An important part of PanCareSurPass is promoting implementation of the Survivorship Passport by widely sharing the project’s results. Below are peer-reviewed publications from the project.
Scaling up and implementing the digital Survivorship Passport tool in routine clinical care – The European multidisciplinary PanCareSurPass project
Filbert AL, Kremer L, Ladenstein R, Chronaki C, Degelsegger-Márquez A, van der Pal H, Bardi E, Uyttebroeck A, Langer T, Muraca M, Cañete Nieto A, Rascon J, Bagnasco F, Beyer S, te Dorsthorst J, Essiaf S, Orduña Galan A, Kienesberger A, O’Brien K, Correcher Palau M, Pluijm SMF, di Profio S, Saraceno D, Schneider C, Schreier G, Trinkūnas J, Zamberlan I, Grabow D, Haupt R on behalf of the PanCare SurPass consortium
Eur. J. Cancer 2024. doi: 10.1016/j.ejca.2024.114029
Under embargo
Background: Childhood cancer survivors (CCS), of whom there are about 500,000 living in Europe, are at an increased risk of developing health problems [1–6] and require lifelong Survivorship Care. There are information and knowledge gaps among CCS and healthcare providers (HCPs) about requirements for Survivorship Care [7–9] that can be addressed by the Survivorship Passport (SurPass), a digital tool providing CCS and HCPs with a comprehensive summary of past treatment and tailored recommendations for Survivorship Care. The potential of the SurPass to improve person-centred Survivorship Care has been demonstrated previously [10,11].
Methods: The EU-funded PanCareSurPass project will develop an updated version (v2.0) of the SurPass allowing for semi-automated data entry and implement it in six European countries (Austria, Belgium, Germany, Italy, Lithuania and Spain), representative of three infrastructure healthcare scenarios typically found in Europe. The implementation study will investigate the impact on person-centred care, as well as costs and processes of scaling up the SurPass. Interoperability between electronic health record systems and SurPass v2.0 will be addressed using the Health Level Seven (HL7) International interoperability standards.
Results: PanCareSurPass will deliver an interoperable digital SurPass with comprehensive evidence on person-centred outcomes, technical feasibility and health economics impacts. An Implementation Toolkit will be developed and freely shared to promote and support the future implementation of SurPass across Europe.
Conclusions: PanCareSurPass is a novel European collaboration that will improve person-centred Survivorship Care for CCS across Europe through a robust assessment of the implementation of SurPass v2.0 in different healthcare settings.
European recommendations for short-term surveillance of health problems in childhood, adolescent and young adult cancer survivors from the end of treatment to 5 years after diagnosis: a PanCare guideline
de Beijer IAE, Skinner R, Haupt R, Grabow D, Bardi E, Beccaria A, Nieto AC, Essiaf S, Filbert AL, Gsell H, Kienesberger A, Langer T, McColgan P, Muraca M, Rascon J, Tallone R, Tomasikova Z, Uyttebroeck A, Kremer LCM, van der Pal HJH, Mulder RL on behalf of the PanCareSurPass consortium
J. Cancer Survivorship 2023. doi: 10.1007/s11764-023-01493-z
Why is this paper important?
Survivorship care after childhood cancer is important to prevent and manage health problems that may occur later in life (late effects). Childhood cancer survivors require ongoing care for health problems from the end of cancer treatment throughout their lives. Currently, there is a lack of evidence-based guidelines for the best ways to monitor survivors’ health from the end of treatment to five years after diagnosis. The goal of the work in this paper was to address this gap by creating recommendations for short-term surveillance of health problems, drawing from existing evidence-based guidelines for long-term follow-up (LTFU) care.
What did we do?
A guideline working group was formed, consisting of healthcare professionals, parents and survivor representatives from 10 countries. This group worked together to identify relevant health problems that may occur in survivors between the end of treatment and five years after diagnosis. The group then developed recommendations for short-term surveillance of health problems based on existing LTFU guidelines and the clinical expertise of the working group members. In total, the working group developed 44 recommendations for short-term surveillance of health problems.
What is the impact?
