Patient perspectives on the impact of appearance and weight changes attributed to systemic glucocorticoid treatment of rheumatic diseases

Objective To explore patients’ perspectives on the impact of appearance changes attributed to glucocorticoid treatment.

Methods A secondary inductive thematic analysis was conducted 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. Patient age was 26–84 years; 39 (65%) were female; and the patients had systemic vasculitis (n = 19), inflammatory arthritis (n = 14), crystal arthropathy (n = 2), connective tissue disorders (n = 16) or 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 socialize 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; and (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.