Comprehensive long-term follow-up programs for pediatric cancer survivors

Authors


  • This article is a US Government work and, as such, is in the public domain in the United States of America.

Abstract

BACKGROUND.

The objective of this study was to provide a detailed description of comprehensive long-term follow-up (LTFU) programs for pediatric cancer survivors.

METHODS.

Program directors from 24 comprehensive LTFU programs in the U.S. and Canada completed a 6-page survey that provided details in 5 categories: description of the program, perceived benefits and strengths of the program, barriers to the development and use of the program, methods to improve the program, and an ideal model of care for pediatric cancer survivors.

RESULTS.

Participants identified the following primary benefits to health care delivered to survivors through LTFU programs: health care delivered by clinicians familiar with long-term risks of survivors, provision of risk-based screening and surveillance for late effects, and targeted education for risk reduction and healthy lifestyles. Key barriers to the functioning of LTFU programs included system- driven and patient/survivor-driven factors. System-driven factors included inadequate resources and finances to sustain programs, low institutional commitment toward the provision of survivorship care, lack of capacity to care for the growing population of survivors, and difficulties with ongoing communication with community physicians. Survivor-driven barriers included lack of interest and lack of awareness of cancer-related risks.

CONCLUSIONS.

This report describes the frequency, content, and setting of follow-up care delivered by pediatric comprehensive LTFU programs. Critical challenges as survivorship care evolves will include integrating a structured process of program evaluation and building capacity for care. Cancer 2006. Published 2006 by the American Cancer Society

One of the most striking success stories of modern medicine is the tremendous improvement in the likelihood that a child with cancer will survive long term. From 1950 to 1954, the 5-year survival rate of cancer diagnosed in children ages 0 to 14 years was 20%. By 1995 to 2000, this rate had increased to 80.1%.1 In the past 25 years alone, the 5-year survival rate for children ages 0 to 19 years has increased by 20%. This marked increase in survivability of childhood cancer has translated into a growing population of young adult survivors. Currently, there are approximately 270,000 survivors of pediatric cancer in the U.S.2 Approximately 1 in every 640 young adults is a survivor of pediatric cancer.2

The success in curing cancer has not come without a cost. Pediatric cancer survivors have an excess risk of mortality because of therapy-related second cancers and cardiac or pulmonary disease.3 Studies estimate that approximately 66% of survivors have at least 1 chronic or late-occurring complication of their cancer therapy, and approximately 33% have serious or life-threatening complications.4 Nearly 50% of young adult survivors of childhood cancer have moderately to severely diminished health status as a result of their cancer therapy.5

In the 1980s and 1990s, in response to a growing understanding of the potential health sequelae associated with cancer therapy, several cancer centers and children's hospitals developed long-term follow-up (LTFU) programs to provide care for pediatric cancer survivors. By 1997, 96 of the institutions in the Pediatric Oncology Group and the Children's Cancer Group (including programs outside of the U.S.) reported that they had some type of LTFU clinic.6 However, by 2002, there were only 28 programs in the U.S. and Canada that provided comprehensive LTFU care, defined as care provided through a program with the following attributes: 1) at least a single physician interested in late effects, 2) a nurse or nurse practitioner coordinator, 3) an LTFU clinic that meets at a specified time and place, 4) at least 2 follow-up clinics per month, 5) comprehensive care and screening for late effects based on the survivor's treatment, 6) referral to appropriate specialists, and 7) prevention and wellness education.2

Although a few institutions have described their individual LTFU programs,7–11 and Oeffinger et al. have provided a brief overview of the core components of such programs,6 to date, there has not been an in-depth assessment and evaluation of comprehensive LTFU programs. Reflecting on this gap, the Institute of Medicine recommended in their report on childhood cancer survivorship that it would be important to define minimum standards for systems of comprehensive, multidisciplinary follow-up care that link specialty and primary care providers, ensure the presence of such a system within institutions that treat children with cancer, and evaluate alternate models of the delivery of care to survivors.2

The objective of the current study was to provide a detailed description of comprehensive LTFU programs for pediatric cancer survivors. These programs, or attributes within them, may serve as the foundation on which future comprehensive LTFU programs for survivors of both adult and pediatric cancer are developed and implemented. Thus, it is critical to assess these programs in detail to identify key indicators of success, components that are consistent across programs, and barriers to the programs' success. We have incorporated a “who, why, what, when, where” approach in describing the current status of LTFU care. The “why,” or the rationale for LTFU programs, is described above. The who, what, when, and where components are detailed below. This report highlights the perceived benefits and strengths of programs as well as barriers to care and areas that need improvement. Finally, an ideal comprehensive LTFU program, within the existing medical environment and as described by the respondents, is presented.

