5
Delivering Survivorship Care

Increased recognition of cancer’s late effects has meant that some childhood cancer survivors have joined the ranks of the relatively large group of children with chronic conditions and ongoing health problems. This chapter first reviews the current status of pediatric cancer care—both initial treatment and follow-up care—in terms of where care is provided, who provides care, and how care is paid for. Next, similarities and differences are drawn between the long-term health care needs of cancer survivors and other children with chronic illness or disabilities. Finally, the components of an ideal care system designed to meet the unique continuing health care needs of childhood cancer survivors are described and the relative strengths and limitations of alternate delivery models for follow-up care are outlined.

CURRENT STATUS OF PEDIATRIC CANCER CARE

Childhood cancer is rare and therefore accounts for a relatively small share of health care. An estimated 3 per 1,000 pediatric ambulatory visits and an equal share of pediatric hospitalizations are for the care of patients under age 20 with cancer (Table 5.1). Each year there are an estimated 605,600 cancer-related ambulatory care visits and 20,590 hospital discharges among children (Table 5.1). These estimates from large national surveys and administrative data sets pertain to the entire spectrum of cancer care, from diagnosis and treatment to end-of-life care. Pediatric cancer care, once offered predominantly in hospitals, has increasingly been provided on an outpatient basis (Mullen et al., 1999; Wolfe, 1993; Wollnik, 1976).



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5 Delivering Survivorship Care Increased recognition of cancer’s late effects has meant that some childhood cancer survivors have joined the ranks of the relatively large group of children with chronic conditions and ongoing health problems. This chapter first reviews the current status of pediatric cancer care—both initial treatment and follow-up care—in terms of where care is provided, who provides care, and how care is paid for. Next, similarities and differences are drawn between the long-term health care needs of cancer survivors and other children with chronic illness or disabilities. Finally, the components of an ideal care system designed to meet the unique continuing health care needs of childhood cancer survivors are described and the relative strengths and limitations of alternate delivery models for follow-up care are outlined. CURRENT STATUS OF PEDIATRIC CANCER CARE Childhood cancer is rare and therefore accounts for a relatively small share of health care. An estimated 3 per 1,000 pediatric ambulatory visits and an equal share of pediatric hospitalizations are for the care of patients under age 20 with cancer (Table 5.1). Each year there are an estimated 605,600 cancer-related ambulatory care visits and 20,590 hospital discharges among children (Table 5.1). These estimates from large national surveys and administrative data sets pertain to the entire spectrum of cancer care, from diagnosis and treatment to end-of-life care. Pediatric cancer care, once offered predominantly in hospitals, has increasingly been provided on an outpatient basis (Mullen et al., 1999; Wolfe, 1993; Wollnik, 1976).

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Pediatric cancer care also appears to be concentrated in specialty settings— nearly half (46 percent) of cancer-related ambulatory care is provided in hospital-based outpatient clinics and 58 percent of cancer-related hospital care takes place in urban, teaching hospitals (Table 5.1). The implications of uninsuredness for children with cancer are dire given the complexity of care and its associated costs. An estimated 7 percent of cancer-related ambulatory care visits made from 1995 to 1999 by children were not covered by insurance, and 3 percent of cancer-related hospital discharges in 1997 lacked coverage (Table 5.1). Coverage of cancer-related ambulatory care visits is primarily through private insurance (62 percent) and to a lesser extent the Medicaid program (6 percent) (Table 5.1). Cancer-related hospital care is more heavily dependent on public programs—31 percent of hospitalizations were paid for by the Medicaid program and 60 percent were paid for by private insurance in 1997 (Table 5.1). Some low-income individuals and families who lack health insurance, but who are not eligible for Medicaid, “spend down” to become eligible for Medicaid to help pay for expensive hospitalizations. Pediatric cancer care tends to be intensive, lengthy, and costly. An estimated 18 percent of cancer-related hospitalizations had length of stays of 14 or more days (National Cancer Policy Board [NCPB] special tabulations). Total charges associated with cancer-related hospital care are very high; 22 percent of discharges had total charges of $40,000 and above in 1997 (NCPB special tabulations). There have been relatively few studies of the costs associated with caring for children with cancer, but one study conducted in the early 1980s suggests that family out-of-pocket expenses add about 50 percent to the total cost of disease-related care and consumed 38 percent of gross annual family income (Bloom et al., 1985). Not measured are the broader costs incurred by the family, including lost wages and opportunity costs (e.g., lack of job advancement). Initial Treatment of Childhood Cancer: The Intersection of Cancer Care and Research It is generally recognized that children undergoing their initial treatment for cancer and their families have special needs that can best be met by specialized children’s cancer centers. Such centers use a team approach involving a variety of specialists— pediatric oncologists, surgeons, radiation oncologists, pediatric oncology nurses, nurse practitioners, psychologists, social workers, child life specialists, nutritionists, rehabilitation and physical therapists, and educators—who can support and educate the entire family. In recognition of improved outcomes associated with such specialized care, the American Academy of Pediatrics (AAP) recommends that

