Our Survivorship Program is a clinical research program that provides annual guideline-directed late effects screening (per COG guidelines) for childhood and AYA survivors. At the initial visit, patients meet with either a physician or APP, nutritionist, +/- psychologist, neuropsychologist, or social worker. We communicate findings and recommendations to patients’ PCP and other healthcare providers. We work closely with our AYA program to provide services and resources to our growing population of AYA survivors. On our website, we have created English and Spanish videos introducing our program and with educational content regarding common survivorship issues. We are actively working to leverage digital care approaches to provide patients with relevant material. The Program serves as a foundation to identify potential participants for survivorship-focused research studies.

• Diagnosis of childhood-like cancer or HCT prior to age 40

• At least two years since completion of treatment

• Currently in remission

• No limitation regarding current age

Approximately 600 survivors seen annually

Rusha Bhandari, MD, MS
Medical Director
rbhandari@coh.org

Penn State’s Childhood Cancer Survivorship Program is a multi-disciplinary program caring for survivors of childhood, adolescent and young adult cancer centered around providing holistic and personalized care. The comprehensive program includes a nurse coordinator, a nurse practitioner, a cancer genetic counselor, a neuropsychologist and a survivorship dedicated social worker. The program caters to a largely rural population from the disparate Appalachian region. A structured Transition Program allows for organized transition of care of young adults at age 30 to adult primary care providers in the community. The program’s use of telemedicine allows for bridging the gap of access and transportation issues and enhances reach to rural communities. A unique aspect is the program’s research focus on behavioral lifestyle interventions to improve the quality of life of childhood cancer survivors, with offerings of an exercise consult service by an exercise physiologist to help survivors better manage their treatment related chronic health conditions.

Childhood cancer survivors who are at least two years off therapy. Survivors are followed up to 30 years of age.

Approximately 420 survivors seen annually

Smita Dandekar, MD
Director, Childhood Cancer Survivorship Program sdandekar@pennstatehealth.psu.edu

TOP provides an extra layer of support to patients and families through three major transitions:

• On therapy to off therapy and community re-entry

• Early survivorship to long-term survivorship clinic transfer

• Teens/emerging adults from pediatric to adult model of health care

Team members (nurse practitioners, nurses, social workers, pediatric psychologists, neuropsychologists, school coordinators, and patient navigators) provide prospective, comprehensive screening for psychosocial, cognitive, and physical effects/risks and empower patient families to manage transitions by providing:

• Anticipatory guidance for major transitions

• Education and resources for transition-related needs

• Navigational support to identify and engage with local resources

An acuity/risk-based approach guides how often and which team member(s) visit with the patient. Visits align with routine off therapy disease evaluations, with between-visit communication occurring as needed.

• Referral-based

• Approaching cancer-directed treatment completion (or already complete)

• Followed by primary oncology team (i.e., not yet transferred to long-term survivorship clinic which can occur ~6 years from diagnosis)

• 1,900 patients currently enrolled

• 1,250 (unique patients seen by TOP team members annually)

Emily Browne, DNP, RN, CPNP-PC

Director, Transition Oncology Program

emily.browne@stjude.org

The HEROS (Health, Education, Research and Outcomes of childhood cancer Survivors) Clinic offers a multidisciplinary approach to the care of survivors of childhood cancer who have completed therapy and provides them with lifelong follow-up. Our multidisciplinary team consists of a physician, nurse practitioner, nurse coordinator, dietitian, physical therapist, psychologist, and school support specialist who provide care in alignment with the COG Long Term Follow-Up Guidelines during this weekly clinic. HEROS also offers survivorship research studies, including participation in the HEROS registry which longitudinally evaluates health outcomes among survivors seen in HEROS. We celebrate our survivors annually with a survivorship picnic, emphasizing positive health behaviors and incorporating fun activities with partnering organizations.

