Survivors Taking Action and Responsibility (STAR) Program
The Survivors Taking Action and Responsibility (STAR) Program provides risk-based care using national and international survivorship guidelines for childhood cancer and hematopoietic stem cell transplant survivors. Our program also participates in research to contribute to ongoing improvements in survivorship care and the quality of life of survivors.
Approximately 75% of children diagnosed with cancer become long-term survivors, thanks to current treatment strategies. This success is a major feat of pediatric medicine, surgery and radiation oncology. We believe we have a responsibility to provide continued monitoring and care for the effects of these diseases and treatments.
Childhood cancer survivors have the right to expect an organized, systematic and comprehensive follow-up program, one that addresses both the physiologic and psychosocial effects of their treatment — which is the focus of the STAR program at Lurie Children’s and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
Patients are referred to the STAR program five years after diagnosis if they are in full clinical remission. We currently see about 360 patients each year.
The following staff members are involved in the program:
• Kimberley Dilley, MD, MPH, is the full-time physician seeing patients in the STAR clinic. She also directs the active research program.
• Barbara Lockart, RN, PNP, and Karina Danner-Koptik, RN, MSN, share the program’s nursing responsibilities for patient evaluations and patient education. They also provide expertise to instruct nursing colleagues and to participate in the program's research protocols.
• Meg Crum, LCSW, is the team’s dedicated social worker and is available to perform assessments and provide needed follow-up for families.
• Tricia Salicete is our STAR program liaison and research coordinator. She continues to play an important role in clinic management, including supervising scheduling and organizing operational flow.
• Nobuko Hijiya, MD, and Morris Kletzel, MD, contribute actively to the STAR Program clinical and research activities.
During a STAR Visit
During a visit, patients meet with one of the advanced practice nurses as well as the physician. The healthcare staff provides a summary of prior treatments and evaluations, as well as counseling about possible late effects due to those treatments.
The social worker discusses survivors’ various psychosocial, educational, insurance or employment needs.
We consult other subspecialty physicians to provide your child with the best care team to address any complications that could result in ongoing health problems such as:
• Impaired growth or development
• Reduced bone density
• Cardiac disease
We are committed to ongoing development of and participation in research on improving quality of life for long-term survivors of childhood cancer. We remain current on the outcomes of studies related to survivors and deliver clinically relevant results to our patient population.
Our team frequently presents our research at a variety of national and international meetings, including:
• Pediatric Academic Societies National Meeting
• International Conference on Long-Term Complications of the Treatment of Children and Adolescents for Cancer
• American Society for Bone and Mineral Research National Meeting
• International Conference on Childhood Bone Health
• Bone Marrow Transplant Tandem Meeting
In 2008, we were excited to learn that Lurie Children’s, with Dr. Dilley as principal investigator, was approved to be a participant in the latest patient enrollment for the Childhood Cancer Survivor Study (CCSS). It is a national cohort study that has fostered much of the current research progress on understanding late effects of cancer treatment in childhood.
We have hosted multiple educational symposia sponsored by the National Childhood Cancer Foundation. STAR team members also participate in many additional outreach efforts sponsored by other agencies like BMT InfoNet, Here Comes the Sun and the American Cancer Society. A STAR social worker created a peer mentor program staffed by trained young adult survivors of stem cell transplantation.
STAR is also collaborating with the Adolescent and Young Adult Program and other division members to start the Hematology Oncology Transplant Healthy Living Initiative to promote healthy lifestyles at all treatment stages.
Prevention & Early Detection
We’ve established a referral process for childhood cancer survivors with various medical providers, including endocrinologists, cardiologists, psychologists and orthopaedists. We also strive to serve as the coordinating service for these multiple specialists to provide vital prevention, early detection and prompt intervention.
The STAR Program educates survivors on their changing potential for new or different post-therapy late complications. We also promote patient responsibility for awareness and identification of late complications, particularly as they transition to adult healthcare. Our team also educates the community about the potential long-term effects of childhood cancers and their treatment.