![[Visit Client Website]](images/banner.gif)
Presentation Number: 1149
PURPOSE: The objective of this study was to evaluate the symptomatic burden and impact of illness in patients with systemic sclerosis (SSc).
METHODS: We interviewed 48 patients with SSc. Patients completed a questionnaire rating the intensity, frequency, impact and importance of symptoms and features of SSc on a 0 to 10 scale (0:not a problem; 10: very severe problem). The following symptoms/features were included: skin problems, hand problems, calcinosis, shortness of breath, eating, bowel problems, sleeping, pain, appearance. Five items were included for each of the areas. Patients also completed the Patient-Generated Index (PGI) a semi-quantitative instrument that allows patients to select the areas of their lives that are most affected by their disease, and to rate them using ranking and ordinal scores. Additional questionnaires included the SF-36 and the HAQ.
RESULTS: 85% of the patients were female; mean age was 53.3 (12.7) yrs. The three most important areas identified by patients as problematic were skin (mean=5.6), hands (mean=5.6) and pain (mean=5.5); these were followed by sleeping (mean=4.5), bowel problems (mean=4.0) and shortness of breath (mean=3.7). However, significant variation was observed among individual patients: observed scores for each of the areas ranged from 0 (no problem) to 10 (very severe problem). Patients presented with different combinations of symptoms and problem areas. By completing the PGI, patients were able to select the areas of their lives that were most affected by their SSc. Three major areas were identified as the most salient: (i) social life - this included relationships with family, friends, and participation in social activities; (ii) professional life - work and school; and (iii) activities of daily living -e.g. cleaning house, shopping.
CONCLUSIONS: SSc has a major impact on quality of life, which is experienced uniquely by each patient. Substantial variation is observed in the symptom burden of patients. Pain appears to be a prevalent and important symptom. These findings suggest that comprehensive assessments of symptoms and health-related quality of life should consistently be included in studies of patients with SSc to accurately quantify their burden of illness.
METHODS: We interviewed 48 patients with SSc. Patients completed a questionnaire rating the intensity, frequency, impact and importance of symptoms and features of SSc on a 0 to 10 scale (0:not a problem; 10: very severe problem). The following symptoms/features were included: skin problems, hand problems, calcinosis, shortness of breath, eating, bowel problems, sleeping, pain, appearance. Five items were included for each of the areas. Patients also completed the Patient-Generated Index (PGI) a semi-quantitative instrument that allows patients to select the areas of their lives that are most affected by their disease, and to rate them using ranking and ordinal scores. Additional questionnaires included the SF-36 and the HAQ.
RESULTS: 85% of the patients were female; mean age was 53.3 (12.7) yrs. The three most important areas identified by patients as problematic were skin (mean=5.6), hands (mean=5.6) and pain (mean=5.5); these were followed by sleeping (mean=4.5), bowel problems (mean=4.0) and shortness of breath (mean=3.7). However, significant variation was observed among individual patients: observed scores for each of the areas ranged from 0 (no problem) to 10 (very severe problem). Patients presented with different combinations of symptoms and problem areas. By completing the PGI, patients were able to select the areas of their lives that were most affected by their SSc. Three major areas were identified as the most salient: (i) social life - this included relationships with family, friends, and participation in social activities; (ii) professional life - work and school; and (iii) activities of daily living -e.g. cleaning house, shopping.
CONCLUSIONS: SSc has a major impact on quality of life, which is experienced uniquely by each patient. Substantial variation is observed in the symptom burden of patients. Pain appears to be a prevalent and important symptom. These findings suggest that comprehensive assessments of symptoms and health-related quality of life should consistently be included in studies of patients with SSc to accurately quantify their burden of illness.
M.E. Suarez-Almazor, Scleroderma Foundation, 2 Research grants.