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; PanCareFollowUp Consortium

doi:10.1016/j.ejca.2021.05.030

The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers

Eur J Cancer. 2021 Aug:153:74-85. doi: 10.1016/j.ejca.2021.05.030. Epub 2021 Jun 18.

Authors

Rebecca J van Kalsbeek¹, Helena J H van der Pal², Lars Hjorth³, Jeanette F Winther⁴, Gisela Michel⁵, Riccardo Haupt⁶, Anne Uyttebroeck⁷, Kylie O'Brien⁸, Katerina Kepakova⁹, Cecilia Follin¹⁰, Monica Muraca⁶, Tomas Kepak⁹, Vera Araujo-Soares¹¹, Edit Bardi¹², Anne Blondeel¹³, Eline Bouwman¹⁴, Morven C Brown¹⁵, Line E Frederiksen¹⁶, Samira Essiaf¹³, Rosella P M G Hermens¹⁷, Anita Kienesberger¹⁸, Joke C Korevaar¹⁹, Luzius Mader²⁰, Marlies Mangelschots⁷, Renée L Mulder²¹, Selina van den Oever²¹, Mieke Rijken²², Katharina Roser⁵, Rod Skinner²³, Saskia M F Pluijm²¹, Jacqueline J Loonen¹⁴, Leontien C M Kremer²⁴; PanCareFollowUp Consortium

Collaborators

PanCareFollowUp Consortium:
Leontien C M Kremer²⁵, Helena J H Van der Pal², Renée L Mulder²¹, Saskia M F Pluijm²¹, Rebecca J van Kalsbeek²¹, Selina R Van den Oever²¹, Lars Hjorth³, Cecilia Follin¹⁰, Lill Eriksson¹⁰, Thomas Relander¹⁰, Jacob Engellau¹⁰, Karin Fjordén¹⁰, Karolina Bogefors¹⁰, Anna Säll Fors Holmqvist³, Riccardo Haupt²⁶, Monica Muraca²⁶, Brigitte Nicolas²⁶, Francesca Bagnasco²⁶, Marina Benvenuto²⁶, Anna Aulicino²⁶, Luca Laudisi²⁶, Vera Araujo-Soares¹¹, Tomas Kepak⁹, Katerina Kepakova⁹, Hana Hrstkova⁹, Viera Bajciova⁹, Marta Holikova⁹, Lucie Strublova⁹, Anne Uyttebroeck⁷, Marleen Renard²⁷, Sandra Jacobs⁷, Heidi Segers⁷, Monique Van Helvoirt²⁷, Jeanette Falck Winther²⁸, Luzius Mader²⁹, Line Elmerdahl Frederiksen³⁰, Elisabeth Anne Wreford Andersen³¹, Gisela Michel³², Stefan Boes³², Katharina Roser³², Jacqueline Loonen¹⁴, Rosella Hermens³³, Irene Göttgens³⁴, Eline Bouwman¹⁴, Iridi Stollman¹⁴, Adriaan Penson¹⁴, Roderick Skinner³⁵, Morven C Brown³⁶, Samira Essiaf³⁷, Anne Blondeel³⁷, William Sciberras³⁷, Joke Korevaar¹⁹, Mieke Rijken²², Anita Kienesberger¹⁸, Jaap Den Hartogh¹⁸, Hannah Gsell¹⁸, Carina Schneider¹⁸, Jaap den Hartogh¹⁸, Edit Bardi³⁸, Jeroen Te Dorsthorst³⁸

