1340 American Cancer Society Workshop on Quality of Life in Children’s Cancer: Implications for Practice and Research, January 20-22, 7995 Transitions in the Care of Adolescent and Young Adult Survivors of Childhood Cancer William E. MacLean, Jr., Ph.0.’ Genevieve V. Foley, R.N., M.s.N., o.c.N., c.N.A.A.~ Kathy Ruccione, R.N., M.P.Hn3 Charles Sklar, M.D! ’ Department of Psychology/Human Development, Peabody College of Vanderbilt University, Nashville, Tennessee. * Pediatric and Social Nursing, Memorial Sloan-Kettering Cancer Center, New York, New York. Division of Hematology-Oncology, Children’s Hospital Los Angeles, Los Angeles, California. Division of Pediatric Endocrinology, Memorial Sloan-Kettering Cancer Center, New York, New York. S Address for reprints: William E. MacLean, Jr., Ph.D., Department of Psychology, P.O. Box 3415, University of Wyoming, Lararnie, WY 82071. Received April 23, 1996; accepted May 17, 1996. 0 1996 American Cancer Society teady progress in developing effective treatments for childhood cancer over the past 30 years has created an “epidemic of survival.”’ This “epidemic” has established a need to consider a variety of important issues such as the nature and frequency of surveillance for late effects, what constitutes appropriate follow-up, and where follow-up should take place. Participants in previous American Cancer Society (ACS)- sponsored workshops on children and adolescents with cancer have advocated that “long-term survivors be followed by appropriate caregivers for life and the information regarding their status be shared with the treating institution.”’ Recommendations have also supported the creation of designated facilities to provide posttreatment follow-up of long term cancer s u r ~ i v o r s .The ~ * ~purposes of these facilities are to monitor for late effects of cancer treatment, to provide health-related teaching to patients and their families that focuses on health maintenance and prevention of future health problems, and to educate clinicians about the health care needs of cancer s u r ~ i v o r s . They ~ - ~ also provide a useful venue in which to conduct research on late effects of cancer and its treatment. Perhaps even more important in the context of this workshop is the potential for such programs to enhance the overall quality of life of survivors and their families. Recommendations regarding long term follow-up of child and adolescent cancer survivors require an examination of various transitions that act as milestones for the childIadolescent and family. Webster’s New Collegiate Dictionary defines “transition” as the “passage from one state, stage, or place to another.” This definition captures very well the transitions most crucial to long term survivors, that is, the transition from being involved in active treatment to completing a treatment protocol or the transition from off-treatment to long term survival (state),changes in locus of health care provision made neces- Transitions in CarelMacLean et al. &ARE PROVIDERS Multidisciplinary Oncology Treatment Team L - ’ Late Eflects Speclallst - Mamstream cr.0 ,-TREATMENTCOURSE Cliagnosis I ~ Active Treatment OH-Treatment Reiapse or Recurrence Retreatment Retreatment L Late Effects J Disease Progression J. Terminal Care FIGURE 1. Graphic description of care provision and treatment course for long term cancer survivors. Adapted with permission from Holland J. Psychologic aspects of cancer. In: Holland J, Frel E 111, editors. Cancer medicine. Philadelphia: Lea & Febiger, 19821175-1203. sary by entry into adulthood (stage), or the transition from active treatment clinic to off-therapy clinic (place). These transitions are depicted in Figure 1. Given the increased survival in pediatric cancer, it has been necessary to elaborate on a schematic first published by Holland.8 Common Elements of Transitions Transitions are characterized by disorganization and upheaval of previously established routines and expectations.9 People experience transitions as stressful because they present adaptational challenges, frequently evoke anxiety, and require a period of readjustment. The psychologic literature on stress and coping includes a variety of transitions including normative developmental challenges such as adolescence or middle age and family transitions such as marriage, divorce, birth of a child, or loss of a parent. Similarly, the nursing literature has long realized the significance of transitions for understanding changes in health status, in health-seeking behavior, and in health care utilization.” These perspectives inform our thinking about transitions in care and health care provision that confront pediatric cancer survivors and their families. Accordingly, we offer several suggestions that may facilitate coping with the various transitions depicted in Figure 1. First, transitions related to the cancer experience should be acknowledged by caregivers, patients, and families as are other important transitions in the child/ adolescent’s life. Second, transitions should have a clear beginning point with minimal lag time since completion of the previous phase. Third, there should be an acknowledgment that transitions are concerned with changes to facilitate a positive outcome. From these changes realistic, developmentally appropriate goals and plans need to be developed with the child/ 1341 adolescent and family. Fourth, transitions involve psychosocial issues as well as specific treatment issues. Beginnings and endings have meaning for the child/ adolescent, family, and care team. These meanings need to be acknowledged and dealt with for successful outcomes to occur. Specific consideration of these points are addressed in the three specific transitions relevant to long term survivors. Transition from On-treatment to Off-treatment This transition occurs during a variable time period between the completion of planned therapy, and the uncertain, hoped-for status of long term survivor. The significance of the transition for families is frequently underestimated by providers. Patients and families are often ambivalent about terminating use of chemotherapeutic agents known to be responsible for the cancer remission.’’ Consequently, they often report anxiety, fears, and feelings of vulnerability as active treatment ends.1’,12The protocols and treatment modalities, which have provided structure and reassurance, are replaced by a watch and wait period in which recurrence is still a possibility. Typically, patients and parents say, “I never thought stopping treatment would be even harder than starting it, but it is.” There are various clinical models being used to acknowledge the beginning of this transition. One of the most useful is a formal conference.’ The on-treatment to off-treatment transition conference has several specific goals. First, a sense of closure to active treatment should be achieved. The treating team should acknowledge the anxiety and uncertainty accompanying this change while summarizing the factual events of the treatment time. A transition conference allows an opportunity for all participants to discuss any lingering issues or unfinished business. Table 1 provides a suggested educational curriculum for patient and family education in an exit interview. Second, the conference provides an opportunity to shift from active treatment to a focus on instilling a health lifestyle perspective that reflects an understanding of the disease, completed treatment, and potential late effects. Although there may have been previous discussion of possible late effects, it is important to reintroduce this topic because the family may have forgotten or the late effects may have been less relevant in a chronologically younger child ( e g , fertility). Third, the conference provides an opportunity to accurately assess the potential of relapse. Families may feel particularly vulnerable at this juncture: having completed active treatment but not quite used to being without ongoing treatment. Fourth, there should be a focus on families reestablishing themselves. In some instances, it may be necessary to redefine the child’s baseline 1342 CANCER September 15,1996 / Volume 78 I Number 6 TABLE 1 Suggested Components of a Transition Conference -Participants should include a physician, nurse, social worker, and others who may have an important role in children’s care such as psychologist, clergy member, school liaison, or primary care physician. -Identification of parent and child concerns. -Inclusion of a pertinent summary of health history, including: name of disease, date of diagnosis, dateis) and place of treatment, responsible physicianinurse, chemotherapeutic and/or biologic agents received, primary site and organs removed at surgery, if any, amount of radiation therapy, and areas treated, if any, type of bone marrow transplant, if any, and any major treatment complications (e.g., toxicities). -Anticipated potential late effects and recommended medical follow-up. -Review of general health recommendations, according to American Cancer Society guidelines. -Names and addresses of organizations providing information, support of survivors. -Methods to notify treatment center of change of address and/or results of tests performed outside original treatment center. -Conclusion, including a written summary and Eollow-up plan. Adapted from Ruccione K. Survivorship needs and issues after treatment for childhood cancer. In: Proceedings of the Sixth National Conference of Cancer Nursing, American Cancer Society pages 931, 1992. level of functioning.I3A formal quality of life assessment could be conducted at this point so that families and providers can develop intervention plans to enhance adjustment. Fifth, the goal should be to refine and refocus that partnership of team and family to enhance child health and development. Previous patterns of communicating information, conveying a sense of shared responsibility between families and providers, and empowering parents to expect “typical” behavior from their children need to be reinforced or changed as needed. Families need to be weaned so that they begin to rely again on their primary health care provider for most health care services. Transition from Off -Therapy to Posttreatment The posttreatment transition begins as patients attain status as long term survivors. This status has been defined as either 5 years postdiagnosis and/or 2 years after completion of therapy without event^.'