Childhood cancer survivors who are at least two years off therapy

Approximately 200 survivors seen annually

Rozalyn Rodwin, MD, MHS Medical Director Rozalyn.rodwin@yale.edu

Jaime Rotatori, RN, BSN, MS Nurse Coordinator Jaime.rotatori@yale.edu

The Aflac Survivor Program provides comprehensive long-term follow-up care to survivors of cancer and blood and marrow transplantation (BMT). Our multidisciplinary clinic includes oncologists, endocrinologists, advance practice providers, psychologists, cancer geneticists, nurses, and research coordinators. We also have social work, nutrition, and neuropsychologists available for in-clinic consultation. Our program offers a monthly BMT Survivor Clinic, co-led by a dedicated BMT physician, and Transition Clinics twice per quarter, which support young adults as they move into adult survivorship care. These clinics are staffed in collaboration with our Young Adult Survivor Clinic, promoting continuity of care.

We are proud to integrate innovative digital health tools into our care model. All survivors are offered electronic mental health screening using the Distress Thermometer and PROMIS® Anxiety and Depression measures, enabling timely psychosocial interventions. Families are also offered access to SurvivorLink® (https://cancersurvivorlink.org/)—a secure, patient-controlled platform for storing and sharing Survivorship Care Plans and medical documents, independent of institutional electronic health records. Additionally, we are actively developing an automated system to generate Survivorship Care Plans electronically, further enhancing care coordination and patient engagement.

Survivors of childhood cancer and BMT who are 2 years from therapy completion and aged <21 years. If older than 21 years, they must have been treated at CHOA and can have a one-time transition visit.

Approximately 1,175 patients seen annually

Karen Effinger, MD, MS
Co-Director
Karen.effinger@emory.edu

Jordan Marchak, PhD, ABPP
Co-Director
jgillel@emory.edu

Survivorship care at Dana-Farber/Boston Children’s is provided in three specialized clinics by a designated staff of pediatric oncologists, advanced practice providers, pediatric neurologists, adult internist, endocrinologist, psychologists, social workers, oncology nurse navigator, neuropsychologist, and survivorship care-facilitators. Specialized survivorship clinical services include comprehensive medical evaluation, EMR generated treatment summaries and detailed individualized care plans; psychological assessment; cancer genetic risk assessment, counseling, and cancer genetic predisposition testing; fertility consultation; neuropsychologic testing ; school liaison program (SLP) a designated team of psychologists available to patients requiring increased support in school after cancer; sexual health program specifically for cancer survivors; sleep medicine program with cancer survivor expertise; cardiovascular screening, prevention, and health promotion; endocrinology monitoring and treatment of growth failure, delays in pubertal development, and hormone dysfunction; dermatology for skin cancer screening, treating skin disorders, and hair loss interventions; referral network of pediatric and adult specialists identified as having cancer survivorship knowledge and expertise. In addition to clinical services, we have a robust research program including participation in cooperative groups (COG, CCSS, IGHG, CONNECCS), a program wide longitudinal cohort study (REACH), and behavioral intervention studies for common survivorship health outcomes such as insomnia and skin cancer prevention.

Cancer/blood disorder diagnosed during childhood or adolescence, less than 21 years old

Approximately 1,000 survivors seen annually

Lynda Vrooman, MD, MMsc
Clinical Program Leader for the Pediatric Survivorship Program
lynda_vrooman@DFCI.harvard.edu

The TACLE program is the only survivorship clinic dedicated to taking care of pediatric cancer patients in the Gulf South region.

What services does the clinic provide?

• Thorough review of your medical record with a multi-disciplinary team

• Development of an individualized Survivor Care Plan - a “roadmap” or guide with past treatment information and late effects related to treatment.

• Comprehensive health history and physical exam

• A “Survivor Handbook” - information on physical, emotional, and daily living issues specific to cancer survivors

• Coordination between oncology and primary care physicians and specialists

• Assistance with social, emotional, and daily living issues

• Navigation to national, community, and online resources.

The clinic is multidisciplinary and includes simultaneous visits with social work, psychologist, and education specialist. We try to have same-day visits with subspecialists if needed.

Patients who are at least two years off completion of therapy or five years after diagnosis. Families can self-refer if they were not treated at Manning Family Children’s.

