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.

Screening for and management of comorbidities after a nurse-led program: results of a 3-year longitudinal study in 769 established rheumatoid arthritis patients.

Background/purpose: Cardiovascular (CV) risk, cancer, infections and osteoporosis should be screened for in rheumatoid arthritis (RA). The objective was to assess 3-year effects of a nurse visit for comorbidity counselling. Methods: This was an open long-term (3 years) extension of the Comorbidities and Education in Rheumatoid Arthritis 6-month randomised controlled trial in which patients with definite, stable RA were visiting a nurse for comorbidity counselling. Comorbidity status was assessed and nurses provided advice on screening and management, at baseline and 3 years later. A score was developed to quantify comorbidity screening and management: 0-100, where lower scores indicate better screening and management. The score was compared between baseline and 3-year assessment using a Wilcoxon test for paired data. Results: Of the 970 recruited patients, 776 (80%) were followed-up at 2-4 years and 769 (79%) had available data for comorbidities at both time points: mean (±SD) age 58 (±11) years and mean disease duration 14 (±10) years; 614 (80%) were women, the mean Disease Activity Score 28 was 3.0±1.3, and 538 (70%) were receiving a biologic. At baseline, the mean comorbidity screening score was 36.6 (±19.9) and it improved at 3 years to 24.3 (±17.8) (p<0.0001), thus with a relative improvement of 33% (improvement of 12 points). CV risk screening, vaccination status and bone densitometry performance improved the most. Conclusions: Comorbidity screening was suboptimal but improved notably over 3 years, after a nurse-led programme aiming at checking systematically for comorbidity screening and giving patient advice. This long-term efficacy pleads in favour of nurse-led interventions to better address comorbidities in RA. Trial registration number: NCT01315652.

Analysis and Breakdown of Overall 1-Year Costs Relative to Inpatient and Outpatient Care Among Rheumatoid Arthritis Patients Treated with Biotherapies Using Health Insurance Claims Database in Alsace.

BACKGROUND: The economic burden linked to rheumatoid arthritis (RA) has greatly increased since the inclusion of biotherapies in the therapeutic arsenal. OBJECTIVES: This study aimed first to look at the breakdown of the rheumatoid arthritis patients on biotherapy in Alsace, France, in 2012, then to evaluate the annual cost per treated patient for each management pathway: inpatient care with intravenous biotherapies and/or outpatient care through the use of subcutaneous drugs, and finally to conduct a cost comparison with a focus on infliximab, adalimumab and etanercept. METHODS: This observational study was conducted in Alsace using 2012 health claims data from the DCIR (Données de Consommation Inter Régime) and PMSI (Programme de Médicalisation des Systèmes d'Information) databases, taking into account direct medical and non-medical costs in a real-life setting and from a National Health Insurance perspective. RESULTS: There were 5702 RA patients, i.e. 0.31 % of the Alsace population in 2012, including 1075 subjects (18.85 %) receiving biotherapy treatment. The most frequently prescribed biotherapies were etanercept and adalimumab. The estimated overall cost of care of these 5702 patients was €30.3 million, with about 50 % for the care of the 18.85 % patients on biotherapy. Average costs for inpatient, outpatient and mixed care ranged from €14,197 to €16,873 per patient per year. Annual average cost for management of a single RA patient with infliximab was significantly higher than with adalimumab and etanercept: €16,480 versus €14,116 and €14,338, respectively. CONCLUSION: These findings confirm the trends of initial modelling approaches and quantify the cost difference between various biotherapy management pathways.