MATERIALS AND METHODS

A meeting sponsored by the National Cancer Institute and chaired and cochaired by 2 of the authors (N.M.A. and K.C.O.) was held in 2002 prior to the Seventh International Conference on Long-Term Complications of Treatment of Children and Adolescents for Cancer, a biannual meeting on the late effects of cancer therapy. Program directors of the 28 comprehensive LTFU programs in the U.S. and Canada were invited to attend. Prior to the meeting, each program director was asked to complete a 6-page survey that provided details in 5 categories: 1) description of program, 2) perceived benefits and strengths of programs, 3) barriers faced by programs, 4) methods to improve programs, and 5) an ideal model of care for pediatric cancer survivors. The questions generally were open-ended. For the first of the categories, description of the program, we asked who provides care, what the care consists of, where the care is provided, and when (how often) care is delivered. At the meeting, these topic were discussed in further detail by the participants.

Data from the surveys were analyzed independently by each of the 4 researchers: the chair, the cochair, and 2 research assistants with experience in qualitative data management and analysis. An editing organizing style of analysis was used.12 Responses were cut and pasted and grouped according to the questions. Then, the text was read line by line, and data were reduced, coded, and grouped into themes. The investigators then explored the data for linkages and connections of the coded groups between question groupings. Through a series of meetings, the investigators shared findings, discussed relations, and explored areas of discrepancy and outlying data. When comments needed clarification, the LTFU program directors and nurse coordinators were contacted, and further information was elicited. Because the volume of data was not difficult to manage by using a standard word processing approach, qualitative data management software was not used.

Most of the survey questions were open-ended rather than in an explicit question format. Terms such as few (<10%), some (25%), half (50%), or most (>75%) are used for reporting responses to the open-ended questions. Where explicit questions were asked, responses are provided as frequencies and percents. The intent of this report, as noted above, was to describe the depth and breadth of care based on the richness of the experience of these experts. The term “program leaders” refers to LTFU program directors or nurse coordinators.

RESULTS

Of the 28 program directors who were invited to participate, 24 (86%) responded, completed the survey, and attended the meeting (Table 1).

Table 1. Twenty-Four Participating Pediatric Comprehensive Long-Term Follow-Up Programs by Type of Setting*
  • *

    A comprehensive long-term follow-up (LTFU) program was defined as 1) at least a single physician interested in late effects, 2) a nurse or nurse practitioner coordinator, 3) LTFU clinic meets at a specified time and place, 4) at least 2 follow-up clinics per month, 5) comprehensive care and screening for late effects based on the survivor's treatment, 6) referral to appropriate specialists, and 7) prevention and wellness education.

