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Facilitating Care for Childhood Cancer Survivors: Integrating Children’s Oncology Group Long-term Follow-up Guidelines and Health Links in Clinical Practice Debra Eshelman, MSN, RN, CPNP Wendy Landier, MSN, RN, CPNP, CPON Teresa Sweeney, MSN, RN, CPNP Allison L. Hester, MSN, RN, CPNP Kathy Forte, MS, RN, CPNP Joan Darling, PhD Melissa M. Hudson, MD

Childhood cancer survivors are a growing, vulnerable group with health care needs unique to their cancer treatments. They may experience many late physical and psychological complications (late effects) of treatment including organ dysfunction, infertility, second neoplasms, chronic hepatitis, musculoskeletal problems, alterations in cognitive function, and myriad psychosocial problems. Health care providers may be unaware of actual or potential survivor problems. Until recently, there were no clearly defined, easily accessible risk-based guidelines for cancer survivor follow-up care. This article will use a case-study approach to demonstrate how the newly developed Children’s Oncology Group Long-term Follow-up Guidelines and Health Links can be used in clinical practice to improve awareness about late effects and the importance of follow-up care for childhood cancer survivors. The Children’s Oncology Group Guidelines and Health Links were created by a multidisciplinary team of health care experts and patient advocates to provide a systematic plan for pediatric cancer survivor follow-up care and health education across the cancer continuum. © 2004 by Association of Pediatric Oncology Nurses DOI: 10.1177/1043454204268875

Key words: childhood cancer survivors, guidelines, health education

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hildhood cancer survivors are a growing, vulnerable group with unique health care needs arising as a result of treatment for their pediatric malignancies. According to recent data, there are about 270,000 individuals in the United States who have survived childhood cancer (Ries et al., 1999). Among the total US population, about 1 in every 1000 individuals is a childDebra Eshelman, MSN, RN, CPNP, is a nurse practitioner at the After the Cancer Experience Program, Children’s Medical Center, Center for Cancer and Blood Disorders, Dallas, Texas. Wendy Landier, MSN, RN, CPNP, CPON, is the clinical director of the Survivorship Clinic, City of Hope National Medical Center, Duarte, California. Teresa Sweeney, MSN, RN, CPNP, and Allison L. Hester, MSN, RN, CPNP, are pediatric nurse practitioners at the After Completion of Therapy Clinic, St. Jude Children’s Research Hospital, Memphis, Tennessee. Kathy Forte MS, RN, CPNP, is currently on leave from Children’s Healthcare of Atlanta, Atlanta, Georgia. Joan Darling, PhD, is a patient advocate at Children’s Oncology Group, Arcadia, California. Melissa M. Hudson, MD, is the director of the After Completion of Therapy Clinic, St. Jude Children’s Research Hospital, Memphis, Tennessee. Address for correspondence: Debra A. Eshelman, MSN, RN, CPNP, Children’s Medical Center, Center for Cancer and Blood Disorders, After the Cancer Experience: Pediatric and Young Adult Survivor Program, 1935 Motor Street, Dallas, TX 75235; phone: 214456-8301; fax: 214-456-2095; e-mail: [email protected], cc: [email protected].

