Linda A Jacobs Jane Alavi Angela DeMichele Steven Palmer Carrie Stricker and David Vaughn

1.0. INTRODUCTION

Cancer survivors experience a number of physiological and psychological sequelae, called late effects, as a consequence of their cancer treatment. In pediatric oncology, late effects of treatment have been studied for over two decades,1-2 and are therefore better understood than late effects as a result of cancer treatment during adulthood. However, identified late effects in adults include diverse phenomena such as decreased cognitive functioning in breast cancer survivors3 and increased cardiovascular morbidity in testicular cancer survivors4 compared to non-cancer controls. Although adults over 65 years of age comprise more than 60% of cancer survivors, little attention has yet been directed toward the long-term sequelae particular to older adult cancer survivors.

As the public health phenomenon of cancer survivorship grows, creative and diverse models must be developed to address the long-term needs of adult cancer survivors. Systematic approaches are needed within a variety of health care delivery settings in order to reach and respond to these growing millions, including both primary and specialty care settings. This chapter will provide some background information regarding the care and surveillance recommendations for pediatric and adult cancer survivors over the last few decades, and discuss the development, essential components, and ongoing evolution of the first adult cancer survivorship program in the country, the Lance Armstrong Foundation (LAF) Living Well After Cancer (LWAC) Program at the Abramson Cancer Center of the University of Pennsylvania. Other adult survivorship programs currently in existence and under development across the country will also be discussed.

2.0. HISTORICAL PERSPECTIVE 2.1. Initiatives in Pediatric Oncology

In the decades of the 1960s and 1970s, it became clear that the aggressive treatment of pediatric cancers had come at a cost to the survivors. Along with continuing improvement in cure rates, there were new problems appearing, including growth retardation, cardiac and pulmonary disease, neurological and cognitive disorders, and second malignancies. Studies of small groups of survivors in individual centers produced important data on these late effects as they became known, but statistical significance could not be achieved without larger multi-institutional research. Therefore, the Late Effects Study Group was formed in the 1970s. This consortium of 13 pediatric centers in North America and Europe performed a retrospective review in 1978.5 This group recorded the sequelae in 369 survivors of childhood cancer, all of whom had been diagnosed in 1972, thus permitting a 5-year follow-up. The results suggested that the medical problems experienced by survivors were likely to increase over time and that prospective, rather than retrospective studies would be required.

Thus, the first program for the systematic follow-up of pediatric cancer survivors was organized in 1983 at The Childrens' Hospital of Philadelphia (CHOP), by Anna Meadows and Wendy Hobbie.6 Eligible patients were those whose diagnosis had been made in 1970 or later and were diagnosed with cancer at any age up to 16 years. These survivors had not received treatment for their cancer in the last 2 years, and were alive at least 5 years since the date of diagnosis or since the last evidence of the disease. The patients were given a standardized physical examination, growth plots were maintained, and laboratory or radiological studies were ordered on an individual basis, depending upon the diagnosis, specific treatments, complications, and preexisting conditions. The focus of the clinic was to provide continuity of care with systematic evaluation and treatment as necessary. Research was also an important goal. In the first report of the results of this program, the investigators described that late effects of treatment or disease were present in 73% of the patients, and 41% were severely affected.6

Soon after the establishment of the clinic in Philadelphia, other pediatric centers organized follow-up programs. The After Completion of Therapy Clinic (ACT) was established at the St. Jude Children's Research hospital in 1984, and in 1987, a Long Term Survivors Program was started at Golisano Children's Hospital in Buffalo. By 1993, there were approximately 30 such programs in the United States.7 In a survey in 1997, Oeffinger found that 53% of centers which treated childhood cancer had long-term follow-up programs. Ninety-three percent of these programs were directed by a pediatric oncologist and 70% were also staffed by a nurse clinician or nurse practitioner.8

Currently, most of the programs have similar criteria for patient recruitment and offer similar follow-up studies. Patients are usually accepted if they completed cancer treatment at least 2 years earlier, and have been free of the disease for 2-5 years. In general, patients are under 18 years of age at entry into the program, and are often referred elsewhere for further follow-up at the age of 18. The patients are generally evaluated yearly, or more frequently in specific situations, such as during puberty. The goals for such programs are stated in the website of the Golisano Children's Hospital (www.stronghealth.com/services/childrens/patientcare/hemonc/ survivorcare.cfm): "to provide monitoring and counseling regarding late effects of therapy. These programs are not designed to be a primary clinic for these survivors but rather to complement care delivered by primary care providers. In addition to providing patient care and follow-up, these clinics are an educational and advocacy resource for patients, families and other health providers."

Follow-up programs are expanding their roles since the first programs were established, and today they often include social workers, counselors, and a group of specialists available for referrals. Institutions that are members of the National Cancer Institute-funded pediatric cooperative group, the Children's Oncology Group (COG), are required to have on-site follow-up programs. Consequently, the follow-up of childhood cancer survivors is in some ways made easier by the extent to which children with cancer are treated in specialized centers that are for the most part members of the COG. It is estimated that 50-60% of children with cancer are initially treated in these specialized cancer centers; however, only 40-45% of these patients receive follow-up care in specialized centers and relatively few of these centers have comprehensive, multidisciplinary programs.9 Despite these statistics, there are even fewer programs available for adult cancer survivors.

