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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
RJ. van Kalsbeek, JC. Korevaar, M. Rijken, R. Haupt, M. Muraca, T. Kepák, K. Kepakova, A. Blondeel, S. Boes, LE. Frederiksen, S. Essiaf, JF. Winther, RPMG. Hermens, A. Kienesberger, JJ. Loonen, G. Michel, RL. Mulder, KB. O'Brien, HJH. van der...
Jazyk angličtina Země Anglie, Velká Británie
Typ dokumentu časopisecké články, práce podpořená grantem
NLK
Directory of Open Access Journals
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- MeSH
- dítě MeSH
- dospělí MeSH
- lidé MeSH
- longitudinální studie MeSH
- nádory * terapie MeSH
- následná péče MeSH
- přežívající onkologičtí pacienti * MeSH
- prospektivní studie MeSH
- studie proveditelnosti MeSH
- Check Tag
- dítě MeSH
- dospělí MeSH
- lidé MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
- Geografické názvy
- Evropa MeSH
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).
Childhood Cancer International Europe Vienna Austria
Childhood Cancer Research Group Danish Cancer Society Research Center Copenhagen Denmark
Department of Clinical Medicine and Faculty of Health Aarhus Universitet Aarhus Denmark
Department of Clinical Sciences Lund Oncology Lund University Skane University Hospital Lund Sweden
Department of Health Sciences and Medicine University of Lucerne Lucerne Switzerland
Department of Hematology Radboudumc Nijmegen The Netherlands
DOPO Clinic Department of Hematology Oncology IRCCS Istituto Giannina Gaslini Genoa Italy
European Society for Pediatric Oncology Brussels Belgium
Netherlands Institute for Health Services Research Utrecht The Netherlands
PanCare Bussum The Netherlands
Pintail Limited Dublin Ireland
Princess Maxima Center for Pediatric Oncology Utrecht The Netherlands
Royal Victoria Infirmary Great North Children's Hospital Newcastle upon Tyne UK
Scientific Institute for Quality of Healthcare Radboudumc Nijmegen The Netherlands
Citace poskytuje Crossref.org
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