Children's Hospital or Children's Cancer Center
 Cancer Survivor Program, Children's Healthcare of Atlanta, Atlanta, GA
 Long-Term Information, Follow-Up, and Evaluation (LIFE) Program, Childrens Hospital Los Angeles, Los Angeles, CA
 ACCESS Long-Term Follow Up Program, Children's Hospital and Regional Medical Center, Seattle, WA
 Life After Cancer Program, Cook Children's Medical Center, Ft. Worth, TX
 Long-Term Follow-Up Program, Hospital for Sick Children, Toronto, ON
 After Completion of Therapy (ACT) Clinic, St. Jude Children's Research Hospital, Memphis, TN
 Long-Term Survivor Program, Texas Children's Cancer Center, Houston, TX
 Long-Term Follow-Up Clinic, University of Minnesota Children's Hospital, Minneapolis, MN
 Follow-Up Clinic, Strong Children's Medical Center, University of Rochester Medical Center, Rochester, NY
Cancer Centers or University Hospitals
 Long-Term Follow-Up Clinic for Survivors of Childhood Cancer, City of Hope National Medical Center, Duarte, CA
 David B. Perini, Jr. Quality of Life Clinic for Childhood Cancer Survivors, Dana-Farber Cancer Institute, Boston, MA
 Duke University Medical Center, Durham, NC
 Long-Term Follow-Up Clinic, Johns Hopkins Oncology Center, Baltimore, MD
 Long-Term Survivor Clinic, The University of Texas M. D. Anderson Cancer Center, Houston, TX
 Long-Term Follow-Up Program, Memorial Sloan-Kettering Cancer Center, New York, NY
 Long-Term Follow-Up Program, Roswell Park Cancer Institute, Buffalo, NY
 Long-Term Follow-Up Program, Stanford Medical Center, Palo Alto, CA
 Kids Now Off Therapy (KNOT) Clinic, State University of New York (SUNY) Upstate Medical University, Syracuse, NY
 Long-Term Follow-Up Program, University of California San Francisco Comprehensive Cancer Center, San Francisco, CA
 Long-Term Follow-Up Clinic, University of Michigan, Ann Arbor, MI
 Health Education Research Outcomes for Survivors of Childhood Cancer (HEROS) Clinic, Yale University School of Medicine, New Haven, CT
Dual Children's and Young Adult Programs
 After the Cancer Experience (ACE) Program, Children's Hospital Dallas and The University of Texas Southwestern Medical Center at Dallas, Dallas, TX
 Long-Term Follow Up Clinic, Children's Hospital of Philadelphia, and the Lance Armstrong Foundation Living Well After Cancer Program, University of Pennsylvania Cancer Center, Philadelphia, PA
 Survivors Taking Action and Responsibility (STAR) Program, Children's Memorial Hospital and Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, IL

Description of Comprehensive LTFU Programs

Who? LTFU program health care providers and survivor population

The core staff of all of the programs included a physician, a nurse, and an administrative assistant. The directors of 83% of the programs (20 of 24 directors) were pediatric oncologists. Two programs were directed by a pediatric endocrinologist. Two dual programs that included childhood and young adult survivors were codirected by a pediatric oncologist and a primary care physician. Reflecting the strong educational focus of LTFU care, nurse practitioners or nurses with advanced degrees were an integral component of all programs. Fifty-four percent of the programs (13 of 24 programs) included a social worker. In 21% of the programs (5 of 24 programs), other physicians attended the LTFU clinics, including radiation oncologists, endocrinologists, cardiologists, medical oncologists, and neurologists. A psychologist or a neuropsychologist was involved formally in 33% of the programs (8 of 24 programs). A variety of other ancillary staff assisted with a few of the programs, including a dietician, an education or resource specialist, or a genetic counselor.

Most programs followed survivors of all childhood cancer groups, although some had a different mechanism or program for following pediatric brain tumor survivors. Sixty-three percent of the programs (15 of 24 programs) provided care for childhood cancer survivors of all ages, including a few of the programs based at a children's hospital. However, for several reasons, most programs focused on survivors younger than age 25 years. Reasons for this age focus included 1) most programs were directed by pediatric oncologists and coordinated by pediatric oncology nurse practitioners, 2) many directors and coordinators expressed a lower clinical comfort level when following older survivors, 3) the settings and environments of these programs were focused more on the needs of the pediatric age survivors and their families, and d) although health insurance generally was not an issue for survivors younger than age 21 years, it was a common barrier for young adult survivors.

What? Health services provided by LTFU programs

The core health services provided by the participating comprehensive LTFU programs were fairly uniform. Upon entry into the program, the parents of the survivors are given a detailed summary of their child's cancer and cancer therapy. In the early years of follow-up (2–5 years posttherapy), the focus of the LTFU visit is on surveillance for disease recurrence and initiating screening for late effects. The focus shifts as time progresses to include age and developmentally appropriate education on health behaviors and practices. After a comprehensive history and physical examination, recommendations for screening for late effects are provided and scheduled, depending on the survivors' and families' desires and financial abilities.

In addition to making recommendations for late effects screening, program staff stated that they provide education and counseling to survivors and their families regarding survivorship health issues, health risks, and the influence of healthy and risky behaviors. Referrals for specific health problems or health behaviors are made as needed. The duration of the typical annual visit ranges from 30 minutes to 2 hours.