In addition, the COG, in collaboration with the nursing discipline and the Late Effects Committee, developed Long-Term Follow-up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Survivors that were released in March 2004 and can be found on the web at www.survivorshipguidelines.org. These guidelines represent a statement of consensus from a panel of experts in the late effects of pediatric cancer treatment. The recommendations are based on a thorough review of the literature as well as the collective clinical experience of the task force members, panel of experts, and multidisciplinary review panel (including nurses, physicians, behavioral specialists, and patient/parent advocates). Implementation of these guidelines is intended to increase awareness of potential late effects and to standardize and enhance follow-up care provided to survivors ofpediatric malignancies throughout the lifespan.

The Long-Term Follow-Up Guidelines were developed as a resource for clinicians who provide ongoing health care to survivors of pediatric malignancies. A basic knowledge of ongoing issues related to the long-term follow-up needs of this patient population is assumed. The screening recommendations in these guidelines are appropriate for asymptomatic survivors of childhood, adolescent, or young adult cancer presenting for routine exposure-based medical follow-up. More extensive evaluations are presumed, as clinically indicated, for survivors presenting with signs and symptoms suggesting illness or organ dysfunction. As new information becomes available, the guidelines will be updated periodically to reflect those changes. The COG recommends that clinicians check the COG website periodically for the latest updates and revisions.

3.0. FOLLOW-UP CARE FOR ADULT CANCER SURVIVORS

There have been a few studies examining screening behaviors of cancer survivors or exploring the non-cancer-related health care that survivors receive. Adult cancer survivors represent a steadily growing vulnerable population of patients who may not be receiving optimal care for non-cancer-related issues.10 Although there are studies reporting that cancer survivors have higher cancer screening rates than individuals without a cancer diagnosis,11 an extensive review of relevant studies from 1966-2005

suggested that the cancer survivor is at risk for many problems most likely related to the treatment received for their cancers.12 No recommendations exist for screening among adult cancer survivors. As long-term health issues specific to cancer survival are emerging as a public health concern, the medical community as well as adult cancer survivors and their families are contemplating and exploring the best venue for providing appropriate comprehensive follow-up care.

The adult oncology community has lagged significantly behind pediatric oncology in the development of survivorship follow-up programs, surveillance guidelines, as well as research with this population. In 2006 the Institute of Medicine (IOM) of the National Academies published a report by a committee that was established to examine the range of medical and psychosocial issues faced by adult cancer survivors, and to make recommendations to improve their health care and quality of life.13

These guidelines provide direction for those caring for adult cancer survivors until more specific data-based adult surveillance guidelines are developed. The IOM undertook the task of putting together a committee to examine the range of potential medical and psychosocial issues experienced by adult cancer survivors and produce a report focusing on the phase of care that follows primary treatment. The IOM report, From Cancer Patient to Cancer Survivor, Lost in Transition, was released on November 7, 2005 and the aims of this report are to:

1. Raise awareness of the medical, functional, and psychosocial consequences of cancer and its treatment.

2. Define quality health care for cancer survivors and identify strategies to achieve it.

3. Improve the quality of life of cancer survivors through policies to ensure their access to psychosocial services, fair employment practices, and health insurance.

The committee's findings and recommendations are directed toward cancer patients and their advocates, health care providers and their leadership, health insurers and plans, employers, research sponsors, and the public and their elected representatives. This report can be found on the web at www.iom.edu. The IOM report is an excellent first step toward raising awareness, and the debate continues regarding who should be providing care to the adult cancer survivor and where should this be happening. It is becoming apparent that there is no single answer to this issue. The many factors that must be considered include insurance, region of the country, and institutional-, disease-, and patient-specific factors.

As mentioned earlier, surveillance guidelines for the management of adult cancer survivors do not exist; however, the American Society of Clinical Oncology (ASCO) has taken the lead to begin the development of guidelines thus laying the foundation for the ongoing development of disease and treatment specific guidelines as data become available regarding late effects of treatment.

3.1. Surveillance Guidelines

In order to determine the oncology community's understanding of follow-up care for the adult cancer survivor, ASCO performed a survey of over 800 members who are mostly medical oncologists.14 A substantial proportion of the members surveyed stated that they would like more education and training with respect to caring for long-term cancer survivors. In addition, the survey demonstrated that 73% of oncologists believe that they should provide continuing care to cancer survivors; 32% of oncologists report that they "always" provide ongoing general medical care, including health maintenance, screening, and preventive services to cancer survivors in their practices; 47% of oncologists report that they "sometimes" provide these services; and 2% of oncologists report that they feel comfortable providing these services. Presently, no clinical practice guidelines exist to direct the health professionals in providing this care.14

In January 2005, ASCO formed the "Expert Panel on the Long-Term Medical Care of Adult Cancer Survivors," charged with the development of evidence-based clinical practice guidelines. The Panel is cochaired by Charles L. Shapiro, MD of Arthur James Cancer Hospital of Ohio State University and David J. Vaughn, MD of the Abramson Cancer Center of the University of Pennsylvania. The purpose of the proposed guidelines is "to provide health professionals with the knowledge and expertise to decrease morbidity and to improve the quality of life for adult survivors of cancer."5 The Panel is comprised of experts from the fields of medical oncology, radiation oncology, surgical oncology, behavioral science, cardiology, primary care, and patient advocacy.

