: What are the essential elements of the care plan? Will a single template work? Who is responsible for creating the plan and discussing the plan with patients? What are the respective roles of oncology/primary care and physicians/nurses? What economic strategies could encourage implementation of care planning? What barriers exist to creating the care plan? How can they be overcome? Group 1: What Are the Essential Elements of the Care Plan? Ms. Sarah Davis of the University of Wisconsin Law School summarized the discussion of Group 1 and identified three purposes of care plan-

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Implementing Cancer Survivorship Care Planning: Workshop Summary ning. First, the care plan must have a “survivorship perspective” and address patients’ feelings of abandonment, maximize recovery, be based on good evidence for surveillance, and attend to the late effects of cancer treatment. Second, the care plan must be mobile. Patients need a care plan that they can take to their various providers, whether that is locally or across country because they move or are displaced because of natural or other disasters. Third, people must know whom to call to address specific issues that come up over time. She went on to state that the essential elements of the care plan should include diagnostic information, a treatment summary, a risk assessment, and the prospective plan to include both medical and psychosocial issues. Members of the group indicated that it was extremely important to clearly identify roles and responsibilities and to affirm acceptance of these roles. Having local and national resources as part of the plan was felt to be vital. A patient-friendly disclaimer was also felt to be necessary. This disclaimer should be easy to read and acknowledge the responsibility that patients have as they move forward with the plan. Finally, several group members viewed the care plan as a living document that is taken to all appointments and actively used. During the discussion period, Dr. Greenfield raised the question, “If there is a team assembled, who takes responsibility for the team? He wondered if a virtual team needs to be created, with formal sign-on. One suggestion raised was to have payers require that a team be designated before any reimbursement is provided. Others pointed out that how teams are created and work will depend on location, for example, whether care is provided in a rural or an urban setting, or in a community-based office or an academic center. A physician practicing in a five-person oncology practice suggested that dedicated triage nurses can provide case management, counseling, and referrals. Being able to provide such nursing support was viewed as being a function of the size of the practice. One practitioner estimated that a full-time nurse is needed to provide “navigational” support for every three medical oncologists. Group 2: Would a Single Template Work? Members of Group 2 thought that a single template could meet the needs of cancer survivors if there were sufficient adjunctive and supportive materials that would make the plan appropriate and meaningful to the patients and the primary care providers who would use it. Several group members felt strongly that the care plan template should be used at the onset of care, starting with diagnosis and leading up to the handoff at the end of cancer treatment. Individuals without a care plan at the outset of treatment could be given one as they end treatment. Group participants

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Implementing Cancer Survivorship Care Planning: Workshop Summary noted that the care plan should also be dynamic and amended as the cancer journey progresses and as issues arise, such as discontinuation of therapy or the onset of a psychosocial issue. Finally, some group members indicated that research is needed to evaluate the success of the care plan in improving follow-up care and outcomes. During the discussion period, some skepticism was expressed regarding the ability to rely on a single template, given the wide variation in therapies and the long-term effects associated with different types of cancers. Dr. Neil Schlackman pointed out that a single template can accommodate a range of diagnoses and treatments because, ideally, drop-down menus would be available to identify commonly used drugs and their toxicities. A single template provides a standard for common elements for inclusion. With several diverse templates already available, Dr. Greenfield recommended that a minimum standard be set that individual providers could embellish to suit particular needs. Dr. Lee Newcomer raised the possibility of insurers being able to assist in providing information to “populate” the record if the template were standardized. Insurers can easily list hospitalizations, medications, and physicians involved in the care of a patient using claims information. Standardization of the template would be critical to making these data available. Dr. Patricia Ganz and Dr. John Rainey, both involved in the efforts of the American Society of Clinical Oncology (ASCO) to develop a template, agreed that a minimum standard would facilitate implementation, especially in the context of an electronic medical record system. With general agreement on the merits of a standardized template, Dr. Greenfield cautioned that, in order for implementation of survivorship care planning to proceed, there will have to be some compromise on this standard. He cited the example of the development of quality-of-care measures in which reductionist approaches are often taken. Group members agreed that there are empirical questions related to the care plan template. How much detail is needed, and what formats work best to stimulate patient-provider interaction? What level of community-based resources are needed? Dr. Peter Raich, from the Denver Health Medical Center, suggested that, in developing care plans, patient diversity must be addressed in terms of language, culture, and literacy. Dr. Deborah Schrag described the balance that needs to be achieved between a focus on a document and on documentation standards and changing interactions between patients and physicians. Under discussion is an attempt to use the document to leverage changes in interactions. Dr. Schrag questioned whether it would be more advantageous to start with interventions to change the nature of interactions, for example, requiring psychosocial issues to be adequately addressed and then expecting the related documentation to improve. Alternatively, one could begin by requiring better

