Long-term Follow-up Program goals

The goal of this program is to build relationships between the patient and a multi-disciplinary care team, so the experience of the patient and his or her family is a partnership with the care team, with high patient participation.

Cornerstones of this care will include:

• Clinic care to minimize and treat late-effects of cancer treatment
• Psychosocial support through psychology and family counseling consults and use of support groups, child life consultation and pet therapy (when available)
• Education of patients and their families, statewide healthcare professionals and local multi-disciplinary team members
• Contribution to Children’s Oncology Group research

Wesley Children’s Hospital is proud to announce the development of the Children’s Oncology Long-Term Follow-Up Program. This program will care for childhood cancer survivors from five years post-treatment and beyond. Survivorship concerns, research and resources will all be included in this program. Physicians and staff will partner with a multi-disciplinary team to accomplish patient and family goals.

Why is long-term follow-up important?

Wesley Children’s Hospital and the KU Pediatric Oncology Clinic are partnering to care for regional childhood cancer survivors.

Considerations must be made to assess late effects of cancer treatment. Survivors may have challenges with memory, anxiety, depression, infertility or other medical problems, including secondary cancers. The long-term follow-up program will use roadmaps from the Children’s Oncology Group and evidence-based medicine to provide required imaging, labs, psychosocial assessments and support of the patient and family. This program will accomplish patient follow-up care in a format that is comfortable for the child and family, including offering support groups and resources.

The goal of this program is to build relationships with the patient and multi-disciplinary team, so the experience of the patient and their family is a partnership, with high patient participation. We hope it will be a cheerful celebration of health and wellness at visits and whenever possible. Primary care providers and specialists of the patient will be included in communication of results and referrals to improve the patient’s quality of life.

The program

This program will care for childhood cancer survivors from five years post treatment and beyond. The multi-disciplinary team will work with patients and their families until age 21 and then transition patients to the appropriate adult provider. Wellness will be the focus of these patient appointments including overall health and wellbeing, evidence-based treatment of late effects, psychosocial health and healthy family relationships. Patients will be encouraged to continue regular follow up appointments with their primary care physician. Each patient will receive specialized long-term follow-up care based on their cancer diagnosis and their course of treatment.

Some survivors are asymptomatic and do not realize the importance of ongoing follow-up care. The clinic multi-disciplinary team will educate patients on their role in life-long health, and that achieving that goal includes attending the prescribed follow-up clinic appointments.

Childhood cancer survivors and their families will be educated on the late effects that may impact them through the assessment of the pediatric oncologist, the review of their medical records and treatments.

Patients and their families can have anxiety of another cancer diagnosis or fear of being diagnosed with a late effect of cancer treatment.

They may want to avoid follow-up care due to unresolved feelings about their cancer diagnosis. The intent of the Long-Term Follow-Up Program is to ease this transition and preempt this reaction through consults with psychologists, family therapists, child life specialists and other multi-disciplinary team members.

This approach will provide the opportunity for patients and their families to fully process their experience and the stage in their care they may focus on next. Surviving childhood cancer will be celebrated each September with an event at Wesley Children’s Hospital, support groups, resources, education and therapies will be offered to patients, families and patient siblings.

Clinic patients are seen in in Building 4, 2nd floor of Wesley Medical Center, 550 N. Hillside. Parking is free and available in the attached parking garage off Murdock at Hillside. If you need directions, please don’t hesitate to call (316) 962-7940.