The Panel created four working subgroups to identify important questions, review the literature, and develop clinical practice guidelines. The four working groups reflect the Panel's identification of four major topics to address in the proposed guidelines: (1) Cardiovascular morbidity and late cardiovascular effects of treatment in long-term adult cancer survivors; (2) Hormone replacement, osteoporosis, and sexual dysfunction in long-term adult cancer survivors; (3) Second cancers and cancer screening in long-term adult cancer survivors; and (4) Psychosocial concerns in long-term adult cancer survivors. The timeline set for the Panel will result in a final product for dissemination to members in the next few years.

3.2. The University of Pennsylvania Model of Care

In 2001 the LAF provided funding to support the development of an adult cancer survivorship program at the Abramson Cancer Center of the University of Pennsylvania. As a dedicated cancer survivorship program embedded within an NCI-designated Cancer Center, the LAF LWAC Program is the first adult cancer survivorship program in a specialty care setting. Dr. Anna Meadows of The Children's Hospital of Philadelphia, acquired the funding through a grant proposal to the LAF, and Linda Jacobs, PhD, RN was recruited to direct the development and all aspects of the program. The multidisciplinary composition of the LAF LWAC Program team has expanded over time and the director's leadership remains the central organizing element. Members of the team include the director of the program, an oncology advanced practice nurse who is a doctoral student studying the late effects of cancer treatment on older breast cancer patients, a behavioral scientist, a medical oncologist who specializes in urologic cancers, a breast oncologist, Dr. Anna Meadows and another general oncologist with an interest in survivors of childhood cancers, a cardiologist who focuses on the cardiovascular late effects of treatment, a cancer rehabilitation specialist, an exercise physiologist, a primary care provider with an interest in complementary and alternative medicine use for the late effects of cancer treatment, two psychosocial counselors, and a nutritionist.

The Penn survivorship program is a research, clinical, and education focused multidisciplinary effort that has evolved and expanded over the last 5 years. The LAF LWAC Program team meets on the third Monday of every other month to discuss program development, clinical issues, ongoing research projects, and ideas for new projects. Team members also report on presentations, special projects, and publications. The program components will be described in the following sections.

3.3. Research Program Component

Between 2001 and 2002 the LAF LWAC Program team focused on program development and it was determined that the establishment of a research focus was critical to the success of the program for a number of reasons: (1) surveillance guidelines had not been established for adult cancer survivors; therefore, survivorship research protocols needed to be developed that focus on the clinical issues identified by survivors and their providers; and (2) research funding is necessary to support the program.

A research database was established, questionnaires developed, and tools were chosen to evaluate the medical and psychosocial aspects of the survivorship experience. In addition, research proposals have been funded and the team continuously works to develop, refine, and submit new proposals based on clinical evidence gathered in the clinical component of the program. We have generated some preliminary data on characteristics of cancer survivors who have participated in the program to date that should provide a general overview of some of the highlights of patient sample that we have seen thus far. In the first 2 years of the program, we saw breast and testicular cancer survivors who were approximately 24 months since diagnosis. Figure 1 presents the pattern of symptoms reported by the breast cancer survivors. We also observed a significant relationship between number of symptoms reported and quality of life (Figure 2). The types of supportive services used by the breast cancer survivors are illustrated in Figure 3 and types of preventive health screenings this group sought are indicated in Figure 4. Related to maintenance of health over the long run we did observe that among the testicular cancer survivors attending the clinic (Table 1), a number of risk factors related to cardiovascular disease was observed, highlighting the importance of long-term monitoring for overall preventive health in cancer survivors and not just a focus on cancer surveillance (Figure 5).

3.4. Clinical Programs

The development of the clinical component of the LAF LWAC Program has been a challenge. Initially the plan was to develop a clinical care center for cancer survivors who were 2 years since diagnosis and collect vital information on each survivor that would be entered into a database. However, after a year of piloting the clinical programs with testicular and breast cancer survivors, it was evident that more than one model of care was needed to meet the needs of patients as well as the Cancer Center.

It was determined that what has been identified as practice and consultative models would be developed and further piloted at Penn again with the breast and testicular cancer survivors. Testicular cancer survivors were an excellent choice of patients for the practice model since this is a relatively small group of patients who are seen by one oncologist at Penn. In addition, testicular cancer is a good model of a curable neoplasm. These patients are generally young when diagnosed, and following these patients prospectively allows the survivorship program staff to explore the possibility of subclinical late effects and incorporate screening for late effects into follow-up visits.

