Approximately 75 percent 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. As a result, we believe we have a responsibility to provide continued monitoring and care for the late effects of these diseases and treatments. 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. This is the focus of the STAR program at Lurie Children’s and the Robert H. Lurie Comprehensive Cancer Center of Northwestern University
The STAR Program
Patients are referred to the STAR program five years after diagnosis if they have remained in full clinical remission. We currently see approximately 360 patients annually. The following staff members are involved in the program:
- Kimberley Dilley, MD, MPH Dr. Dilley is the full-time physician seeing patients in the STAR clinic and directing the active research program.
- Barbara Lockart, RN, PNP, and Karina Danner-Koptik, RN, MSN
Nurses Lockart and Danner-Koptik 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
Ms. Crum is the team’s dedicated social worker and is available in clinic to perform assessments and provide needed follow-up for families.
- Tricia Salicete
Ms. Salicete is our STAR program liaison and research coordinator. She continues to play an important role in clinic management, including supervising clinic scheduling and organizing clinic flow.
- Nobuko Hijiya, MD, and Morris Kletzel, MD
Drs. Hijiya and Kletzel contribute actively to the STAR Program clinical and research activities.
During a STAR Visit
During a clinic visit, patients meet with one of the advanced practice nurses as well as the physician. They provide 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 as warranted by the history and physical obtained during the visit. The input of these sub-specialists provides optimal management of any complications that could result in ongoing health problems such as impaired growth or development, infertility, reduced bone density, dyslipidemia or cardiac disease.
Research is continually being presented at a variety of national and international meetings, including the Pediatric Academic Societies National Meeting, the International Conference on Long-Term Complications of the Treatment of Children and Adolescents for Cancer, the American Society for Bone and Mineral Research National Meeting, the International Conference on Childhood Bone Health, and the 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), a national cohort study that has fostered much of the current research progress on understanding late effects of cancer treatment in childhood.
Outreach efforts have included hosting multiple educational symposia sponsored by the National Childhood Cancer Foundation. STAR team members also participate in many additional outreach efforts sponsored by other agencies such as BMT InfoNet, Here Comes the Sun, and the American Cancer Society to name just a few. Creation of a peer mentor program staffed by trained young adult survivors of stem cell transplantation was spearheaded by STAR social worker. 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 stages of treatment.
Specific Program Goals
Our specific goal is to provide a comprehensive, systematic evaluation of the potential medical, social and psychological risks that may be unique to survivors of childhood cancers as a result of their disease or treatment.
Prevention & Early Detection
We address these health care needs through an established referral pattern to various medical providers, including but not limited to endocrinologists, cardiologists, psychologists and orthopedists. We also strive to serve as the coordinating service for these multiple specialists, in order to provide vital prevention, early detection and prompt intervention.
We educate survivors on their changing potential for new or different post-therapy late complications. We promote patient responsibility for awareness and identification of late complications, particularly as they transition to adult healthcare.
We uphold our promise to remain current on the outcomes of various research studies related to survivors and to deliver clinically relevant results to our patient population. We also commit to ongoing development of and participation in research aimed at improving quality of life for long-term survivors of childhood cancer.
Finally, we educate the community about the potential long-term effects of childhood cancers and their treatment.