P186 Impact of glucocorticoids on appearance and sense of self in rheumatic diseases
Authors: Lax Stephanie J , Dures Emma , Bridgewater Susan , Silverthorne Christine , Lowndes Vivien , Richards Pamela , Dawson Jill , Hill Catherine , Goodman Susan , Mackie Sarah L , Ndosi Mwidimi E , Pearce Fiona A , Robson Joanna 
Published: April 2024

Background/Aims

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

Methods

We conducted a secondary analysis of semi-structured interviews with patients with rheumatic conditions receiving glucocorticoids in the UK, USA, and Australia. Interview data were analysed inductively to develop preliminary individual and overarching themes.

Results

60 patient interviews were analysed. Patients ranged from 26-84 years, and 39 (65%) were female. Patients had diagnoses of systemic vasculitis (n = 19), inflammatory arthritis (n = 14), crystal arthropathy (n = 2), connective tissue disorders (n = 16), or other/multiple (n = 9).

Interviews contained rich data on how appearance changes impacted health-related quality of life. Three preliminary overarching themes were identified. i) Societal influences: participants reported pressure to conform to cultural and societal ideals: “I think with the weight gain it was more of an emotional response. [⋯] There's a part of you that's thin is better. So, I think that impacted me the most, just because of that aspect of what others thought of me…” (Female [Mixed/Multiple ethnicity] aged 27, granulomatosis with polyangiitis [Australia]) and “…within a week my dad had seen me and said, “Gosh you’ve put on a lot of weight”. Obviously, that’s not what I want to hear [⋯] but I think it was just pure shock." (White female aged 40, eosinophilic granulomatosis with polyangiitis [UK])”.ii)?Impact on mental health and sense of self: glucocorticoids were often described as making participants ‘not look like’ themselves, associated with changes in mood, self-confidence, and reluctance to socialise: “It makes you feel down. It makes you feel depressed. You don't want to socialise because you're not you.” (White male aged 65, inflammatory myositis [Australia]) and “Yeah, that’s it and it will hopefully look nice, which is a really vain thing to think about isn’t it, but it does really affect [⋯] how you feel and kind of your state of mind and things…” (White female aged 39, Takayasu arteritis [UK]). iii) Burden of adjustments included dieting, purchasing additional clothing sizes, working from home, discontinuing hobbies, and postponing key life events: "I have a wardrobe right now that goes four different sizes as my weight goes up and down and up and down." (White female aged 55, systemic lupus erythematosus [USA]) and "Well, with the high dose of prednisone since I gained weight, I get really tired if I try to do like exercise or something. And I used to be very sporty, so that just completely changed." (Hispanic female aged 29, systemic lupus erythematosus [USA]).

Conclusion

Patients attribute a variety of impacts on their health-related quality of life to glucocorticoid-related appearance changes and report a burden of adjustments above management of their chronic rheumatic condition. Further work is required to establish ways to mitigate these through improved information provision and support.

Disclosure

S.J. Lax: Grants/research support; post funded by National Institute for Health and Care Research Advanced Fellowship [grant number NIHR300863]. E. Dures: Grants/research support; recipient of grants from Above & Beyond Bristol Hospitals Charity, UWE Bristol, Vifor Pharma, National Institute for Health and Care Research (Research for Patient Benefit) and Sanofi. S. Bridgewater: None. C. Silverthorne: None. V. Lowndes: None. P. Richards: None. J. Dawson: None. C. Hill: Grants/research support; recipient of an Australian Rheumatology Association Project Grant, administered by Arthritis Australia. S. Goodman: None. S.L. Mackie: None. M.E. Ndosi: None. F.A. Pearce: Grants/research support; recipient of a National Institute for Health and Care Research Advanced Fellowship [grant number NIHR300863] and a grant from Vifor pharma. J. Robson: Consultancies; consultancy and speaking fees from Vifor Pharma. Grants/research support; recipient of grants from Above & Beyond Bristol Hospitals Charity, UWE Bristol, Vifor Pharma, National Institute for Health and Care Research (Research for Patient Benefit) and Sanofi.