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hood cancer survivor, and among young adults ages 20 to 39, an estimated 1 in 640 individuals is a childhood cancer survivor (Ries et al., 1999). Survivors may experience many late physical and psychological complications (late effects) of treatment including organ dysfunction, infertility, second neoplasms, chronic hepatitis, musculoskeletal problems, alterations in cognitive function, and myriad psychosocial problems (Hudson et al., 2003; Keene, Hobbie, & Ruccione, 2000; Krischer et al., 1997; Neglia et al., 2001; Reimers et al., 2003; Relander, Cavallin-Stahl, Garwicz, Olsson, & Willen, 2000; Schwartz, Hobbie, Constine, & Ruccione, 1994; Sklar, 1995; Strauss et al., 2001; Strickland et al., 2000). A significant proportion of survivors experience adverse health effects (Hudson et al., 2003; Oeffinger, Eshelman, Tomlinson, Buchanan, & Foster, 2000). Since cures only recently approached 78% for all pediatric malignancies (Ries et al., 2002), childhood cancer survivors represent a relatively young, at-risk group that will require follow-up over many decades. Consequently, this young group of survivors may develop late effects that could be exacerbated during organ senescence, or they may experience late effects that have not yet been clearly defined. The Institute of Medicine’s (IOM’s) recently published report “Childhood Cancer Survivorship: Improving Care and Quality of Life” (Hewitt, Weiner, & Simone, 2003) underscores the unique health care needs of childhood cancer survivors that are often overlooked in today’s complicated health care systems. In this report, 5 recommendations are proposed in a comprehensive policy agenda that includes improved health care delivery, expanded research, and investments in education and training. These 5 recommendations include the following: 1. developing evidence-based clinical practice guidelines for survivor care, 2. defining a minimum set of standards for systems of comprehensive, multidisciplinary followup care that link specialty and primary care, 3. improving awareness of late effects and their implications for long-term health among childhood cancer survivors and their families, 4. improving professional education and training regarding late effects and their management for both specialty and primary care providers, and 5. fully supporting the Health Resources and Services Administration’s Maternal and Child

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Health Bureau in implementing Healthy People 2010 goals for children with special health care needs. This article shows how clinical practice guidelines for survivor care (Children’s Oncology Group Longterm Follow-up Guidelines and Health Links) can be used in clinical practice to support the IOM’s recommendations by facilitating appropriate risk-based care of long-term childhood cancer survivors.

Children’s Oncology Group Long-term Follow-up Guidelines Children’s Oncology Group Long-term Follow-up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers (COG LTFU Guidelines) were a collaborative effort between COG Nursing Discipline and the Late Effects Committee. These riskbased, exposure-related clinical practice guidelines provide recommendations for screening and management of late effects that may potentially arise as a result of therapeutic exposures used during treatment of childhood, adolescent, and young adult cancers (Children’s Oncology Group, 2004). They are designed for use beginning 2 or more years after completion of therapy; however, they are not designed to provide recommendations for surveillance of the survivor’s primary disease. Implementation of these guidelines is intended to increase awareness of potential late effects and to standardize and enhance survivor follow-up care. The methodology describing development of these guidelines is detailed in another article being published elsewhere (W. Landier, personal communication, February 9, 2004).

Health Link Development As the COG LTFU Guidelines were being developed, the COG developers recognized that their usefulness would be greatly enhanced by patient education materials specific to certain sections of the guidelines. Therefore, we developed a series of educational handouts (Health Links) targeting 33 key topics within the guidelines. A multidisciplinary panel of authors participated in Health Link development (see Table 1). A

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Table 1. Health Link Authors Author Julie Blatt, MD Debra Eshelman RN, MSN, CPNP Sarah Friebert, MD Debra L. Friedman, MD, MS Sharon Frierdich, RN, MS, CPNP Allison Hester, RN, MSN, CPNP Melissa M. Hudson, MD Asako Komiya, RN, MSN, PNP Wendy Landier, RN, MSN, CPNP Deborah Lafond, MS, RNCS, PNP Marcia Leonard, RN, CPNP Anne Mauck, RN, MSN, CPNP Charlene Maxen, RN, CNP Katherine Myint-Hpu, MSN, MPH, PNP Kathy Ruble, RN, MSN, CPNP Margery Schaffer, RN, MSN, CPNP Susan Shannon, RN, MSN, CPNP Teresa Sweeney, RN, MSN, CPNP Sally Wiard, MSW, LCSW

Institution University of North Carolina, Chapel Hill, North Carolina Children’s Medical Center, Dallas, Texas Children’s Hospital Medical Center–Akron, Akron, Ohio Children’s Hospital and Regional Medical Center, Seattle, Washington University of Wisconsin Children’s Hospital, Madison, Wisconsin St. Jude Children’s Research Hospital, Memphis, Tennessee St. Jude Children’s Research Hospital, Memphis, Tennessee City of Hope Comprehensive Cancer Center, Duarte, California City of Hope Comprehensive Cancer Center, Duarte, California Children’s National Medical Center, Washington, DC C. S. Mott Children’s Hospital, Ann Arbor, Michigan Virginia Commonwealth University Health System, Richmond, Virginia Children’s Hospital Medical Center–Akron, Akron, Ohio Georgetown University Medical Center, Washington, DC Johns Hopkins Hospital, Baltimore, Maryland Children’s Medical Center, Dayton, Ohio Miller Children’s Hospital, Long Beach, California St. Jude Children’s Research Hospital, Memphis, Tennessee St. Jude Children’s Research Hospital, Memphis, Tennessee