In the 54% of participating LTFU programs that included a social worker, a formal social services evaluation is conducted at each annual visit and as needed with interim visits. Although most (if not all) programs reported that some element of screening for psychological problems, such as depression or posttraumatic stress, routinely is included, only 50% of the programs (12 of 24 programs) reported a formal psychological evaluation with the annual visit. Formal neuropsychological evaluations were conducted in 29% of the programs (7 of 24 programs).

Program leaders expressed the view that care delivered through comprehensive LTFU programs is time and labor intensive. Clinical revenues were reported as modest. Almost all programs reported some level of in-kind support for personnel time and space. Fifty percent of the programs (12 of 24 programs) also reported periodic or continued support through local foundations or philanthropic organizations. Twenty-nine percent of the programs (7 of 24 programs) reported having some extramural grant support for survivor-related research.

When? The interval of follow-up care

Almost all leaders reported that their patients make the transition from the primary oncologist to the comprehensive LTFU program 2 years after the completion of cancer therapy or 5 years after their cancer diagnosis. All of the program leaders reported that they evaluate their survivors annually, as recommended by the Institute of Medicine.2,13

Where? The setting of LTFU programs

Nine of the programs were located at either a children's hospital or a children's cancer center; 12 programs were located at a cancer center or a university hospital; and 3 programs were dual programs that linked children's hospitals with university hospitals.

Benefits and Strengths of LTFU Programs

There was a consensus among program leaders that their programs benefit survivors through the provision of 2 unique services: 1) risk-based screening and 2) survivor education. In other words, the LTFU program leaders uniformly believed that they deliver the type of care for which the programs were created. First, survivors benefit from the care of dedicated health providers who are experienced regarding their complex health care needs. Risk-based screening for late effects is facilitated through the programs. By virtue of their experience and clinical knowledge base, LTFU clinical providers expressed their ability to consider carefully which tests are indicated clinically and to avoid over testing survivors.

Based on the responses of the program leaders, a second important benefit of care through an LTFU program is the provision of targeted education focused on maximizing the health of survivors. This education includes teaching survivors and their families about their cancer, their cancer therapy, and potential future health problems. An important component of this education is putting the risk into perspective so that these young survivors and their families do not experience unnecessary anxiety. The concept of screening for late effects is a core aspect of this education. Survivors are taught about the benefits of healthy lifestyles that can reduce risk and maximize their health. Because there is frequent informal networking of LTFU program leaders through mechanisms, such as semiannual Children's Oncology Group meetings, leaders reported that they can provide their survivors with the latest information from current research. The program leaders also stated that they are able to help survivors navigate the health care system and assist them with coping with broader, nonmedical issues of survivorship (financial, emotional, social, and psychological burdens).

The strengths of individual programs reflected their unique resources, such as the inclusion of neuropsychological evaluation, ancillary health care providers (dietician, health educator), or other specialists familiar with particular health problems (cardiologist, endocrinologist). A few of the programs reported having significant financial resources available to provide care to all of their survivors, regardless of financial need or health insurance. Leaders of programs with well established and comprehensive data bases reported the ability to focus periodically on particular health problems and to encourage the return to care of survivors who previously were “lost to follow-up”. Leaders from programs with an established and active research program believed that their research studies added richness to their care and helped to minimize the loss of survivors to follow-up.

Barriers to LTFU Care

Five primary types of barriers were reported by LTFU program leaders: financial concerns, lack of institutional value, capacity for care, difficulty in communication with community physicians, and survivor-driven barriers. Financial issues were a major barrier in most of the programs. Although leaders did not believe that the programs were expensive to run, they noted that the financial remuneration from clinical revenue was minimal. Program leaders stated that this creates stress for the staff, who may be expected to function in the context of uncertainty about the future viability of the program, and limits their capacity for long-range planning.

