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.

Autor:	van Kalsbeek RJ; Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands R.J.vanKalsbeek@prinsesmaximacentrum.nl., Korevaar JC; Netherlands Institute for Health Services Research (NIVEL), Utrecht, The Netherlands., Rijken M; Netherlands Institute for Health Services Research (NIVEL), Utrecht, The Netherlands.; Department of Health and Social Care Management, University of Eastern Finland-Kuopio Campus, Kuopio, Finland., Haupt R; DOPO Clinic, Department of Hematology/Oncology, IRCCS Istituto Giannina Gaslini, Genoa, Italy., Muraca M; DOPO Clinic, Department of Hematology/Oncology, IRCCS Istituto Giannina Gaslini, Genoa, Italy., Kepák T; International Clinical Research Centre (FNUSA-ICRC) at St Anne's University Hospital, Masaryk University Faculty of Medicine, Brno, Czech Republic., Kepakova K; International Clinical Research Centre (FNUSA-ICRC) at St Anne's University Hospital, Masaryk University Faculty of Medicine, Brno, Czech Republic., Blondeel A; European Society for Pediatric Oncology (SIOP Europe), Brussels, Belgium., Boes S; Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland., Frederiksen LE; Childhood Cancer Research Group, Danish Cancer Society Research Center, Copenhagen, Denmark., Essiaf S; European Society for Pediatric Oncology (SIOP Europe), Brussels, Belgium., Winther JF; Childhood Cancer Research Group, Danish Cancer Society Research Center, Copenhagen, Denmark.; Department of Clinical Medicine and Faculty of Health, Aarhus Universitet, Aarhus, Denmark., Hermens RPMG; Scientific Institute for Quality of Healthcare (IQ Healthcare), Radboudumc, Nijmegen, The Netherlands., Kienesberger A; Childhood Cancer International Europe, Vienna, Austria., Loonen JJ; Department of Hematology, Radboudumc, Nijmegen, The Netherlands., Michel G; Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland., Mulder RL; Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands., O'Brien KB; Pintail, Limited, Dublin, Ireland., van der Pal HJH; Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.; PanCare, Bussum, The Netherlands., Pluijm SMF; Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands., Roser K; Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland., Skinner R; Wolfson Childhood Cancer Research Centre, Newcastle University Centre for Cancer, Newcastle upon Tyne, UK.; Royal Victoria Infirmary, Great North Children's Hospital, Newcastle upon Tyne, UK., Renard M; Department of Paediatric Haematology and Oncology, KU Leuven, University Hospitals Leuven, Leuven, Belgium., Uyttebroeck A; Department of Paediatric Haematology and Oncology, KU Leuven, University Hospitals Leuven, Leuven, Belgium., Follin C; Department of Clinical Sciences Lund, Oncology, Lund University, Skane University Hospital, Lund, Sweden., Hjorth L; Department of Clinical Sciences Lund, Paediatrics, Lund University, Skane University Hospital, Lund, Sweden., Kremer LCM; Princess Maxima Center for Pediatric Oncology, Utrecht, The Netherlands.; Department of Paediatrics, Emma Children's Hospital, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands.
Jazyk:	angličtina
Zdroj:	BMJ open [BMJ Open] 2022 Nov 17; Vol. 12 (11), pp. e063134. Date of Electronic Publication: 2022 Nov 17.
DOI:	10.1136/bmjopen-2022-063134
Abstrakt:	Introduction: 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). Competing Interests: Competing interests: None declared. (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)
Databáze:	MEDLINE
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