To the Editor:

In an article published recently in Arthritis Care & Research, Schouffoer et al reported that women with systemic sclerosis (SSc; scleroderma) have greater sexual impairment and distress than healthy controls, and the authors recommended that health care professionals inquire about sexuality with all SSc patients (1). Two previous studies reported similarly that women with SSc have greater sexual impairment than women in the general population (2) or compared with women with other medical diseases where sexual problems are more routinely addressed (3).

The broad recommendation of Schouffoer et al for routine inquiry about sexual problems, however, appears to be premature. Only 16% of patients in the study by Schouffoer et al expressed a desire to discuss sexual problems, and none wished to do this with their rheumatologist. While there is a great need to better address sexuality in SSc, it is important to demonstrate the patient benefits of routine inquiry before a specific recommendation is made.

A call for routine inquiry about sexuality should only be made once we have provided a way of doing this that is agreeable to patients, feasibly implemented by physicians, and linked to an effective intervention and patient benefit (4). In order to develop and test an intervention, it is also important that we understand which disease and psychosocial characteristics may lead to sexual dysfunction. Schouffoer et al reported that “none of the specific disease characteristics of SSc were found to be associated with sexual problems” (1). Previous studies, however, have found that women with diffuse SSc have significantly greater impairment than those with limited SSc (3) and that women with SSc are more likely to experience dyspareunia, vaginal dryness, and vaginal ulcerations/fissures than women with other rheumatic diseases (5). The study by Schouffoer et al did not include an assessment of key SSc variables that may be related to impaired sexual function. Furthermore, based on the study's small sample size, there was only 32% power to detect a moderate difference in sexual impairment between limited and diffuse patients (e.g., δ = 0.50). Studies are needed that investigate multiple predictors of sexual impairment, including both physical symptoms of SSc and psychological factors, with sufficient power to detect potential upstream factors.

The study by Schouffoer and colleagues is a step in the right direction and contributes to the limited body of research on sexual function in SSc. However, more research is needed before broad recommendations to routinely inquire about sexuality can be made. Before we ask health providers to reach beyond their level of comfort and training to address sexual issues, we need to provide them with a way to do it effectively. In the interim, patients may benefit from a referral to a specialist, as Schouffoer et al suggest, or from the provision of information (e.g., in the form of a pamphlet) about common SSc sexual issues, which may normalize the subject and facilitate discussion with a health professional (3).


Ms Knafo and Ms Jewett are supported by Frederick Banting and Charles Best Canadian Graduate Scholarship/Master's Awards from the Canadian Institutes of Health Research (CIHR) and by Canadian Scleroderma Research Group Studentships (CIHR Strategic Training Initiative in Health Research Grant). Dr. Thombs is supported by a New Investigator Award from the CIHR and an Établissement de Jeunes Chercheurs award from the Fonds de la Recherche en Santé Québec.

  • 1
    Schouffoer AA, van der Marel J, ter Kuile MM, Weijenborg PT, Voskuyl A, Vliet Vlieland CW, et al. Impaired sexual function in women with systemic sclerosis: a cross-sectional study. Arthritis Rheum 2009; 61; 16018.
  • 2
    Impens AJ, Rothman J, Schiopu E, Cole JC, Dang J, Gendrano N, et al. Sexual activity and functioning in female scleroderma patients. Clin Exp Rheumatol 2009; 27 Suppl 54: S3843.
  • 3
    Knafo R, Thombs BD, Jewett LR, Hudson M, Wigley F, Haythornthwaite J. (Not) talking about sex: a systematic comparison of sexual impairment in women with systemic sclerosis and other chronic disease samples. Rheumatology (Oxford) 2009; 48: 13003.
  • 4
    Raffle AE, Gray JA. Screening: evidence and practice. Oxford (UK): Oxford University; 2007.
  • 5
    Saad SC, Pietrzykowski JE, Lewis SS, Stepien AM, Latham VA, Messick S, et al. Vaginal lubrication in women with scleroderma and Sjögren's syndrome. Sex Disabil 1999; 17: 10313.

Ruby Knafo BSc*, Lisa R. Jewett BA*, Marielle Bassel BA*, Brett D. Thombs PhD*, * McGill University and Jewish General Hospital, Montreal, Quebec, Canada.