International Neuroendocrine Cancer Alliance, Boston, MA, USA.
Neuroendocrine Cancer UK, Leamington Spa, UK.
Curr Oncol Rep. 2021 Mar 22;23(5):53. doi: 10.1007/s11912-021-01046-6.
The purpose of this review is to establish the role patient support groups play in NENs.
Published data on the role and work done by these groups is extremely sparse, so the review references publications in the wider cancer advocacy context. For the purposes of the review, a survey was carried out among the members of a global umbrella organization to ascertain the level of activities undertaken in support of the NEN patient community. The concept of "support groups" has changed significantly, as these groups have evolved from patient peer-to-peer support provision to a strategic focus on improving awareness and education among all stakeholders, generating patient evidence to influence policies for access to optimal diagnostics, treatment, and care, and setting the research agenda. Today, NEN patient organizations have an instrumental role of catalysts of change across the healthcare spectrum-especially relevant in a setting of less common and not well-understood diseases, where clear pathways and guidelines are still a challenge.
本文旨在确定患者支持团体在神经内分泌肿瘤（NENs）中的作用。
关于这些团体的作用和所做工作的已发表数据极为稀少，因此本综述参考了更广泛的癌症宣传背景下的出版物。为了进行综述，对一个全球性伞式组织的成员进行了调查，以确定为支持 NEN 患者群体开展的活动水平。“支持团体”的概念发生了重大变化，因为这些团体已经从患者之间的支持提供演变为战略重点，旨在提高所有利益相关者的意识和教育水平，生成患者证据以影响获取最佳诊断、治疗和护理的政策，并制定研究议程。如今，NEN 患者组织在医疗保健领域发挥着变革推动者的作用——在罕见且了解甚少的疾病中尤其相关，在这些疾病中，明确的途径和指南仍然是一个挑战。