In approximately 33% of the programs, a general lack of understanding of long-term care within their institutions was identified as a major barrier to service delivery. Some program leaders stated that most of the pediatric oncologists at their institution focus only on active treatment and express little interest or concern regarding survivorship issues. They believe that this creates an environment in which an LTFU program is not valued and, consequently, resources are not provided as needed. Several of the program leaders stated that, because of this barrier, their LTFU program is conducted in the active treatment clinical setting rather than in a separate and dedicated space and at a designated time. This often limits examination room space availability. More important, program leaders stated that conducting the LTFU program in an active treatment setting maintains an “acute-care” mind set rather than a mind set focused on the long-term health issues of the survivor.

Most program leaders noted that there is not an adequate capacity or infrastructure to care for all of the survivors treated at their institution. There are 2 overlapping themes to this barrier: capacity within the LTFU program and networking with community physicians. First, >33% of program leaders expressed the view that their current capacity to provide care for survivors was being stretched by inadequate personnel and resources. These directors stated that there was a lack of adequate LTFU personnel, including physicians and nurses interested and trained in caring for survivors. Many program leaders reported a lack of resources, including needed ancillary providers (social workers, psychologists), and space was limited in most of the programs.

Because most programs do not have an unlimited capacity for caring for their survivors, especially as the number of pediatric cancer survivors continues to grow, other methods of providing risk-based health care were being explored by program leaders. They reported that successfully transitioning survivors to community physicians is difficult. Most community physicians are not familiar with the health needs of cancer survivors. Few program leaders reported success in identifying primary care physicians in their community who were interested in following survivors. Rather, the norm was that a large number of community physicians with a wide range of interests and experience were providing some aspect of care for their survivors. Program leaders reported that it is difficult to establish and maintain communication with each individual community physician about each survivor. Thus, attrition by general “loss to follow-up” of survivors was an issue for many program leaders.

Finally, although <33% of program leaders reported it as a key barrier to program utilization, some program leaders stated that survivors often were unwilling to return for follow-up care. A few of the program leaders reported that family and work commitments make it difficult for survivors to schedule their annual visits. A few also stated that it is often difficult to follow survivors consistently because of limitations imposed by geography or mobility of the population.

Methods to Improve LTFU Programs

To improve or expand their program, most leaders reported that they needed greater budgetary authority and financial resources. Program leaders recognized that the primary focus of a cancer center is to treat patients with cancer, that LTFU care is secondary, and that resources are limited in the current medical environment. However, most directors stated that, with even relatively modest additional financial resources combined with budgetary authority, the care delivered through LTFU programs would improve. Most programs did not have a program-specific budget that allowed the director to allocate resources to priority areas. Instead, most programs were administered through the general division clinical budget. Oncology division chiefs generally supported some percent of time and effort of the director and a nurse or nurse practitioner. Several of the programs lacked adequate administrative assistance and social services. Involvement of other health care providers, such as psychologists, often depended on shared research interests.

Most program leaders expressed a need to enhance and expand the clinical services available to their survivors and their families, particularly behavioral and psychosocial support services. Paralleling this, program leaders reported a need to expand and improve their referral networks while encouraging greater involvement and collaboration with other health care professionals. There also are some special populations, such as brain tumor survivors, that need to be incorporated better into the programs.

Stimulating and expanding research efforts was the 3rd most common area identified for improving programs. This requires time, personnel with appropriate research training and expertise, and financial support. Linked with this focus and the desire to improve the delivery of care is refining and standardizing data bases and collecting a core set of outcomes.

Ideal Model of Care for Pediatric Cancer Survivors

To deliver optimal care for pediatric cancer survivors, program leaders endorsed a model that emphasized the strengths of LTFU care (Table 2). Although this admittedly reflected a bias of their previous experience and training, directors were reflective in this process and acknowledged the limitations inherent in any model. Most program leaders indicated that a pediatric oncologist is suited best to direct a LTFU program. Reflecting the unique experiences of the program leaders, a few suggested that either a primary care physician or another health care professional trained in late effects would make a suitable director. All respondents recommended that the program be coordinated by a full-time nurse practitioner or a nurse with an advanced degree. None of the participating programs included a physician assistant (PA), although a PA with appropriate training could function in a role similar to that of an oncology nurse practitioner. LTFU programs should have adequate resources to include the necessary social services and administrative assistance. There was no consensus regarding additional health care providers necessary for optimal care, with responses again reflecting the site-specific strengths of the various institutions. Directors generally stated that the ideal program should be situated at the treating institution but preferably with its own dedicated space and clinic time (apart from the active treatment setting).

