Autonomous online health assessment questionnaire registry in daily clinical practice.

OBJECTIVE: Tight control in RA necessitates frequent disease monitoring; patients might participate by self-assessment of their functional status. Therefore, we assessed the feasibility and acceptability of autonomous online registry of physical functioning. METHODS: In two tertiary-care centres (in The Netherlands and France), consecutive RA patients were approached to perform autonomous registry of the HAQ in an electronic medical record. Feasibility and acceptability of autonomous HAQ registry was assessed through: (i) the percentage of acceptances; (ii) the time needed to register the HAQ (the Netherlands); (iii) patient satisfaction with autonomous registry; and (iv) willingness for future home-based HAQ completion, either self-declared (The Netherlands) or actual file access from home within 6 months (France). RESULTS: In all, 214 patients were approached; 163 agreed to participate; 137 (64% of 214) had complete data that were analysed. Median age was 56 years (range 20-78 years), 80% were female, median disease duration was 9 years. The median time needed to fill in the HAQ in the waiting room was 5.8 min; patient satisfaction was high (mean score 4.1 out of 5), self-declared willingness for autonomous registry at home was 73%. In the 6-month follow-up period, 46% of patients accessed their medical file from home at least once. CONCLUSION: Many RA patients reported willingness to self-monitor their disease online, but fewer than half of the patients actually did. To enhance patient autonomous monitoring, progress is needed in terms of Internet access, continuous patient support and, importantly, convincing patients that they will benefit from autonomous monitoring.

The relationship of patient-reported joints with active synovitis detected by power Doppler ultrasonography in rheumatoid arthritis.

OBJECTIVES: This paper aims to evaluate the relationship of patient-reported tender and swollen joints with active inflammation as detected by power Doppler (PDUS) and whether this relationship is affected by significant joint damage. METHODS: Fifty rheumatoid arthritis patients self-assessed 28 tender and swollen joints and were followed by PDUS assessment. Relationship of tender and swollen joints with active synovitis (PDUS 'gold standard') was assessed at the joint level by: a) percentage agreement at each PDUS semiquantitative grade (grade 1 to 3), b) positive likelihood ratio (LR) of agreement with PDUS, and c) LR of agreement with PDUS according to radiographic damage (significant erosive disease vs. non-erosive disease). Correlation of tender and swollen joint counts with disease activity markers was analysed by Spearman's. Sensitivity analyses examined the influence of disease activity or global pain on level of agreement at the joint level. RESULTS: Of joints with significant active inflammation (e.g. grade 3 PDUS), patients identified 75% as tender and 63% as swollen. Swollen joints showed strong association at the joint level with active synovitis when there was no significant radiographic damage (LR 2.54, 95%CI 1.93-3.34), but with no significant radiographic damage (LR 1.32, 95%CI 0.75-2.32). Swollen joint counts were statistically correlated with PDUS-DAS28 and CRP, but not PDUS score. Sensitivity analysis showed better agreement of tender and swollen joints with active synovitis when DAS28 was ≤ 3.2 and when patient global pain was <50mm on visual analogue scale. CONCLUSIONS: The relationship between patient-reported joints and active synovitis is stronger in the setting of low disease activity without erosive disease, affected also by degree of reported global pain. Further longitudinal studies of patient-reported joints are needed.

Reliability of patient self-evaluation of swollen and tender joints in rheumatoid arthritis: A comparison study with ultrasonography, physician, and nurse assessments.

OBJECTIVE: Swollen and tender joints, important in assessing rheumatoid arthritis (RA) activity, have traditionally been evaluated by health professionals. Whether patients can accurately evaluate joints is uncertain. This study evaluated 1) the reliability of patient-assessed swollen joint counts (SJCs) and tender joint counts (TJCs) versus those assessed by a physician, nurse, and B-mode ultrasonography (US) and 2) patient-derived Disease Activity Score in 28 joints (DAS28) compared with physician-, nurse-, and US-derived DAS28. METHODS: Fifty RA patients self-assessed 28 joints (shoulders, elbows, wrists, metacarpophalangeal, proximal interphalangeal, and knees) for swelling and tenderness. They were then assessed separately by a physician, a nurse, and an ultrasonographer. Nine patients were tested twice (intraobserver reliability), and reliability was assessed at the patient level (28 joints) by intraclass correlation coefficients (ICCs) and at the joint level by prevalence-adjusted bias-adjusted kappa. RESULTS: TJC reliability was good for patient versus physician (ICC 0.85 [95% confidence interval (95% CI) 0.65, 0.94]) and patient versus nurse (ICC 0.76 [95% CI 0.47, 0.90]). However, SJC reliability was poor for patient versus physician (ICC 0.41 [95% CI -0.05, 0.72]) and patient versus nurse (ICC 0.44 [95% CI -0.005, 0.74]). SJC reliability was poor in all assessors compared with B-mode US, particularly patient-assessed SJC (ICC 0.22 [95% CI -0.25, 0.61]). However, patient-derived DAS28 correlated well with US-derived DAS28 (ICC 0.95 [95% CI 0.87, 0.98]). Intraobserver reliability was good for all assessors for TJC, but was lower for SJC. CONCLUSION: Patient-derived DAS28 is at least as reliable as physician-, nurse-, or US-derived DAS28, despite poor reliability in patient-assessed SJC.