Background: Pituitary conditions have been found to have a significant impact on quality of life. As such it is important that patients have access to support services to ensure their ongoing physical and psychological needs are met. The aim of this study was to explore the experiences of patients with pituitary conditions who are members of the Pituitary Foundation to better understand how the Foundation supports their needs.
Methods: A series of qualitative interviews were conducted with 10 self-selected members of the Pituitary Foundation (four male, six female; aged 37 to 72 years) about their conditions, their needs and their experiences with the Foundation. Data were analysed using thematic analysis. Secondary thematic analysis was conducted on a wider sample of 935 members of the Pituitary Foundation.
Results: The main issue requiring support was the life-changing nature of a pituitary diagnosis. Themes specific to the Pituitary Foundation identified it as an important source of support, although there were issues in finding out about and accessing it. Local support groups were particularly highly valued, but these do not exist in all locales.
Conclusions: Participants clearly valued the Pituitary Foundation as a vital source of support and information when trying to make sense of and manage their pituitary condition. Better training is required for health professionals about pituitary conditions and their long term consequences, and the need to signpost patients to wider services at the point of diagnosis.