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TABLE 5.1 Estimates of the Number and Distribution of Cancer-Related Pediatric Ambulatory Care Visits and Hospital Discharges, by Age, Sex, Race/Ethnicity, Payment, and Site of Care, NAMCS and NHAMCS, 1995-1999, HCUP NIS, 1997   Ambulatory Visits Hospital Discharges Characteristic Annual population estimatea % (se) Annual population estimatea % (se) Total 605,600 100.0 20,590 100.0 Age 0 44,600 7.4 (2.0) 930 4.5 (0.5) 1-4 161,500 26.7 (3.4) 5,170 25.1 (1.1) 5-9 126,600 20.9 (3.1) 5,190 25.2 (1.0) 10-14 154,900 25.6 (3.4) 4,210 20.4 (0.9) 15-19 117,900 19.5 (3.1) 5,090 24.7 (1.8) Sex Male 377,000 62.3 (3.7) 11,690 56.8 (1.1) Female 228,500 37.7 (3.7) 8,890 43.2 (1.1) Race/ethnicityb White, non-Hispanic 437,400 72.2 (3.5) 10,100 65.7 (3.6) White, Hispanic 98,700 16.3 (2.8) 2,300 15.0 (2.9) African American 34,300 5.7 (1.8) 1,920 12.5 (1.6) Other 35,200 5.8 (1.8) 1,040 6.8 (1.7) children and adolescents with newly diagnosed or recurrent malignancies receive their treatment in a pediatric cancer center (American Academy of Pediatrics, 1997). The AAP also recommends that the oncologic care of a child or adolescent with cancer be coordinated by a pediatric hematologist/ oncologist who is board-certified or board-eligible in the subspecialty of pediatric hematology and oncology by the American Board of Pediatrics. By 2002, 1,740 pediatric hematology/oncology physician specialists had been board certified (http://www.abp.org/STATS/numdips.htm, accessed March 25, 2003) (roughly 80 percent of these physicians were in practice). The AAP also recognizes many other professionals as essential members of the cancer care health care team, including nurses, social workers, and psychologists. In 2003, there were an estimated 2,000 active members of the Association of Pediatric Oncology Nurses (APON) (Louise S. Miller, Executive Director, APON, personal communication to Maria Hewitt, March 24, 2003) and roughly 250 members of the Association of Pediatric

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  Ambulatory Visits Hospital Discharges Characteristic Annual population estimatea % (se) Annual population estimatea % (se) Main payment source Private 373,300 61.7 (3.7) 12,300 59.7 (2.0) Medicaid 38,800 6.4 (1.8) 6,300 30.6 (1.6) Uninsured 39,800 6.6 (1.9) 550 2.7 (0.5) Other/unknownc 153,700 25.3 (3.4) 1,430 6.9 (1.7) Site of cared Specialty setting 278,900 46.1 (3.8) 12,040 58.5 (7.2) Non-specialty setting 326,700 53.9 (3.8) 8,530 41.4 (7.3) NOTE: n = sample size; % = percent distribution; se = standard error. aAnnual estimates for the number of ambulatory care visits are based on a 5-year average (1995-1999). A total of 528 cases from NAMCS and NHAMCS were weighted to obtain population estimates. A total of 4,430 cases from HCUP, 1997, were weighted to obtain an annual estimate for hospital care. Numbers may not add to total because of rounding errors. bValues are missing for 22.6% of cases for hospital discharges. cAn estimated 7% of the “other/unknown” category are insured by Medicare. Other sources of insurance include the military. dFor ambulatory care, specialty setting is a hospital outpatient department, and non specialty setting is a physician’s office. For hospital care, a specialty setting is an urban teaching hospital and non-specialty setting is a rural or urban non teaching hospital. SOURCES: National Ambulatory Medical Care Survey (NAMCS) and National Hospital Ambulatory Medical Care Survey (NHAMCS), 1995-1999; Healthcare Cost and Utilization Project (HCUP), 1997; special tabulations, NCPB staff. Oncology Social Workers (APOSW) (June McAtee, APOSW Membership Chair, personal communication to Maria Hewitt, March 21, 2003). Pediatric cancer care is usually delivered through academic centers involved in research (Wittes, 2003). Roughly 50 to 60 percent of all children and adolescents newly diagnosed with cancer in the United States are enrolled on clinical trials (Murphy, 2002; Shochat et al., 2001). This is quite remarkable, given that fewer than 5 percent of adults newly diagnosed with cancer are enrolled in trials. Clinical trials establish standards for an appropriate diagnostic workup, review of pathology, surgical approach, radiotherapy, and chemotherapy administration, as well as therapeutic efficacy and toxicity. Peer-reviewed treatment plans have provided standards of