Affiliations

¹ Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands. Electronic address: [email protected].
² Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands; PanCare, Jacobus Bellamylaan 16, Bussum, 1401 AZ, the Netherlands.
³ Lund University, Skane University Hospital, Department of Clinical Sciences Lund, Paediatrics, Lasarettsgatan 40, Lund, 221 85, Sweden.
⁴ Childhood Cancer Research Group, Danish Cancer Society Research Centre, Strandboulevarden 49 Copenhagen, 2100, Denmark; Department of Clinical Medicine, Faculty of Health, Aarhus University and Aarhus University Hospital, Palle Juul-Jensens Boulevard 82, Aarhus, 8200, Denmark.
⁵ University of Lucerne, Department of Health Sciences and Medicine, Frohburgstrasse 3, P.O. Box 4466, Lucerne, 6002, Switzerland.
⁶ Epidemiology and Biostatistics Unit and DOPO Clinic, IRCCS Istituto Giannina Gaslini, Via G. Gaslini, 5, Genoa, 16147, Italy.
⁷ Department of Oncology, Paediatric Oncology, KU Leuven, Department of Paediatric Haematology and Oncology, University Hospitals Leuven, Herestraat 49, Leuven, 3000, Belgium.
⁸ Pintail, Limited, 77 Springhill Avenue, Blackrock, Dublin, Ireland.
⁹ International Clinical Research Centre (FNUSA-ICRC) at St. Anne's University Hospital, Masaryk University, Pekařská 53, Brno, 656 91, Czech Republic.
¹⁰ Lund University, Skane University Hospital, Department of Clinical Sciences Lund, Oncology, Lasarettsgatan 40, Lund, 221 85, Sweden.
¹¹ Department of Health Technology & Services Research, Technical Medical Centre, University of Twente, P.O. Box 217, Enschede, 7500 AE, the Netherlands.
¹² St Anna Children's Hospital, Kinderspitalgasse 6, Vienna, 1090, Austria; Kepler University Clinic, Department of Pediatric and Adolescent Medicine, Krankenhausstraße 26-30, Linz, 4020, Austria.
¹³ European Society for Paediatric Oncology, C/o BLSI, Clos Chapelle-aux-Champs 30, Bte 1.30.30, Brussels, BE-1200, Belgium.
¹⁴ Radboud University Medical Centre, Radboud Institute for Health Sciences, Department of Hematology, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, the Netherlands.
¹⁵ Population Health Sciences Institute, Newcastle University, Sir James Spence Institute, Royal Victoria Infirmary, Queen Victoria Road, Newcastle Upon Tyne, NE1 4LP, United Kingdom; Newcastle University Centre for Cancer, Wolfson Childhood Cancer Research Centre, Herschel Building, Brewery Lane, Newcastle Upon Tyne, NE1 7RU, United Kingdom.
¹⁶ Childhood Cancer Research Group, Danish Cancer Society Research Centre, Strandboulevarden 49 Copenhagen, 2100, Denmark.
¹⁷ Radboud University Medical Centre, Radboud Institute for Health Sciences, Scientific Institute for Quality of Healthcare (IQ Healthcare) Geert Grooteplein 21, Nijmegen, 6525 EZ, the Netherlands.
¹⁸ Childhood Cancer International Europe, Servitengasse 5/16, Vienna, 1090, Austria.
¹⁹ Netherlands Institute for Health Services Research (Nivel), P.O. Box 1568, Utrecht, 3500 BN, the Netherlands.
²⁰ Childhood Cancer Research Group, Danish Cancer Society Research Centre, Strandboulevarden 49 Copenhagen, 2100, Denmark; Institute of Social and Preventive Medicine, University of Bern, Mittelstrasse 43, Bern, 3012, Switzerland.
²¹ Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands.
²² Netherlands Institute for Health Services Research (Nivel), P.O. Box 1568, Utrecht, 3500 BN, the Netherlands; University of Eastern Finland, Department of Health and Social Management, P.O. Box 1627, Kuopio, FI-70211, Finland.
²³ Newcastle University Centre for Cancer, Wolfson Childhood Cancer Research Centre, Herschel Building, Brewery Lane, Newcastle Upon Tyne, NE1 7RU, United Kingdom; Great North Children's Hospital, Royal Victoria Infirmary, Queen Victoria Road, Newcastle Upon Tyne, NE1 4 LP, United Kingdom; Translational and Clinical Research Institute, Wolfson Childhood Cancer Research Centre, Herschel Building, Brewery Lane, Newcastle Upon Tyne, NE1 7RU, United Kingdom.
