Is rare cancer care organized at national health system level? Multiple case study in six EU countries

Background: As a system of European Reference Networks (ERNs) emerges, we aimed to shed light on the processes through which reference centres (RCs) for rare cancers are embedded in national health systems, and to formulate hypotheses about which national care models favour equitable access for pati...

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Autores: Prades, Joan, Trama, Annalisa, Casali, Paolo Giovanni, Emile, Jean-François, Gaspar, Nathalie, Janavicius, Ramunas, Janciauskiene, Rasa, Karjalainen, Sakari, Kopeckova, Katerina, Pylkkänen, Liisa, Svoboda, Marek, Borràs Andrés, Josep Maria
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2022
País:España
Institución:Universidad de Barcelona
Repositorio:Dipòsit Digital de la UB
OAI Identifier:oai:diposit.ub.edu:2445/191296
Acceso en línea:https://hdl.handle.net/2445/191296
Access Level:acceso abierto
Palabra clave:Càncer
Malalties rares
Sarcoma
Assistència sanitària
Cancer
Rare diseases
Medical care
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spelling Is rare cancer care organized at national health system level? Multiple case study in six EU countriesPrades, JoanTrama, AnnalisaCasali, Paolo GiovanniEmile, Jean-FrançoisGaspar, NathalieJanavicius, RamunasJanciauskiene, RasaKarjalainen, SakariKopeckova, KaterinaPylkkänen, LiisaSvoboda, MarekBorràs Andrés, Josep MariaCàncerMalalties raresSarcomaAssistència sanitàriaCancerRare diseasesSarcomaMedical careBackground: As a system of European Reference Networks (ERNs) emerges, we aimed to shed light on the processes through which reference centres (RCs) for rare cancers are embedded in national health systems, and to formulate hypotheses about which national care models favour equitable access for patients. Methods We used a multiple-case-study design based on the experiences of Czechia, Finland, France, Italy, Lithuania and Spain. Using sarcoma as an example of rare cancer, 52 semi-structured interviews were conducted during six on-site visits. Results The comparative analysis showed substantial heterogeneity in the processes for formalising RCs status and in their levels of integration in the different health systems, but two models, namely, the centre-based and the network-based, can be envisaged at national level. RCs for rare cancers were legally established only in France and Spain. Expert clinicians cooperate in a structured way, using network mechanisms, in France and Italy, and these countries, plus Finland and Lithuania, had a referral system to facilitate patients' access from non-expert centres to RCs. Comparative analysis of the cases enabled the identification of key healthcare planning principles in instituting RCs at the national level, among them the need to stipulate the involvement of expert professionals in steering the rare cancer care system.Oxford University Press2022info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://hdl.handle.net/2445/191296Articles publicats en revistes (Ciències Clíniques)reponame:Dipòsit Digital de la UBinstname:Universidad de BarcelonaInglésReproducció del document publicat a: https://doi.org/10.1093/eurpub/ckac166European Journal of Public Health, 2022, vol. 32, num. 6, p. 852-857https://doi.org/10.1093/eurpub/ckac166cc by-nc (c) Prades, Joan et al., 2022https://creativecommons.org/licenses/by-nc/4.0/info:eu-repo/semantics/openAccessoai:diposit.ub.edu:2445/1912962026-05-27T06:46:51Z
dc.title.none.fl_str_mv Is rare cancer care organized at national health system level? Multiple case study in six EU countries
title Is rare cancer care organized at national health system level? Multiple case study in six EU countries
spellingShingle Is rare cancer care organized at national health system level? Multiple case study in six EU countries
Prades, Joan
Càncer
Malalties rares
Sarcoma
Assistència sanitària
Cancer
Rare diseases
Sarcoma
Medical care
title_short Is rare cancer care organized at national health system level? Multiple case study in six EU countries
title_full Is rare cancer care organized at national health system level? Multiple case study in six EU countries
title_fullStr Is rare cancer care organized at national health system level? Multiple case study in six EU countries
title_full_unstemmed Is rare cancer care organized at national health system level? Multiple case study in six EU countries
title_sort Is rare cancer care organized at national health system level? Multiple case study in six EU countries
dc.creator.none.fl_str_mv Prades, Joan
Trama, Annalisa
Casali, Paolo Giovanni
Emile, Jean-François
Gaspar, Nathalie
Janavicius, Ramunas
Janciauskiene, Rasa
Karjalainen, Sakari
Kopeckova, Katerina
Pylkkänen, Liisa
Svoboda, Marek
Borràs Andrés, Josep Maria
author Prades, Joan
author_facet Prades, Joan
Trama, Annalisa
Casali, Paolo Giovanni
Emile, Jean-François
Gaspar, Nathalie
Janavicius, Ramunas
Janciauskiene, Rasa
Karjalainen, Sakari
Kopeckova, Katerina
Pylkkänen, Liisa
Svoboda, Marek
Borràs Andrés, Josep Maria
author_role author
author2 Trama, Annalisa
Casali, Paolo Giovanni
Emile, Jean-François
Gaspar, Nathalie
Janavicius, Ramunas
Janciauskiene, Rasa
Karjalainen, Sakari
Kopeckova, Katerina
Pylkkänen, Liisa
Svoboda, Marek
Borràs Andrés, Josep Maria
author2_role author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv Càncer
Malalties rares
Sarcoma
Assistència sanitària
Cancer
Rare diseases
Sarcoma
Medical care
topic Càncer
Malalties rares
Sarcoma
Assistència sanitària
Cancer
Rare diseases
Sarcoma
Medical care
description Background: As a system of European Reference Networks (ERNs) emerges, we aimed to shed light on the processes through which reference centres (RCs) for rare cancers are embedded in national health systems, and to formulate hypotheses about which national care models favour equitable access for patients. Methods We used a multiple-case-study design based on the experiences of Czechia, Finland, France, Italy, Lithuania and Spain. Using sarcoma as an example of rare cancer, 52 semi-structured interviews were conducted during six on-site visits. Results The comparative analysis showed substantial heterogeneity in the processes for formalising RCs status and in their levels of integration in the different health systems, but two models, namely, the centre-based and the network-based, can be envisaged at national level. RCs for rare cancers were legally established only in France and Spain. Expert clinicians cooperate in a structured way, using network mechanisms, in France and Italy, and these countries, plus Finland and Lithuania, had a referral system to facilitate patients' access from non-expert centres to RCs. Comparative analysis of the cases enabled the identification of key healthcare planning principles in instituting RCs at the national level, among them the need to stipulate the involvement of expert professionals in steering the rare cancer care system.
publishDate 2022
dc.date.none.fl_str_mv 2022
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://hdl.handle.net/2445/191296
url https://hdl.handle.net/2445/191296
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Reproducció del document publicat a: https://doi.org/10.1093/eurpub/ckac166
European Journal of Public Health, 2022, vol. 32, num. 6, p. 852-857
https://doi.org/10.1093/eurpub/ckac166
dc.rights.none.fl_str_mv cc by-nc (c) Prades, Joan et al., 2022
https://creativecommons.org/licenses/by-nc/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv cc by-nc (c) Prades, Joan et al., 2022
https://creativecommons.org/licenses/by-nc/4.0/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.publisher.none.fl_str_mv Oxford University Press
publisher.none.fl_str_mv Oxford University Press
dc.source.none.fl_str_mv Articles publicats en revistes (Ciències Clíniques)
reponame:Dipòsit Digital de la UB
instname:Universidad de Barcelona
instname_str Universidad de Barcelona
reponame_str Dipòsit Digital de la UB
collection Dipòsit Digital de la UB
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15,301603

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