standard format (see Table 2) was developed to ensure uniformity of key content areas within the Health Links. Each Health Link underwent 2 levels of review. The first was to ensure consistency in content and recommendations between each Health Link and its correlating guideline. Each Health Link was then reviewed by at least 1 member of the Late Effects Committee with expertise in the specific clinical topic and by at least 1 patient advocate to provide feedback on content presentation to the lay public. Additional clinicians with expertise in specific guideline topics also reviewed some of the Health Links. Following completion of the review process, the Health Links were uniformly formatted, and a volunteer graphic artist added illustrations and diagrams where applicable. An index was created to cross-link the Health Links to specific sections of the guidelines. Accessing the Guidelines on the Web The COG LTFU Guidelines are available on the COG Web site at www.survivorshipguidelines.org. COG members and the public have access to these guidelines at no cost. Adobe Acrobat Reader software is required to view or print guidelines or Health Links and can be downloaded free at www.adobe.com.

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Using the Guidelines and Health Links in Clinical Practice Three case studies are presented (a Wilms tumor survivor, an acute lymphoblastic leukemia [ALL] survivor, and a Hodgkin’s lymphoma survivor) to demonstrate how a nurse can use (1) the COG LTFU Guidelines to facilitate patient care and (2) the Health Links to assist survivor/family education. Illustrative sample excerpts from the guidelines and Health Links accompany the first case. Readers are encouraged to download the entire set of guidelines and Health Links from the COG Web site.

Case Study 1: Wilms Tumor Survivor Gerardo, a 14-year-old boy, presents 10 years after treatment for stage III Wilms tumor. His treatment included a right nephrectomy followed by 6 months of vincristine and dactinomycin. On review of systems, he has no significant complaints. Physical examination is normal. Urinalysis and kidney function tests (blood urea nitrogen [BUN] and creatinine) done today are within normal limits. His baseline liver panel was normal when he entered the late effects program 5 years ago.

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Table 2. Standard Format for Health Link Content Required Content Explanation of potential late effect Explanation of risk factors for developing the late effect

Description of common symptoms of the late effect Explanation of conditions that may exacerbate the late effect Recommended screening for the late effect What to expect if screening test is positive Brief explanation of how the late effect is treated Health-promoting behaviors/interventions

Details Explanation of the basic function of the affected organ, if applicable Description of who is at highest risk based on information from the guidelines (eg, specific chemotherapy or radiation doses, predisposing conditions) If applicable (eg, significant slowing of height velocity may be a symptom of growth hormone deficiency) If applicable (eg, the potential for pregnancy to negatively affect cardiac function after anthracycline chemotherapy) Recommendations must specifically match the guidelines Further recommended tests/interventions If applicable (eg, thyroid hormone replacement for hypothyroidism) If applicable (eg, smoking cessation)

A review of applicable sections of the COG LTFU Guidelines (see Table 3) shows that late-onset complications have not been observed after treatment with dactinomycin; however, baseline liver function tests are recommended to ensure full recovery has been made from any acute effects. Given that Gerardo had normal ALT, AST, and bilirubin levels 5 years ago, he does not need to have these liver function tests repeated. Vincristine may cause peripheral sensory or motor neuropathy that typically develops during therapy and resolves after discontinuation of medication. Neuropathy in a long-term survivor usually represents a persistent effect from treatment. Gerardo is 10 years post therapy, so new neurologic sequelae from vincristine are not anticipated. Since Gerardo underwent a nephrectomy, his follow-up should include continued surveillance of his remaining kidney by annual evaluation of blood pressure, urinalysis, and kidney function studies (BUN and creatinine). If abnormalities are detected, additional renal function assessment is indicated (Na, K, Cl, CO2, calcium, magnesium, and phoshorus levels; glomerular filtration rate scan; or urinary creatinine clearance study) and nephrology consultation should be considered. Patient education for Gerardo should focus on strategies for maintaining the health of his remaining kidney. The importance of yearly follow-up with a physical examination (specifically monitoring blood pressure), urinalysis, and BUN/creatinine should be stressed.The Health Link, “Keeping Your Single Kidney Healthy” (see Figure 1), is targeted to the health education needs of survivors who have had nephrectomies. Using the Health Link as a guide, Gerardo should be encouraged

