Shared decision-making aid for juvenile idiopathic arthritis: moving from informative patient education to interactive critical thinking.

OBJECTIVES: To develop and evaluate an illustrated, stand-alone, interactive evidence-based shared decision making (SDM) aid for JIA children; its ability to produce positive perceived involvement of JIA patients in their own management and its impact on their adherence to therapy, school absenteeism and treatment outcomes. METHODS: The SDM aid was developed to offer information about the disease, risks and benefits of treatment. A multidisciplinary team defined SDM criteria based on international standards (IPDAS). Eight categories emerged as highly important for SDM. Each category was supported by simple illustrations in an interactive style. At the end of each category, the child is asked to make a decision in view of the information given. Ninety-four JIA children were provided with the tool, in a randomised controlled study, in comparison to a control group of 95 JIA patients treated according to standard protocols. RESULTS: A total of 97.5% of the study children reported comprehensibility of more than 90%. The patients' adherence to therapy was significantly (p < 0.01) higher in the SDM group, whereas stopping DMARDs for intolerability was significantly higher in the control group at 12 months of treatment. There was a significant improvement in the patient-reported outcomes in the SDM group, and absence from school was significantly higher in the control group (p < 0.01). CONCLUSIONS: The developed SDM aid offered the children evidence-based information about the pros and cons of treatment options and improved their understanding of the disease and their ability to make an informed decision that is reflected on their adherence to therapy and better treatment outcomes. Key Points • This work represents the second generation of shared decision-making tools. • The developed tool adopts an interactive style and enhances critical thinking, giving the patients the facility of making their own decision regarding their management. • The work gives an example of core domain set of outcomes which can be used for shared decision-making interventions.

Facilitating patient-centered care: the development of illustrated multidimensional patient-reported outcome measures for children/adolescents with juvenile idiopathic arthritis.

OBJECTIVES: To assess the validity, reliability, comprehensibility, and responsiveness to change of an illustrated child/parent multidimensional patient-reported outcome measures (PROMs) questionnaire which can assess construct outcome measures of children with juvenile inflammatory arthritis. METHODS: A total of 122 children with juvenile idiopathic arthritis were included in this work in a multicenter study. The questionnaire included seven categories: (1) functional ability; (2) health-related quality of life; (3) disease activity measures: pain, global assessment, fatigue, and morning stiffness; (4) self-reported joint tenderness; (5) current medication, side effects, and adherence to therapy; (6) comorbidities; and (7) patient motivation. All the items were supported by illustrations to provide children with a visual impression of what was meant by the questions. The questionnaire has parent and patient versions. The disease activity status was assessed using JADAS-27. RESULTS: The questionnaire was reliable as demonstrated by a high-standardized alpha (0.890-0.978). The questionnaire items correlated significantly (p < 0.01) with clinical parameters of disease activity. The patient-reported tender joints correlated significantly with the physician's scores (0.842). Changes in functional disability, quality of life, and the motivation score showed significant variation (p < 0.01) with disease activity status in response to therapy. The illustrated PROMs questionnaire showed also a high degree of comprehensibility (9.6). CONCLUSIONS: Integrating PROMs into standard clinical practice is feasible and applicable. The illustrated questionnaire was valid and reliable. It provides an informative, quantitative measure for the disease activity score set data, and in the meantime, facilitates the assessment of the children's adherence to therapy, comorbidities, and motivation on an individual basis.

Sexual dysfunction in rheumatoid arthritis patients: arthritis and beyond.

Rheumatoid arthritis treatment has been shown to improve quality of life. There is little data regarding the impact of the disease and treatments on sexual function. The aim of this study was to describe the results of an assessment of sexual activity/sexual satisfaction of rheumatoid arthritis patients, identify the sexual dysfunction features, and assess their association with disease activity/disease activity parameters and other systemic risk factors/comorbidities. Consecutive rheumatoid arthritis patients attending the outpatient rheumatology clinic completed the multidimensional patient-reported outcome measures questionnaire. There are three questions screening for sexual dysfunction: patients who ticked any of the boxes were further assessed. Men completed the Sexual Health Inventory for Men; whereas women completed the Female Sexual Function Index. All patients underwent clinical assessment of disease activity parameters and cardiovascular risk. Among 231 rheumatoid arthritis patients included in this study, 49/91 (53.8%) men and 64/140 (45.7%) women reported sexual dysfunction. Among men, erectile dysfunction significantly correlated (p < 0.01) with pain score, cardiovascular disease, age, disease activity, fatigue score, intramuscular steroid injection, and tender joint count. Among women, sexual dysfunction was significantly correlated (p < 0.01) with occurrence of secondary Sjogren's syndrome, pain score, cardiovascular disease, hip joint involvement, disease activity, and tender joint count. Sexual dysfunction is common among rheumatoid arthritis patients. Erectile dysfunction in men, and problems with orgasm, arousal, and satisfaction in women, were the most prevalent manifestations. The significant correlation of sexual dysfunction with CVD may help to identify patients at high risk of cardiovascular disorders.