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

BACKGROUND: Although the advent of new therapeutics for juvenile idiopathic arthritis (JIA) patients has considerably lessened the impact of the disease and reduced its sequelae, the outcomes of JIA remain important in their lives. Disease repercussions and side effects of treatments may affect sexual health and cause psychological distress. This aim of the study was to determine the expectations of adolescent JIA patients and the perceptions of their parents regarding knowledge and communication with healthcare providers (HCPs) in the field of sexual health (SH). METHODS: In France, from September 2021 to April 2022, a survey was conducted, using anonymous self-administered questionnaires, among JIA patients (adults (aged 18-45 years) to provide insights from their recollection of their adolescence) and their parents in nine rheumatology centers and three patient associations. RESULTS: The responses to the 76 patient questionnaires and 43 parent questionnaires that were collected were analyzed. Half of the patients thought JIA impacted their romantic relationships, but the results were less clear-cut for their sexual activity; and 58.7% of the patients said they would be comfortable discussing the subject with HCPs, but only 26.3% had done so, mainly regarding biomedical issues. The patients and their parents thought that ideally, the topic should be addressed in an individual patient education session at the hospital (51.3% and 34.9%, respectively), in a regular consultation (47.4% and 53.5%), or in a dedicated consultation requested by the adolescent without the adolescent's parents being informed (38.2% and 20.9%). Most of the respondents thought HCPs should be proactive in SH (77.6% of the patients and 69.8% of their parents). More patients than parents said the following digital information tools must be used: videos (29.0% vs. 9.3%, p = 0.0127) and smartphone applications (25.0% vs. 9.3%, p = 0.0372). CONCLUSION: HCPs should consider addressing the unmet need for SH discussions during their patient encounters. To meet this need, we propose concrete actions in line with the wishes of patients and parents. CLINICAL TRIAL REGISTRATION NUMBER: NCT04791189.

Development and real-life use assessment of a self-management smartphone application for patients with inflammatory arthritis. A user-centred step-by-step approach.

BACKGROUND: Mobile health applications (apps) are increasing in interest to enhance patient self-management. Few apps are actually used by patients and have been developed for patients with inflammatory arthritis (IA) treated with disease-modifying anti-rheumatic drugs which use entails risk of adverse effects such as infections. OBJECTIVE: To develop Hiboot, a self-management mobile app for patients with IA, by using a user-centred step-by-step approach and assess its real-life use. METHODS: The app development included first a qualitative study with semi-guided audiotaped interviews of 21 patients to identify the impact of IA on daily life and patient treatments practices and an online cross-sectional survey of 344 patients to assess their health apps use in general and potential user needs. A multidisciplinary team developed the first version of the app via five face-to-face meetings. After app launch, a second qualitative study of 21 patients and a users' test of 13 patients and 3 rheumatologists led to the app's current version. The number of app installations, current users and comments were collected from the Google Play store and the Apple store. RESULTS: The qualitative study revealed needs for counselling, patient-health professional partnership, and skills to cope with risk situations; 86.8% participants would be ready to use an app primarily on their rheumatologist's recommendation. Six functionalities were implemented: a safety checklist before treatment administration, aids in daily life situations based on the French academic recommendations, treatment reminders, global well-being self-assessment, periodic counselling messages, and a diary. The Hiboot app was installed 20,500 times from September 2017 to October 2020, with 4300 regular current users. Scores were 4.4/5 stars at Android and iOS stores. CONCLUSION: Hiboot is a free self-management app for patients with IA developed by a step-by-step process including patients and health professionals. Further evaluation of the Hiboot benefit is needed.

Assessment of the adherence to disease-modifying drugs in patients with chronic inflammatory rheumatic diseases: Results of a survey of 1594 patients.

OBJECTIVES: a) to describe the self-reported adherence to disease modifying drugs (DMARDs) (methotrexate and biological DMARDs) among patients with chronic inflammatory rheumatic diseases (CIRDs); b) to assess factors associated with non-adherence. METHODS: An observational, cross-sectional, nationwide study was conducted through the use of an electronic survey, which was released via patient organizations in France to rheumatic patients. The main outcome was the rate of non-adherence to DMARDs, which was evaluated with the following question "Have you ever tried to stop or space out your treatment in contrast to what was planned with your doctor?" A positive answer was considered "low adherent". Sociodemographic variables, type of CIRD and treatment information were also collected. Factors associated with low adherence to methotrexate and bDMARDs were explored by univariate and multivariate logistic regressions. RESULTS: Among the 1594 participants who completed the survey, 795 (49.9%) were receiving methotrexate and 709 (44.5%) bDMARDs. A total of 159 (20.0%) were identified as low adherents to methotrexate, and being a woman was independently associated with low adherence (OR 1.90 [95% CI 1.07 - 3.36)] to this drug. Regarding bDMARDs, 177 (25.0%) were identified as low adherent, and the factors independently associated with low adherence were being employed (OR 1.47 [95% CI 1.04 - 2.09]) and no concomitant use of methotrexate (OR 0.51 [95% CI 0.36 - 0.73]). CONCLUSIONS: This study suggests that more than 20% of CIRDs patients are low adherent to their DMARDs, and this is more frequent when bDMARDs are administered as a monotherapy.