Survey of adolescents’ needs and parents’ views on sexual health in juvenile idiopathic arthritis

To our knowledge, this is the first study that identifies the needs for care in SH of adolescents with JIA and considers the point of view of their parents.

The results provide evidence that this study is relevant, as about half of both the patients and the parents stated having difficulties in romantic relationships due to JIA. Although we did not collect any information on the patients’ global assessment, these difficulties could have been linked to the disease activity [36].

Romantic difficulties in adolescence are real, since sentimental attraction develops from a very young age. In this study, almost half of the patients experienced JIA related body shame and low self-esteem in their romantic relationships. In the same line, a previous study reported emotional difficulties among children and adolescents growing up with JIA, leading to low self-esteem and a distorted body image compared to healthy subjects [37]. Moreover, a meta-analysis found that the presence of a chronic illness influenced teenagers’ self-images [38]. In this study, however, the impact of JIA on sexual activity was less clear-cut. Although almost one-third of the patients had difficulties such as fatigue and pain that decreased their sexual desire and almost two-thirds of these ascribed such difficulties to JIA, the patients could not easily distinguish between difficulties in genital sexual activity because it was their first experience of such and the real impact of the disease on their sexual response. This could explain why they ultimately felt that the impact of the disease on their sexual activity was moderate.

Finally, concerning an overall approach to SH, the patients and the parents had difficulty in separating the emotional, psychosocial, and mechanical aspects of sexuality. For the patients, all the various SH topics (on the biomedical as well as psychological and social aspects) were interesting. Approximately three-quarters of the patients and the parents wanted HCPs to be proactive on the subject. Recent studies on rheumatologic disease in young adults showed similar results. One exploratory study highlighted the critical need for young women and their families to discuss reproductive health issues with their rheumatology teams [39], and another study reported that although men contextualized their parenting challenges and sexual dysfunction as related to their rheumatic disease, they rarely broached the subject with their rheumatologist, and rheumatologists rarely initiated these discussions [40]. In yet another study, nearly two-thirds of the patients thought it was important to raise the subject during adolescence, but only one-fourth felt able to address the issue. Even in the contemporary era of patient education, HCPs are still uncomfortable with addressing the subject [41].

While we were looking for similar studies on other chronic diseases among adolescents and young adults (e.g., asthma, diabetes, inflammatory bowel disease, and cancer), we found a qualitative study on SH among adolescent girls with cystic fibrosis and their parents that was conducted in 2018 in the United States [42] and a cross-sectional survey of adolescents with cancer and HCPs in the Netherlands in 2020 [43]. Their findings are in line with ours: most of the subjects reported that they had never discussed SH, including the impact of their disease and treatment on it, in the context of care, and there were parental barriers to talking about it with adolescents, which were identified as lack of knowledge, a difficult emotional context, and cultural barriers. Moreover, in these two studies, the young people stated that they were interested in digital resources (i.e., videos and smartphone applications) and in talking with their peers to gain a sense of normality, whereas in our study, the JIA patients and their parents significantly differed in their preference for using digital information resources, possibly because of generational evolution. An interesting finding of the study on cystic fibrosis is how the young people accessed the digital resources: they preferred to deal with SH on a general adolescent SH website and then, focus on specific features of the disease to make the pertinent issues visible to the entire adolescent population [42]. This would enable adolescents without chronic diseases to better understand the experiences and constraints of illness and treatment in the contemporary era of mediating consent and promoting empathy in sex education [44]. Following the example of the educational series for teenagers “Sex Education” on the Netflix platform, which addresses topics such as sexual orientation and sexual dysfunction, we could envisage including protagonists with chronic disease (visible or not) who experience positive outcomes in their romantic relationships and sexual activity [45]. It would also be relevant to include testimonies from adolescents with chronic diseases in existing programs like those supported by the Population Council (an international, non-profit, non-governmental organization) [46] and Santé Publique France (a national agency under the Ministry of Health) [47, 48].

The promotion of scientifically validated sites adapted to adolescents could reassure parents who may not see digital tools and assistance from a peer expert as useful sources of information. Online resources would also fulfill adolescents’ wish to access information without their parents being informed and to ask questions anonymously. In fact, some of these materials are already appearing very gradually in sex education media [48]. Digital materials designed for adolescents do seem to be useful learning vehicles for the promotion of overall health and particularly, SH [49‐52].

School-based workers, such as nurses, should also be aware of SH issues among adolescents with chronic diseases and of the available related resources [53].

However, digital resources alone cannot meet all the related needs of adolescents and their parents. Aside from being able to access general information on the disease, young people need to discuss them, be reassured, and be listened to.

The participants indicated that they preferred this process at the hospital. However, although the disease seemed to have more strongly affected the adolescents’ romantic relationships than their sexual activity, the HCPs focused on the reproductive health. We can also assume that pediatric rheumatologists are reassuring figures for both JIA patients and their parents, as they are likely to view such persons as experts on the disease, and they would already have established a relationship with one such expert over time. However, these HCPs did not seem sufficiently proactive about the issue. Possible reasons for this are a lack of training, a mismatch between the needs and availability of HCPs involved in SH, and difficulty in broaching this subject with a young person whom they might have watched grow up. Sometimes, the adolescents themselves may be too shy to discuss this issue. Religious convictions or cultural habitus may also hinder the discussion of such a subject. Moreover, the presence of parents can limit adolescent discussion of SH, even though transition recommendations encourage HCPs to carry out adolescent consultations without parents [29].

A previous study that we uncovered on the SH needs of chronic inflammatory rheumatism patients [41] will enable us to target the training needs of HCPs and can help us propose a course specifically adapted to this issue [54].

We noted in this study the confidence of more than half of the patients in sexologists in outpatient practice. The presence of a sexologist at the hospital would allow a patient to transition to such a professional from another professional who had approached the subject but had not been able to go further. Although parents today do not seem to give this specialty much credit, a change in mentality is likely, as today’s children are tomorrow’s parents.

This study had some limitations—mainly, the overrepresentation of persons with higher levels of education and compared to the general population of the same age in France [55]. We can assume that persons with higher educational levels have stronger comprehension and communication skills and thus, would be more inclined to answer a long questionnaire. The overrepresentation of women in this study is not surprising, as they often constitute the majority of adolescents who have most subtypes of JIA and, particularly, the more severe forms that may require adult management (especially the polyarticular form with rheumatoid factor) [3]. Moreover, it is already known that more highly educated women tend to participate more actively in health surveys [56, 57]. The fact that most mothers of women with JIA responded may be because they were more comfortable with telling their mothers than their fathers about this study on such an intimate subject.

Finally, for studies on sensitive issues, such as sexuality, participation rates may be lower [58]. However, the higher level of confidentiality ensured by the anonymous filling out of the questionnaire used in this study provided the subjects a real opportunity to reveal truthful information [59]. The lower response rate of the parents could be explained by the method of distribution (the patients had to ask their parents to take part in this study). Moreover, the lower response rate of the parents could have been caused by a generational barrier to SH discussion, as SH only recently gained momentum and exposure in the media.