Percentage of patients 0 10 20 30 40 50 60 70 80 90 100

Shortness of breath High cholesterol Forgetfulness Trouble concentration Trouble with calculations Rapid heart rate Chest pain Tightness in your chest Arm swelling side of your surgery Hand swelling side of your surgery Broken bones Bone pain Urinary frequency Burning when urinating Urine leakage when coughing Numbness/tingling in hands Numbness/tingling in feet Hot flashes Night sweats Vaginal dryness Decreased desire for sex Decreased satisfaction with sex Ringing in your ears Decreased hearing Weight gain (more than 10 lbs) Weight loss (more than 10 lbs)

Figure 1. Patterns of Symptoms Among Breast Cancer Survivors (N = 63).

22.6

26.2

30.0

30.6

73.8

11.5

18.6

50.8

62.3

The practice model is designed with the intention of providing routine follow-up care, and monitoring for recurrence while at the same time developing an individual risk profile for late effects of treatment based on age, family history, comorbidities, and cancer treatment history. The practice model has been expanded over the last few years to include survivors of Hodgkins and non-Hodgkin lymphoma, and more recently to include young adult survivors of childhood cancers. A transition program between the oncology programs at CHOP and the Abramson Cancer Center at Penn has been established and patients over the age of 21, followed in the Late Effects Clinic at CHOP, are referred to the LAF LWAC Program for follow-up. This program has been very successful and efforts are in place to assure that clinical and research programs with this group of survivors will flourish in the years ahead.

Angela Demichele

Number of symptoms

Figure 2. Relationship Between Number of Symptoms and Quality of Life Among Breast Cancer Survivors 2-5 Years Postdiagnosis (N = 93).

Number of symptoms

Figure 2. Relationship Between Number of Symptoms and Quality of Life Among Breast Cancer Survivors 2-5 Years Postdiagnosis (N = 93).

The breast cancer survivors' clinical program was very difficult to pilot and it became evident quickly that a different approach would be needed to manage breast cancer survivors. The breast cancer program at Penn is a large clinical and research focused effort with several medical oncologist/oncology nurse practitioner collaborative practice teams caring for patients. In addition to the large volume of patients that mandates a separate clinical program with dedicated staff for breast cancer

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Psychosocial counseling

Nutrition counseling

Figure 3. Use of Supportive Services by Breast Cancer Survivors (N = 63).

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Figure 4. Breast Cancer Survivors Preventive Health Screening (N = 63).

survivors alone, the issue of continuity of care with the primary oncology practice teams was an important consideration. Consequently, the LAF LWAC Program team determined that a consultative model approach would be piloted next with the breast cancer survivors. This model is structured as a research protocol outlining specific aims, as well as a series of questionnaires and tools that are used to collect primarily symptom and quality of life data. An already existing breast cancer database in the Rowan Breast Center at Penn was used to identify potential subjects. These patients are then followed prospectively with yearly mailings of study packets. Although patients were initially identified at 2 years postdiagnosis, it was determined that it would be most useful to collect baseline data when the patients present at diagnosis. In that

34.9

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Figure 5. Cardiovascular Risk Factors Among Testicular Cancer Survivors (N = 53).

Median age, years

51

(Range)

(26-77)

Frequency

Percent

Marital Status

Single

8

12.7

Married

40

63.5

Divorced

9

14.3

Lives With Partner

2

3.2

Separated

1

1.6

Widowed

3

4.8

Breast Cancer Staging

Stage I

24

38.1

Stage II

38

60.3

Stage III

1

1.6

Race/Ethnicity

White/Caucasian

50

79.4

ER Status

Negative

6

9.5

Positive

56

88.9

Not Reported

1

1.6

way data is collected through and posttreatment, providing a broader, clearer picture of the survivor's experience. The questionnaires used to collect data with the breast cancer survivors were designed and tested over the first year of the program in the clinical model and have been refined as the program evolved. Similar questionnaires are used with the other survivors seen in the clinical programs and will be used more broadly as the consultative program is expanded to include other cancer sites. Questionnaires are designed and revised to focus on population specific issues. The model was initially designated as consultative since the initial goal of the program was to gather clinical data on self-report questionnaires, enter this data into a database, and provide the primary oncology team with a list of issues reported by survivors.

The consultative pilot project has recently ended and the protocol is being revised to reflect necessary changes including contacting the patients with recommendations rather than providers, that were identified during the pilot. The LAF LWAC Program team is currently developing a few additional innovative ways to address clinical issues reported by survivors on their questionnaires, such as summarizing these symptoms in a letter to the patient rather than their providers so that patients can discuss the management of these issues with the appropriate provider, e.g., their internist, oncologist, gynecologist, cardiologist, etc. The survivorship program team is also planning to expand their efforts to include more survivorship-focused talks at each of the Penn annual disease-specific conferences. In addition, informal consultation is available to the clinical practices regarding surveillance recommendations for late effects of treatment that may be related to surgery, chemotherapy, or radiation, as well as management strategies for symptoms resulting from the late effects of treatment. The nurse practitioners in the collaborative oncology practices at Penn have a major role in managing the care of and symptoms reported by cancer survivors.