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to drink plenty of water and seek medical attention immediately for symptoms suggestive of urinary tract infection. He should be counseled that nonsteroidal anti-inflammatory medications should be used with caution, especially if combined with caffeine or codeine. Many patients may not be aware that some over-thecounter medicines contain aspirin or ibuprofen, so if there are any ingredients that he does not understand, Gerardo should be encouraged to carefully read medicine labels and ask his pharmacist or health care provider. It is also imperative to review the importance of protecting the kidney from external physical injury. Some health care providers recommend that mononephric patients avoid contact sports or at least wear a kidney guard for such sports as football or hockey. The potential for contact sports predisposing the kidney to blunt trauma should be discussed and recommendations formulated for Gerardo. Also, the importance of correctly wearing a seat belt (across the hips, not at the waist) and using common sense when bicycling should be emphasized since most kidney injuries occur during car accidents or bicycle falls. Finally, Gerardo should be advised of the importance of seeking medical attention immediately in the event of kidney injury.

Case Study 2: ALL Survivor Ann, a 12-year-old survivor of ALL, was diagnosed at 2 years old. She had central nervous system (CNS) involvement at diagnosis. Her therapeutic exposures (text conitnues on pg. 278)

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Table 3. Selected Guideline Sections to Direct Care of Patient in Case Study 1 Therapeutic Agent Antitumor antibiotics Dactinomycin

Plant alkaloids Vincristine Vinblastine Clinician Info Link Acute toxicities most commonly occur and usually resolve prior to patients entering long-term follow-up Neuropathy can persist after treatment and is typically not late in onset

Surgery Nephrectomy

Section Number

24

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Potential Late Effects

Risk Factors

No known late effects (Dactinomycin has been associated with acute venoocclusive disease, from which the majority of patients recover without sequelae) See related topics: Mercaptopurine; Methotrexate; Hepatic radiation; Transfusion (chronic hepatitis B and C); Hematopoietic cell transplant (liver toxicity)

Treatment factors: Hepatic radiation

Peripheral sensory or motor neuropathy: Areflexia; Weakness; Foot drop; Parasthesias

Treatment factors Combined with cisplatin

Highest Risk

Periodic Evaluation

Physical exam

ALT, AST, bilirubin

Medical conditions Anorexia; Severe weight loss

Medical conditions CharcotMarieTooth disease

Minimum Recommended Frequency

Health Protective Counseling

Yearly

Health Link: Liver Health

Prothrombin time for evaluation of hepatic synthetic function in patients with abnormal liver screening tests Screen for viral hepatitis in patients with persistently abnormal liver function or any patient transfused prior to 1993 Gastroenterology/hepatology consultation in patients with persistent liver dysfunction Hepatitis A and B immunizations in patients lacking immunity Physical therapy referral for patients with symptomatic neuropathy Physical therapy and occupational therapy assessment of hand function Treatment with anticonvulsant effective for neuropathic pain (eg, gabapentin and amitriptyline)

Baseline at entry into long-term follow-up

Neurologic exam

Yearly, until 2 to 3 years after therapy; continue to monitor yearly if symptoms persist

Health Link: Peripheral Neuropathy

Considerations for Further Testing and Intervention

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Vasospastic attacks (Raynaud’s phenomenon)

Health behaviors Tobacco use; Illicit drug use

History Physical exam

Yearly

Health Link: Vasodilating medications (calcium Raynaud’s Phenomenon channel blockers, α blockers) for Counsel to wear patients with frequent, severe appropriate protective vasospastic attacks unresponsive to clothing in cold behavioral management environments and to not use tobacco or illicit drugs

