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.

Development and validation of a self-administered questionnaire measuring essential knowledge in patients with rheumatoid arthritis.

To develop and validate a questionnaire assessing patient knowledge in rheumatoid arthritis (RA). Knowledge considered essential for patients with RA was identified through a series of Delphi rounds among rheumatologists, health professionals (HPs), patients, and then reformulated to construct the knowledge questionnaire. Cross-sectional multicenter validation was performed in 12 rheumatology departments to assess internal validity (Kuder-Richardson coefficient), external validity, acceptability, reproducibility (Lin's concordance correlation coefficient) and sensitivity to change (difference in total score before and after patient education sessions). Associations between patient variables and knowledge levels were evaluated. RAKE (RA Knowledge questionnairE) is a self-administered 45-item questionnaire scored 0-100, with a 32-item short-form survey assessing knowledge of disease, comorbidity, pharmacological treatments, non-pharmacological treatments, self-care and adaptative skills. Of 130 patients included in the validation study, 108 were women. Acceptability was good with < 5% missing data. Internal validity coefficient was 0.90. Mean (standard deviation) long-form score was 72.8 ± 17.8, with lower scores in comorbidity and self-care and higher scores in adaptive skills. Reproducibility was good (0.86 [0.80; 0.92]). RAKE score was positively correlated with the patients' level of education and the HPs' opinion on the patients' knowledge. RAKE score showed good sensitivity to change: 66.8 ± 16.4 then 83.8 ± 12.7, representing a hedges effect size of 1.14 [95% CI 0.73; 1.55]. RAKE is an updated questionnaire assessing essential knowledge for patients with RA to enhance self-management according to current guidelines and the patients' perspective. RAKE can usefully inform patient education interventions, routine care and research.

Benefits of Switch from Oral to Subcutaneous Route on Adherence to Methotrexate in Patients with Rheumatoid Arthritis in Real Life Setting.

PURPOSE: The purpose of the APRIM study (for Adherence Polyarthrite Rhumatoïde Injection Methotrexate) was to investigate the change in treatment adherence of patients with rheumatic arthritis (RA) who switched from oral to subcutaneous methotrexate (MTX). PATIENTS AND METHODS: Prospective, observational study in RA patients treated with MTX and switching from oral to subcutaneous (SC) route in real-life conditions. Data on motivations for switch, disease activity (DAS28-CRP), quality of life (AISM-2 SF), disability (HAQ-DI), and adherence to MTX were collected at inclusion (M0) and 6 months later (M6). Adherence was assessed by the 8-item Morisky Medication Adherence Scale (MMAS-8) and defined as high (MMAS-8 = 8), medium (MMAS-8 = 6 or ≤8) or low (MMAS-8 < 6). The primary evaluation criterion was the proportion of patients who maintained strong adherence or improved adherence by at least one category (from low to medium or strong or from medium to strong) between M0 and M6. RESULTS: The analysis involved 207 patients (age 60.4±12.7 years, 75.2% females). 6.7% were in remission and 15.5% had low disease activity (LDA) at baseline. 58.5% reached the primary criterion and strong adherence rate increased from 42.0% to 50.7%. Change of route was combined with increased MTX dose in 34.8% of patients. Switch to SC route increased the proportion of patients with remission or LDA from 22.8% to 52.9% and increased quality of life even in patients with unchanged MTX dose. CONCLUSION: Overall, change from oral to SC route improved adherence to MTX, RA control and quality of life independently of change in MTX dose.

Patients and spouses coping with inflammatory arthritis: Impact of communication and spousal perceived social support and burden.

