Lax Stephanie J, Dures Emma, Bridgewater Susan, Silverthorne Christine A, Lowndes Vivien, Richards Pam, Ferreira Andreia, Shepherd Michael A, Dawson Jill, Hill Catherine, Goodman Susan, Mackie Sarah L, Ndosi Mwidimi, Pearce Fiona A, Robson Joanna C
Department of Lifespan and Population Health, School of Medicine, University of Nottingham, Nottingham, UK.
School of Health and Social Wellbeing, Centre for Health and Clinical Research, University of the West of England (UWE) Bristol, Bristol, UK.
Rheumatology (Oxford). 2025 Jun 1;64(6):3854-3862. doi: 10.1093/rheumatology/keaf121.
To explore patients' perspectives on the impact of appearance changes attributed to glucocorticoid treatment.
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.
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.
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.
探讨患者对糖皮质激素治疗所致外貌变化影响的看法。
对在英国、美国和澳大利亚接受糖皮质激素治疗的风湿性疾病患者进行的“Steroid PRO”半结构式访谈进行二次归纳主题分析。
分析了60例患者访谈。患者年龄为26 - 84岁；39例（65%）为女性；患者患有系统性血管炎（n = 19）、炎性关节炎（n = 14）、晶体性关节病（n = 2）、结缔组织病（n = 16）或其他/多种疾病（n = 9）。除了参与者表示需要更多信息和支持外，还确定了三个总体主题：（i）社会规范[“我认为我主要关心的，尤其是作为女性，是类固醇导致的体重增加”（26 - 30岁女性）]；这些包括真实的或感知到的期望，参与者感到有压力去 conform，这种压力通过与他人的互动持续存在；（ii）对心理健康和自我认知的损害[“它让你感到沮丧。它让你感到抑郁。你不想社交，因为你不再是你自己了”（61 - 65岁男性）]；糖皮质激素被描述为使参与者“看起来不像”自己，与情绪和自信心的变化有关；（iii）调整负担[“我现在的衣柜里有四种不同尺码的衣服”（51 - 55岁女性）]；其他调整与饮食、运动、工作、爱好、日常生活活动和关键生活事件有关。
患者将与糖皮质激素相关的外貌变化对其生活质量的各种影响归因于此。我们提出了满足患者信息和支持需求的方法，这些方法可通过进一步的工作来完善。