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Proteinuria; Hyperfiltration ; Renal insufficiency; Hydrocele See related topics: Ifosfamide; Cisplatin/Carboplatin; Methotrexate; Abdominal/pelvic radiation; Cystectomy

Treatment factors Combined with other nephrotoxic therapy: Cisplatin, Carboplatin; Ifosfamide; Kidney irradiation; Abdominal irradiation; Aminoglycosides; Amphotericin; Immunosuppresants; Cyclosporine; Methotrexate

Blood pressure

Yearly

Health Link: Single Kidney Precautions See also: Kidney Health

Na, K, Cl, CO2 Ca, Mg, PO4 ; Creatinine clearance or glomerular filtration rate

Obtain in patients with abnormal blood pressure, urinalysis, BUN, or creatinine; If abnormal, repeat as clinically indicated

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Blood urea nitrogen Yearly (BUN), creatinine, urinalysis

Nephrology consultation for patients with hypertension, proteinuria, or progressive renal insufficiency

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Figure 1. Sample Health Link

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Figure 1. continued

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included multiagent chemotherapy and CNS-directed therapy composed of intrathecal methotrexate and cranial radiation of 2400 cGy. She presents for her first evaluation since moving to a new state. Her mother has just read parts of the book Childhood Cancer Survivors: A Practical Guide to Your Future (Keene et al., 2000) and has many questions about the implications of her daughter’s cranial radiation. She notes that Ann has always had difficulty in school compared to her friends and siblings but thought that Ann’s academic problems were related to the family’s frequent relocation. She has also observed that Ann is shorter and weighs more than most of her friends. Focusing on health risks related to cranial radiation, the following issues should be discussed as potential late effects. In reviewing the COG LTFU Guidelines, cranial radiation puts Ann at risk for developing several problems including endocrinopathies (eg, growth hormone deficiency, precocious puberty, hypothyroidism), overweight/obesity, dental abnormalities, and cognitive dysfunction. After obtaining a thorough history and performing a clinical examination, it is noted that Ann has good dental hygiene, is overweight, and is not precocious or delayed (Tanner stage II, age 12) in her pubertal development. Ann brought her last set of labs and a growth chart from her previous clinical examination, which indicated that her height velocity had progressed normally along the 25th percentile. However, since Ann remains at risk for growth problems, her height and weight should be carefully assessed every 6 months until her growth is completed. Current evaluation of her thyroid function reveals that Ann is hypothyroid, so she should be referred to a local endocrinologist for ongoing management. Thyroid hormone replacement with levothyroxine sodium (Synthroid) may be initiated by the referring center before endocrine consultation. In addition, a copy of the Health Link “Thyroid Problems After Childhood Cancer” should be given to Ann and her mother. To address her mother’s concerns about Ann’s academic progress, the clinician should consult with Ann’s school or previous health care provider to determine if prior neuropsychological testing was done. If neuropsychological testing was not done, or if results of previous testing indicated a need for retesting or more comprehensive testing, Ann should be referred to a psychologist or center that offers these services. Some institutions have behavioral staff members (educational

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liaisons) that communicate with local schools about testing results and recommended remedial services for children with chronic diseases. If available, these individuals can be of great assistance to the family and local school in developing an individual education plan. A copy of the Health Link “Educational Issues After Treatment for Childhood Cancer” provides valuable information for Ann’s mother and teachers. In addition, Ann should be counseled regarding her risk of dental problems and encouraged to have routine dental evaluations every 6 months. A copy of the “Dental Health” Health Link should also be provided.

