Publications
Publications
The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers
Rebecca J. van Kalsbeek, Helena J.H. van der Pal, Lars Hjorth, Jeanette F. Winther, Gisela Michel, Riccardo Haupt, Anne Uyttebroeck, Kylie O’Brien, Katerina Kepakova, Cecilia Follin, Monica Muraca, Tomas Kepak, Vera Araujo-Soares, Edit Bardi, Anne Blondeel, Eline Bouwman, Morven C. Brown, Line E. Frederiksen, Samira Essiaf, Rosella P.M.G. Hermens, Anita Kienesberger, Joke C. Korevaar, Luzius Mader, Marlies Mangelschots, Renée L. Mulder, Selina van den Oever, Mieke Rijken, Katharina Roser, Rod Skinner, Saskia M.F. Pluijm, Jacqueline J. Loonen, Leontien C.M. Kremer, on behalf of the PanCareFollowUp Consortium
More and more children are surviving cancer as medical treatments improve, which is great news! However, many survivors will face late effects of their cancer treatments during their lifetime, so they need different health care than their peers. The need for survivorship care is widely accepted, but is not available in many parts of the world, including Europe. This paper describes how the EU-funded PanCareFollowUp project is developing and testing two person-centred care interventions to overcome this lack of care to improve health and quality of life of survivors.
What did we do?
In this paper, we describe the project plan developed by a group of 14 partners from 10 EU countries, including survivor representatives. First, we gathered all available evidence from previous studies about survivorship care and interviewed survivors and healthcare professionals participating in our project.
From this evidence, two interventions were developed: 1) a person-centred guideline-based model of care (the Care Intervention) and 2) an eHealth lifestyle coaching intervention (the Lifestyle Intervention).
The Care Intervention will be tested as part of usual care in 800 survivors from Belgium, Czech Republic, Italy and Sweden. We will look at how survivors rate their empowerment and satisfaction following the intervention, as well as look at detection of health conditions, satisfaction of healthcare professionals, cost-effectiveness and feasibility. For the Lifestyle intervention, we will look at feasibility in the Netherlands with 60 survivors.
What is the impact?
At the end of the project, we will have data from the PanCareFollowUp Care and Lifestyle interventions supporting their continued use in the clinics involved in the project, and wider use in new clinics. We will also create materials for delivering person-centred survivorship care that we will share freely and widely through the PanCare network (www.pancare.eu) and our stakeholder partners Childhood Cancer International Europe (www.ccieurope.eu/) and SIOP Europe (www.siope.eu/). Our aim is that the PanCareFollowUp project will improve the health and quality of life of every survivor across Europe.
European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer
Rebecca J. van Kalsbeek, Helena J.H. van der Pal, Leontien C.M. Kremer, Edit Bardi, Morven C. Brown, Rachel Effeny, Jeanette F. Winther, Cecilia Follin, Jaap den Hartogh, Riccardo Haupt, Lars Hjorth, Tomas Kepak, Katerina Kepakova, Gill Levitt, Jacqueline J. Loonen, Marlies Mangelschots, Monica Muraca, Marleen Renard, Harun Sabic, Carina U. Schneider, Anne Uyttebroeck, Roderick Skinner, Renée L. Mulder
Why is this paper important?
More and more children are surviving cancer as medical treatments improve, which is great news! However, many survivors will face late effects of their cancer treatments during their lifetime, so they need different health care than their peers. In order for healthcare professionals (HCPs) to provide the best possible long-term follow-up care, evidence-based guidelines are needed. The International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) prepares such guidelines, but they are not available yet for all late effects. This paper describes how the EU-funded PanCareFollowUp project developed 25 additional harmonised, European recommendations to help HCPs deliver care until guidelines are available.
What did we do?
A working group of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated to develop the 25 harmonised, European recommendations using a pragmatic methodology. The working group met face-to-face twice and conducted an external consultation round involving 18 experts from 14 countries. The recommendations developed describe the follow-up care needed while balancing the different requirements of health care systems across Europe.
What is the impact?