^,'^ The posttreatment transition does not have a clear endpoint because it is believed that these survivors should be observed for life.’m3A specific beginning to this phase occurs when the treatment team refers the ChildIadolescent for a systematic long term effects assessment. People enter the posttreatment phase at various ages (potentially 5 years to early adulthood). This wide age range influences what patient and family issues must be addressed. Specialty clinics are in a strong position to counsel patients and parents about late effects and to detect subtle late effects as early as possible given the need for specialized knowledge of the effects of various treatment components. Furthermore, the depth of experience in speciality clinics can instill a sense of security among patients and families given their current, state-of-the-artknowledge base. These specialized settings usually are multidisciplinary and articulate in some way with the primary treating teams. The objectives of these clinics are to assess the child/adolescent, to identify problems, to provide education about late effects, and to provide intervention or referral for health-related or psychosocial concerns. Some facilities provide treatment for identified late effects, others refer to appropriate specialists. Reinforcement of healthy lifestyle choices is a common theme in these programs. Posttreatment clinic visits are typically longer in duration than others primarily because the issues that are raised take longer to discuss and work through. These clinics are labor intensive for providers given the need to review voluminous patient records prior to the visit, discuss plans, identify resources for subsequent services, and provide patient and family education and support. There is a need for well prepared educational materials for families in a variety of formats for individuals with different learning styles, including print, video, or computer-based instruction. Such innovations could help to streamline service delivery by allowing information to be given consistently, accurately, and in a time and place convenient for the family. Electronic support groups, via the internet, offer the opportunity for survivors to share information and coping strategies. There is a need for improved access to computer technology, which may occur as it becomes more available through hospitals or community-based facilities such as schools and public libraries. Given the relative recent advent of long term follow-up clinics, it might be useful for existing programs to form a consortium to define standards of care, assist in the development of new clinics, develop curricula for the education of pediatric hematologists-oncologists, family health practitioners, and others, and work in concert to demonstrate to third-party payers why speciality clinics are cost-effective for long term survivors. Some have suggested that continued monitoring of cancer survivors in speciality clinics might increase anxiety and potentially stigmatize a group who are without disease and only at minimal risk for late effects. One way to minimize potential anxiety and stigma would be to formulate individualized followup plans that vary with regard to an individual’s late effects risk status. Unfortunately, at this juncture, the Transitions in Care/MacLean et al. full complement of potential late effects remains incompletely defined. Therefore, individual assessments of patients to determine their particular risk for late effects is only partially reliable. Late effects research has established the overall risk for certain aspects of treatment and risk clearly increases if therapeutic protocols included such agents as radiation, anthracyclines, and bleomycin to name but a few. Ongoing surveillance is needed to improve the knowledge base underlying late effects assessment to formulate more useful individualized risk profiles. An additional concern is the perception that follow-up clinics primarily have a research mission. The research question is an entirely separate issue. Although such clinics may provide a venue for late effects research, these clinics clearly provide important, essential clinical services that are not generally available. Systematic late effects research must be conducted on a large scale, probably by multicenter cooperative groups, with appropriate outside support. 1343 shops, traveling consultants, and practitioner training grants. Barriers to Transitions The goal of providing coordinated comprehensive care is paramount for the multidisciplinary team throughout the course of the child/adolescent’s cancer experience. Long term survival and transitional care present special challenges. A basic barrier is a lack of understanding of the need to acknowledge formally the transitions experienced by the child/adolescent. Health care providers are often familiar with the benefits of rituals to mark important milestones in the childladolescent’s development. Fewer health professionals have experienced the beneficial effects of applying those concepts to health care transitions. Centers providing formal methods of acknowledging transitions need to share their experiences more broadly. A significant barrier concerns resources. As financial considerations, particularly insurance, continue to exert pressure on patterns of care, access to Transition from Pediatric Care to Adult Care ‘Thegeneral pediatric literature has debated site of care specialized evaluation and counseling services may be questions for young people who experienced chronic constrained. Individual patients may not receive reimillnesses in their childh~od.’