The consultative program has been successful in identifying and managing problems associated with survivorship. The effort provides an opportunity for the LAF LWAC Program team to heighten the awareness of late effects of treatment among the primary oncology practices and specialty care providers. The long-range plan is to extend this model to other disease-specific oncology practices at Penn with one of the nurse practitioners/MDs teams caring for a specific population taking the lead for managing the protocol with and identifying that group of eligible patients.

4.0. DEVELOPING ADULT CANCER SURVIVORSHIP PROGRAMS ACROSS THE COUNTRY

The IOM report identified a few academic centers that developed adult cancer survivorship follow-up clinics over the last few years and described many of the problems related to the development, the daily operation, and support for these new initiatives. The report identifies that there are relatively few adult cancer survivors who are cared for in specialized survivorship clinics despite the fact that specialty care clinics for pediatric cancer survivors is a very acceptable model for the care of this population. In fact, there are 35 comprehensive pediatric follow-up programs across the country. These programs vary and while some focus exclusively on a specific population of cancer survivors, e.g., pediatric survivors of a bone marrow transplant (Milwaukee Regional Medical Center), most of the pediatric cancer survivorship programs focus on survivors of any type of cancer. A listing of pediatric and young adult programs that were identified through a survey done across the country is provided in Table 2. There is really no way of knowing if this list is all-inclusive since there are no reliable resources that identify and describe all of the cancer survivorship programs across the country. To date there are no published listings outlining adult survivorship programs in the United States or internationally. The adult programs outlined in the IOM report, include: the University of Texas, M.D. Anderson Cancer Center Life After Cancer Care that is focused mainly on breast cancer survivors, the University of Michigan Breast Cancer Survivor Clinic, Dana Farber Institute: LAF Adult Survivorship Clinic that is in the development phase, and the LAF LWAC Program at the Abramson Cancer Center of the University of Pennsylvania. In addition to these programs, the Princess Margaret Hospital Breast Cancer Survivorship Program Canada is described on the web when survivorship programs are searched. These programs are not well described and it is unclear how these programs function or to what extent services are provided to adult cancer survivors. It is evident from the paucity of information on adult cancer survivorship programs and from the limited number of programs identified that the oncology community must focus more effort on exploring how the needs of adult cancer survivors can be adequately met. The survivorship program at Penn continues to evolve as more research is conducted that examines the long-term physiologic and psychosocial consequences of a cancer diagnosis and treatment. This program will continue to be a model for the development of survivorship programs across the country in the years ahead.

5.0. FUTURE DIRECTION

The numbers of adult cancer survivors is growing, and the number of young adults who have survived childhood cancers has and continues to increase. Models of care must anticipate the needs of these populations. As institutions across the country develop survivorship centers, they will need to determine the model that works best

Table 2. Pediatric and Young Adult Cancer Survivorship Programs

California

Childrens Hospital Los Angeles

LIFE Program (Long-Term Information, Follow-up and Evaluation)

4650 Sunset Blvd. #54 Los Angeles CA 90027

Coordinator contacts: Mary Baron Nelson, MS, RN, CPNP, CPON Medical Director: Clarke Anderson

For further information about the program/appointments contact: (323) 669-2489 Web site: LIFE program at Childrens Hospital, Los Angeles Sees both child and adult survivors; provides referrals for adults. City of Hope National Medical Center

Long-Term Follow-up Clinic for Survivors of Childhood Cancer

1500 E. Duarte Rd. Duarte, CA 91010

Wendy Landier, RN, MSN, CPNP—coordinator Smita Bhatia, MD (626) 301-8426

(This clinic is generally scheduled once a month, but during summer and other off-school times, the clinic meets more as per demand, scheduling as many clinics as necessary.) Colorado

Denver Children's Hospital HOPE Clinic

1056 East 19th Ave, B115 Denver, CO 80218

Amanda Louey, RN BSN—coordinator 303-864-5441 Brian Geffe, MD 303-861-6776 Florida

Nemours Children's Clinic Hem/Oncology Clinic

807 Children's Way Jacksonville, FL 32207 (800) 767-5437, extension 3761 Annie Rini, RN, BSN—coordinator Rotating doctors

Follows children up to age 21, then transitions to adult primary care providers. Georgia

Children's Healthcare of Atlanta Cancer Survivor Program

1405 Clifton Road Atlanta, GA 30322

Melissa Hamilton, RN MS CPNP: (404) 315-2717 Lillian Meacham, MD 404-727-8232 Illinois

Children's Memorial Hospital Long-Term Follow-up Program

2300 Children's Plaza Chicago, IL 60614

Barbara Lockert RN 4151: 773 880-4151 Reggie Duerst, MD Treats child and teens

Children's Memorial Hospital Northwestern Medical Faculty Foundation Star Program for Young Adult Survivors

Survivors Taking Action & Responsibility Comprehensive Care for Survivors of Pediatric Malignancies 675 N. St Clair 18-200 Chicago, IL 60611

