Childhood cancer survivor care: development of the Passport for Care

Abstract

Survivors of childhood cancer are at risk of long-term adverse effects and late effects of the disease and/or its treatment. In response to national recommendations to improve evidence-based follow-up care, a web-based support system for clinical decision making, the Passport for Care (PFC), was developed for use at the point of care to produce screening recommendations individualized to the survivor. To date, the PFC has been implemented in over half of the nearly 200 clinics affiliated with the Children's Oncology Group across the USA. Most clinician users report that the PFC has been integrated into clinic workflows, and that it fosters improved conversations with survivors about the potential late effects a survivor might experience and about the screening and/or behavioural interventions recommended to improve health status. Furthermore, clinicians using the PFC have indicated that they adhered more closely to follow-up care guidelines. Perspectives on the challenges encountered and lessons learned during the development and deployment of the PFC are reviewed and contrasted with other nationwide approaches to the provision of guidance on survivor follow-up care; furthermore, the implications for the care of childhood cancer survivors are discussed.

Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors

“…GP-led follow-up might be acceptable to survivors who no longer want to attend hospital-based follow-up. Close collaboration with specialists and the use of survivorship passports [19] could guarantee high-quality follow-up for these survivors. Further research should try to determine whether Swiss AYA cancer survivors would accept a risk-stratified follow-up.…”

Factors Associated With Noncompliance With Long-term Follow-up Care Among Pediatric Cancer Survivors

“…[16, 17] Survivorship clinics can improve this knowledge; [27] therefore, identifying those at risk for poor engagement and intervening to increase their engagement in care is critical. Many hospitals are working on survivorship care plan interventions [28] to improve survivor knowledge and survivorship care coordination.…”

Perceived information provision and information needs in adolescent and young adult cancer survivors

“…Also, among young adult cancer survivors, a survivorship care plan was associated with higher confidence in managing their survivorship care (Casillas et al, 2011). In Switzerland, it is planned to provide all CCS and AYACS with a survivorship passport (Lack, 2016;Poplack et al, 2014). This passport will contain comprehensive information on survivor's cancer diagnosis and treatment, and individual recommendations for follow-up care (Lack, 2016).…”