Background/Purpose:   Skin tightness and other abnormalities of the skin are the hallmark features of systemic sclerosis (SSc).  While skin involvement may significantly impact a patient’s quality of life, this impact is not well understood since current measures of SSc disease activity only address the objective measure of skin thickness (modified Rodnan skin score), and non-skin related SSc health status (scleroderma HAQ, SSc-GIT).  We sought to identify key items of concern as related to skin disease in SSc from the patient’s perspective.

Methods:   Three directed focus groups with diffuse and limited cutaneous SSc patients (N=15) were conducted to facilitate free discussion around the patients’ experience with skin-related quality of life in SSc.  Transcripts were qualitatively analyzed using a Grounded Theory approach and emerging items of concern were coded with the aid of data analysis software (NVivo 10, QSR International).  The items were sorted according to their frequency of citation combining all three focus sessions.  We identified major constructs that formed a unifying conceptual framework for the items.

Results:   The top cited concerns by patients included difficulty with gripping and moving parts of the body due to skin tightness, feeling self-conscious about the skin’s appearance, uncomfortable skin tightness/restrictiveness, and difficulty opening and closing the mouth.  Some skin-related concerns such as hand function may overlap with musculoskeletal involvement in SSc.  Four major constructs were identified (in descending order of cited frequency): physical limitations imposed by skin tightness, physical skin effects, emotional effects, and social effects. 

Conclusion:   The subjective effects of skin involvement on SSc patients’ quality of life are multidimensional and some important patient concerns such as discomfort from skin tightness, itch, and reduced mouth opening are not captured by existing disease outcome instruments in the dermatology and rheumatology literature.  Hand function was a frequently cited skin-related concern and points to a possible need for SSc specific hand function assessment instruments as well.

Table 1. Top 20 concerns cited by systemic sclerosis patients (N=15) during three focus sessions relating to how skin affects their quality of life