Evaluating the feasibility and outcomes of implementing PanCareFollowUp Care as usual care in four European Countries: a prospective cohort study

The 5-year survival for children with cancer increased from 30% in the 1970s to more than 80% at present. There are up to 300,000 childhood cancer survivors in Europe and this number is increasing. Years after treatment, childhood cancer survivors are at high risk for developing health and psychosocial late effects, resulting in excess morbidity and mortality compared the general population. The impact on the quality of life (QoL) of survivors and their families, as well as the societal and economic burdens, are significant. However, these impacts can be reduced by long-term survivorship care to detect treatable disease at an early phase and start timely interventions to preserve health, improve QoL, as well as coordinate specialised care and empower survivors. Implementing follow-up care, especially for young adult and adult survivors of childhood cancer, has proven challenging across Europe. These survivors have left paediatric care and most of them have no opportunity to visit experts in survivorship care.

To improve survivorship care for these survivors across Europe, PanCareFollowUp will conduct a prospective cohort study to assess effectiveness, value, cost effectiveness and feasibility of the PanCareFollowUp Care intervention, a person-centred approach to survivor follow-up care based on international clinical guidelines for surveillance of late effects. Ensuring that the PanCareFollowUp Care intervention is used in the real world is paramount to achieving enduring improvements to survivorship care. Hence, the project includes the development of materials to support sustainable maintenance and replication of the PanCareFollowUp Care intervention. The PanCare network will become the guardian of the intervention after the project, ensuring that the intervention materials are openly available, sustainably maintained and widely shared.

We hypothesize that the Care intervention is both feasible and effective in increasing empowerment of childhood cancer survivors.

To meet the objectives of the PCFU Cohort Study, data will be collected from participating survivors and HCPs involved in providing the PCFU Care Intervention at five moments during a period of six months. These measuring moments are linked to the PCFU Care Intervention that distinguishes the following three steps:
1. Preparation of the visit of survivor at the clinic
2. Visit at the clinic
3. Follow-up call by a HCP after the clinical visit

Considering this, the data of the PCFU Cohort Study will be collected at five time points (T1-T5) including the following measuring moments:
T1: 2-8 weeks before scheduled clinical visit of the survivor
T2: Clinical visit of survivor
T3: 2-6 weeks after clinical visit during follow-up call of HCP with survivor
T4: 1 week after follow-up call at T3
T5: 6 months after clinical visit at T2

PCFU Care is a person-centered care approach developed in the Netherlands to meet the needs of adult survivors of childhood cancer, of whom many experience (either physical or psychological) late effects of their childhood cancer or treatment, which may also impact their social wellbeing and participation in society. PCFU Care consists of a PCFU visit at the clinic, prepared by both the survivor and the health care professional involved in PCFU Care, and tailored follow-up care. Before their visit at the clinic, survivors provide information about their health by completing the Survivor questionnaire; health care professionals prepare a Treatment summary. The use of these instruments belong to standardized PCFU Care. During and after the visit, additional diagnostic tests may be performed. A follow-up call with the survivor will take place two to six weeks after the clinical visit and, if agreed with the survivor, any follow-up care will be provided in accordance with the PCFU intervention manual.