The development of a guideline for short-term monitoring of health problems fills the current gap in survivorship care for childhood cancer survivors. This guideline offers support right after treatment and up to five years after diagnosis. Specifically, the guideline will help healthcare professionals to provide good follow-up care and improve the quality of life of childhood cancer survivors.
Purpose: Childhood, adolescent and young adult (CAYA) cancer survivors require ongoing surveillance for health problems from the end of cancer treatment throughout their lives. There is a lack of evidence-based guidelines on optimal surveillance strategies for the period from the end of treatment to 5 years after diagnosis. We aimed to address this gap by developing recommendations for short-term surveillance of health problems based on existing long-term follow-up (LTFU) care guidelines.
Methods: The guideline working group, consisting of healthcare professionals, parents and survivor representatives from 10 countries, worked together to identify relevant health problems that may occur in survivors between the end of treatment and 5 years after diagnosis and to develop recommendations for short-term surveillance of health problems. The recommendations were drawn from existing LTFU guidelines and adapted where necessary based on clinical expertise.
Results: The working group developed 44 recommendations for short-term surveillance of health problems, which were divided into four categories based on the level of surveillance required: awareness only (n = 11), awareness, history and/or physical examination without surveillance test (n = 15), awareness, history and/or physical examination with potential surveillance test (n = 1) and awareness, history and/or physical examination with surveillance test (n = 17).
Conclusion: The development of a guideline for short-term surveillance of health problems fills a critical gap in survivorship care for CAYA cancer survivors, providing much-needed support immediately after treatment up to 5 years after diagnosis.
Implications for Cancer Survivors: This guideline will support healthcare professionals to provide appropriate follow-up care and improve the quality of life of CAYA cancer survivors.
Barriers and facilitators to the implementation of a new European eHealth solution (SurPass v2.0): the PanCareSurPass Open Space study
de Beijer IAE, Hardijzer EC, Haupt R, Grabow D, Balaguer J, Bardi E, Nieto AC, Ciesiūniene A, Düster V, Filbert AL, Gsell H, Kapitančukė M, Ladenstein R, Tormo MT, Uyttebroeck A, Vercruysse G, van der Pal HJH, Kremer LCM, Pluijm SMF on behalf of the PanCareSurPass consortium
J. Cancer Survivorship 2023. doi: 10.1007/s11764-023-01498-8
Why is this paper important?
Survivorship care after childhood cancer is important to prevent and manage health problems that can occur later in life (late effects). The Survivorship Passport (SurPass) is a special document for childhood cancer survivors. It includes a summary of their treatment and a personalised Survivorship Care Plan for their ongoing health care, based on the latest guidelines for monitoring for late effects. Before, the SurPass was made by hand by a clinician, and it took a long time (around 1.5 hours per survivor). Now, the latest version of the SurPass is digital, so some parts of it can be created automatically by a computer system. As part of the EU-funded PanCareSurPass project, six childhood cancer clinics in Italy, Austria, Belgium, Germany, Lithuania, and Spain will use this updated SurPass in a multi-country implementation study. Before this study, to make sure the SurPass works well in practice in the six clinics, survivors, healthcare professionals, care managers, IT specialists, and others were consulted to via “Open Space” meetings to find out about any problems (barriers) and things that can help (facilitators) expected when using the SurPass.
What did we do?
“Open Space” meetings were held in all six clinics, to find out what participants (survivors, healthcare professionals, care managers, IT specialists, and others) thought was important for introducing SurPass in their clinic or hospital. Open Space meetings are big group discussions where participants decide what topics to talk about. Together, 115 challenges and 159 things that could help with SurPass implementation were discovered during the meetings. The main challenges were a lack of consistent long-term follow-up (LTFU) care across centres and network collaboration, uncertainty about how easy it is to use SurPass, and uncertainty about integrating SurPass into computer systems. The main things that could help included having consistent and coordinated LTFU care in the hospitals, the ability of childhood cancer survivors to protect sensitive information in SurPass, and (semi) automatic transfer of data and filing. To deal with these challenges and take advantage of the helpful factors and based on the findings of the “Open Space” meetings, 27 recommendations were created for implementing SurPass and shared with the clinics that will carry out the multi-country implementation study.