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care that have diffused into community practice and benefited all patients, whether participating in clinical trials or not (Simone and Lyons, 1998) (clinical trials are discussed further in Chapter 8). Beginning in the 1960s, evaluations of cancer treatment were organized through major pediatric centers (e.g., St Jude Children’s Research Hospital, Dana Farber Cancer Institute) and national cooperative groups. The major pediatric clinical trials groups based in North America—the Children’s Cancer Group (CCG), the Pediatric Oncology Group (POG), the Intergroup Rhabdomyosarcoma Study Group (IRS) and the National Wilms’ Tumor Study Group (NWTSG)—merged in 2001 to form a single, nationwide group, the Children’s Oncology Group (COG). The Children’s Oncology Group is a National Cancer Institute-supported clinical trials cooperative group devoted exclusively to childhood and adolescent cancer research (See Chapter 8 for a discussion of COG-sponsored research). It develops and coordinates cancer clinical trials conducted within its 235 member institutions, which include cancer centers of all major universities and teaching hospitals throughout the United States and Canada, as well as sites in Europe and Australia (http://www.nccf.org/COG/index.asp, accessed March 15, 2003). Member institutions also conduct research that is independent of COG. The location of the 213 participating U.S. institutions is shown in Figure 5.1. Three states—Montana, Wyoming, and Alaska—do not have a COG-affiliated institution and geographic access to these institutions is limited in certain areas of the West and Midwest. Despite the geographic dispersion of specialized centers, as many as 94 percent of pediatric cancer cases (under age 15) diagnosed from 1989 to 1991 were seen at an institution that was a member of the cooperative clinical trials groups (i.e., POG or CCG) (Ross et al., 1993, 1996). Follow-Up Care Despite the growth in the population of childhood cancer survivors, no established guidelines outline appropriate components of follow-up care or provide models of how to deliver such care. The AAP recommends that centers providing care for children and adolescents with cancer have a “mechanism for ensuring long-term follow-up of successfully treated patients, either at the original treatment center, or by a specialist who is familiar with the potential adverse effects of treatment for childhood cancer” (American Academy of Pediatrics, 1997). Some professional organizations and advocacy groups have called for assurance of specialized long-term follow-up care for survivors of childhood cancer (Alliance for Childhood Cancer, 2002; Arceci et al., 1998). Having an on-site, long term follow-up service for survivors of pediatric cancer is a requirement for COG membership. The COG membership criteria state that the “outpa-

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FIGURE 5.1 Map of Children’s Oncology Group (COG) member institutions in the United States. SOURCE: COG, Public Presentation Graphic, 2002. tient clinic should ensure the long-term follow-up of successfully treated patients and those with lifelong chronic disorders” (Children’s Oncology Group, 2001). The COG membership requirements are drawn from the general criteria and guidelines for pediatric cancer centers established by the Section on Hematology/Oncology of the American Academy of Pediatrics and the American Society of Pediatric Hematology/Oncology (Children’s Oncology Group, 2001) (Box 5.1, sections pertaining to follow-up care are underlined). Although many late effects of childhood cancer have been recognized, there is no clear agreement on what constitutes appropriate care. Defining the specific components of long-term services that are needed is difficult because of the variable nature of long-term outcomes associated with childhood cancer. The focus of long-term follow-up of survivors of childhood cancer should be on conditions for which effective clinical interventions are available that improve survival and/or quality of life. There are many areas for which the evidence regarding the effectiveness of follow-up care is incomplete, and for which additional research is needed. There are, however, examples of follow-up care falling into the area of prevention and psychosocial support that are supported by principles of public health and compassionate care:

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Box 5.1 Requirements for Institutional Membership, Children’s Oncology Group Required On-Site Personnel Pediatric hematologist/oncologist (Board certified/eligible or equivalent) Pathologist(s) (Board certified) Nurses with additional training in the management of children and adolescents with cancer and blood disorders, and documented in-house training in chemotherapy administration Clinical research associates trained in data management support of cooperative research Respiratory therapists with expertise in pediatrics Anesthesiologist with expertise in the management of children Radiologist with expertise in the management of children Pharmacist with expertise in chemotherapy Social worker with additional training in the management of children and adolescents with cancer and blood disorders Required On-Site Services Pediatric unit Intensive care unit with the ability to treat critically ill children Outpatient clinic for the acute and chronic care and treatment of children and adolescents with cancer Computed axial tomography Ultrasonography Pharmacy with capability of storage, accurate preparation, dispensing, and accounting for investigational drugs, and other antineoplastics Anatomic pathology services necessary for the immediate handling of specimens and 24-hour laboratory services necessary for the care of critically ill children Capabilities to provide appropriate isolation for patients with severe immuno-suppression Expertise available to determine the need to deliver and monitor total parenteral nutrition for critically and chronically ill children and adolescents Educating and counseling survivors regarding the specific risks to which they are susceptible and guidance on self-monitoring for signs of late effects. Applying preventive approaches known to be effective for the general population, including encouragement of abstinence from tobacco, limited exposure to alcohol, sun protection, physical activity, maintenance of a healthy weight, consumption of fruits and vegetables. At a minimum, the surveillance techniques for detecting cancer in the general population should

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Pain management and sedation guidelines Long term follow-up services for survivors of pediatric cancer Data collection and transfer systems to support clinical trials programs Personnel and Services That Must Be Available and Readily Accessible Personnel Surgeons with expertise in the management of children: Surgeon for general surgical management (Board certified/eligible); orthopedic surgeons; urologic surgeons; neurosurgeons, plastic surgeon Pathologists (Board certified with special training and/or certification in 1) pediatric pathology; 2) hematopathology; 3) neuropathology Medical specialists/specialties: Ophthalmologist; otolaryngologist; radiation oncologists; nuclear medicine physician; pulmonology; cardiology; gastroenterolo-gy; neurology; infectious disease; endocrinology; nephrology; psychiatry Non-physician providers: Nutritionist(s); physical therapist(s); pediatric psychologist(s); occupational therapist(s); childlife specialist; dentistry Services Diagnostic imaging and radiation oncology equipment (e.g., rotational linear accelerator) Clinical laboratories with expertise in the assessment and diagnosis of pediatric hematologic/oncologic disorders (Clinical Laboratory Improvement Act [CLIA] approved) Services for dialysis of children and adolescents Rehabilitation In addition to these requirements, Comprehensive Pediatric Hematology/Oncology Programs should have regularly scheduled multidisciplinary tumor boards as well as case conferences designed to discuss children and adolescents with serious hematologic problems. The outpatient clinic should ensure the long-term follow-up of successfully treated patients and those with lifelong chronic disorders. SOURCE: COG, Institutional Membership Application Procedures, 1/14/01. be performed as recommended (e.g., screening for cancers of the breast, cervix, and colorectum). Providing psychosocial support services to survivors and their families. Providing reproductive and sexuality counseling. Providing genetic counseling for individuals with a hereditary cancer and their family members.

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TABLE 5.2 Suggested Evaluation for Suspected Late Effects Late effecta Screening test Recommendations if screening results abnormal Short stature Growth curve Bone age, growth hormone tests   Sitting height Thyroid function testsa   Parental heights Endocrinologist consultation Obesity or weight loss Growth curve Thyroid function testsa   Diet history Nutritionist, endocrinologist consultation Scoliosis Physical examination Spine radiography; evaluate again during adolescent growth spurt Orthopedist consultation Bone asymmetries (hypoplasia, atrophy) Bone lengths, circumference Orthopedist consultation; bone radiography; plastic surgeon consultation Avascular necrosis or osteoporosis History of pain, fractures Bone scan   Bone radiography Serum estradiol level; Ca, P Orthopedist consultation; physical therapist consultation Soft tissue hypoplasia, contractures, edema Physical examination Plastic surgeon consultation Dental abnormalities Physical examination Dentist, oral surgeon consultation Learning disabilities Communication with school, family; psychological testing CT or MRI scan of head; special education classes Leukoencephalopathy CT or MRI (See also Learning Disabilities, above) Cerebrospinal fluid basic myelin protein; neurologist consultation Neuropathy Physical examination Neurologist consultation Hearing loss Audiogram Otorhinolaryngologist consultation; audiologist consultation Infertility History (primary versus secondary dysfunction) Endocrinologist consultation   Gonadal function testingb Obstetrician or gynecologist consultation Thyroid dysfunction Thyroid function testinga Endocrinologist consultation Cardiomyopathy or pericarditis Electrocardiogram; echocardiogram; radio-nuclide angiography Cardiologist consultation Vasoocclusive disease Angiography; Doppler pulses Vascular surgeon Pneumonitis or pulmonary fibrosis Chest radiography Lung biopsy   Pulmonary function tests Pulmonologist consultation