The recommendations developed in the PanCareFollowUp project will be used along with IGHG guidelines in the PanCareFollowUp Care intervention study, which will include 800 survivors from Belgium, Czech Republic, Italy and Sweden. The recommendations will also be widely promoted through the PanCare network (www.pancare.eu) and our stakeholder partners Childhood Cancer International Europe (www.ccieurope.eu/) and SIOP Europe (www.siope.eu/) for use in clinics across Europe. Our aim is that the PanCareFollowUp project will improve the health and quality of life of every survivor across Europe by providing evidence-based recommendations for long-term follow-up care.
The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer
Rebecca J. van Kalsbeek, Renée L. Mulder, Riccardo Haupt, Monica Muraca, Lars Hjorth, Cecilia Follin, Tomas Kepak, Katerina Kepakova, Anne Uyttebroeck, Marlies Mangelschots, Jeanette F. Winther, Jacqueline J. Loonen, Gisela Michel, Edit Bardi, Line Elmerdahl Frederiksen, Jaap den Hartogh, Luzius Mader, Katharina Roser, Carina Schneider, Morven C. Brown, Melanie Brunhofer, Irene Göttgens, Rosella P.M.G. Hermens, Anita Kienesberger, Joke C. Korevaar, Roderick Skinner, Helena J.H. van der Pal, Leontien C.M. Kremer
Why is this paper important?
More and more children are surviving cancer as medical treatments improve, which is great news! However, many survivors will face late effects of their cancer treatments during their lifetime. That’s why they need different health care than their peers. However, this type of care is not yet available for many adult survivors of childhood cancer. In this paper, we share the PanCareFollowUp Care Intervention: a person-centred model for survivorship care, and helpful tools for the set-up of a clinic to implement such care.
What did we do?
We worked together with survivors and health care providers across Europe to develop the main components of a person-centred survivorship care visit:
- A Survivor Questionnaire that the survivor can complete before the visit, so the health care provider knows what to focus on and what the needs and preferences of the survivor are;
- A Treatment Summary template, to summarize the childhood cancer treatment;
- A Survivorship Care Plan template, to describe the follow-up plan that was developed by the health care provider and survivor together; and
- Educational materials for survivors and health care providers.
What is the impact?
The PanCareFollowUp Care Intervention is currently being implemented and evaluated in four European clinics in Belgium, the Czech Republic, Italy and Sweden. Through this paper, interested clinics can already access the PanCareFollowUp Care Intervention. In 2024, the lessons we learned in the four European countries will be used to update the Care Intervention. The updated Care Intervention will be made freely available in a Replication Manual through PanCare (www.pancare.eu). Our aim is that the PanCareFollowUp Care Intervention will facilitate implementation of person-centred survivorship care across Europe. This will help to improve access to survivorship care and quality of life for all survivors across Europe.
Evaluating the feasibility, effectiveness and costs of implementing person-centred follow-up care for childhood cancer survivors in four European countries: the PanCareFollowUp Care prospective cohort study protocol
Rebecca J. van Kalsbeek, Joke C. Korevaar, Mieke Rijken, Riccardo Haupt, Monica Muraca, Tomas Kepak, Katerina Kepakova, Anne Blondeel, Stefan Boes, Line Elmerdahl Frederiksen, Samira Essiaf, Jeanette F. Winther, Rosella P.M.G. Hermens, Anita Kienesberger, Jacqueline J. Loonen, Gisela Michel, Renée L. Mulder, Kylie B. O’Brien, Helena J.H. van der Pal, Saskia M.F. Pluijm, Katharina Roser, Roderick Skinner, Marleen Renard, Anne Uyttebroeck, Cecilia Follin, Lars Hjorth, Leontien C.M. Kremer
Why is this paper important?
More and more children are surviving cancer as medical treatments improve, which is great news. However, many survivors will face late effects of their cancer treatment. The need for survivorship care is widely accepted, but many survivors have difficulty accessing appropriate care. The PanCareFollowUp project developed a person-centred survivorship care approach that is easy to implement in different countries: the PanCareFollowUp Care Intervention. In this paper, we describe the study protocol by which we evaluate the effects of the intervention.
What did we do?
We developed a study to see what difference the PanCareFollowUp Care Intervention makes. This is a collaboration between childhood cancer survivors, healthcare providers, researchers and policy makers from ten European countries. We want to study if receiving this type of survivorship care empowers survivors, if it makes them feel better, how many new health conditions are detected, what the experiences are with this new approach in different hospitals and countries, and what the costs are for survivors and for healthcare providers.
