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

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Fältnamn	Indikatorer	Metadata
000		06635naa a2200649 4500
001		oai:lup.lub.lu.se:ddd1468f-5e34-4df7-b53b-7fedac22ba3a
003		SwePub
008		230102s2022 \| \|\|\|\|\|\|\|\|\|\|\|000 \|\|eng\|
024	7	a https://lup.lub.lu.se/record/ddd1468f-5e34-4df7-b53b-7fedac22ba3a2 URI
024	7	a https://doi.org/10.1136/bmjopen-2022-0631342 DOI
040		a (SwePub)lu
041		a engb eng
042		9 SwePub
072	7	a art2 swepub-publicationtype
072	7	a ref2 swepub-contenttype
100	1	a Van Kalsbeek, Rebecca J.u Princess Maxima Center for Pediatric Oncology/Hematology4 aut
245	1 0	a 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
264		c 2022-11-17
264	1	b BMJ,c 2022
520		a Long-term survival after childhood cancer often comes at the expense of late, adverse health conditions. However, survivorship care is frequently not available for adult survivors in Europe. The PanCareFollowUp Consortium therefore developed the PanCareFollowUp Care Intervention, an innovative person-centred survivorship care model based on experiences in the Netherlands. This paper describes the protocol of the prospective cohort study (Care Study) to evaluate the feasibility and the health economic, clinical and patient-reported outcomes of implementing PanCareFollowUp Care as usual care in four European countries. Methods and analysis In this prospective, longitudinal cohort study with at least 6 months of follow-up, 800 childhood cancer survivors will receive the PanCareFollowUp Care Intervention across four study sites in Belgium, Czech Republic, Italy and Sweden, representing different healthcare systems. The PanCareFollowUp Care Intervention will be evaluated according to the Reach, Effectiveness, Adoption, Implementation and Maintenance framework. Clinical and research data are collected through questionnaires, a clinic visit for multiple medical assessments and a follow-up call. The primary outcome is empowerment, assessed with the Health Education Impact Questionnaire. A central data centre will perform quality checks, data cleaning and data validation, and provide support in data analysis. Multilevel models will be used for repeated outcome measures, with subgroup analysis, for example, by study site, attained age, sex or diagnosis. Ethics and dissemination This study will be conducted in accordance with the guidelines of Good Clinical Practice and the Declaration of Helsinki. The study protocol has been reviewed and approved by all relevant ethics committees. The evidence and insights gained by this study will be summarised in a Replication Manual, also including the tools required to implement the PanCareFollowUp Care Intervention in other countries. This Replication Manual will become freely available through PanCare and will be disseminated through policy and press releases. Trial registration number Netherlands Trial Register (NL8918; https://www.trialregister.nl/trial/8918).
650	7	a MEDICIN OCH HÄLSOVETENSKAPx Hälsovetenskapx Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi0 (SwePub)303012 hsv//swe
650	7	a MEDICAL AND HEALTH SCIENCESx Health Sciencesx Health Care Service and Management, Health Policy and Services and Health Economy0 (SwePub)303012 hsv//eng
653		a Health economics
653		a International health services
653		a Organisation of health services
653		a Paediatric oncology
700	1	a Korevaar, Joke C.u Netherlands Institute for Health Services Research4 aut
700	1	a Rijken, Miekeu Netherlands Institute for Health Services Research,University of Eastern Finland4 aut
700	1	a Haupt, Riccardou Gaslini Children's Hospital4 aut
700	1	a Muraca, Monicau Gaslini Children's Hospital4 aut
700	1	a Kepák, Tomášu St. Anne's University Hospital Brno4 aut
700	1	a Kepakova, Katerinau St. Anne's University Hospital Brno4 aut
700	1	a Blondeel, Anne4 aut
700	1	a Boes, Stefanu University of Lucerne4 aut
700	1	a Frederiksen, Line E.u Danish Cancer Society4 aut
700	1	a Essiaf, Samira4 aut
700	1	a Winther, Jeanette F.u Danish Cancer Society,Aarhus University Hospital4 aut
700	1	a Hermens, Rosella P.M.G.4 aut
700	1	a Kienesberger, Anita4 aut
700	1	a Loonen, Jacqueline J.u Radboud University Medical Center4 aut
700	1	a Michel, Giselau University of Lucerne4 aut
700	1	a Mulder, Renée L.u Princess Maxima Center for Pediatric Oncology/Hematology4 aut
700	1	a O'Brien, Kylie B.4 aut
700	1	a Van Der Pal, Helena J.H.u Princess Maxima Center for Pediatric Oncology/Hematology4 aut
700	1	a Pluijm, Saskia M.F.u Princess Maxima Center for Pediatric Oncology/Hematology4 aut
700	1	a Roser, Katharinau University of Lucerne4 aut
700	1	a Skinner, Rodericku University of Newcastle upon Tyne,Royal Victoria Infirmary4 aut
700	1	a Renard, Marleenu University Hospitals Leuven4 aut
700	1	a Uyttebroeck, Anneu University Hospitals Leuven4 aut
700	1	a Follin, Ceciliau Lund University,Lunds universitet,Sena effekter efter barncancerbehandling,Forskargrupper vid Lunds universitet,LUCC: Lunds universitets cancercentrum,Övriga starka forskningsmiljöer,Late effects after childhood cancer treatment,Lund University Research Groups,LUCC: Lund University Cancer Centre,Other Strong Research Environments,Skåne University Hospital4 aut0 (Swepub:lu)med-cfn
700	1	a Hjorth, Larsu Lund University,Lunds universitet,Sena effekter efter barncancerbehandling,Forskargrupper vid Lunds universitet,LUCC: Lunds universitets cancercentrum,Övriga starka forskningsmiljöer,Late effects after childhood cancer treatment,Lund University Research Groups,LUCC: Lund University Cancer Centre,Other Strong Research Environments,Skåne University Hospital4 aut0 (Swepub:lu)pedi-lhj
700	1	a Kremer, Leontien C.M.u Princess Maxima Center for Pediatric Oncology/Hematology,Academic Medical Center of University of Amsterdam (AMC)4 aut
710	2	a Princess Maxima Center for Pediatric Oncology/Hematologyb Netherlands Institute for Health Services Research4 org
773	0	t BMJ Opend : BMJg 12:11q 12:11x 2044-6055
856	4	u http://dx.doi.org/10.1136/bmjopen-2022-063134x freey FULLTEXT
856	4 8	u https://lup.lub.lu.se/record/ddd1468f-5e34-4df7-b53b-7fedac22ba3a
856	4 8	u https://doi.org/10.1136/bmjopen-2022-063134

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