Hidden disability: a study of the psychosocial impact of living with pituitary conditions

Abstract

Background: Pituitary patients often experience psychosocial symptoms associated with their condition. Aims: To explore the condition management experiences of pituitary patients and their psychosocial symptoms and to explore the impact of these on quality of life. Methods: A sample of 748 individuals aged 18 to more than 65 years) completed a questionnaire relating to quality of life and the psychosocial impact of pituitary conditions. Findings: Analysis of the qualitative sections using content analysis identified four themes: social isolation, emotional and behavioural issues, appearance distress and physical and cognitive effects including fatigue and pain. An overarching theme of hidden disability emerged. Conclusion: The study identified multiple biopsychosocial factors that impact quality of life, with symptoms not visible to others most likely to impact negatively. Nurses are well placed to provide support and information to patients about the possible psychosocial impact of pituitary conditions to enable positive adjustment.