What is the impact?
Publishing a study protocol is important for many reasons. We want to be transparent about the research that we do, and we want to share the approach of the PanCareFollowUp Care Intervention with as many people as possible. We expect the first results in the beginning of 2023. Using the lessons learned, the PanCareFollowUp Care Intervention will be improved and distributed freely in a Replication Manual. In this way, we want to allow others to implement person-centred survivorship care in daily practice as well.
Healthcare professionals’ perceived barriers and facilitators of health behavior support provision: A qualitative study
Eline Bouwman, Saskia M.F. Pluijm, Iridi Stollman, Vera Aruajo-Soares, Nicole M.A. Blijlevens, Cecilia Follin, Jeanette F. Winther, Lars Hjorth, Tomas Kepak, Katerina Kepakova, Leontien C.M. Kremer, Monica Muraca, Helena J.H. van der Pal, Carina Schneider, Anne Uyttebroeck, Gertrui Vercruysse, Roderick Skinner, Morven C. Brown, Rosella P.M.G. Hermens, Jacqueline J. Loonen on behalf of the PanCareFollowUp Consortium
Why is this paper important?
Over the last 50 years, medical treatments for childhood cancer have been greatly improved. Even though this is wonderful news, unfortunately, many survivors will develop late effects of their cancer treatment later in life. Evidence suggests that healthy behaviors, such as being physically active, having a normal weight, and not smoking tobacco, can help reduce the risk of developing these late effects. Healthcare professionals (doctors, nurses, etc.) in survivorship care clinics can support survivors in adopting healthy behaviors. However, they may face difficulties in doing so. This paper describes the obstacles and helping factors healthcare professionals experience in providing health behavior support to childhood cancer survivors.
What did we do?
We conducted five focus group interviews with 30 healthcare professionals working at PanCareFollowUp survivorship care centers in the Netherlands, Belgium, the Czech Republic, and Sweden. In these interviews, open-ended questions were asked about the obstacles and helping factors healthcare professionals experience when providing health behavior support to survivors. Healthcare professionals included doctors and nurses, but also psychologists and physiotherapists who regularly work with childhood cancer survivors. All focus group interviews were recorded and typed out. We then made labels (codes) of every obstacle or helping factor described by the healthcare professionals in the text. Next, we created categories by combining labels that were alike. Lastly, all these categories were mapped into fixed domains (themes) of the Theoretical Domains Framework. This framework is often used by researchers to analyze research and consists of domains that can explain why people act the way they do, for instance, “Knowledge”, “Skills”, or “Social influences”.
What is the impact?
In this study, we saw that healthcare professionals need more education and training on health behaviors and late effects. Also, survivorship care clinics should make sure that there is enough time to discuss health behaviors when survivors come for their regular appointment. Lastly, it is helpful for healthcare professionals to know who they can refer survivors to (dieticians, physiotherapists, etc.). In this way, health behavior support for childhood cancer survivors could be improved. Better health behavior support for survivors will help them in adopting better health behaviors, and hopefully eventually, to have better health and quality of life.
Person-centred online lifestyle coaching in childhood, adolescent, and young adult cancer survivors: protocol of the multicentre PanCareFollowUp lifestyle intervention feasibility study
Eline Bouwman, Rosella P.M.G. Hermens, Morven C. Brown, Vera Aruajo-Soares, Nicole M.A. Blijlevens, Tomas Kepak, Katerina Kepakova, Leontien C.M. Kremer, Seline R. van den Oever, Helena J.H. van der Pal, Roderick Skinner, Saskia M.F. Pluijm, Jacqueline J. Loonen on behalf of the PanCareFollowUp Consortium
Why is this paper important?
Nowadays, children, adolescents and young adults diagnosed with cancer have a far better prognosis than 50 years ago. Even though this is fantastic news, survivors are at risk for developing health problems later in life, also known as late effects. Research has shown that an unhealthy lifestyle including a low physical activity level and an unhealthy diet, increases the risk of developing these late effects in childhood adolescent and young adult cancer survivors. The PanCareFollowUp project has developed a person-centered online lifestyle coaching intervention to support survivors in adopting and maintaining a healthy lifestyle. This paper describes the study designed to test whether the intervention is doable and possibly effective.