Arlina Ahluwalia, MD, Director

Karen Kinahan, MS, RN Clinical Nurse Specialist (312) 695-4979 Treats survivors over 21 years old. Indiana

Riley Hospital for Children Indiana University School of Medicine

Childhood Cancer Survivor Program Riley 4340 702 Barnhill Drive Indianapolis, IN 46217

Coordinator: Ann Haddix, RN, CPNP, 317-278-0199 Medical Director: Terry Vik, MD, 317-274-8784 We see both Children and Adults Clinic Appointments 317-274-2143 or 800-238-8399 Maryland

Johns Hopkins Oncology Center Long-Term Follow-up Clinic

600 N. Wolfe St Park 2 clinic Baltimore MD 21287 (410) 614-5062

Kathy Ruble RN—coordinator Cindy Schwartz MD

Web site: none, but on the Hopkin's site is a good article about Cindy Schwartz. Massachusetts

Dana-Farber Cancer Institute

David B. Perini, Jr. Quality of Life Clinic for Childhood Cancer Survivors at 44 Binney St.

Boston, MA 02115 617-632-5124

Ellen E. Casey—Coordinator Lisa Diller, MD

Web site: David B. Perini Quality of Life Clinic Sees children and adults. Dana-Farber Cancer Institute Pediatric Neuro-Oncology Outcomes Clinic

44 Binney St, SW331 Boston, MA 02115 617-632-2680 Christine Chordas, PNP Christopher Turner, MD

Web site: Pediatric Neuro-Oncology Outcomes Clinic

Sees children and adult survivors of pediatric brain and spinal cord tumors. Michigan

University of Michigan

Long-Term Follow-up Clinic

Department of Pediatric Hematology/Oncology

1500 East Medical Center Dr. Ann Arbor MI 48109 (734) 936-9814

Marcia Leonard, RN, PNP—coordinator Valerie Castle, MD

Web site: description of U of Michigans Ped/Onc Late Effects Clinic DeVos Children's Hospital The After-Care and Transition (ACT) Program

Division of Pediatric Hematology/Oncology and Blood and Bone Marrow Transplantation 100 Michigan St, NE Grand Rapids, MI 49503

Colleen Gardner and Tina Rodriguez are the nurse coordinators Medical Director: Dr. David Freyer

(616) 391-2238 Web site

The ACT clinic serves both children and adult survivors of childhood cancer. First visits to the ACT Clinic are being 5 years postdiagnosis and 2 years postcompletion of the last treatment regimen. Minnesota

Fairview-University Children's Hospital Long-Term Follow-up Clinic

Harvard St. and East River Rd. Minneapolis, Minnesota 55455 Nancy Youngren—coordinator

To speak with Nancy Youngren please call 612-626-2140 Schedule an appointment: 612-625-5411 Joseph Neglia, MD and Daniel Mulrooney, MD Web site: Long-Term Follow-up Study Missouri

St. Louis Children's Hospital/Washington University School of Medicine Late Effects Clinic

One Children's Place St. Louis, MO 63110

Medical Directors: Robert Hayashi, MD; Shalini Shenoy, MD For information or appointment call (314) 454-4240. For children and young adults who are at least 2 years off therapy. New Jersey

University Medical Center Tomorrow's Children's Institution

Care and Beyond 385 Prospect Ave Hackensack NJ 07601 (201) 487-8987 Hope Castoria, RN Beverly Ryan, MD

Sees both child and adult survivors of pediatric cancer. New York

Memorial Sloan Kettering Cancer Center Long-Term Follow-up Clinic Department of Pediatric Oncology 1275 York Ave New York, NY 10021 212 639-8138 Charles Sklar, MD Elaine Pottenger, MS RN CPNP Web site: MSKCC Long-Term Follow-up Program

Sees survivors 30 years old or younger; will do one time consultation with older survivors.

University of Rochester Medial Center Strong Children's Medical Center Follow-up Clinic

601 Elmwood Ave. Rochester NY 14642 585 275 2981

Cindy Proukou, RN, MSN, CPNP—coordinator

Andrea Hinkle, MD

Follows both child and adult survivors.

Roswell Park Cancer center Long-Term Follow-up Project Elm & Carlton Buffalo NY 14263

Theresa Carbone MS RN CPNP—coordinator

Daniel Green, MD (716) 845-8011

Sees children, teens, and adults. SUNI Upstate Medical University KNOT: Kids Now Off Therapy Pediatric Hematology/Oncology

750 E Adams St. Syracuse NY 13210 315 464-7229

Sue Shaw, RN, MS, PNP—coordinator Irene Cherrick, MD

Web site: description of the KNOT program North Carolina

Duke University Medical Center

Pediatric Hem/Onc Erwin Road

Durham, NC 27710 USA 919-684-3401 (appts for children and teens) (919) 684-8964 (appts for adults) Philip Rosoff, MD (children and teens) Carlos DeCastro (adults) Ohio

Children's Hospital Medical Center ATP Five-Plus Clinic

333 Burnette Ave Cinninnati, OH 45229

(513) 636-3512 Judy Correll—RN CPNP coordinator Cynthia DeLaat, MD

Web site: description of and contacts for the ATP Five-Plus Clinic Sees both child and adult survivors; will refer.