What is the impact?
Knowing what obstacles might be faced when implementing the digital SurPass will allow solutions to be identified at an early stage. Obstacles can then be overcome in time to ensure a smooth implementation. On the other hand, knowing which factors will be helpful during the implementation process also ensures the clinics can make full use of them. Overall, this study contributes to the successful implementation of the SurPass, as a digital tool to improve childhood cancer survivorship care, thereby improving the quality of life of childhood cancer survivors.
Purpose: To identify barriers and facilitators for implementing the Survivorship Passport (SurPass) v2.0 in six long-term follow-up (LTFU) care centres in Europe.
Methods: Stakeholders including childhood cancer survivors (CCSs), healthcare providers (HCPs), managers, information and technology (IT) specialists, and others, participated in six online Open Space meetings. Topics related to Care, Ethical, Legal, Social, Economic, and Information & IT-related aspects of implementing SurPass were evaluated.
Results: The study identified 115 barriers and 159 facilitators. The main barriers included the lack of standardised LTFU care in centres and network cooperation, uncertainty about SurPass accessibility, and uncertainty about how to integrate SurPass into electronic health information systems. The main facilitators included standardised and coordinated LTFU care in centres, allowing CCSs to conceal sensitive information in SurPass and (semi)automatic data transfer and filing.
Conclusions: Key barriers to SurPass implementation were identified in the areas of care, ethical considerations, and information & IT. To address these barriers and facilitate the implementation on SurPass, we have formulated 27 recommendations. Key recommendations include using the internationally developed protocols and guidelines to implement LTFU care, making clear decisions about which parties have access to SurPass data in accordance with CCSs, and facilitating (semi)automated data transfer and filing using Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR).
Implications for Cancer Survivors: The findings of this study can help to implement SurPass and to ensure that cancer survivors receive high-quality LTFU care with access to the necessary information to manage their health effectively.
Barriers and facilitators to implementation of the interoperable Survivorship Passport (SurPass) v2.0 in 6 European countries: a PanCareSurPass online survey study
van den Oever S, de Beijer AE, Kremer LCM, Alfes M, Balaguer J, Bardi E, Nieto AC, Cangioli G, Charalambous E, Chronaki C, Costa T, Degelsegger A, Düster V, Filbert AL, Grabow D, Gredinger G, Gsell H, Haupt R, Helvoirt M, Ladenstein R, Langer T, Laschkolnig A, Muraca M, Rascon J on behalf of the PanCareSurPass consortium
J. Cancer Survivorship 2023;164. doi: 10.1007/s11764-023-01335-y
Why is this paper important?
Survivorship care after childhood cancer is important to prevent and treat health problems that can occur later in life (late effects). The Survivorship Passport is a document which provides a survivor of childhood cancer with a treatment summary and personalised care plan. This plan describes the clinical tests needed in the upcoming years, based on the latest guidelines for late effects screening. So far, preparation of the Survivorship Passport was done manually by the late effects doctor, which is a very time consuming task (on average 1.5 hours per survivor). The newest version of the Survivorship Passport is therefore digitalised – parts of the document can be prepared automatically by a computer system.
As part of the European PanCareSurPass project, six childhood cancer hospitals in Italy, Austria, Belgium, Germany, Lithuania and Spain will start using this new version of the Survivorship Passport. They will then evaluate the tool, so that it can be improved even further. To ensure that implementation of the Survivorship Passport will be successful, we researched possible barriers (or obstacles) and facilitators (or helping factors) in each of the six hospitals.
What did we do?
We designed three surveys, one for late effects doctors, one for hospital/clinic managers and one for survivors. In these surveys, we asked about their opinions on the use of the Survivorship Passport in their hospital. Questions were related to different action fields (or themes), namely survivorship care, and ethical, legal, social and economical aspects. In total, we collected 54 responses. From these responses, we carefully extracted possible barriers and facilitators to implementation of the Survivorship Passport. We did this for each of the six hospitals individually.