What did we do?
The PanCareFollowUp Lifestyle intervention consists of 3-6 personal video calling sessions with a lifestyle coach with knowledge on late effects. The intervention will be evaluated (i.e., properly and professionally assessed) with a study conducted at two survivorship care clinics in the Netherlands. A total of 60 survivors who are (i) diagnosed with cancer before the age of 25, (ii) who have completed treatment at least 5 years ago, (iii) who are currently 16-55 years old, (iv) and have a low physical activity level and/or unhealthy diet will be asked to participate. With help of questionnaires and reports written by the coaches, we will evaluate whether the intervention is doable. By assessing physical activity, diet, and BMI (body mass index) through questionnaires, reports, and/ or an accelerometer at three different time points, we will also examine how many survivors achieve the lifestyle goals agreed upon with their coach.
What is the impact?
At the end of the project, the results of the PanCareFollowUp Lifestyle intervention study will be used to determine whether we can continue with testing the intervention with a larger study, to get even more precise information, but also whether we need to change the intervention based on the experiences of survivors and their coaches. In addition, we will write a manual of this intervention to be used by other childhood cancer survivorship care clinics. This will help these clinics to offer the intervention to the survivors attending their clinics as well with the ultimate goal of helping survivors worldwide in adopting and maintaining healthy lifestyle behaviours!
Perceived barriers and facilitators to health behaviors in European childhood cancer survivors
Eline Bouwman, Saskia M. F. Pluijm, Vera Araujo-Soares, Nicole M. A. Blijlevens, Cecilia Follin, Jeanette F. Winther, Lars Hjorth, Tomas Kepak, Katerina Kepakova, Leontien C. M. Kremer, Monica Muraca, Helena J. H. van der Pal, Carina Schneider, Anne Uyttebroeck, Gertrui Vercruysse, Rod Skinner, Morven C. Brown, Rosella P. M. G. Hermens, the PanCareFollowUp Consortium
Why is this paper important?
Over the last 50 years, medical treatments for childhood cancer have been greatly improved. Even though this is wonderful news, unfortunately, many survivors will develop late effects of their cancer treatment later in life. Evidence suggests that healthy behaviors, such as being physically active, having a normal weight, and not smoking tobacco, can help reduce the risk of developing these late effects. However, childhood cancer survivors may experience survivor-specific problems with healthy behaviors due to health issues resulting from their cancer treatment, but they may also experience the same problems as the general population. This paper describes the obstacles and helping factors childhood cancer survivors experience with adopting or sticking to healthy behaviors.
What did we do?
We conducted a focus group interview with childhood cancer survivors during the PanCare Meeting in Basel (2019) and 20 telephone interviews with Dutch childhood cancer survivors who receive survivorship care. In these interviews, open-ended questions were asked about the obstacles and helping childhood cancer survivors experiences when adopting or sticking to healthy behaviors. The focus group interview and telephone interviews were recorded and typed out. We then made labels (codes) of every obstacle or helping factor described by the childhood cancer survivor in the text. Next, we created categories by combining labels that were alike. Lastly, all these categories were mapped into fixed domains (themes) of the Theoretical Domains Framework. This framework is often used by researchers to analyze research and consists of domains that can explain why people act the way they do, for instance, “Knowledge”, “Skills”, or “Social influences”.
What is the impact?
In this study, childhood cancer survivors expressed that they wanted to have more knowledge on why healthy behaviours are especially important for them. Healthcare professionals (doctors, nurses, etc.) could help with providing this knowledge to survivors. Survivors also said that it is helpful to know the physical and long-term benefits of healthy behaviours and to go to professionals who could help them with adopting healthier behaviours. A workplace or having people around survivors who stimulate healthy behaviours was also viewed as helpful. Most problems to behave in a healthy manner were related to the limited time available and people around survivors who are not behaving healthy. Lastly, (social) media could both help survivors and hindering survivors with healthy behaviours. Overall, this study showed that health behavior support from healthcare professionals as well as health behaviors interventions for childhood cancer survivors are very relevant and should be part of standard survivorship care.