Presenters: Dr. David Poplack, Dr. Marc Horowitz, and Dr. Michael Fordis
The Passport for Care is an online national resource for survivors of childhood cancer that is under development by Baylor College of Medicine’s Texas Children’s Cancer Center and Baylor’s Center for Collaborative and Interactive Technologies, in collaboration with the COG through a working group and steering committee.14
As discussed throughout this workshop, cancer survivors face the following serious issues:
Medical late effects;
Lack of consistent long-term medical follow-up;
Employment and insurance problems; and
Complicating their situation, childhood cancer survivors have frequent changes in health care providers, and they often see primary care physicians who are unfamiliar with survivorship issues. For example, a 28-year-old survivor of Wilm’s tumor who received radiation therapy at age 4 and is seeing a primary care provider because he has developed hematuria may not know that this symptom may be associated with his history of cancer treatment. The primary care physician is unlikely to make this connection, especially if the survivor lacks details of his diagnosis and treatment history.
The IOM report identified the need for every survivor to have a Survivorship Care Plan that contains detailed information regarding cancer diagnosis and treatments, recommended follow-up evaluations, preventive practices and health maintenance information, and guidance on available resources related to psychosocial concerns, employment, and health insurance.
The Passport for Care is being developed to provide this care plan information to childhood cancer survivors. It is an Internet-based resource that provides survivors and their physicians or caregivers immediate access to a portable care summary of the survivor’s treatment history, individualized guidelines for care, information and links on prevention and healthy lifestyles, alerts to guideline changes and new information on late effects of therapies that the survivor may have received, general news on survivor-
For additional information on the Passport For Care, see the background paper prepared by Drs. Poplack, Horowitz, and Fordis in Appendix D.3.