The most important barriers we identified were:
- a lack of time (even digitalised, preparation of one Passport takes about 30 minutes)
- a lack of funding and a lack of knowledge about possible ethical and legal issues.
- survivors possibly getting more anxiety about health after receiving a Passport.
Facilitators on the other hand, were:
- each of the six hospitals having access to electronic medical records (important for automatically generating the Passport)
- each of the six hospitals already having experience with the Survivorship Passport or tools that are similar to this one.
What is the impact?
Knowing which obstacles we may face during implementation of the new Survivorship Passport allows us to find solutions in an early stage. Obstacles can then be overcome in time, so that implementation will go smoothly. On the other hand, knowing which factors will be of help during the implementation process will enable us to use them to their full potential. All in all, this study contributes to successful implementation of the Survivorship Passport, which in turn has the potential to improve childhood cancer survivorship care.
Purpose: Long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) is essential to improve and maintain their quality of life. The Survivorship Passport (SurPass) is a digital tool which can aid in the delivery of adequate LTFU care. During the European PanCareSurPass (PCSP) project, the SurPass v2.0 will be implemented and evaluated at six LTFU care clinics in Austria, Belgium, Germany, Italy, Lithuania and Spain. We aimed to identify barriers and facilitators to the implementation of the SurPass v2.0 with regard to the care process as well as ethical, legal, social and economical aspects.
Methods: An online, semi-structured survey was distributed to 75 stakeholders (LTFU care providers, LTFU care program managers and CCSs) affiliated with one of the six centres. Barriers and facilitators identified in four centres or more were defined as main contextual factors influencing implementation of SurPass v2.0.
Results: Fifty-four barriers and 50 facilitators were identified. Among the main barriers were a lack of time and (financial) resources, gaps in knowledge concerning ethical and legal issues and a potential increase in health-related anxiety in CCSs upon receiving a SurPass. Main facilitators included institutions’ access to electronic medical records, as well as previous experience with SurPass or similar tools.
Conclusions: We provided an overview of contextual factors that may influence SurPass implementation. Solutions should be found to overcome barriers and ensure effective implementation of SurPass v2.0 into routine clinical care.
Implications for Cancer Survivors: These findings will be used to inform on an implementation strategy tailored for the six centres.
Factors Influencing Implementation of the Survivorship Passport: The IT Perspective
Chronaki C, Charalambous E, Cangioli G, Schreier G, van den Oever S, van der Pal H, Kremer L, Uyttebroeck A, Van den Bosch B, Trinkunas J, Rascon J, Ladenstein R, Düster V, Bardi E, Walz D, Filberd AL, Grabow D, Langer T, Nieto AC, Galán AJO, Correcher Palau M, Cavalca G, Haupt R.
Stud Health Technol Inform. 2022 May 16;293:161-168. doi: 10.3233/SHTI220363
Compared to the general population, childhood cancer survivors represent a vulnerable population as they are at increased risk of developing health problems, known as late effects, resulting in excess morbidity and mortality. The Survivorship Passport aims to capture key health data about the survivors and their treatment, as well as personalized recommendations and a care plan with the aim to support long-term survivorship care. The PanCareSurPass (PCSP) project building on the experience gained in an earlier implementation in Giannina Gaslini Institute, Italy, will implement and rigorously assess an integrated, HL7 FHIR based, implementation of the Survivorship Passport. The six implementation countries, namely Austria, Belgium, Germany, Italy, Lithuania, and Spain, are supported by different national or regional digital health infrastructures and Electronic Medical Record (EMR) systems. Semi structured interviews were carried out to explore potential factors affecting implementation, identify use cases, and coded data that can be semi-automatically transferred from the EMR to SurPass. This paper reflects on findings of these interviews and confirms the need for a multidisciplinary and multi-professional approach towards a sustainable and integrated large-scale implementation of the Survivorship Passport across Europe.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 899999. The material presented and views expressed here are the responsibilities of the author(s) only. The EU Commission takes no responsibility for any use made of the information set out.