Development and Validation of a Self-Administered Questionnaire Measuring Essential Knowledge in Patients With Axial Spondyloarthritis.

OBJECTIVE: To develop and validate a patient knowledge questionnaire regarding axial spondyloarthritis (axSpA). METHODS: Knowledge considered essential for patients with axSpA was identified through Delphi rounds among rheumatologists, healthcare professionals (HCPs), and patients, then reformulated to develop the knowledge questionnaire. Cross-sectional validation was performed in 14 rheumatology departments to assess internal validity (Kuder-Richardson coefficient), external validity, acceptability, reproducibility (Lin concordance correlation coefficient), and sensitivity to change (knowledge score before vs after patient education sessions and effect size). RESULTS: The Spondyloarthritis Knowledge Questionnaire (SPAKE) is a self-administered 42-item questionnaire with a 32-item short form, both scored 0 to 100, assessing knowledge of disease, comorbidities, pharmacological treatments, nonpharmacological treatments, self-care, and adaptive skills. In the validation study (130 patients; 67 [51.5%] male, mean age 43.5 [SD 12.9] yrs), the mean (SD) score of the long-form questionnaire was 71.6 (15.4), with higher scores (better knowledge) in nonpharmacological treatments and adaptive skills and lower scores in cardiovascular comorbidity and pharmacological treatments. Acceptability was good, with no missing data; the internal validity coefficient was 0.85. Reproducibility was good (0.81, 95% CI 0.72-0.89). SPAKE showed good sensitivity to change; scores were 69.2 (15.3) then 82.7 (14.0) after patient education sessions (Hedges effect size = 0.92, 95% CI 0.52-1.31). CONCLUSION: SPAKE is a knowledge questionnaire for patients with axSpA, developed with the involvement of HCPs and patients and reflecting current recommendations for the management of axSpA. SPAKE will be useful in assessing knowledge acquisition and self-management strategies in routine care and research.

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.

Therapeutic education improves rheumatoid arthritis patients' knowledge about methotrexate: a single center retrospective study.

To assess, by means of a questionnaire, the effectiveness of a therapeutic education session on rheumatoid arthritis patients' knowledge about methotrexate. Retrospective study of data collected in routine care. STROBE guidelines were used. Rheumatoid arthritis patients treated with methotrexate had a therapeutic education session conducted by a rheumatology nurse at time 0 and 6 months after. They completed a questionnaire to assess their knowledge about methotrexate before the first therapeutic education session and 6 and 12 months after. A score from 0 to 100 was calculated based on 20 questions. A total of 66 patients were enrolled (50 women), with a mean age of 57 years, median disease duration of 4 years, and methotrexate treatment duration of 2 years. The knowledge score improved 6 months after the first therapeutic education session and was unchanged at 12 months. Significant improvement was observed in knowledge about the need for contraception, the contraindication of trimethoprim, the maximum dose not to be exceeded, reduction in alcohol consumption, and the value of combining folic acid with methotrexate. Knowledge about the risk of hypersensitivity pneumonitis did not improve. Skills related to the need for and timing of laboratory testing and contraception were evaluated using two role-playing situations. None of the skills improved. A therapeutic education session improves patients' knowledge about methotrexate at 6 months.

Adherence to Subcutaneous Anti-TNF Treatment in Chronic Inflammatory Rheumatism and Therapeutic Patient Education.

OBJECTIVE: Poor patient adherence to anti-TNF treatment has proven to be a major roadblock to effective management. Therapeutic patient education (TPE) is now recognized as a crucial tool in managing conditions like chronic inflammatory rheumatism and in improving treatment adherence. This study aimed to assess whether different TPE programs might improve adherence to subcutaneous anti-tumor necrosis factor (anti-TNF) treatment in patients with rheumatoid arthritis (RA), ankylosing spondyloarthritis (AS), and psoriatic arthritis (PsA). METHODS: This was a retrospective, observational, monocentric study of current care practices. We included 193 patients (124 women; mean age 53.3 ± 14.8 years). All patients received subcutaneous anti-TNF treatment and one of three TPE models, delivered by a nurse, from 2009 to 2013. The cohort was grouped according to different educational models: M1: information (N=92); M2: individual TPE (N=80); and M3: individual and group TPE sessions (N=21). Adherence was assessed with the Morisky Medication Adherence Scale (MMAS-4™). Scores were rated as follows: good adherence (MMAS-4 = 4), moderate adherence (MMAS-4 = 2-3), and poor adherence (MMAS-4 = 0-1). RESULTS: The mean disease duration was 10 years [95% CI: 5 to 18]. The cohort comprised 113 patients with RA, 73 with AS, and seven with PsA. Overall, 146 (75.7%) patients displayed good adherence, 34 (17.6%) displayed moderate adherence, and 13 (6.7%) displayed poor adherence. The M3 group displayed less adherence than the M1 and M2 groups. Old age was the only factor correlated with good adherence (p=0.005). The level of knowledge had no significant impact on adherence. CONCLUSION: This study demonstrated good adherence to anti-TNF treatment in patients that received TPE, particularly when it was delivered in individual sessions.

Essential knowledge for patients with rheumatoid arthritis or spondyloarthritis: Results of a multicentric survey in France among health professionals and patients.