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Implementing Cancer Survivorship Care Planning: Workshop Summary basic documentation and then expecting communication to improve. Developing a standardized document is easier to accomplish than changing the culture of oncology practice and communication. Dr. Schrag characterized the document as a wedge that can be used to leverage fundamental change in practice. The inclusion of psychosocial content in the care plan template is very important, according to one group member. It can provide a prompt for the busy clinician to raise these issues and foster interaction. It was pointed out that physicians are gatekeepers and that they themselves do not have to provide psychosocial services. Sometimes it is sufficient to say, “I find it is often helpful for my patients to go to support groups. Let me give you names and references.” Having a list of services available opens the door for their use. Dr. Ferrell raised a concern that, in addition to psychosocial issues, symptom management has not received sufficient attention in developing survivorship care plans. Pain management, fatigue, and weight loss are major concerns when people are leaving cancer treatment. Symptom management will become even more significant as therapies become more toxic and as treatment becomes more prolonged. Good symptom management is a necessary component of survivorship care plans. Dr. Ganz pointed out the challenges ahead in meeting the care planning needs of 10 million prevalent cancer cases and recommended implementation of a standardized template soon with incident cases. Dr. Charles Catcher, a community-based oncologist in New Hampshire, stated that it would be difficult to implement a standardized care plan in his practice of nine physicians and six mid-level practitioners. Clinicians are very busy and involved in both day-to-day practice and research activities. Community-based practitioners will need clear guidance on how to make this concept work in practice. The realities facing many patients also need to be acknowledged. Many patients lack health insurance, making it difficult for them to get all of the clinical and social support services they need. One participant pointed out that the template is a teaching document, providing a systematic way to educate the patient. If adapted to an electronic medical record, it could potentially make patient counseling more comprehensive and efficient. Dr. Greenfield suggested that adoption of care planning could well be incorporated as a quality indicator into plans for pay for performance systems. Group 3: Who Is Responsible for Creating the Plan and Discussing It with Patients? Members of Group 3 recognized that more than 90 percent of cancer patients are cared for in the community (and not at academic medical centers) and determined that for care planning to be implemented widely, it

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Implementing Cancer Survivorship Care Planning: Workshop Summary must be practical for clinicians in office-based practices. Oncology practices vary in structure and staffing, and who will carry out care planning in any particular practice will vary. The responsibility for completing the plan will probably rest with some combination of the physician and the nursing staff. The group did not think that primary care physicians or other individuals involved in the patient’s care could complete the care plan because of their more limited access to diagnostic and treatment information. Group members noted that, ideally, clinicians would start to write the care plan at the first visit. Not knowing the entire treatment plan at the onset of treatment would make it more difficult to fill out prospectively. Increasingly, treatment plans change. For example, a patient may start with neoadjuvant therapy, but, after 8 weeks, another plan may emerge based on the results of further scans. In the short term, several group members stated that the emphasis should be placed on a posttreatment plan. In the long term, technology will permit having a prospective, adaptable document. Group members anticipated that care planning, in 5 to 10 years, will improve the standard of care and ease care delivery, but they recognized barriers to implementation. Key to implementation will be expectations set by patient and advocacy groups. Peer pressure and demands from referring primary care doctors and surgeons may also prompt adoption. Financial incentives, for example, pay for performance or better reimbursement for care planning, would help. Regulatory requirements may be forthcoming. Just as there is a Joint Commission for the Accreditation of Healthcare Organizations (JCAHCO) requirement for a timely operative note after surgery, there could be a JCACHO requirement for a cancer care plan. A combination of these pressures will help move the field forward, asserted group members. Any one of these pressures alone, however, will not be enough. During the discussion, Dr. Newcomer described ASCO’s voluntary Quality Oncology Practice Initiative (QOPI) as an example of oncologists engaging in quality improvement activities to learn and adapt their practices to better patient outcomes. Initially there were just a few practices involved, and now there are 73. Dr. Greenfield described a provider recognition program, in which doctors submit practice data and the American Diabetes Association puts summary data online by geographic area. As many as 300,000 to 400,000 patients access this information. There are relatively few practitioners involved thus far, but this activity is having a big ripple effect on practice. While there are some physicians who are voluntarily engaged in such quality initiatives as QOPI, other providers will need to be motivated through incentives. One selling point might be the potential for time saving if the care plan is completed prospectively and an up-to-date record is available at each visit, obviating the need to wade through a thick chart.