Akron Children's Hospital START-UP clinic

"Staying Together After Recovery and Tapping Unlimited Potential."

One Perkins Square

Akron, OH 44308

Charlene Maxen, RN, CNP, CPON

Hematology/Oncology Nurse Manager

330-543-3215

Fax: 330-543-3836

Web site

Any childhood cancer survivor who has been off treatment for two years is eligible to participate in the START-UP program, regardless of age. The clinic usually meets only once a month but does plan additional clinics when students are off from school. The Children's Hospital at the Cleveland Clinic Pediatric Hematology/Oncology 9500 Euclid Ave.-Desk S-20 Cleveland, OH 44195 Office: 216-444-0015 Fax: 216-444-3577

Holly R. Kubaney, MSN, APRN, BC, Pediatric Nurse Practitioner

[email protected]

Greg Plautz, MD

The Center for Survivors of Childhood Cancer Rainbow Babies & Children's Hospital 11100 Euclid Avenue Cleveland, OH 44106 phone (216) 844-3070

fax (216) 844-5431

e-mail: [email protected] Web site

The clinic is held two times per month and we see children, teens and adult survivors of childhood cancer. All patients receive a summary of their cancer treatment, medical and psychosocial evaluation, screening and education about late effects, and referral and ancillary testing as needed. ChadJacobsen, MD (pediatric oncologist) Catherine Peterson, PhD (psychologist) Vicki Fisher, PNP (nurse practitioner). Pennsylvania

Children's Hospital of Philadelphia Long-Term Follow-up Clinic

34th & Civic Center Blvd Philadelphia, PA 19401 215 590-3025

Wendy Hobbie-coordinator

Sue Ogle, CPNP and Barbara Anne, Heib CPNP

Jill Ginsberg, MD, Anna T. Meadows, MD

Sees both child and adult survivors.

Web site

Lance Armstrong Foundation Living Well After Cancer Program The University of Pennsylvania Abramson Cancer Center

Linda A. Jacobs, PhD, RN

Director, The Lance Armstrong Foundation Living Well After Cancer Program

Abramson Cancer Center

University of Pennsylvania

Penn Tower Hotel #1428

3400 Spruce Street

Philadelphia, PA 19104

215-615-3371 (office)

Anna T. Meadows, MD

Adult cancer survivorship program and a transition program for adult survivors of childhood cancers. South Carolina

Medical University of SC Children's Hospital FACT (Follow-up after Cancer Treatment)

135 Rutledge Ave PO Box 250558 Charleston SC 29425 843-792-2957

Diane Dufour, MS, CPNP—coordinator Sonja Muckensuss, RN, BSN Julio Barredo, MD Children's Medical Center of Dallas After the Cancer Experience (ACE) 1935 Motor Street Dallas TX 75235-7794 (214) 456-2948, Fax (214) 456-2948 Coordinator: Debra Eshelman, RN, CPNP Gail Tomlinson, MD, PhD (children and teens) Kevin Oeffinger, MD (young adults) Web site: description of the ACE program MD Anderson Cancer Center Long Term Survivor Clinic 1515 Holcombe, Box 87 Houston Tx 77030 713 792-6619

Nita Burrer RN, ANP, CNS—coordinator

Norman Jaffe, MD Steve Culbert, MD

Web site: good description of the long-term survivor clinic Sees children, teens, and adult survivors of childhood cacner. Texas Children's Hospital Late Effects Clinic

Hematology/Oncology 6621 Fannin St. CC-1510.21 Houston Tx 77030 832 822-4727

Coordinator: Gaye Hamor, MSHA

Social worker: Amy Waltz

Family Nurse Practitioner: Jennifer Lin

Jo Ann Dreyer, MD

Sarah Bottomley, CPNP

ZoAnn Dreyer, MD

Web site: good description and contacts for the long-term survivor clinic Cook Children's Medical Center

Life After Cancer Program at the Hematology & Oncology Center

901 Seventh Avenue, Suite 220

Fort Worth, Texas 76104

(817) 810-2125

Lisa Bashore, MS RN CPNP

Web site: description on the hem/onc page

Treats up to age 30 and will refer adults.

The Lance Armstrong Foundation and Cook Children's Medical Center in Fort Worth are partners in the Life After Cancer program. Washington

Children's Hospital & Regional Medical Center Division of Hematology/Oncology Mailstop B-6553

ACCESS Long-Term Follow-up Program 4800 Sand Point Way NE, B-6553 Seattle, WA 98105 (206) 987-2106 Debra Friedman, MD Karen Wilkinson, ARNP Washington, D.C. Long Term Survivor Clinic Department of Hematology-Oncology

Children's National Medical Center 111 Michigan Ave., NW Washington, DC 20010 Appts: 202-884-2140 Nurse Coordinator: 202-884-3568 Medical Director: Gregory H. Reaman, MD Nurse Coordinator: Revonda B. Mosher, RN, MSN, CPNP Wisconsin

University of Wisconsin Hospital and Clinics Caring for Life Clinic

600 Highland Ave. Madison, WI 53792 (608) 263-6200 Peggy Possin—coordinator Diane Puccetti, MD

Children's Hospital of Wisconsin

Oncology and Bone Marrow Transplant Long-Term Follow-up Clinic

8 East Clinic 9000 W. Wisconsin Ave Milwaukee, WI 53226 Phone: 414-266-2420.

Contacts: Deb Schmidt, RN, MSN, CPNP-Oncology Lynnette Anderson, RN, MSN, CPNP- BMT Web site

Treats children, adolescents and young adults.

in their institution. This requires the philosophical and financial support of the institution.

