The AYA clinical program will be held one-half day a week in the VECC pediatric clinic or in the adjacent adult clinic, depending on the age of the patient and the medical specialist. Multi-disciplinary meetings currently are held among the adult and pediatric oncologists, radiologists and support group to discuss patient care. For those who can’t be available in person, video conferencing is available at SJHMC and other St. John hospitals.
Based on input from the specialists involved, program staff will enroll AYA patients in appropriate clinical trials and also identify hospital-based or community programs that address the unique needs and issues of AYA patients. Referrals or contact information will be provided to these programs and a nurse navigator will provide scheduling assistance as needed.
The main problem will arise when specialists performing the same service (e.g. oncologists) must determine who will manage the ongoing care of the patient. This will be resolved on a case-by-case basis, guided by the protocol that will provide the best outcome for the patient. For patients considered adults (ages 18 to 39), AYA physicians will serve as consulting specialists first and provide ongoing management of care when requested. For pediatric patients, AYA physicians will continue to provide oncology care. Once patients are enrolled in a trial, their physician will be given a protocol to follow if they choose to retain management of their patients.
This new program will help decrease the burden of cancer in this age group by providing access to the best available multidisciplinary clinical care, meeting unique psychosocial needs, and contributing to the scientific understanding of cancer in this population.
C.J., is another patient example of the type of optimal care provided to this age group. A 22-year-old male with renal Ewing’s sarcoma (a tumor that usually affects bone not the kidney), C.J. was referred to AYA physicians by an adult urologist. We enrolled him in a clinical trial and he did well. Complications of multiple psychosocial issues and pain were treated through our pediatric palliative care service and home visits by a medical social worker. Music therapy, provided through VECC, was an important part of his recovery. As a survivor, he produced a CD of his own music that was presented nationally.
SJHMC has the staffing and structure as well as the experience and training to conduct this program (See other case studies). We need to formalize the process and obtain the needed support among participating specialists as well as referring physicians in the community to fully develop the program. The staff of the AYA program has a close working relationship with both the pediatric and adult palliative care programs.
Goals and Objectives
Our goals are to prolong the lives of AYA patients and provide comprehensive services to enhance their quality of life. While the first year will involve about three to six months of planning, the balance of the first year will be used to implement the delivery of coordinated care to AYA patients. The second year will be a more streamlined process as we gain patient volume and refine our processes for communication, documentation, obtaining referrals, and bridging our services with community programs.
Project Management
The AYA team consists of pediatric oncologists Dr. Hadi Sawaf, program director, and Dr. Adonis Lorenzana, Dr. Ayad Al-Katib, adult lymphoma specialist and medical director of the Van Eslander Cancer Center; Dr. Robert Leonard, medical oncologist; Dr. Robert Morris, OB/Gyn; and Dr. Paul Chuba, radiation oncologist. Extended members of the team include a neurologist, neurosurgeon, orthopedic surgeon, general and pediatric surgeons and adult and pediatric urologists, among others.
The support staff includes nurses, nurse practitioners (serving as care navigators), and a psychologist, social worker, nutritionist and music therapist. Our research assistant has vast experience enrolling patients in clinical trials. Palliative care is provided through two board-certified physicians in hospice and palliative care medicine (Drs. Leonard and Lorenzana), nurses and pastoral care – all of who are trained in end of life assessment.
Evaluation Plan
An assessment tool will be developed to manage and monitor the treatment of this age group of patients – actual age range will be determined during the study based in part on Surveillance Epidemiology and End Results (SEER) data. All patient data will be entered into a tumor registry to measure outcomes and will be reported to the State of Michigan and American College of Surgeons.
Sustainability
Once the LAF grant concludes, St. John Health should be able to secure funding from pharmaceutical companies or national agencies. We may also be able to obtain philanthropic funding from other sources once we are able to structure a program that meets the needs of AYA cancer patients in all settings: clinical, hospital and in the community. The plan should be self-sustaining within five years.
