Dataset Information

Improving accuracy of self-reported diagnoses of rheumatoid arthritis in the French prospective E3N-EPIC cohort: a validation study.

ABSTRACT: OBJECTIVES:The French E3N-EPIC (Etude Epidémiologique auprès des femmes de la Mutuelle générale de l'Education Nationale -European Prospective Investigation into Cancer and Nutrition) cohort enrolled 98?995 women aged 40 to 65 years at inclusion since 1990 to study the main risk factors for cancer and severe chronic conditions in women. They were prospectively followed with biennially self-administered questionnaires collecting self-reported medical, environmental and lifestyle data. Our objective was to assess the accuracy of self-reported diagnoses of rheumatoid arthritis (RA) and to devise algorithms to improve the ascertainment of RA cases in our cohort. DESIGN:A validation study. PARTICIPANTS:Women who self-reported an inflammatory rheumatic disease (IRD) were asked to provide access to their medical record, and to answer an IRD questionnaire. Medical records were independently reviewed. PRIMARY AND SECONDARY OUTCOME MEASURES:Positive predictive values (PPV) of self-reported RA alone, then coupled with the IRD questionnaire, and with a medication reimbursement database were assessed. These algorithms were then applied to the whole cohort to ascertain RA cases. RESULTS:Of the 98?995 participants, 2692 self-reported RA. Medical records were available for a sample of 399 participants, including 305 who self-reported RA. Self-reported RA was accurate only for 42% participants. Combining self-reported diagnoses to answers to a specific IRD questionnaire or to the medication reimbursement database improved the PPV (75.6% and 90.1%, respectively). Using the devised algorithms, we could identify 964 RA cases in our cohort. CONCLUSION:Accuracy of self-reported RA is poor but adding answers to a specific questionnaire or data from a medication reimbursement database performed satisfactorily to identify RA cases in our cohort. It will subsequently allow investigating many potential risk factors of RA in women.

SUBMITTER: Nguyen Y

PROVIDER: S-EPMC6937120 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Improving accuracy of self-reported diagnoses of rheumatoid arthritis in the French prospective E3N-EPIC cohort: a validation study.

Nguyen Yann Y Salliot Carine C Gusto Gaëlle G Descamps Elise E Mariette Xavier X Boutron-Ruault Marie-Christine MC Seror Raphaèle R

BMJ open 20191216 12

<h4>Objectives</h4>The French E3N-EPIC (<i>Etude Epidémiologique auprès des femmes de la Mutuelle générale de l'Education Nationale</i><i>-</i>European Prospective Investigation into Cancer and Nutrition) cohort enrolled 98 995 women aged 40 to 65 years at inclusion since 1990 to study the main risk factors for cancer and severe chronic conditions in women. They were prospectively followed with biennially self-administered questionnaires collecting self-reported medical, environmental and lifest ...[more]

PMID: 31848174

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Project description:ObjectivesTo test the psychometric properties of the United Kingdom's Commissioning for Quality in Rheumatoid Arthritis Patient-Reported Experience Measure (CQRA-PREM) in patients with spondyloarthritis (SpA) and rheumatoid arthritis (RA) and to implement this questionnaire in daily practice in the Netherlands.MethodsAfter a forward-backward translation procedure into Dutch, the CQRA-PREM was tested into two quality registries in daily practice. Face validity was assessed with focus group interviews. Feasibility was evaluated through completion times and interpretability of domain scores through floor and ceiling effects. Internal consistency (Cronbach's α coefficients) and homogeneity (corrected item-total correlations) were determined. Divergent validity was assessed by Spearman's rank correlation coefficients (rs) between the average scores of domains and outcome measures. The CQRA-PREM was implemented in daily practice, and the results were used in quality improvement cycles.ResultsFace validity of the CQRA-PREM was good. The CQRA-PREM was completed by 282 patients with SpA and 376 with RA. Median time to complete the CQRA-PREM was 4.7 min. Ceiling effects were found in three out of seven domains. Internal consistency of nearly all domains was considered good (0.65 ≤ α ≤ 0.95). Thresholds for homogeneity were exceeded within three domains (rp > 0.7), suggesting item redundancy. Divergent validity showed that nearly all domains of the CQRA-PREM were at most weakly correlated with outcomes measures (- 0.3 ≤ rs ≤ 0.3). The CQRA-PREM could identify areas of improvement for providing patient-centered care.ConclusionThe CQRA-PREM has acceptable psychometric properties and has shown to be a useful tool in evaluating quality of care from the patients' perspective in the Netherlands.Trial registrationSpA-Net is registered in the Netherlands Trial Registry (NTR6740).Key points• The Commissioning for Quality in Rheumatoid Arthritis Patient-Reported Experience Measure (CQRA-PREM) is a valid measure for assessing patient-centeredness of rheumatology care. • The Dutch version of the CQRA-PREM shows acceptable psychometric properties. • The CQRA-PREM shows to be a useful tool in Plan-Do-Check-Act quality improvement cycles in the Netherlands. • The CQRA-PREM can be used for benchmarking and quality improvement of rheumatology services.

Dataset Information

Improving accuracy of self-reported diagnoses of rheumatoid arthritis in the French prospective E3N-EPIC cohort: a validation study.

Publications

Improving accuracy of self-reported diagnoses of rheumatoid arthritis in the French prospective E3N-EPIC cohort: a validation study.

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