患有神经内分泌肿瘤(NENs)的人面临着许多挑战,包括延迟诊断,医疗保健专业人员对癌症的认识低,多学科护理和专家中心的访问有限。我们为英格兰的NENs患者开发了第一个患者护理途径,以指导疾病管理并帮助克服这些障碍。该途径分两个阶段发展。首先,对文献进行了务实的回顾,用于开发患者护理路径草案。第二,然后在与精心挑选的专家利益相关者进行半结构化访谈后,对路径草案进行了更新。在每个阶段之后,该途径是在多学科之间讨论的,专家咨询小组(由作者和副首席运营官组成,西萨福克NHS基金会信托),他们就理想的护理途径达成了共识。本文介绍了本研究的成果。该途径确定了护理的关键障碍,并强调了如何解决这些障碍,许多发现与英国其他地区和国际观众有关。在英格兰,NENs的发病率和患病率正在增加,加剧了诊断和疾病管理中现有的不平等现象。在NHS英格兰内有效整合此途径将有助于达到最佳状态,为所有有NENs的人提供公平的护理,在全国现有的多学科专家团队中应该是可行的。
People with neuroendocrine neoplasms (NENs) face a multitude of challenges, including delayed diagnosis, low awareness of the cancer among healthcare professionals and limited access to multidisciplinary care and expert centres. We have developed the first patient care pathway for people living with NENs in England to guide disease management and help overcome these barriers. The pathway was developed in two phases. First, a pragmatic review of the literature was conducted, which was used to develop a draft patient care pathway. Second, the draft pathway was then updated following semi-structured interviews with carefully selected expert stakeholders. After each phase, the pathway was discussed among a multidisciplinary, expert advisory group (which comprised the authors and the Deputy Chief Operating Officer, West Suffolk NHS Foundation Trust), who reached a
consensus on the ideal care pathway. This article presents the outputs of this research. The pathway identified key barriers to care and highlighted how these may be addressed, with many of the findings relevant to the rest of the UK and international audiences. NENs are increasing in incidence and prevalence in England, compounding pre-existing inequities in diagnosis and disease management. Effective integration of this pathway within NHS England will help achieve optimal, equitable care provision for all people with NENs, and should be feasible within the existing expert multidisciplinary teams across the country.