OBJECTIVE: Information and education are recommended for patients with inflammatory arthritis including rheumatoid arthritis (RA) and spondyloarthritis (SpA). However, there is no consensus on which knowledge is essential to enhance patients' self-management. The aim of this study was to determine such knowledge. METHODS: Based on published knowledge questionnaires (KQs) collected by a systematic literature review, a list of items was elaborated, classified in domains and sub domains. A Delphi process was performed with rheumatologists, healthcare professionals and patients in 2014-2015, selecting the items considered useful. RESULTS: Three published KQs were analysed: 2 for RA; 1 for SpA and 5 unpublished KQs were collected. In the KQs, 90 knowledge items were mentioned for RA and 67 for SpA. The 1st Delphi round enlarged the list to 322 items for RA and 265 items for SpA. The second round selected 69 and 59 knowledge items for RA and SpA respectively, of which 36 (52%) and 34 (57%) were not present or modified from the published KQs. Key domains included treatment strategies, managing cDMARDs and bDMARDs, managing symptomatic medications. Knowledge on non-pharmacological treatment concerned pain and fatigue, physical activity, adaptative skills to personal and professional environment, patient-HP communication and shared decision-making. CONCLUSION: The present study provides a corpus of knowledge considered essential for patients in the self-management of their arthritis. The selection of many items reflects recent emphasis on professional recommendations and the patients' perspective. Future work should lead to the development of new updated KQs for patients with inflammatory arthritis.

Translation and adaptation of the French version of the Heart Disease Fact Questionnaire - Rheumatoid Arthritis (HDFQ-RA 1&2).

OBJECTIVES: Rheumatoid arthritis constitutes a cardiovascular risk factor as significant as diabetes, yet remains insufficiently managed. The Heart Disease Fact Questionnaire - Rheumatoid Arthritis (HDFQ-RA1&2) is a self-questionnaire that assesses patients' general knowledge about cardiovascular risk and more specifically associated with rheumatoid arthritis and its treatments. Objectives are to translate and adapt the HDFQ-RA into French and assess its psychometric properties in order for it to be used as instructional material by nurses in therapeutic education. METHODS: The questionnaire was translated into French and subsequently back-translated into English pursuant to the "Guidelines for the process of cross-cultural adaptation of self-report measures". Psychometric properties were evaluated in a sample of 60 rheumatoid arthritis patients (test-retest procedure) between June and December 2013. Item content, factor analysis, and Kuder-Richardson's-alpha were used to evaluate acceptability, internal consistency, and reproducibility. RESULTS: A culturally acceptable version for French patients was obtained. Cronbach's-alpha coefficient was higher than the usual recommended value of 0.6. Reproducibility was good (agreements measured by Kappa's coefficient >0.56 [recommended value=0.4]). Results showed that knowledge of cardiovascular risk was generally satisfactory (rate of correct responses ≥60%), but specific knowledge of the cardiovascular risk associated with rheumatoid arthritis remained poor, e.g. knowledge of the increased risk associated with rheumatoid arthritis (40% correct responses), higher risk with active rheumatoid arthritis, adverse effect of rheumatoid arthritis on lipid profile and the effects of corticosteroids and NSAIDs on cardiovascular risk. CONCLUSIONS: The French-HDFQ-RA is valid for assessing patient knowledge of cardiovascular risk in general and associated with rheumatoid arthritis and its treatments.

The development of a questionnaire to evaluate rheumatoid arthritis patient's knowledge about methotrexate.

AIMS AND OBJECTIVES: Assess knowledge concerning methotrexate in rheumatoid arthritis patients by means of a questionnaire. BACKGROUND: Methotrexate is the standard drug for rheumatoid arthritis treatment. It has potentially serious side effects that can be largely prevented by making sure that patients are well informed and comply with prescription guidelines. DESIGN: Cross-sectional survey. METHODS: A questionnaire on methotrexate (mode of action, administration, drug interactions), side effects, monitoring and lifestyle implications was offered to all the rheumatoid arthritis patients treated with the drug seen between March and September 2013 in a large hospital in France. RESULTS: One hundred and eighty-three patients (143 women), mean age 60 (13·5) years, with a median disease duration of 12 years [7-20] and treated with methotrexate for eight years [5-13] took part. Methotrexate was identified as a disease-modifying antirheumatic drug by 78% of the patients. The weekly administration method was well assimilated (97%); 67% indicated that the rationale for folic acid was to reduce treatment toxicity. Only 21% knew that trimethoprim was contraindicated. Half were aware of the haematologic risk and 36% were aware of the risk of hypersensitivity pneumonitis. There was knowledge concerning laboratory testing (80%), but 54% thought they were only being monitored for rheumatoid arthritis activity. Only 13% of the men, but 90% of the women, of childbearing age knew that contraception was essential, and 75% indicated that alcohol consumption should be limited. A low knowledge score correlated significantly with age and low educational level. It was independent of sex, duration of treatment for rheumatoid arthritis. CONCLUSIONS: Rheumatoid arthritis patient's knowledge concerning methotrexate is poor, particularly for the most serious side effects (haematologic and hypersensitivity pneumonitis), interactions with trimethoprim, and in men, the need for contraception. RELEVANCE TO CLINICAL PRACTICE: Patient knowledge concerning methotrexate should be regularly checked and supported using the different therapeutic education tools available, especially when patients are older people and have had limited schooling.