From September 2008 to September 2009, people living with scleroderma were given the opportunity to answer a survey about their disease, their symptoms, their preoccupations, their everyday challenges. This survey, designed by the CSRG in collaboration with the Scleroderma Society of Canada, aimed to determine what issues are important to individuals living with scleroderma.
Highlights of the Patient Survey: Six hundred seventy six (676) people answered the patient survey, all diagnosed with scleroderma by a healthcare professional, most of them female (87%) and married (70%). Fifty percent (50%) had Limited Scleroderma or CREST and 17% had Diffuse Scleroderma. Thirty (30) percent (30%) of respondents saw 4 or more doctors to obtain a diagnosis. Respondents were generally satisfied with the medical care they were receiving. Fatigue was the most commonly reported symptom, followed closely by Raynaud's phenomenon, joint pain, stiffness in hands and difficulty sleeping. Sexual difficulties were also common in both men and women with the disease. Hospitalizations related to Scleroderma were also common. Almost half the respondents reported feeling "down" and depressed at least several days in the past 2 weeks, and concerns about physical appearance were common. Scleroderma definitely had a significant financial impact on at least half the respondents, and many were receiving disability benefits, being unable to work.
These responses will certainly help to reshape the future research agenda of the CSRG and help to focus research to those areas of concern that have been identified by scleroderma patients.
Please feel free to download the complete survey report here:
Complete Patient Survey Report