Challenges of Childhood Cancer Survivor Study

Researchers at the Kennedy Krieger Institute and Johns Hopkins are interested in learning more about the experiences and challenges of childhood cancer survivors and their caregivers related to the transition back to school after a diagnosis of cancer.  If you have a school-aged or older child who has been treated for cancer and has returned to a formal school setting, we would love to have your participation in this survey. The survey is anonymous and should take about 20 minutes to complete; this research study has been approved by the Johns Hopkins IRB. After completing the survey you may choose to enter your email address (not required) and be eligible to win one of two $50 gift cards. Thank you in advance!

Participate in the survey 

If you have any questions, please contact:

Elizabeth Offermann
Kennedy Krieger Institute
[email protected]

Principal Investigator:
Lisa Jacobson, PhD, ABPP
Kennedy Krieger Institute
Johns Hopkins School of Medicine
IRB00126818 (approved: 4/10/2017)

Promoting and maintaining the health of childhood cancer survivors is the goal of the Life Clinic at Johns Hopkins. One of the older childhood survivorship clinics in the country, the Life Clinic has followed some of its patients for decades.

The overall cure rate for childhood cancer has risen to nearly 80% and there are over 270,000 survivors nationwide. While most survivors are healthy, as many as two-thirds will have at least one long-term complication from treatment, and one quarter will have a severe, life-threatening complication. National recommendations suggest all childhood cancer survivors receive oncology-specific follow-up care.

The Life Clinic’s faculty and staff have years of experience monitoring and treating any long-term complications associated with chemotherapy, radiation, surgery and other treatments used for childhood cancer and non-malignant diseases. Their goal is to identify and treat any emerging medical issues well before patients experience any symptoms, as well as to promote good health through discussions about exercise, diet, stress management and other topics. Patients may remain in the program throughout their lifespan.

Our experts conduct several research projects concerning the long-term health of childhood cancer survivors. For more information or to enroll in a study, contact Kathy Ruble, RN, PhD, Program Director, at [email protected].

Learn more about our Survivorship Programs for other cancers.

Our Process

Prior to a patient’s first visit, our experts review that person’s treatment records and medical history. This includes information on diagnosis, a list of chemotherapy agents (including cumulative doses when appropriate), radiation doses and sites, surgical history and bone marrow transplant details.

Using information from the treatment history, survivorship guidelines and expert clinical experience are used to develop individual plans of care for each survivor. These individualized plans of care outline the tests and exams necessary to monitor for long-term complications.

Here are some examples:

1. Echocardiograms and EKGs are necessary after chemotherapy agents including, but not limited to, Doxorubicin (Adriamycin), Daunorubicin (Daunomycin) and radiation to the chest. The frequency of these exams depends on the total amount of these treatments  and the age of the child at the time of treatment.
2. Laboratory measures of hormones, physical exams and bone age X-rays are important to evaluate growth and development after treatment for childhood cancer.
3. Bone mineral density should be evaluated after treatment with steroids, bone marrow transplant and for patients with abnormal endocrine function to ensure appropriate bone strength and avoid osteoporosis.

Some long-term complications require interventions including medication, which will be prescribed and monitored by Life Clinic faculty. Other complications may require additional evaluation by subspecialists like cardiologists, pulmonologists, endocrinologists, etc. The Johns Hopkins Hospital gives survivors access to experts in all areas of childhood healthcare with extensive experience in managing the complications of childhood cancer.

In addition to monitoring and treating long-term complications, the Life Clinic provides information on health promotion activities to decrease the risk for developing complications. Recommendations for diet, exercise and other healthy behaviors can help survivors maintain the best possible physical functioning and quality of life.

Make an Appointment

Patients treated for cancer at Johns Hopkins may be referred to the Life Clinic by their care team, or can call 410-955-8751 and ask for an appointment. Prior to the visit the treatment history will be generated. During the visit the history will be reviewed and potential long-term complications will be discussed. In addition, the plan for future tests and follow-up will be outlined. Most survivors are seen yearly. 

Patients who received cancer treatment at other medical centers may refer themselves to the Life Clinic. Call 410-955-8751 for an appointment. You will need to forward a copy of your cancer treatment records to the clinic.

There is no upper age limit to be seen in Life Clinic, but in general treatment should have occurred prior to 23 years of age. 

For further questions you may contact Kathy Ruble, RN, PhD, Program Director, at [email protected].