Abstract
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.