OBJECTIVES: To guide Therapeutic Patient Education (TPE) programs to improve patients' and spouses' perceived health, we aimed to analyze the effect of the spouse health state and patient-spouse relationship on functional impairment, mental health and self-efficacy of patients with RA or SpA. METHODS: In this observational cross-sectional study, inclusion criteria were age≥18years and diagnosis of RA or SpA. The outcome criteria were functional impairment and mental health measured by the Medical Outcomes Study Short-Form 12-item version (SF-12-MCS); mental health measured by the General Health Questionnaire (GHQ-12); and self-efficacy by the General Self-Efficacy Scale (GSE Scale). Caregiver-patient relationship was assessed by the Personal Assessment of Intimacy in Relationships (PAIR) questionnaire and the Dyadic Adjustment Scale (DAS); social support by the Social Support Questionnaire-6 and spousal burden by the Zarit questionnaire. RESULTS: A total of 88 patient-spouse couples were included. Patients were mostly female (n=68, 77%), with mean age 59 (SD 12.6) years; 69% had RA. On bivariate analyses, only spousal burden was associated with patients' functional impairment. Patients' mental health was associated with satisfaction with social support and the dyad relationship. Self-efficacy of patients was associated with spousal burden, satisfaction with social support, spousal anxiety/depression and the dyad relationship. On multivariate analysis, improved mental health and perceived self-efficacy of patients were associated with spousal satisfaction with social support (Beta=0.8, P=0.1 with GHQ-12) good communication in the couple (Beta=0.5, P=0.04 with SF-12-MCS and Beta=0.4, P=0.04 with GSE Scale) and low spousal-assessed burden (Beta=-0.2, P=0.003 with GSE Scale). CONCLUSION: This study has identified potential focus for intervention. It has highlighted the importance of recognizing the role of couple communication (experiencing an open and fluent exchange of ideas) in the patient's mental health and self-efficacy but also perceived satisfaction with social support of both members of the couple on the patient's mental health.

Preconceived notions about biosimilars-a French experience.

Since the arrival of the first biosimilar monoclonal antibodies into the market, many information has been circulating, leading to preconceived notions for patients and healthcare professionals. In a pressing economic context and faced with a growing number of available biosimilars, we (clinician, patient association, biologist, pharmacists, health economists) propose to take stock by trying to distinguish facts from misconceptions.

Patients' information and perspectives on biosimilars in rheumatology: A French nation-wide survey.

OBJECTIVE: To assess the patients' information about biosimilars and to identify the patients' incentives and deterrents to concur with the use of biosimilars. METHODS: Nation-wide cross-sectional study assessing information and concerns about biosimilars of French patients treated for rheumatic inflammatory diseases, whether they were treated or not by a biological DMARD. The assessment was available online from March to July 2017. RESULTS: Among the 629 respondents, 43% knew what biosimilars were. The main sources of information were rheumatologists and patient associations. Among patients treated with a biosimilar, 44% were not informed before they received the treatment. The patients' concerns focused on the non-similar molecular structure (46%), efficacy (60%) and safety (57%) comparatively to the originator biologic. 15% of respondents would refuse to switch their biologic to its biosimilar. More than 50% of respondents would warily accept to switch medications and interrupt the treatment if in doubt. Being informed about biosimilars and a good understanding of the definition of biosimilars were characteristics associated with better adherence to biosimilars. The rheumatologist was considered the most influent source of information about biosimilars and was considered reliable when deciding to switch a biologic to its biosimilar. Patient were reluctant to substitution of the medications by pharmacists (2%). Medico-economical issues acted as an incentive and a deterrent to accept the switch of medication. CONCLUSION: Biosimilars are largely unknown to patients. Information seems to be instrumental in improving the patients' adherence to biosimilars and could help preserving the therapeutic relationship and avoiding a nocebo effect.

Recommendations of the French Society for Rheumatology for managing rheumatoid arthritis.

INTRODUCTION: This article reports the latest recommendations of the French Society for Rheumatology (SFR) regarding the management of rheumatoid arthritis (RA). METHODS: New recommendations were developed by hospital- and community-based rheumatologists having extensive experience with RA and a patient self-help organization representative. They rest on the recently issued EULAR recommendations and a literature review. RESULTS: Points emphasized in the 15 recommendations include the need to share treatment decisions between the rheumatologist and the patient, the acquisition by patients of self-management skills, remission or minimal disease activity as the treatment target, the need for initiating disease-modifying drugs as early as possible, and the usefulness of regular disease activity assessments to allow rapid treatment adjustments if needed (i.e., tight disease control). First-line methotrexate monotherapy is recommended, with concomitant short-term glucocorticoid therapy if indicated by the risk/benefit ratio. Patients who fail this approach (no response after 3 months or target not achieved after 6 months) can be considered for another synthetic disease-modifying antirheumatic drug (DMARD: leflunomide or sulfasalazine), combined synthetic DMARD therapy, or methotrexate plus a biologic, depending on the prognostic factors and patient characteristics. If the first biologic fails, switching to a second biologic is recommended. In the event of a sustained remission, cautious dosage reduction of the biological and/after synthetic DMARDs is in order. CONCLUSION: These recommendations are designed to improve the management of patients with RA.