Approximately 150 survivors seen annually

Pinki K. Prasad, MD, MPH
Director of Late Effects
pprasa@lsuhsc.edu

Claudette Vicks, BSN, RN
claudette.vicks@lcmchealth.org

The ACTS program provides comprehensive, multidisciplinary care for childhood cancer survivors. Our dedicated team includes physicians, a nurse practitioner, social worker, registered dietitian, and program coordinator—each with specialized expertise in survivorship care.

The mission of our program is to monitor and educate childhood cancer survivors and their families about the potential long-term and late effects of cancer treatment. Through regular follow-ups and personalized treatment care plans, we help survivors understand and manage these potential risks to maintain long-term health and wellness.

Referrals and linkage to subspecialists across various healthcare fields are provided as needed to ensure that our patients receive the most comprehensive care available. Additionally, Pathways After Cancer Treatment (PACT) is a unique psychotherapy program created to offer enhanced support for survivors facing challenges with therapy linkage or follow-through. Our team emphasizes patient and family education to empower our survivors to become informed advocates for their own health. About the ACTS Program at CHOC Hyundai Cancer Institute

The ACTS program provides comprehensive, multidisciplinary care for childhood cancer survivors. Our dedicated team includes physicians, a nurse practitioner, social worker, registered dietitian, and program coordinator—each with specialized expertise in survivorship care.

Our Mission

The mission of our program is to monitor and educate childhood cancer survivors and their families about the potential long-term and late effects of cancer treatment. Through regular follow-ups and personalized treatment care plans, we help survivors understand and manage these potential risks to maintain long-term health and wellness.

Comprehensive and Coordinated Care

Referrals and linkage to subspecialists across various healthcare fields are provided as needed to ensure that our patients receive the most comprehensive care available. Additionally, Pathways After Cancer Treatment (PACT) is a unique psychotherapy program created to offer enhanced support for survivors facing challenges with therapy linkage or follow-through. Our team emphasizes patient and family education to empower our survivors to become informed advocates for their own health.

As transition to adult healthcare is a process, we work closely with patients to ensure a smooth and well-supported transfer. Additionally, patients identified as high-risk are scheduled for an additional 1 or 2 follow-up appointments in between their annual survivorship visits which has improved timely access to recommended imaging, specialist referrals, mental health resources and overall compliance.

The ACTS Program also collaborates with other CHOC programs:

• Adolescent and Young Adult (AYA) Program: Offers mentorship and peer social support.

• Oncofertility Program: Consults and supports patients at risk of fertility challenges due to their cancer treatment with education and fertility preservation options.

All childhood cancer survivors who are at least two years off therapy and up to age 26.

Approximately 500 survivors seen annually

Lilibeth Torno, MD
Medical Director
ltorno@choc.org

Christine Yun, NP
cyun@choc.org

The Texas Children’s Long-Term Survivor Program offers survivorship care at five sites: the Texas Children’s Main Campus in the Texas Medical Center (Oncology LTS Clinic and Bone Marrow Transplant LTS Clinic), Texas Children’s Woodlands Campus in The Woodlands, TX, Texas Children’s West Campus in Katy, TX, Texas Children’s Austin Campus in Austin, TX, and the Vannie Cook Children’s Clinic in McAllen, TX. All sites utilize Passport for Care as a clinical decision support tool to deliver Children’s Oncology Group Long-Term Follow-Up Guidelines-informed care. Survivors and their families are given access to their personalized Survivorship Care Plan via the Passport for Care mobile health application, which also includes video-based Q&A and educational content about late effects. Subspecialty referrals are available through the Texas Children’s network and our adult academic and community partners. All sites offer clinical support services (nurse navigation, medical social work, nutrition support, school coordination, etc). The main campus and Vannie Cook sites offer local and Children’s Oncology Group research participation opportunities. Camps and AYA events are offered to survivors and families through the Periwinkle Foundation.

Childhood cancer survivors who are at least two years off therapy. May have received treatment at any institution, including out-of-state. No upper age limit.

Approximately 1,000 served at the Main Campus Oncology site, 100 at Vannie Cook, and 50-75 at other sites

ZoAnn Dreyer, MD
Professor of Pediatrics
zedreyer@texaschildrens.org