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Implementing Cancer Survivorship Care Planning: Workshop Summary Group 4: What Are the Respective Roles of Oncology/Primary Care and Physicians/Nurses? In responding to the question, “Who is responsible for discussing the plan?” members of Group 4 focused on the quality of care of survivors in community-based oncology or primary care practices. There was a recognition that as patients transition out of cancer treatment, the availability of resources can vary greatly from setting to setting. Group members suggested that the treatment plan portion of the care plan could be written and discussed by the primary oncology physician or by a nurse on the oncology team, but preferably the oncologist. Once the patient has transitioned back into primary care, the discussion of the treatment summary could be extended by the primary care physician. The group recognized that not all patients are transitioned back to primary care for their follow-up care. Those patients with comorbid conditions would be expected to have these conditions managed by primary care. Group participants suggested that a stratified approach could be adopted in which high-risk patients, such as stem cell transplant patients or patients at high risk for recurrence, continue their primary follow-up care with the oncologist. Members of the group believe that it is as important for a relatively low-risk patient, for example, one treated by surgical resection for a low-grade liposarcoma, to have a treatment summary as a higher risk patient. For the lower risk patient, the summary would help physicians understand that the cancer was not invasive or aggressive and that this surgical therapy was all that had to be dealt with in terms of late effects. Group members noted that to achieve buy-in on the concept of care planning on the part of primary care physicians, general internists, pediatricians, and obstetricians and gynecologists, involvement is needed from the respective professional societies at the ground level. These providers also need to be involved in the development of follow-up guidelines. Complexities arise in the context of survivorship care, and a multidisciplinary approach is needed as guidelines are developed, refined, and disseminated. In addition to medical and radiation oncology, it may be necessary to involve urologists and surgeons, as they may be the primary provider of oncology care. It was pointed out in discussion that surgeons vary in their facility with the multidisciplinary approach to cancer. As medical oncologists develop care plan templates and survivorship guidelines, it will be important to reach out to different societies that deal with surgical patients, for example, the American Society of Colon and Rectal Surgeons. Ms. Mary McCabe reported on experience with survivorship care planning at Memorial Sloan-Kettering Cancer Center in New York City. In pilot studies of long-term follow-up care of adult patients, communication with primary care physicians was not as extensive as expected, and investi-

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Implementing Cancer Survivorship Care Planning: Workshop Summary gators concluded that they needed to learn more about the information needs of primary care providers. Not all of the cancer patients had primary care physicians, and so making sure that all survivors have a primary care physician has been incorporated into their follow-up plan. As part of the survivorship program, a one-page care plan has been developed, and focus groups are being held with primary care providers to see how useful it is to them (see Appendix G). These groups will help the oncology providers assess how best to involve primary care in follow-up care. During the discussion it was pointed out that there are some areas of sensitivity between oncologists and primary care providers, and they should be discussed so that follow-up care can be collaborative and not duplicative. One issue that emerged from the IOM-sponsored focus groups is that oncologists do not like to “let go” of their patients. There may be uncertainty regarding primary care providers’ training and experience with cancer surveillance. Workshop participants stressed that the tension between the roles of oncology and primary care physicians in cancer care follow-up must be addressed. Dr. Greenfield asked the group to consider some options for coordinating physician response to the care plan. He asked, “If the care plan is developed by the physician responsible for oncology care, should the primary care physician be required to respond in some kind of formal way to indicate his or her agreement with the plan and commitment to implement its recommendations?” Dr. Greenfield pointed out that, if there were a requirement for a response from the primary care physician, this would ensure that communication had been established between the providers responsible for implementation. Dr. Talcott felt that it was important to not only specify on the care plan who has responsibilities for follow-up, but also to have all the people charged with some aspect of follow-up to sign off on their obligations. He likened this approach to the person who takes your order at Starbucks saying “a double tall latte,” and then having the barista repeat the order. This verification system makes sure that the order is filled and it also provides an opportunity for feedback. Members of Group 4 thought that such a system in the context of survivorship care is crucial. Dr. Greenfield also asked workshop participants to consider whether nurses could take a lead role in communicating with patients once the plan was created. He reasoned that with their expertise in patient counseling, nurses could ensure that psychosocial issues are addressed and might be able to implement the plans in a more cost-effective manner than physicians. Ms. Buchsel of the University of Washington School of Nursing reiterated the important role that nurses can play in summarizing what went on during treatment and coordinating the many aspects of follow-up care. Dr. Oeffinger distinguished the responsibility for the creation of the