²⁴ Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands; Department of Paediatrics, Emma Children's Hospital, Amsterdam UMC, Meibergdreef 9, Amsterdam, 1105 AZ, the Netherlands; Faculty of Medicine, Utrecht University and Utrecht Medical Centre, Universiteitsweg 98, Utrecht, 3584 CG, the Netherlands.
²⁵ Princess Máxima Centre for Paediatric Oncology, Heidelberglaan 25, Utrecht, 3584 CS, the Netherlands; Department of Paediatrics, Emma Children's Hospital, Amsterdam UMC, Meibergdreef 9, Amsterdam, 1105 AZ, the Netherlands; Faculty of Medicine, Utrecht University and Utrecht Medical Centre, Universiteitsweg 98, 3584 CG Utrecht, the Netherlands.
²⁶ Epidemiology and Biostatistics Unit and DOPO clinic, IRCCS Istituto Giannina Gaslini, Via G. Gaslini, 5, Genoa, 16147, Italy.
²⁷ Department of Paediatric Haematology and Oncology, University Hospitals Leuven, Herestraat 49, Leuven, 3000, Belgium.
²⁸ Childhood Cancer Research Group, Danish Cancer Society Research Centre, Strandboulevarden 49, 2100 Copenhagen, Denmark; Department of Clinical Medicine, Faculty of Health, Aarhus University and Aarhus University Hospital, Palle Juul-Jensens Boulevard 82, Aarhus, 8200, Denmark.
²⁹ Childhood Cancer Research Group, Danish Cancer Society Research Centre, Strandboulevarden 49, 2100 Copenhagen, Denmark; Institute of Social and Preventive Medicine, University of Bern, Mittelstrasse 43, Bern, 3012, Switzerland.
³⁰ Childhood Cancer Research Group, Danish Cancer Society Research Centre, Strandboulevarden 49, 2100 Copenhagen, Denmark.
³¹ Statistics and Data Analysis, Danish Cancer Society Research Centre, Strandboulevarden 49, Copenhagen, 2100, Denmark.
³² University of Lucerne, Department of Health Sciences and Medicine, Frohburgstrasse 3, P.O. Box 4466, 6002 Lucerne, Switzerland.
³³ Radboud University Medical Centre, Radboud Institute for Health Sciences, Scientific Institute for Quality of Healthcare (IQ Healthcare), Geert Grooteplein 21, Nijmegen, 6525 EZ, the Netherlands.
³⁴ Radboud University Medical Centre, Radboud Institute for Health Sciences, Department of Primary and Community Care, Geert Grooteplein 21, Nijmegen, 6525 EZ, the Netherlands.
³⁵ Newcastle University Centre for Cancer, Wolfson Childhood Cancer Research Centre, Herschel Building, Brewery Lane, Newcastle upon Tyne, NE1 7RU, United Kingdom; Great North Children's Hospital, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne, NE1 4 LP, United Kingdom; Translational and Clinical Research Institute, Wolfson Childhood Cancer Research Centre, Herschel Building, Brewery Lane, Newcastle upon Tyne, NE1 7RU, United Kingdom.
³⁶ Newcastle University Centre for Cancer, Wolfson Childhood Cancer Research Centre, Herschel Building, Brewery Lane, Newcastle upon Tyne, NE1 7RU, United Kingdom; Population Health Sciences Institute, Newcastle University, Sir James Spence Institute, Royal Victoria Infirmary, Queen Victoria Road, Newcastle upon Tyne, NE1 4 LP, United Kingdom.
³⁷ European Society for Paediatric Oncology, c/o BLSI, Clos Chapelle-aux-Champs 30, Bte 1.30.30, Brussels, BE-1200, Belgium.
³⁸ PanCare, Jacobus Bellamylaan 16, Bussum, 1401 AZ, the Netherlands.

PMID: 34153717
DOI: 10.1016/j.ejca.2021.05.030

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: Aftercare; Cancer survivors; Decision-making; Empowerment; Neoplasms; Patient-centred care; Practice guideline; Quality of life; Shared; Survivorship.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Cancer Survivors / statistics & numerical data*
Caregivers / economics*
Caregivers / psychology*
Europe
Humans
Quality of Health Care
Survivorship*