Table 2. Ideal Model of Long-Term Follow-Up Program for Pediatric Cancer Survivors
  1. LTFU program indicates long-term follow-up program.

Staffing of LTFU program
 Director: Pediatric oncologist or physician with 'late effects' experience
 Coordinator: Pediatric oncology nurse practitioner (or with advanced nursing degree)
 Social worker
 Psychologist: Dedicated support
 Referral network of specialists for specific problems
Services provided
 From 2 to 5 years postcancer diagnosis: Surveillance for disease recurrence; initiation of screening for late effects; targeted education of family/child regarding survivorship
 Five years postcancer diagnosis: Focus on screening for late effects; targeted and developmentally appropriate education for healthy behaviors and risk reduction; surveillance for disease recurrence gradually lessens as interval from cancer increases
Timing of visits
 Annual evaluation or stratified based on risk of late effects
Location of LTFU
 For pediatric-age survivors: Dedicated space and time for LTFU program in either the Children's Hospital or Cancer Center
 For young adult survivors: Continued care in the pediatric LTFU program, or transition to a young adult program, or transition to a community physician with continued communication

The recognized limitation of this model is its inability to meet the needs of the older survivors. The leaders of the participating LTFU programs have approached this problem by caring for older survivors through their existing programs. Most program directors were concerned about the potential limitations of having pediatric-trained physicians and nurses providing care for their young adult survivors. In an ideal model, LTFU program leaders suggested either transitioning survivors to the community or developing young adult programs directed by primary care physicians.

DISCUSSION

Many individuals who have been cured of cancer will face an increase in premature death and cancer-related physiological and psychological morbidity.4 Health care that addresses the special needs of cancer survivors and focuses on methods to reduce these risks is considered essential.14 The Institute of Medicine report, Childhood Cancer Survivorship: Improving Care and Quality of Life, highlighted the need to design systems of care that are responsive to survivors' health care needs.2 The Institute of Medicine recently published a similar report focusing on survivors of adult cancers and emphasized the need for a more systematic and proactive approach to their long-term health care.13 Consequent to the perceived success of these pediatric programs, some cancer centers are beginning to develop LTFU programs for survivors of adult cancer.13 Although there are some unique differences between methods to provide LTFU care for survivors of pediatric cancer and adult cancer, much can be extrapolated from the pediatric models to the adult cancer models, and vice versa. To our knowledge, this report provides the first in-depth look at comprehensive programs focused on providing health care for pediatric cancer survivors. It represents an intense and structured self-reflection of program leaders from comprehensive LTFU pediatric programs that have pioneered the concept of risk-based health care for survivors.

The concept of an LTFU program designed to provide care for cancer survivors was described first by Meadows and Hobbie.8 After their report was published, a few other institutions provided brief overviews of their programs in the context of reporting results from institutional studies.7, 9, 10, 15 Hobbie and Hollen described the integral role of the oncology nurse practitioner in an LTFU program.16 Because of our detailed and focused study, we have achieved some clarity regarding the frequency, content, and setting of follow-up care delivered by specialized clinics geared toward survivors of pediatric cancer. There will be 2 critical challenges as survivorship care evolves: 1) integrating a structured process of program evaluation and 2) building capacity for the delivery of survivor care.

Participants in the current study uniformly reported that, currently, a systematic program evaluation that defines and quantifies success is not a component of their programs. Structured and uniform program evaluation should be linked to both clinical and research initiatives to determine how LTFU programs affect their populations in terms of reducing morbidity or mortality, improving health and quality of life of survivors, containing health care costs, and enhancing patient and physician satisfaction.14 It is key that we 1) develop standards of follow-up care for pediatric cancer survivors with a view toward preventing, detecting early, or ameliorating long-term or late effects of cancer and its treatment; 2) discuss the ways to improve the quality of care for cancer survivors as they move through the survivorship continuum; 3) examine ways for providing patients with accurate, timely, and tailored information to improve medical decision-making and care during active treatment and follow-up; and 4) develop, test, and define optimal follow-up care and monitoring strategies for all cancer survivors.14, 17