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Implementing Cancer Survivorship Care Planning: Workshop Summary plan with responsibility for its implementation. Members of Group 4 envisioned a future in which the care template could be housed in a central database so that different physicians participating in the patient’s care could log in and complete sections of the form. In such an environment, the care plan could also be accessible to the patient. In the absence of information technology that would allow broad accessibility, one office would have to have the primary responsibility for completing the form, which would then be shared with other practices. Dr. Ross Martin of Pfizer Human Health advised workshop participants to focus on electronic health records as an endpoint solution to survivorship care planning. Although many health care providers do not have electronic communications, any template that is developed must be created with online applications in mind. When President George Bush appointed a National Coordinator for Health Information Technology in 2004, he announced that he wanted to see every American with an electronic health record by the year 2014. Reaching this goal will be very challenging, but any template development must proceed with the prospect of innovation in mind. In the short term, it may be possible to have secretaries or others properly trained to do a chart review to fill in some portions of the care plan. More highly skilled labor could then be responsible for verifying the information. Dr. Molla Donaldson reported that, as part of the QOPI program, there is a training program for the office staff to pull records and summarize and track information. Highly trained cancer registrars are already collecting data from medical records. They work in every state and could be considered as a potential resource for beginning the treatment summary. In pediatric oncology, clinical research associates often fill out the treatment summaries. They are verified by clinicians, whether a nurse practitioner or a physician, but they do create the summaries, and quality checks can be incorporated. Group members suggested that the individual who completed the care plan template was not necessarily the provider who would discuss it with the patient. There is some benefit to having more than one person interact with a patient over a particular issue. One group member illustrated this point by his practice of explaining a course of chemotherapy to a patient and then leaving the room to allow the team nurse to go over the treatment plan again in greater detail. His experience has been that the retention of information is better when information comes from both himself and a nurse practitioner, who has a different way of explaining things and responding to the patient. Resources will vary by practice, but group members agreed that having patients hear information more than once is helpful. Dr. Greenfield noted that how the care plan is discussed with patients, and by whom, can be tested by health services researchers.

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Implementing Cancer Survivorship Care Planning: Workshop Summary Group 5: What Economic Strategies Could Encourage Implementation of Care Planning? Ms. Buchsel, in summarizing the discussion on this topic, highlighted economic strategies to encourage care planning. She stated that reimbursement for completing the care plan template is likely to be insufficient for physician time spent on this activity. Having nurses, clinical research associates, or other trained nonphysicians complete some portions of the care plan would make it feasible from a cost standpoint. Having others involved in its completion may actually result in higher quality data, she noted. Another group member mentioned that oncologists cannot reliably report tumor-node-metastasis (TNM) staging. According to Ms. Buchsel, incentives to adopt care planning could include: (1) ASCO endorsement of care planning as an expected standard of care; and (2) adoption of care planning as a quality indicator that could be used as part of report card-type quality improvement programs or pay for performance initiatives. Patients and referring physicians may start choosing practices in which care planning is offered. Insurers have started to ask for preauthorization for chemotherapy, and this practice is going to become common as the cost of cancer drugs escalates. If the treatment plan could be used to fulfill the preauthorization documentation, then providers might be very interested in completing the treatment summary. The prospective plan for follow-up could also be considered for preauthorization. Oncology providers could, for example, list the imaging procedures and tests recommended for the next 3 years and, if approved, could meet the preauthorization requirements prospectively. This could save significant office time and resources. If the template were standardized and confined to one page, all insurers would be likely to want to use it. Group 6: What Barriers Exist to Creating the Care Plan? How Can They Be Overcome? Members of Group 6 discussed barriers to care planning, focusing on how they might be overcome. In terms of solutions, the notion of keeping it simple was reiterated by several group members. A minimum standard, not the best that there could be, should be designated for the treatment summary and the prospective care plan. To expedite care planning, group members thought that starting with a few cancers, for example, breast and colon cancer, would be advisable because surveillance and risk guidelines are already available. Advisable also is learning from the pediatric experience with survivorship guidelines and innovative strategies to communicate with survivors and their providers (see the discussion of the Passport for

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Implementing Cancer Survivorship Care Planning: Workshop Summary Care in Chapter 4). Group participants noted that demonstration projects are needed to evaluate alternate strategies for care planning. Ms. Pamela Haylock mentioned the American College of Surgeons’ Commission on Cancer surveys as an opportunity to assess care planning in hospital-based cancer programs. As an overarching goal, reeducation of both oncology and primary care physicians is needed for cancer to be considered a chronic illness. From a pediatric perspective, Dr. Jackie Casillas, from the University of California, Los Angeles, pointed out that survivors of childhood cancer face an additional barrier posed by the transition from pediatric to adult health care. A care plan may be given to the parent in the pediatric setting. An adolescent or young adult may, however, lose touch with their pediatric oncology providers as they age into adult care settings. They also need to have received a copy of the cancer care records from their parents, as they may not be able to recall any of the specifics related to their diagnosis and treatment.