Pak Hei Yi Vivian, Lansdown Andrew, Taylor Peter, Rees Dafydd Aled, Davies John Stephen, Hayhurst Caroline
Department of Neurosurgery, University Hospital of Wales, Cardiff, UK.
Cardiff University School of Medicine, Cardiff, UK.
Endocr Connect. 2020 Oct;9(10):971-977. doi: 10.1530/EC-20-0335.
Acromegaly is a rare condition and there is often a long path to diagnosis for many patients. We sought to explore patient's perceptions and understanding of acromegaly, to examine the quality of communication and find gaps in the information provided at diagnosis.
A prospective study using qualitative research methodology and grounded theory. A semi-structured interview was conducted with 18 patients treated for acromegaly in a single tertiary centre and verbatim transcripts were thematically analysed for overarching themes.
Eighteen patients with acromegaly were interviewed. The mean age of participants was 52 (range 30-72). Four overarching themes emerged; (1) Patients rely on online resources to understand acromegaly in the time between diagnosis and tertiary care clinic; (2) There is not enough support available for patients; (3) Patients have a basic understanding of acromegaly and associated conditions, but the long-term impact is underestimated; and (4) Patients initially felt intimidated by the multidisciplinary team panel, but overall found it useful.
Acromegalic patients have a strong need for information at the point of initial diagnosis, in particular online resources and interaction with other experienced patients. Wider dissemination of patient educational resources into primary and secondary care settings may improve overall patient satisfaction, treatment adherence and subsequent health care provider-patient relationships.
肢端肥大症是一种罕见疾病，许多患者往往需要漫长的时间才能确诊。我们试图探究患者对肢端肥大症的认知和理解，检查沟通质量，并找出确诊时所提供信息中的差距。
一项采用定性研究方法和扎根理论的前瞻性研究。对在单一三级中心接受肢端肥大症治疗的18名患者进行了半结构化访谈，并对逐字记录进行了主题分析以找出总体主题。
对18名肢端肥大症患者进行了访谈。参与者的平均年龄为52岁（范围30 - 72岁）。出现了四个总体主题；（1）患者在确诊至三级护理诊所就诊期间依靠在线资源来了解肢端肥大症；（2）患者可获得的支持不足；（3）患者对肢端肥大症及相关病症有基本了解，但低估了其长期影响；（4）患者最初对多学科团队小组感到 intimidated，但总体认为其有用。
肢端肥大症患者在初次诊断时非常需要信息，特别是在线资源以及与其他有经验患者的互动。将患者教育资源更广泛地传播到初级和二级护理环境中可能会提高患者总体满意度、治疗依从性以及随后的医护人员 - 患者关系。