The second challenge in survivorship care is expanding the capacity for the delivery of survivorship care. Currently, there are approximately 270,000 long-term survivors of pediatric cancer in the U.S.2 This number will increase by approximately another 100,000 in the next 10 years. Who will provide care for this growing high-risk population? Many Children's Oncology Group institutions do not have a mechanism for following long-term pediatric cancer survivors, and most do not have a comprehensive LTFU program with a staff focused on providing risk-based care. Even comprehensive LTFU programs do not have adequate staffing and resources, as noted by the participants in this study. This picture becomes even bleaker when considering survivors who are entering young adulthood, because most of the institutions are not equipped to provide continued care for this group. Findings from the Childhood Cancer Survivor Study illustrate the immensity of the problem. Investigators reported that <20% of long-term survivors of pediatric cancer who were diagnosed between 1970 and 1986 were in some form of active follow-up care at a cancer center and that the likelihood of care at a cancer center decreased significantly as the interval from cancer diagnosis increased.18

Resolving this crisis will be a challenge. There are 2 primary barriers to expanding the capacity to deliver health care for pediatric cancer survivors at cancer centers or treating institutions: financial constraints and the lack of an adequate number of providers trained and experienced in caring for young cancer survivors. In the foreseeable future, the financial constraints faced by treating institutions will not change. Thus, in a world of competing demands, resources for providing care for cancer survivors will increase only if cancer center directors are committed to the long-term well being of the children treated at their institution. However, even with such a commitment, there are not enough clinicians trained in the health care needs of survivors. An expansion of training opportunities for nurses and physicians is needed.

Even with an expansion in the number and size of LTFU programs, the need will exceed the capacity. To deliver optimal care for pediatric cancer survivors, especially those who are now adults, methods to share care with primary care physicians in the community must be developed and tested. Wallace et al. in the U.K. have recommended stratifying survivors into 3 groups based on long-term risk of late effects.19 Survivors with a low risk of late effects, such as those who underwent surgery alone or received low-risk chemotherapy, would be contacted every 1 or 2 years by telephone or mail. Survivors with a moderate risk of late effects, including those who received chemotherapy and/or low-dose cranial irradiation (<24 grays), would be followed every 1 or 2 years by a primary care physician in communication with the treating institution. The survivors at highest risk, including those who received moderate to high-dose radiotherapy, underwent bone marrow transplantation, or received megatherapy, would be followed annually through an LTFU program. This approach has several merits. First, it allows an LTFU program to focus resources on maintaining continued follow-up with the survivors at highest risk. Second, it requires ongoing communication with primary care clinicians for the care of survivors in the second risk stratum. Third, it avoids “over-medicalizing” survivors who have a low risk of future complications while maintaining some method of contact. With refinement of the treatment exposure-based criteria for each stratum, this approach warrants testing through a randomized clinical trial. Particularly important is the development of strategies to facilitate ongoing communication between cancer treating institutions and primary care clinicians involved in the care of survivors at moderate risk.

When interpreting the results of the current study, it is important to recognize the limitations. The study was descriptive in design and depended on responses to open-ended questions. Thus, quantitative analysis of the data is limited. By incorporating a standardized and semistructured approach, the study objectives of describing the breadth and depth of LTFU programs while identifying the core components was achieved.

In conclusion, this study provides an initial understanding regarding the frequency, content, and setting of follow-up care delivered by comprehensive LTFU programs. Leaders of LTFU programs need to develop and test strategies that will prevent, detect early, or ameliorate the long-term or late effects of cancer and its treatment. The identification of methods for improving quality of care as cancer survivors move through the survivorship continuum and strategies for providing patients with accurate, timely, and tailored information to improve medical decision-making and care during active treatment and follow-up are other key future needs. We must stimulate research that addresses questions related to the follow-up care and monitoring of cancer survivors and that examines and tests various models of follow-up care delivery. We also must facilitate and promote the development and use of evaluative research strategies that enable the measurement of LTFU program effectiveness.

Acknowledgements

We thank Julia Rowland, PhD, Lee Helman, MD, and Charles Sklar, MD for their thoughtful comments. We are deeply indebted to the participating comprehensive LTFU Program leaders.

Ancillary