PCFU CARE INTERVENTION REPLICATION MANUAL

Here you can find the PanCareFollowUp Care Intervention Replication Manual. This Replication Manual was developed within the EU-funded PanCareFollowUp project to support the wider use of the PanCareFollowUp Care Intervention across Europe.

What is the PanCareFollowUp project?

PanCareFollowUp was an EU-funded project looking at how to best deliver Survivorship Care to survivors of childhood and adolescent cancer in Europe. The aim of PanCareFollowUp was to deliver care according to existing and recently developed guidelines using an innovative model for person-centred care that empowers survivors and supports self-management.

What is the PanCareFollowUp Care Intervention?

The PanCareFollowUp Care Intervention is a state-of-the-art, person-centred approach to Survivorship Care which is based on care developed and implemented in the Netherlands since the 1990s.

Acknowledging that differing levels of Survivorship Care are currently available in Europe, materials and supports were developed to cover settings where no care currently exists to those where care is available but can be improved.

The PanCareFollowUp Care intervention comprises the steps shown in the figure below . The survivor is first invited to attend a Survivorship Care clinic and receives a Survivor Questionnaire (including questions on health and psychosocial outcomes, as well as needs and preferences for care) to complete before their clinic visit. In parallel, before the clinic visit, the treating healthcare professional (HCP) prepares a personalised Treatment Summary for the survivor (including their detailed cancer treatment history) and an initial version of care recommendations (based on clinical guidelines) to generate a preliminary Survivorship Care Plan.

At the clinic visit, the survivor and HCP review the Survivor Questionnaire, Treatment Summary and care recommendations in the Survivorship Care Plan. The HCP shares educational materials relevant to the survivor’s unique needs and performs any diagnostic tests required (or provides referral(s) for diagnostic screening, if required). Through shared decision-making at the clinic visit, the survivor and the HCP review and revise the preliminary Survivorship Care Plan. After the clinic visit, the HCP contacts the survivor with the results of any diagnostic tests conducted and the Survivorship Care Plan is revised, if needed. During this follow-up communication, the HCP provides any additional referrals required and can discuss if any additional consultations or information are needed.

Survivorship Care is then delivered in line with the Survivorship Care Plan, which is reviewed at the next regularly scheduled follow-up clinic visit following the same process.

Why has the Care intervention been developed?

Over recent decades, the five-year survival rates of childhood cancer in Europe have increased substantially, from 30% in the 1970s to 80% in early 2000. Today, the European population of childhood cancer survivors, estimated as at least 300,000, is rising by about 12,000 survivors per year. A cancer diagnosis during childhood creates a broad range of medical and psychosocial challenges for the patient and society, requiring close monitoring and care provision even years after successful treatment. Without adequate surveillance and guidance for such Survivorship Care, many survivors experience health issues that could have been prevented or better managed with earlier detection and care. A lack of adequate Survivorship Care places a burden on survivors and their families, but also on societal resources.

Future implementation of the PanCareFollowUp Care intervention in new settings

Ensuring that the PanCareFollowUp Care intervention is used in the real world after the project ends is paramount to achieve enduring improvements to Survivorship Care. Recognising that implementation is a complex process, requiring more than just development of the intervention components and materials, the Replication Manual also provides:

  • an Implementation Strategy with recommendations from implementation studies conducted before and after the Care cohort study carried out during PanCareFollowUp,
  • policy recommendations at both EU and Member State level 1 ,
  • information on how survivors/carers can advocate for Survivorship Care, and
  • practical experiences and lessons learned from the clinics in Belgium, the Czech Republic, Italy and Sweden that participated in the Care cohort study in PanCareFollowUp.

Along with the Care intervention materials above, additional information is provided to help HCPs and health systems to establish a Survivorship Care clinic if none is available, or if a Survivorship Care clinic already exists, to improve the care delivered through adoption of the Care intervention. Clinics interested in twinning opportunities or further support can also contact PanCare (info@pancare.eu).

Disclaimer

PanCare strives to provide accurate and complete information that is up-to-date as of the date of publication.

No warranty or representation, expressed or implied, is made concerning the accuracy, reliability, completeness, relevance, or timeliness of this information.

The PanCare materials are free to use for anyone aiming to inform about late effects and long-term survivorship care. However, no financial advantage may be achieved. All communication should reference PanCare and link to the PanCare website.

Contact

If you have any questions about the PanCareFollowUp Care Intervention Replication Manual you can contact PanCare (info@pancare.eu).

1 While the policy recommendations were developed for EU and Member States, they can be used as a starting point for recommendations in other areas. As the Care intervention is based on international guidelines, the intervention materials can be used both in and outside of Europe.