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Late effecta Screening test Recommendations if screening results abnormal Chronic enteritis Growth curves Serum folate, carotene   Nutritional assessment Small-bowel studies; barium enema; gastroenterologist consultation Hepatitis or cirrhosis Liver function tests Liver biopsy, hepatitis screen; liver scan; gastroenterologist consultation Nephritis, rickets (tublar defects) Urinalysis; BUN, creatinine, serum electrolytes, CO2, Ca, P, alkaline phosphatase; wrist radiographs 24-h creatinine clearance or glomerular filtration rate; intravenous urogram or sonogram; nephrologist consultation Hemorrhagic cystitis Urinalysis Cytoscopy; urologist consultation Thrombotic thrombocytopenic purpura CBC/platelets, BUN, creatinine; peripheral blood smear   Sepsis Compliance with prophylactic antibiotics   Second malignancy Studies on an individual basis Oncologist consultation NOTE: BUN, blood urea nitrogen; CBC, complete blood cell count; CT, computed tomogra-phy; MRI, magnetic resonance imaging. aThyroid function tests include thyroxine (T4), thyrotropin, free T4. bGonadal function tests: Tanner staging for boys older than 14 years at the time of evaluation or girls not yet menstruating by age 12 years or if menses become irregular; follicle-stimulating hormone, luteinizing hormone, and testosterone (semen analysis) or estradiol, as appropriate. SOURCE: Dreyer et al., 2002. Reprinted with permission. For many other areas of concern to survivors, there is a sufficient body of evidence to support general guidance on screening and evaluating late effects of childhood cancer. Recently published recommendations are shown in Table 5.2 (Dreyer et al., 2002). More extensive practical advice to physicians on providing follow-up care for childhood cancer survivors is available (Schwartz et al., 1994) and efforts are underway by the COG Late Effects Committee to create practice guidelines for follow-up care (Bhatia, 2002). Information on childhood cancer late effects and advice on follow-up care are also available for survivors and their families (Keene et al., 2000).

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FIGURE 5.2 Follow-up of individuals treated in childhood for ALL. SOURCE: Schwartz et al., 1994. Reprinted with permission.

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16.   Conduct dipstick urinalysis for leukocytes annually for sexually active male and female adolescents. 17.   For children at risk of lead exposure consult the AAP statement “Screening for Elevated Blood Levels” (1998). Additionally, screening should be done in accordance with state law where applicable. 18.   TB testing per recommendations of the Committee on Infectious Diseases, published in the current edition of Red Book: Report of the Committee on Infectious Diseases. Testing should be done upon recognition of high-risk factors. 19.   Cholesterol screening for high-risk patients per AAP statement “Cholesterol in Childhood” (1998). If family history cannot be ascertained and other risk factors are present, screening should be at the discretion of the physician. 20.   All sexually active patients should be screened for sexually transmitted diseases (STDs). 21.   All sexually active females should have a pelvic examination. A pelvic examination and routine Pap smear should be offered as part of preventive health maintenance between the ages of 18 and 21 years. 22.   Age-appropriate discussion and counseling should be an integral part of each visit for care per the AAP Guidelines for Health Supervision III (1998). 23.   From birth to age 12, refer to the AAP injury prevention program (TIPP®) as described in A Guide to Safety Counseling in Office Practice (1994). 24.   Violence prevention and management for all patients per AAP Statement “The Role of Pediatrician in Youth Violence Prevention in Clinical Practice and at the Community Level” (1999). 25.   Parents and caregivers should be advised to place healthy infants on their backs when putting them to sleep. Side positioning is a reasonable alternative but carries a slightly higher risk of SIDS. Consult the AAP statement “Changing Concepts of Sudden Infant Death Syndrome: Implications for Infant Sleeping Environment and Sleep Position” (2000). 26.   Age-appropriate nutrition counseling should be an integral part of each visit per the AAP Handbook of Nutrition (1998). 27.   Earlier initial dental examinations may be appropriate for some children. Subsequent examinations as prescribed by dentist. Key: • = to be performed * = to be performed for patients at risk S = subjective, by history O = objective, by a standard testing method ← • → = the range during which a service may be provided, with the dot indicating the preferred age. SOURCE: www.aap.org/policy/re9939.html.

