Endocrine Abstracts

Background: The exponential growth of social media over the last decade has provided new, diverse and accessible ways in which people can share and receive information. Its rapid rise has attracted researchers and professionals of various disciplines, aiming to capitalise on this relatively new phenomenon. In this qualitative study we utilised social media to conduct research on psychosocial aspect of acromegaly. Facebook currently has 845 million users. Acromegaly, with a prevalence of approximately 60/million, was used as an exemplar of a relatively rare disease associated with adverse physical and psychological effects.

Method: A Facebook account was created and 10 international acromegaly Facebook groups contacted. In-depth semi-structured interviews were conducted using Facebook chat, messenger or Skype, and a focus group established on Facebook. Four groups responded and in addition to nine individuals who participated in a focus group, eigth agreed to an in-depth semi-structured interview of which five were completed.

Results: Analysis of the data revealed various emerging themes each classed under one of three super-ordinate themes: i) psychological impact ii) social impact (3) implications for practise. Changes in physical appearance and low mood associated with the acquisition of disfigurement later in life were the predominant factors responsible for depression, social withdrawal and adverse effects on occupation and relationships.

Conclusion: Using social media to recruit focus groups is a very rapid and economical way to gain potentially important insights into the social impact of rare diseases such as acromegaly.