Discussion
Paediatric-onset disease corresponds to 20% of SLE cases and is more common within non-Caucasian populations. Paediatric-onset SLE may be associated with a more severe clinical presentation than in adults (eg, more frequent lupus nephritis) and treatment toxicity has the potential to accumulate over a long period.3
Physical changes associated with SLE itself (eg, malar rash, alopecia) or its treatment (eg, steroid-induced changes in habitus) can be psychologically distressing, especially during adolescence.7 Though this issue has not been studied in paediatric-onset SLE, the impact of other dermatological conditions (eg, port wine stains, atopic dermatitis, acne, hidradenitis) on the self-esteem of children has been well documented and is associated with social isolation, lower levels of self-esteem and greater risk of depression.8 All of these issues may affect relationships later in life; in particular, high self-esteem has a positive effects the quality of love relationships and happiness with partners, which is believed to arise because healthy self-esteem promotes the development of secure attachments.7
Living with a chronic disease is often challenging, and there are complex potential reasons why this may affect one’s marital status: some may prefer to focus on improving their health than pursuing long-term relationships or marriage; others may fear placing stress on themselves or a potential partner, due to the demands of marriage or living common-law. Depression or anxiety is not uncommon in SLE,9 which creates additional challenges in terms of long-term relationships. Sutanto et al10 conducted a systematic review and thematic synthesis of qualitative studies that explored the experiences of adults living with SLE. They found that patients often felt ostracised by loved ones. Female subjects with SLE were prone to fears of being unattractive and rejection, and some postposed parenthood due to their disease.
Another factor influencing marital rates in SLE could theoretically be educational attainment. It has been suggested that patients with some juvenile-onset rheumatic conditions may be more likely to pursue higher level education than their peers.11 Advanced academic pursuits theoretically could cause individuals with paediatric-onset SLE to delay getting married. On the other hand, in the general Canadian population, women with higher education levels are similar to other women in terms of marital status.12 Moreover, a Canadian study from 2002 showed that, compared with national statistics, fewer female patients with juvenile arthritis received postsecondary education, and unemployment rates for patients 20 to 24 years of age were higher.13 Thus, it is unclear whether educational pursuits and/or employment explain any of the lower frequency of being married, in our subjects with paediatric-onset SLE.
We found Caucasian patients with SLE had a higher likelihood of being married than non-Caucasians. This finding is in concordance with general population trends in North America, where Caucasian women are more likely to get married and stay married (compared with Hispanic and Black women).14
Among males with SLE, we did not see a clear difference in marital status compared with the male general population. This could be due to low power in the present study, or it could represent real differences in the effects of SLE according to sex/gender. Interestingly, the literature does suggest differences in the way chronic diseases of paediatric onset affect males versus females, supporting important gender-related issues. One relatively low-powered study of cystic fibrosis (24 females and 24 male patients) demonstrated a difference in terms of marital status in females but not in males when comparing with the general population.15 A meta-analysis of several chronic paediatric diseases (eg, asthma, arthritis, cancer, cerebral palsy, diabetes) found more self-esteem difficulties in females than in males,16 which might be explained by gender differences affecting the relation between body dissatisfaction and self-esteem. Indeed, a questionnaire-based study with 235 participants showed that despite males and females having similar rates of body dissatisfaction, body discontent had a greater impact on self-esteem in females.17
We noted that women in whom SLE had been diagnosed at ages 18–30 were less likely to be married than their general population counterparts; it may be that similar factors are at play in young adulthood as in the paediatric population. Mental health difficulties may be important, and one recent study found that female patients with SLE were more likely than male patients with SLE to have depression or anxiety.18 These issues could be driven by biological (ie, sex-related) differences, but there may also be gender-related factors at play (eg, roles related to parenting, education, work, income and so on).
These studies suggest that more research is needed to better understand how paediatric-onset SLE may affect females versus males, in terms of key personal relationships. Ultimately, whether someone marries is clearly not the principal indicator of well-being, and in our own future research we plan to use focus groups and other methods to better understand how age of SLE onset may affect future relationships and well-being.
We acknowledge important potential limitations in the present study. This study was cross-sectional; thus, it is unclear whether a lower number of patients with SLE being married/living common-law is related to fewer patients establishing marriage or common-law relationships or if the lower frequency is related to maintaining these relationships or seeking a new one should the first relationship end. We did not attempt to describe other parameters such as divorce rates or satisfaction within existing marriages, which are likely important in understanding relationship issues in SLE. We did not collect information regarding potential reasons for patients with SLE to either marry or not. Our dataset did not include information on gender-related roles (including those related to reproduction, parenting and career) that might affect long-term relationships in SLE. The small number of males included in the study limited the conclusions that could be drawn for this sub-population. Qualitative assessments (eg, interviews and/or focus groups) could provide a better perspective on these complex questions.