Patient Perspectives on the Impact of Appearance and Weight Changes Attributed to Systemic Glucocorticoid Treatment of Rheumatic Diseases

Objectives: To explore patients' perspectives on the impact of appearance changes attributed to glucocorticoid treatment.

Methods: We conducted a secondary inductive thematic analysis of the 'Steroid PRO' semi-structured interviews with patients with rheumatic conditions receiving glucocorticoids in the UK, USA, and Australia.

Results: Sixty patient interviews were analysed. Age 26-84 years; 39 (65%) females, patients with: systemic vasculitis (n = 19), inflammatory arthritis (n = 14), crystal arthropathy (n = 2), connective tissue disorders (n = 16), other/multiple (n = 9). In addition to participants expressing the need for more information and support, three over-arching themes were identified: i) Societal norms:  "I think my main concern, particularly being female, was the weight gain that the steroids had" (female aged 26-30). These included real or perceived expectations to which participants felt pressure to conform, which were sustained through interactions with others. ii) Harms to mental health and sense of self:  "It makes you feel down. It makes you feel depressed. You don't want to socialise because you're not you" (male aged 61-65). Glucocorticoids were described as making participants 'not look like' themselves, associated with changes in mood and self-confidence. iii) Burden of adjustments:  "I have a wardrobe right now that goes four different sizes" (female aged 51-55). Other adjustments related to diet, exercise, work, hobbies, activities of daily living, and key life events.

Conclusion: Patients attribute a variety of impacts on their quality of life to glucocorticoid-related appearance changes. We suggest ways to meet patients' needs for information and support, which can be developed through further work.