The LAF has recently taken the lead in the funding and development of the first adult survivorship program Network across the country. In addition to the LAF LWAC Program at Penn, over the last two years the LAF funded the Dana Farber Cancer Institute and Memorial Sloan Kettering Cancer Center to develop adult cancer survivorship programs, and these programs are currently in the development phase. In the summer of 2005 the LAF invited select NCI-designated cancer centers to submit applications for funding to develop adult cancer survivorship programs at their institutions. Three additional centers were funded by the LAF and over the next 5 years these centers as well as the already funded LAF programs will work together under the guidance of the LAF as a Network of adult cancer survivorship centers that will collaborate on the development of clinical care programs and research projects to explore and meet the needs of the growing population of adult cancer survivors. The cancer survivorship focused work of the LAF is unparalleled as we move forward with this national agenda.

A better understanding of the late effects of cancer treatment comes from the growing research in this area as well as from survivors who are identifying problems and seeking appropriate providers for managing these challenges. The late effects of cancer treatment have been under-recognized and consequently under-treated. For the most part, providers are not adequately prepared to recognize and manage late effects, and few providers screen for late effects of treatment despite knowledge of potential problems caused by surgery as well as treatment with chemotherapy and radiation therapy. The LAF Network of survivorship centers across the country will collaborate with ASCO, the American Cancer Society, the Centers for Disease Control, the Oncology Nursing Society, the National Coalition of Cancer Survivors and other groups to work toward meeting the National agenda by standardizing follow-up care and meeting the broad spectrum of unmet needs of adult cancer survivors.

REFERENCES

1. NCI. Facts about the Office of Cancer Survivorship National Cancer Institute. Accessed November 1, 2005 at http://dccps.nci.nih.gov/ocs/ocs_factsheet.pdf.

2. Meadows, A.T., Varricchio, C., Crosson, K., et al Research issues in cancer survivorship: Report of a workshop sponsored by the Office of Cancer Survivorship, National Cancer Institute. Cancer Epidemiol. Biomarkers Prev. 1998; 7(12): 1145-51.

3. Tchen, N.,Juffs, H.G., Downie, F.P., et al. Cognitive function, fatigue, and menopausal symptoms in women receiving adjuvant chemotherapy for breast cancer. J. Clin. Oncol. 2003; 21(22): 4175-83.

4. Meinardi, M.T., Gietema, J.A., van der Graaf, W.T., et al. Cardiovascular morbidity in long-term survivors of metastatic testicular cancer. J. Clin. Oncol. 2000; 18(8): 1725-32.

5. Meadows, A.T., Baum, E., Fossati-Bellani, F., etal. Second malignant neoplasms in children: An update from the Late Effects Study Group. J.Clin. Oncol. 1985; 3(4): 532-8.

6. Meadows, A.T., and Hobbie, W.L. The medical consequences of cure. Cancer 1986; 58(2 Suppl): 524-8.

7. Hobbie, W.L., and Hollen, P.J. Pediatric nurse practitioners specializing with survivors of childhood cancer. J. Pediatr. Health Care 1993; 7(1): 24-30.

8. Oeffinger, K.C., Eshelman, D.A., Tomlinson, G.E., and Buchanan, G.R. Programs for adult survivors of childhood cancer. J. Clin. Oncol. 1998; 16(8): 2864-7.

9. Oeffinger, K.C. Longitudinal risk-based health care for adult survivors of childhood cancer. Curr. Probl. Cancer 2003; 27(3): 143-67.

10. Earle, C.C., and Neville, B.A. Under use of necessary care among cancer survivors. Cancer 2004; 101(8): 1712-19.

11. Trask, P.C., Rabin, C., Rogers, M.L., et al. Cancer Screening Practices Among Cancer Survivors. Am. J.Prev. Med. 2005; 28(4): 351-6.

12. Demark-Wahnefried, W., Aziz, N.M., Rowland, J.H., and Pinto, B.M. Riding the crest of the teachable moment: promoting long-term health after the diagnosis of cancer [see comment]. J. Clin. Oncol. 2005; 23(24): 5814-30.

13. Hewitt, M., Greenfield, S., and Stovall, E. From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press: Washington, D.C., 2006.

14. Balch, C.M. ASCO Develops Resources for Members Providing Care to Cancer Survivors. ASCO News 2005; 17(3): 4.

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