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Box 5.5 Functions of an Ideal Follow-Up System for Survivors of Childhood Cancer Provide services Identify late effects (or the risk of late effects) Review prior disease history and treatments Conduct clinical examinations and tests Evaluate symptoms Develop plan for long-term surveillance Coordinate specialists involved in diagnosis and treatment of late effects (e.g, cardiologists, neurologists) Ameliorate late effects through rehabilitation services (e.g., physical therapy, occupational therapy) Provide psychosocial support Counsel regarding educational and occupational issues Counsel regarding disease prevention, health promotion Refer to clinical trial or other research initiative Provide care coordination/case management (including the transition from pediatric to adult care) Provide family-based care and education and outreach to survivors and their families in the community Educate and train professionals Consult with primary care providers Consult with schools and educators Provide long-term perspective to oncology care providers Alert providers and researchers to new late effects Train primary care and oncology care providers Conduct research Measure prevalence of late effects Identify etiology of late effects Evaluate effectiveness of interventions to ameliorate late effects Evaluate and modify treatment approaches to minimize late effects Develop standards of follow-up care The Late Effects Committee of the United Kingdom Children’s Cancer Study Group has recently suggested a tiered approach with postal or telephone contacts made with those at lowest risk of late effects, follow-up by a nurse or primary care doctor for those at moderate risk, and a medically supervised late effects clinic for those with high risk of late effects (Wallace et al., 2001) (Table 5.3).

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TABLE 5.3 Possible Levels of Follow-Up More Than 5 Years from Completion of Treatment Level Treatment Method of follow-up Frequency Examples of tumors 1 • Surgery alone • Low risk chemotherapy Mail or telephone 1-2 years • Wilms’ tumor stage I or II • Langerhans cell histiocytosis (single system disease) • Germ cell tumors (surgery only) 2 • Chemotherapy • Low dose cranial irradiation (<24 Gy) Led by nurse or primary care doctor 1-2 years • Most patients (e.g., ALL in first remission) 3 • Radiotherapy, except low dose cranial irradiation • Megatherapy Medically supervised late effects clinic Annual • Brain tumors • After bone marrow transplant • Patients with stage IV tumors (any tumor type)   SOURCE:Wallace et al., 2001. A novel strategy for long-term follow-up has been proposed that relies extensively on distance networking through the Internet and telecommunication technologies (Oeffinger, 2002). This model would link the survivor to a nationally supported center that would be responsible for facilitating health care needs. The center would have four components: a national cancer registry, care coordinators, a repository of information, and a decision-making board. Upon diagnosis of cancer, children would be entered in the registry. Upon completion of primary therapy, the treating cancer center would provide the national center with a summary of treatment and complications. Care coordinators would develop a survivor-specific plan of action, assess health care resources in the survivor’s environment, and orchestrate care with appropriate health care providers located near the survivor. The repository would include guidelines for screening and surveillance, current literature about survivor-related health care problems and needs, and patient and physician education materials. The board, including health care providers and survivors, would garner necessary resources to facilitate and enhance the process.

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A comprehensive regional approach to providing follow-up care to survivors of childhood cancer has been adopted by the Canadian province of Ontario (Greenberg, 2002). A network of after-care programs is being set up by the Pediatric Oncology Group of Ontario (POGO) to extend follow-up care through adulthood. The program integrates research and health care, with a focus on clinical care, surveillance, and health promotion and disease prevention. A set of consensus algorithms and guidelines is available to providers. Figure 5.4 illustrates one of their algorithms, a strategy for providing neuropsychological testing for long-term survivors of childhood cancer. Aftercare through the POGO program generally begins two years after completion of all therapy (or four years from diagnosis). Visits are annual for up to 10 years following diagnosis and biannual thereafter, although in some specified circumstances, visits may be made more frequently (e.g., when growth failure is being monitored). An essential component of the program is a “Passport to Health,” which is a credit card sized, portable, comprehensive abbreviated summary of diagnosis, treatment, complications, potential adverse effects, hepatitis status, and other relevant information necessary for the survivor and his or her health care practitioners. In the area of health education, counseling is provided to minimize risk, written materials are provided on prevention and aftercare, and links to sources of information (e.g., books, websites) are given. A centralized database will link childhood treatment data to outcomes using standardized data collection procedures. Some sites of care will be in a pediatric setting, while others will be incorporated in internal medicine programs or adult-based cancer centers. Services to residents of remote areas will be provided by a traveling team of oncology experts. This system, while still in its development, appears to incorporate many of the ideal components outlined at the beginning of this chapter. An interesting model of health care delivery and research outside of the area of cancer is a program of the Cystic Fibrosis Foundation (CFF) that accredits a network of more than 115 care centers across the United States.4 CFF-accredited centers must meet criteria for personnel, facilities, services, and research (www.cff.org/chapters_and_care_centers/, last accessed March 15, 2003). Care is provided according to CFF clinical practice guidelines developed by an advisory group of CF experts. Consensus conferences are held to update guidelines. A central patient registry tracks the health of 4   Cystic fibrosis is a genetic disease caused by a single gene defect that results in the faulty transport of salt in organs such as the lungs and the pancreas. The defective gene causes the body to produce thick, sticky mucus that blocks the ducts in these organs, disrupting their normal functions (CFF, 2002).

