Endocrine Abstracts (2019) 65 P342 | DOI: 10.1530/endoabs.65.P342

More than just tea and cake. The benefit of patient to patient peer support

Lisa M Shepherd1,2 & Samina Kauser1


1University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK; 2University of Birmingham, Birmingham, UK


Introduction: Acromegaly is caused by excessive growth hormone production and elevated IGF-1 levels. Annual incidence rates are reported to be between 0.2 and 1.1 cases/100 000 people, with a prevalence of 2.8–13.7 cases/100 000 people. Small numbers make it difficult to differentiate any differences between sex. A recent increase in the number of females diagnosed with acromegaly at our centre, voiced a need for peer and psychological support. It is known that acromegaly patients suffer from decrease quality of life and increase in anxiety and depression. Peer support has been documented to be of benefit for patients with the same diagnosis.

Method: Evidence of a successful peer support meeting at another endocrine centre motivated us to follow a similar format. Invites were sent to ten female acromegalic patients at our centre inviting them to afternoon tea, organised by two endocrine clinical nurse specialists (CNS). An informal agenda; purpose, ground rules, icebreaker and what brought them to the meeting was set, lasting two hours. Evaluation forms were completed at the end, requesting feedback and how to plan and improve future meetings.

Results: 40% of those invited attend, two also brought a family member, 40% of those unable to attend wished to be included in future meetings, 20% declined. All of the attendees rated the meeting good to excellent. They enjoyed; the informality of the meeting, being able to meet others with the same condition, and felt comfortable to share stories. A group text chat was set up between attendees, allowing continuation of communication. Recommendations: This meeting formed a catalyst for future meetings to be organised by patients with support as required from the endocrine CNS. Thereby, empowering patients and ensuring their identified needs continue to be met.

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