EXPERIENCES AND BEST PRACTICES FROM BELGIUM, CZECH REPUBLIC, ITALY AND SWEDEN

A number of common themes were found across the four centres:

  • Funding: Sustainable funding from health systems is critical for establishing and maintaining Survivorship Care so that clinics are not reliant on charities and social or research projects for funding. The inclusion of Survivorship Care in National Cancer Plans is one mechanism to promote Survivorship Care as a healthcare priority, but there need to also be guidelines and funded programmes by relevant authorities for delivering care (including resources for the coordination and organisation of care), which ensure feasibility and sustainability.
  • Institutional support: Institutional support is a natural, but essential, follow-on from national or regional support. When the need for a Survivorship Care programme has been accepted at these levels, institutions must provide the necessary support, in terms of financial allocations, staff provision, facilities, etc. The process of gaining institutional support can be long and difficult as the knowledge of late effects and the need for Survivorship Care is relatively new, late effects specialists are not always available and there can be the perception that the patient cohort is small and late effects few.
  • All survivors need Survivorship Care: All survivors should be able to access life-long Survivorship Care that meets their individual needs. International evidence-based guidelines that define the care that should be delivered based on the risk profile of each survivor are available but need to be applied more widely in clinical practice and to survivors of all ages. Ideally, Survivorship Care should start from the end of treatment, but this has not always been the case, so clinics need approaches to identify survivors not receiving care. This can be challenging, in particular for older survivors or those lost to follow-up. Optimally, there are Local, Regional and National registries where all childhood cancer patients are registered during cancer treatment. When follow-up starts, there must be a linkage to Death registries for vital status updates. If a country has a unique identification number, it will facilitate keeping track of the CCS. For example, in Italy, there is a national academic registry (Mod 1.01 of the AIEOP registry – Italian Society of Pediatric Hemato-Oncology) in which all patients with childhood cancer are registered after informed consent. The end date of treatment is also collected, which facilitates delivery of Survivorship Care. The SurPass platform, used to deliver Survivorship Care in some clinics in Italy, is linked to Mod 1.01. In Belgium, each pediatric oncology centre has its own database from which patients can be invited for Survivorship Care. In each individual electronic patient file, there is a linkage to national person records (including deaths). If necessary, the National Belgian Cancer Registry could also be involved in identifying survivors.
    in addition, or if registry-cased options like those described above are unavailable, national patient organisations could be contacted to share information about the care that is offered with their members and provide contact information for the relevant clinics. Often these organisations are actively seeking information on Survivorship Care and may already have survivors that are looking for care options. CCI Europe (office@ccieurope.eu) can provide

    clinics with information about patient organisations in Europe.
    In general, a list of Survivorship Care clinics should be available in each country. For example, a list of late effects clinics in Italy has recently been published with details of the facilities provided by each.42 Large or experienced centres willing to be a point of contact for questions for other countries can be requested through PanCare (info@pancare.eu).

To help clinics implement the PanCareFollowUp Care intervention, the clinics that participated in the Care cohort study have provided information about their clinic and practices. Below, is a summary of the main learnings and their three tips for optimal Survivorship Care.

For each clinic, further details are given if you click on the name of the city about the transition process from paediatric to adult care, the composition of the healthcare teams delivering Survivorship Care, how survivors and parents participate in care and how other specialties are involved in care.

 

Country Main Learning(s) 3 Tips for Optimal Survivorship Care
Belgium – Leuven Uniform guidelines are essential for both Paediatric and Adult teams
  • Dedicated staff, in paediatric and adult departments, are essential.
  • A Coordinator for Survivorship Care is crucial as a central point of contact, assisting in communication between different specialists, departments,
  • and the survivor.
  • Digitalisation can make the care process easier, enhancing the efficiency and accessibility of Survivorship Care.
Czech Republic –
Brno

Mental health needs are high and should be routinely addressed.

Preparing the Treatment Summary using paper records is time
consuming – digitalisation of data in
structured formats within health systems would ease this burden.

Recommendations (guidelines) should be regularly reviewed and
updated, accounting for feedback from clinics using the recommendations (if possible).

  • A transition programme from paediatric to adult care is essential, including the transfer of survivors’ treatment data.
  • Dedicated staff, with multi-disciplinary expertise, are needed.
  • Personalisation of follow-up care based on risk stratification and guidelines and coordination of care with general practitioners may streamline the use of resources and help achieve the goal of providing optimal care for each survivor according to their individual needs.
Italy – Genoa It is important that late effects specialists share their knowledge about Survivorship Care with other clinicians, which can be facilitated through the Survivorship Care Plan
(included in SurPass in Italy).
  • Clinicians involved in Survivorship Care should also be involved in research.
  • Survivorship Care is a field that is still changing, so clinical teams need to stay well-informed.
  • Developing communication skills is essential for delivering high-quality Survivorship Care.
Sweden – Lund A follow-up call shortly after a Survivorship Care clinic visit is really important.
  • To deliver optimal care, there needs
    to be enough time, enough staff and
    enough resources.
  • Knowledge about guidelines is
    essential for high-quality Survivorship Care.
  • Survivorship Care is best delivered by a multidisciplinary team.