Case Study 3: Hodgkin’s Lymphoma Survivor Julie presents to the survivor clinic for her annual appointment. Julie is a 26-year-old long-term survivor of Hodgkin’s lymphoma diagnosed at 15 years old with involvement of bilateral supraclavicular and mediastinal lymph nodes and lungs. She was treated with combined modalities including chemotherapy with vinblastine, etoposide, prednisone, and doxorubicin (300 mg/m2) and bilateral lung radiation (1200 cGy) and radiation to the mantle field (2550 cGy). A review of the guidelines reveals that Julie is at risk for late effects involving eyes (cataracts), heart (cardiomyopathy, arrhythmia, coronary artery disease), lung (pulmonary fibrosis, restrictive lung disease), thyroid gland (hypothyroidism, nodules), skin (dysplastic nevi, skin cancer), peripheral nervous system (peripheral neuropathy, Raynaud’s phenomenon), mouth (xerostomia, accelerated dental decay), and bone (scoliosis, kyphosis, avascular necrosis). Julie also is at risk for therapyrelated acute myeloid leukemia and for secondary malignancies in the radiation field, which most commonly involve breast, skin, thyroid gland, soft tissue, and bone. Fortunately, at this time, Julie has experienced minimal long-term sequelae of her treatment exposures. Her yearly echocardiograms have been normal. She does not have scoliosis, kyphosis, avascular necrosis, or peripheral neuropathy (and is not expected to develop these as late-onset complications). Julie’s first mammogram at age 25 was normal, and her thyroid gland function has remained within normal limits. At her most recent survivor follow-up health maintenance evaluation,

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asymptomatic pulmonary dysfunction was detected, with mild restrictive changes (total lung capacity = 71%, forced vital capacity = 98%) and normal diffusion (diffusing lung capacity for carbon monoxide = 85%). Her bone density is considered low normal (within 1 standard deviation below the mean) by dual energy X ray absorptiometry scan. Julie is provided with the Web site address for the COG LTFU Guidelines. She is encouraged to discuss her treatment history and plan of care frankly and honestly with her providers, becoming her own long-term survivorship advocate. Her suggested yearly late effects evaluation includes a thorough clinical examination (including eye, skin, breast, thyroid gland, heart, and lungs), echocardiogram, mammography (with semiannual clinician breast examinations and monthly breast self-examinations), complete blood cell count with differential, and thyroid function studies. Julie should have dental evaluations every 6 months and fasting lipid profiles every 3 to 5 years. Since Julie has evidence of suboptimal bone density, she should continue to have periodic bone density studies. If she experiences new pulmonary problems (such as exertional dyspnea with exercise or other signs of respiratory distress), she should be referred to a pulmonologist for further evaluation. A chest radiograph and pulmonary function testing also should be done before any scheduled general anesthesia. Julie should have yearly Papanicolaou smears and screening for other adult-onset cancers as recommended for the general population by the American Cancer Society. Health education for Julie should include the importance of maintaining adequate calcium intake (at least 1200 mg calcium/d) for bone health and a regular exercise program (including aerobic activity for at least 30 minutes on most days of the week) to maintain cardiac health and pulmonary function. To facilitate comprehensive health education, Julie should also be directed to several Health Links, including (1) “Skin Health,” (2) “Dental Health Following Childhood Cancer Treatment,” (3) “Keeping Your Bones Healthy After Treatment for Childhood Cancer,” (4) “Thyroid Problems After Childhood Cancer,” (5) “Breast Cancer Following Treatment for Childhood Cancer: Are You at Risk?” (6) “Pulmonary Health,” (7) “Eye Problems After Treatment for Childhood Cancer,” (8) “Reducing the Risk of Second Cancers,” (9) “Health Promotion Through Diet and Physical Activity,” and (10) “Heart Problems After Treatment for Childhood Cancer.”

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Conclusion This article has illustrated the practical application of the guidelines in clinical care of childhood cancer survivors. Improving survivor health begins with education about actual or potential health care risks. Nurses play a key role in this process by educating survivors about late effects and empowering them to become proactive and engaged in their long-term follow-up care and health maintenance plans. The Health Links are one piece of this educational process. Additional study is needed to determine the effect of educational strategies on survivor health outcomes and to further refine evidence-based, long-term survivor guidelines.

Acknowledgments The authors wish to acknowledge the assistance of the following individuals who were extensively involved in development and review of the Health Links: Smita Bhatia, MD, MPH; Julie Blatt, MD; Louis S. Constine, MD; Debra Friedman, MD; Neyssa Marina, MD; Lillian Meacham, MD; Kevin Oeffinger, MD; and Charles Sklar, MD. Additional Health Link reviewers are acknowledged in the individual Health Links.

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