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FIGURE 5.4 Neuropsychological testing for long-term survivors of childhood cancer—Pediatric Oncology Group of Ontario. SOURCE: Greenberg, 2002.

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patients enrolled in CFF clinics and analyses of these data have provided new insights into the consequences of the disease (e.g., growth and development, reproduction), treatment, and preventive health strategies (Cystic Fibrosis Foundation, 2002). The dual focus on guideline-driven standardized care and research is an attractive feature of this program and such an initiative should be considered for its applicability to survivors of childhood cancer. To date, there have been no demonstration projects to assess alternative models of delivery and no evaluations of existing programs of follow-up care to survivors of childhood cancer. It is likely that multiple models of care will be needed to accommodate the varied circumstances and preferences of survivors and families. For some survivors, long-term follow-up clinics will serve survivors’ needs best. For other survivors, primary care providers may be able to provide the most appropriate follow-up care, especially as other chronic illnesses of age develop. We do not yet know what will work best. Demonstration and research programs conducted under the discretionary grant programs of the Maternal and Child Health Block Grant Program may inform the development of delivery systems appropriate for cancer survivors. These programs have included initiatives aimed at improving care for individuals with hemophilia, sickle cell anemia, and traumatic brain injury (see a description of selected grants in Chapter 7). Statewide Comprehensive Cancer Control Opportunities in the United States to develop regional approaches to care for childhood cancer survivors could be facilitated by the Centers for Disease Control and Prevention (CDC) efforts to build the capacities of states—and, in turn, their local partners—to both develop and implement comprehensive cancer control plans. As part of CDC’s National Comprehensive Cancer Control Program, such plans have been defined as those with an integrated and coordinated approach to reducing the incidence and the rates of morbidity and mortality from cancer through prevention, early detection, treatment, rehabilitation, and palliation (www.cdc.gov/cancer/ncccp/index.htm, accessed March 15, 2003). CDC has identified a useful framework for the establishment of a state cancer control program and has provided various models for comprehensive planning and evaluation. Essential elements of a comprehensive plan include (Abed et al., 2000a; Abed et al., 2000b) the following: strategies and mechanisms for developing and maintaining partnerships, assessments and surveillance,

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infrastructure development, public education, professional education, policy and legislative activities, and evaluation and monitoring. Phases of implementation of a comprehensive state plan include setting optimal objectives that are data-driven, determining optimal strategies that are science-driven, establishing feasible priorities given the capacity, and implementing effective strategies that are assessed by evaluations of outcomes (Abed et al., 2000a; Abed et al., 2000b). Many states have in place some of the essential elements of a comprehensive program. Nearly half of the states, for example, have cancer registries that achieve standards of completeness, timeliness, and coverage to provide accurate cancer incidence data for planning and evaluation. According to a recent CDC assessment, however, only 13 states have comprehensive state plans that are being implemented (or that are ready to be implemented), 14 states and the District of Columbia are creating a new plan (or are updating an old plan), and 23 states have no plan or one that is outdated (Figure 5.5). FIGURE 5.5 Comprehensive cancer control plans, 2001. SOURCE: L. Given, CDC, Division of Cancer Prevention and Control, personal communication to Maria hewitt, July 10, 2001.