~’~ A consensus has bursement for survivor and transition services. Health emerged that there will be a time (generally between care facilities may be reluctant to start up specialized 18 and 25 years of age) when monitoring and routine programs. care will need to be transferred to an adult pr~vider.’~ The need for health care provider education is an There are three primary reasons for this transition. important barrier. The goal of mainstreaming pediatFirst, the knowledge, skill, and scope of practice of the ric cancer survivors, after a period of specialized aspediatric team is not likely to be sufficiently broad to sessment and with essential information loops back to meet the young adult’s needs. Second, if projections the treatment team, requires education of communityof survival of pediatric cancer are accurate, the sheer based practitioners.” These providers come from a volume of patients achieving survivor status will overrange of health care professions and work in a wide whelm follow-up clinics. Third, the transition is conrange of settings from school and college health sersistent with the typical developmental progression tovices to public health clinics. Currently, there is no ward increased personal responsibility for health care organized plan to identify and meet the needs of these in an adult context. Possible transition care providers diverse groups. include adolescent medicine specialists and internists, The tradition of pediatric oncology is that parents family practice physicians, and family nurse pracare partners in care and the ChildIadolescent particititioners. The crucial element is that these professionpates in care as developmentally appropriate. As tranals need to be knowledgeable about childhood cancer sitions occur, the patient’s responsibility increases. and late effects. What factors will increase the likeliThe individual adolescent or young adult needs assishood of the general availability of such knowledge? tance to take over roles previously held by parents. First, families and patients who have successfully Another barrier concerns unevenness of care. The made previous transitions will be very active seekers/ late effects community has written extensively about advocates for a high level of care. Their participation the physical and psychosocial sequelae of pediatric in survivor clinics will facilitate or encourage this outcancer and its treatment.18-20 Much of this information come. Second, the pediatric oncology treatment team has come from large centers with dedicated programs. needs to identify appropriate community care providSmaller institutions need to be able to secure consultaers and take an active role in their education. Third, tion services, possibly by linking to specialists using ACS can help support this effort on a national level computer technology, by forming a consortia of faciliby visiting professor programs, national conferences, ties, or formal referral. Children and adolescents cared print and video materials, continuing education workfor through pediatric cooperative group protocols and 1344 CANCER September 15,1996 / Volume 78 / Number 6 by multidisciplinary teams at specialized centers are most likely to receive appropriate long term and transitional care services. Adolescents who are not part of these systems appear to be at increased risk for inadequate follow-up care. Implications for Quality of Life Our description of transitions in the care of adolescent and young adult survivors of childhood cancer has clear relevance for a broader discussion of quality of life in pediatric oncology. The definition of quality of life adopted in this workshop directs our attention to social, emotional, and physical functioning, outcomes generally not included in evaluations of the effects of cancer and its treatment. Bradlyn et al.,’l in another article from this workshop, make a strong case for the inclusion of quality of life measures as additional outcomes and discuss a variety of conceptual and procedural issues that must be resolved before this initiative will move ahead. The agenda they propose focuses on quality of life assessment at various timepoints such as diagnosis, active treatment, end of therapy, relapse, and long term survival in an effort to determine the effects of various cancers and therapeutic approaches on social, emotional, and physical functioning. We believe that an equally worthy goal is to expand our consideration to include the process of treatment, thereby including transitions as an important clinical and research focus. Thoughtful implementation of the recommendations listed below would enhance quality of life of survivors and their families by decreasing psychologic distress associated with transitions in treatment, encouraging optimal social and emotional development, and fostering personal responsibility for health. Concurrent research would establish the significance of the proposed practices in human and economic terms. Recommendations We recommend that pediatric oncology teams recognize that transitions are an inherent aspect of total patient care. The use of transition conferences may be useful in formalizing the onset of transitions in care and in planning for the transition period. We recommend that individualized transition plans be developed for each survivor, that these plans be updated periodically, and that the plans be shared with subsequent health care providers. 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