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Ssage or exercises to lessen mouth tightening and improve mouth function, and massage or gentle manual stretching to lessen vaginal tightness. The degree to which these suggestions are effective in reducing barriers to sexual activity and enhancing the sexual experience of women with SSc, however, has not been tested. There are a number of limitations that should be considered in interpreting the results of our study. First, it was cross-sectional and conducted with a convenience sample of patients enrolled in the CSRG Registry. Patients with very severe SSc who were too sick to participate, as well as those who may have died earlier in their disease course, are not enrolled in the Registry, which may result in an over-representation of healthier patients. Although approximately 80 of approached patients enroll in the Registry, data on patients who do not participate are not available. Second, the non-medical, population sample of the Adult Twins Registry 22948146 is from a different country than that of the CSRG Registry, which could influence comparability. Third, the non-medical, population sample was from a twin registry. However, there is no reason to expect that a twin sample would bias results, and there are no other readily available population samples to make any attempt at benchmarking the levels of activity and impairment from SSc. Additionally, the Adult Twins Registry has been shown to be representative of the general population for a wide range ofTable 5. Correlations of FSFI domain scores with sexual satisfaction scores among sexually active women with systemic sclerosis and sexually active women from a UK general population sample.CSRG Sample (N = 294) FSFI Domain Desire Arousal Lubrication Orgasm Pain Total FSFI score Correlation 0.61 0.68 0.50 0.70 0.42 0.74 95 CI 0.53?.68 0.61?.74 0.41?.58 0.64?.75 0.32?.51 0.68?.79 P value ,0.001 ,0.001 ,0.001 ,0.001 ,0.001 ,0.UK Population Sample (N = 947) Correlation 0.42 0.51 0.34 0.51 0.30 0.57 95 CI 0.37?.47 0.46?.56 0.28?.40 0.46?.56 0.24?.36 0.53?.61 P value ,0.001 ,0.001 ,0.001 ,0.001 ,0.001 ,0.doi:10.1371/journal.pone.0052129.1485-00-3 tFemale Sexual Functioning in Systemic Sclerosislifestyle and sexual behavioural factors [26,27]. Thus, although this comparison does not permit strong claims about precise estimates of the risk of non-activity and dysfunction in SSc, it provides a general context and allows for a global understanding of the degree of sexual impairment from SSc compared to nonmedically ill women. In both studies, women indicated if they had been sexual active or not, but no definition for the term “sexual activity” was provided. Thus, it is possible that this term may have been interpreted differently by different women. For instance, it is possible that some may have considered aspects such as hugging, snuggling, kissing and touching to be sexual activities, whereas 58-49-1 others may have considered sexual activity to be defined solely as some form of penetration. Another limitation is that the 9-item version of the FSFI has not been specifically validated, although it has been used previously in SSc [12]. Furthermore, we do not know to what degree having sexual problems may have influenced whether or not women were married, however this would apply across both samples in this study. Finally, while there were missing data in both samples, the proportion of missing data was very low in both samples (9 in SSc and 6 in the UK sample), and the relatively small differences in the ch.Ssage or exercises to lessen mouth tightening and improve mouth function, and massage or gentle manual stretching to lessen vaginal tightness. The degree to which these suggestions are effective in reducing barriers to sexual activity and enhancing the sexual experience of women with SSc, however, has not been tested. There are a number of limitations that should be considered in interpreting the results of our study. First, it was cross-sectional and conducted with a convenience sample of patients enrolled in the CSRG Registry. Patients with very severe SSc who were too sick to participate, as well as those who may have died earlier in their disease course, are not enrolled in the Registry, which may result in an over-representation of healthier patients. Although approximately 80 of approached patients enroll in the Registry, data on patients who do not participate are not available. Second, the non-medical, population sample of the Adult Twins Registry 22948146 is from a different country than that of the CSRG Registry, which could influence comparability. Third, the non-medical, population sample was from a twin registry. However, there is no reason to expect that a twin sample would bias results, and there are no other readily available population samples to make any attempt at benchmarking the levels of activity and impairment from SSc. Additionally, the Adult Twins Registry has been shown to be representative of the general population for a wide range ofTable 5. Correlations of FSFI domain scores with sexual satisfaction scores among sexually active women with systemic sclerosis and sexually active women from a UK general population sample.CSRG Sample (N = 294) FSFI Domain Desire Arousal Lubrication Orgasm Pain Total FSFI score Correlation 0.61 0.68 0.50 0.70 0.42 0.74 95 CI 0.53?.68 0.61?.74 0.41?.58 0.64?.75 0.32?.51 0.68?.79 P value ,0.001 ,0.001 ,0.001 ,0.001 ,0.001 ,0.UK Population Sample (N = 947) Correlation 0.42 0.51 0.34 0.51 0.30 0.57 95 CI 0.37?.47 0.46?.56 0.28?.40 0.46?.56 0.24?.36 0.53?.61 P value ,0.001 ,0.001 ,0.001 ,0.001 ,0.001 ,0.doi:10.1371/journal.pone.0052129.tFemale Sexual Functioning in Systemic Sclerosislifestyle and sexual behavioural factors [26,27]. Thus, although this comparison does not permit strong claims about precise estimates of the risk of non-activity and dysfunction in SSc, it provides a general context and allows for a global understanding of the degree of sexual impairment from SSc compared to nonmedically ill women. In both studies, women indicated if they had been sexual active or not, but no definition for the term “sexual activity” was provided. Thus, it is possible that this term may have been interpreted differently by different women. For instance, it is possible that some may have considered aspects such as hugging, snuggling, kissing and touching to be sexual activities, whereas others may have considered sexual activity to be defined solely as some form of penetration. Another limitation is that the 9-item version of the FSFI has not been specifically validated, although it has been used previously in SSc [12]. Furthermore, we do not know to what degree having sexual problems may have influenced whether or not women were married, however this would apply across both samples in this study. Finally, while there were missing data in both samples, the proportion of missing data was very low in both samples (9 in SSc and 6 in the UK sample), and the relatively small differences in the ch.

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