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Although considerable variations in state capacities have been observed and certain barriers to implementation have been identified, it is unclear what levels and types of investment are needed to build state and local capacities and how these needs may vary across the nation. CDC’s Division of Cancer Prevention and Control spends an estimated $250 million on cancer control and prevention annually, but much of the money is categorically targeted to specific activities (e.g., cancer registries), populations, or cancer sites. Since 1998, 19 states and 1 tribal organization have received grant support totalling approximately $37 million from CDC to develop and implement a comprehensive cancer control (CCC) plan. In addition, states and tribal organizations have been provided technical assistance regarding CCC plans with $1 million from the CDC (Leslie Given, Division of Cancer Prevention and Control, CDC, personal communication to Maria Hewitt, September 9, 2002). The CDC-funded states are developing a variety of programs, depending on the needs and organizational preferences of each state. The key to each program is, however, the same—fostering collaborative efforts among many sectors within the states to increase individual and organizational awareness of the state’s cancer burden and to achieve objectives that will lead to future reductions in that burden (Tim Byers, University of Colorado School of Medicine, unpublished). Resources appear to be inadequate to meet the need for CCC plan development and implementation. In 2002, for example, CDC had resources to support only half of the requests for assistance from states, territories, and Indian tribes in response to its National Cancer Prevention and Control Program Announcement (Leslie Given, Division of Cancer Prevention and Control, CDC, personal communication to Maria Hewitt, IOM, August 26, 2002). The CDC estimates that $30 million per year would be needed before states would have plans developed and implementation in progress by 2005 (Leslie Given, Division of Cancer Prevention and Control, CDC, personal communication to Maria Hewitt, IOM, August 26, 2002). A bill recently introduced in Congress, the Cancer Survivorship Research and Quality of Life Act of 2002 (HR 4963), calls for expansion of CDC comprehensive cancer programs to improve cancer survivorship. Among its provisions is support of innovative post-treatment programs, services, and demonstrations designed to support and advance cancer survivorship. Comprehensive state plans have potential, but to date, very few have addressed issues related to pediatric cancer or to survivorship issues. SUMMARY AND CONCLUSIONS Fifty to sixty percent of children with cancer are initially treated in specialized cancer centers, but somewhat fewer—an estimated 40-45 percent—are receiving follow-up care in specialized clinics. A disturbing find-

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ing from recent research is that the majority of cancer survivors appear to be unaware of their level of risk and need for follow-up care, and to lack the specific information regarding their disease history and treatment that would be needed by a clinician to provide appropriate care. The need for a plan for survivorship follow-up care is widely acknowledged and general recommendations for such care are available to clinicians, survivors, and their families. An active research program is needed to address the many outstanding questions regarding the necessary components of follow-up care in the identification, prevention, and amelioration of specific late effects. Needed also are evaluations of models of care to assess which of them confer benefits in terms of preventing or ameliorating late effects and improving quality of life, and which survivors might prefer. Cancer survivors, while having some unique needs, have similarities with survivors of other chronic illness. There are likely opportunities to develop efficient systems of care to address at least some of the needs of individuals with a broad range of chronic illnesses and conditions. REFERENCES Abed J, Reilley B, Butler MO, Kean T, Wong F, Hohman K. 2000a. Comprehensive cancer control initiative of the Centers for Disease Control and Prevention: an example of participatory innovation diffusion. J Public Health Manag Pract 6(2):79-92. Abed J, Reilley B, Butler MO, Kean T, Wong F, Hohman K. 2000b. Developing a framework for comprehensive cancer prevention and control in the United States: an initiative of the Centers for Disease Control and Prevention. J Public Health Manag Pract 6(2):67-78. Alliance for Childhood Cancer. 2002. Core Principles for Comprehensive Quality Cancer Care for Children and Adolescents. Washington, DC: Alliance for Childhood Cancer Care. American Academy of Pediatrics. 1996. Transition of care provided for adolescents with special health care needs. American Academy of Pediatrics Committee on Children with Disabilities and Committee on Adolescence. Pediatrics 98(6 Pt 1):1203-6. American Academy of Pediatrics. 1997. Guidelines for the pediatric cancer center and role of such centers in diagnosis and treatment. American Academy of Pediatrics Section Statement Section on Hematology/Oncology. Pediatrics 99(1):139-41. American Academy of Pediatrics. 2002a. The medical home. Pediatrics 110(1 Pt 1):184-6. American Academy of Pediatrics. 2002b. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110(6 Pt 2):1304-6. Arceci RJ, Reaman GH, Cohen AR, Lampkin BC. 1998. Position statement for the need to define pediatric hematology/oncology programs: a model of subspecialty care for chronic childhood diseases. Health Care Policy and Public Issues Committee of the American Society of Pediatric Hematology/Oncology. J Pediatr Hematol Oncol 20(2):98-103. Bhatia S. 2002. Children’s Oncology Group Late Effects Committtee. National Cancer Policy Board Meeting. Washington, DC. Bleyer WA, Smith RA, Green DM, DeLaat CA, Lampkin BC, Coltman CA, Brady AM, Simon M, Krischer JP, Menck HR. 1993. American Cancer Society Workshop on Adolescents and Young Adults with Cancer. Workgroup #1: Long-term care and lifetime follow-up. Cancer 71(7):2413.

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