Highlights
- •Survivorship care may improve survivors' health and quality of life.
- •Many adult childhood cancer survivors do not receive optimal survivorship care.
- •PanCareFollowUp facilitates the implementation of survivorship care across Europe.
- •Harmonised recommendations for long-term follow-up care will be developed.
- •Models for survivorship care and lifestyle coaching will be developed and evaluated.
Abstract
Background
The majority of childhood cancer survivors are at risk of treatment-related adverse
health outcomes. Survivorship care to mitigate these late effects is endorsed, but
it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp
project was initiated to improve their health and quality of life (QoL) by facilitating
person-centred survivorship care.
Methods
The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners
from ten European countries, including survivor representatives. The consortium will
develop two PanCareFollowUp Interventions, including a person-centred guideline–based
model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention).
Their development will be informed by several qualitative studies and systematic reviews
on barriers and facilitators for implementation and needs and preferences of healthcare
providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention
as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech
Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions,
satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility
of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands
among 60 survivors.
Results
Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle
Intervention, will be published and made freely available after the project. Moreover,
results of the corresponding studies are expected within the next five years.
Conclusions
The PanCareFollowUp project is a novel European collaboration aiming to improve the
health and QoL of all survivors across Europe by developing and prospectively evaluating
the person-centred PanCareFollowUp Care and Lifestyle Interventions.
Keywords
Abbreviations:
CastorEDC (Castor Electronic Data Capture), CPG (clinical practice guideline), ENCCA (European Network for Cancer Research in Children and Adolescents), ExPO-r-Net (European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment), HCP(s) (healthcare provider(s)), IGHG (International Late Effects of Childhood Cancer Guideline Harmonisation Group), JARC (Joint Action on Rare Cancers), PanCare (Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer), QoL (quality of life), SurPass (Survivorship Passport)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: June 18, 2021
Accepted:
May 20,
2021
Received in revised form:
May 12,
2021
Received:
April 2,
2021
Identification
Copyright
© 2021 Elsevier Ltd. All rights reserved.
