“It's Not Me, It's Not Really Me.” Insights From Patients on Living With Systemic Sclerosis: An Interview Study

Abstract

SSc inflicts major bodily and social restrictions that crush patients' identity and self-image. Uncertainties about the cause, diagnosis, and prognosis can undermine confidence in care, leading to anxiety and therapeutic nihilism. Access to psychosocial care to support the patients' role and functioning capacity, as well as communication and education that explicitly address their concerns regarding management may potentially improve treatment satisfaction, self-efficacy, adherence, and outcomes in patients with SSc.

Patients’ Perspectives and Experience of Psoriasis and Psoriatic Arthritis: A Systematic Review and Thematic Synthesis of Qualitative Studies

“…Patients with other rheumatic and skin conditions have expressed similar challenges and beliefs compared with our find ings. Stigmatization attributed to visible changes in the skin have also been reported among patients with systemic sclerosis (40). Similar to a recent study on the goals of patients with rheumatoid arthritis (41), patients with PsA and psoriasis valued treatments due to perceptible improvement (symptom alleviation and achiev ing independence) over preventing damage.…”

“…Not Having the Real Support That We Need”: Patients’ Experiences With Ambiguity of Systemic Lupus Erythematosus and Erosion of Social Support

“…Our findings are consistent with studies aiming to elucidate patient experiences in other chronic rheumatic diseases such as systemic sclerosis (SSc) (12), rheumatoid arthritis (RA) (32, 33), and multiple sclerosis (MS) (34). Overlapping themes include dealing with uncertainty (SSc, RA, MS), poor communication with physicians (MS), inadequate physician validation (SSc), role changes (SSc, RA), and poor availability of disease information (SSc).…”

“…Additionally, among SLE patients there appears to be a positive association between HRQOL (encompassing all domains of SF-36) and amount of social support, measured using the interpersonal support evaluation list (ISEL) (9). This is consistent with studies examining the roles of social support and relationships in other autoimmune diseases such as rheumatoid arthritis (10, 11) and systemic sclerosis (12) which show that social support can reduce the impact of disease manifestations. However, while the association of social support with HRQOL appears to be clear, the precise types of social support needed and from whom, in addition to the effects of negative support (13), remain unclear (5).…”

Experiences of physical activity and exercise in individuals with systemic sclerosis: A qualitative study

“…The participants believed that PA/exercise resulted in fewer side‐effects compared to medical treatment. Worries about side‐effects of disease‐modifying treatments and the need for medications to counter pharmaceutical side‐effects have previously been presented in SSc (Sumpton et al, ). Consequently, the fear of potential side‐effects might lead to poor medical compliance, which can lead to deterioration of the disease and, in turn, hinder PA/exercise and the possibilities to obtain positive effects.…”

“…In our study, the fear of deteriorating and possibly losing physical abilities were described as being strong motivators for PA/exercises and that undertaking PA/exercises gave a sense of safety, a result that is in line with other studies covering rheumatic diseases (Veldhuijzen van Zanten et al, ) and in SSc; staying aerobically fit gave a sense of taking control of one's own health (Sumpton et al, ). If PA/exercises can reduce the fear of deterioration, this could reduce the risk of anxiety and depressive symptoms that are rather common in SSc (Willems et al, ).…”