Equipe Evaluation Médicale et Sarcomes, Centre Léon Bérard, Université Claude Bernard Lyon 1, HESPER EA 7425, 69008 Lyon, France.
Institut Bergonié, RRePS Network, 33000 Bordeaux, France.
Int J Environ Res Public Health. 2018 Oct 10;15(10):2204. doi: 10.3390/ijerph15102204.
Rare cancer patients face lower survival and experience delays in diagnosis and therapeutic mismanagement. Considering the specificities of rare cancers, referral networks have been implemented in France to improve the management and survival of patients. The IGéAS research program aims to assess the networks' ability to reduce inequalities. Data analysis of the IGéAS cohort ( = 20,590, sarcoma diagnosed between 2011 and 2014) by gathering medical data and geographical index will identify risk factors associated with the belated access to expertise or with no access to expertise. Intermediate results show that referral networks give sarcoma patients access to sarcoma expertise despite the remoteness of some of them. Regional expert centers mostly receive requests from within their area while national referral centers receive requests from the whole country. Delays in the access to expertise may be reduced by making outside practitioners more sensitive to the issues of rare cancers. The perception and involvement of outside practitioners in this device will be assessed using a qualitative survey. All the results are discussed and will contribute to design guidelines to improve early access to expertise and reduce inequalities. Results of the IGéAS research program may contribute to the assessment of referral sarcoma networks and provide some useful lessons to improve cancer care management.
罕见癌症患者的生存率较低,且在诊断和治疗管理方面存在延误。考虑到罕见癌症的特殊性,法国已经建立了转诊网络,以改善患者的管理和生存率。IGéAS 研究计划旨在评估网络减少不平等的能力。通过收集医疗数据和地理指数,对 IGéAS 队列(= 20590 例,2011 年至 2014 年间诊断为肉瘤)进行数据分析,将确定与延迟获得专业知识或无法获得专业知识相关的风险因素。中期结果表明,转诊网络使肉瘤患者能够获得肉瘤专业知识,尽管其中一些患者的地理位置偏远。区域专家中心主要接收本地区的请求,而国家转诊中心则接收来自全国各地的请求。通过提高外部从业者对罕见癌症问题的敏感性,可以减少获得专业知识的延迟。将使用定性调查评估外部从业者对该设备的认知和参与度。所有结果都将进行讨论,并有助于制定指导方针,以改善早期获得专业知识和减少不平等。IGéAS 研究计划的结果可能有助于评估转诊肉瘤网络,并为改善癌症护理管理提供一些有益的经验教训。