No abstract

Background: Increasing use of self reported health status in clinical practice and research, as well as patient appreciation of monitoring fluctuations of health over time, suggest a need for more frequent collection of data. Electronic use of health status measures in the follow up of patients is a possible way to achieve this. Objective: To compare self reported health status measures in a personal digital assistant (PDA) version and a paper/pencil version for test-retest reliability, agreement between scores, and feasibility. Methods: 30 patients with stable rheumatoid arthritis (mean age 61.6 years, range 49.8 to 70.0; mean disease duration, 16.7 years; 63% female; 67% rheumatoid factor positive; 46.6% on disease modifying antirheumatic drugs) completed self reported health status measures (pain, fatigue, and global health on visual analogue scales (VAS), rheumatoid arthritis disease activity index, modified health assessment questionnaire, SF-36) in a conventional paper based questionnaire version and on a PDA (HP iPAQ, model h5450). Completion was repeated after five to seven days. Results: Test-retest reliability was similar, as evaluated by the Bland-Altman approach, the coefficient of variation, and intraclass correlation coefficients. The scores showed acceptable agreement, but with a slight tendency to higher scores on VAS with the PDA than the paper/pencil version. No significant differences were seen for measures of feasibility (time to complete, satisfaction score), but 65.5% preferred PDA, 20.7% preferred paper, and 13.8% had no preference. Conclusions: The clinimetric performance of paper/pencil versions of self reported health status measures was similar to an electronic version, using an inexpensive PDA.

Objective. The patient perspective workshops at the Outcome Measures in Rheumatology Clinical Trials have included daily measures of health status (patient diary) and use of electronic tools for data collection in the research agenda. The objective of this study was to compare daily and weekly registrations of self-reported health status measures between personal digital assistant (PDA) and paper-pencil (PP) format regarding scores, variation, and feasibility. Methods. Thirty-eight patients with stable rheumatoid arthritis recorded their health status during 84 days in a repeated crossover design, using PDA or PP format during four 21-day periods. Visual analog scales (VAS) for pain, fatigue, and global disease and the Rheumatoid Arthritis Disease Activity Index were scored daily; the Short Form 36 and Modified Health Assessment Questionnaire were scored weekly. Results. The average scores and measures of variation of the 4 daily health status measures over 21 days did not differ significantly between PDA and PP formats in either of the 2 crossover periods. The values for the average range between the maximum and minimum values for daily measures were similar between the 2 formats, but showed considerable variation (e.g., range for pain VAS was 19 -28 mm over each 21-day period). The time to complete the instruments was similar between the 2 formats. Missing daily data entries were generally low for both periods and somewhat higher for PDA. The majority of patients (82.9%) preferred using PDA. Conclusion. Daily assessments with PDA may be efficiently used for frequent data collection because this format performs similarly to the traditional PP format.

BackgroundPatients with inflammatory rheumatic diseases have expressed a need for more frequent measurement of relevant outcomes, due to the variations in their symptoms during the day and from day to day. At present, patient-reported outcomes are extensively collected with questionnaires completed with pen and paper. However, as a measurement tool in frequent data collection the questionnaires are impractical. In contrast, text messages on mobile phones are suitable for frequent data collection.The aim of this study was two-fold; to compare daily registrations of patient-reported outcomes assessed with text-messages on mobile phones (SMS) or with questionnaires completed with pen and paper (P&P), with regard to scores and variation of scores, and to examine feasibility of the SMS method in a multicentre clinical study.MethodsTo compare scores, 21 patients with an inflammatory, rheumatic disease performed daily assessments of pain, fatigue, stiffness and ability to carry out daily activities on a numeric rating scale (NRS). The patients were asked to assess the variables every other day with the SMS method and every other day with the P&P method for 28 consecutive days. In total each participant had to answer 14 P&P forms and 14 SMS messages. Mean scores and variation, expressed as the pooled standard deviation or as the average range between the maximum and minimum scores for the two methods, were compared using paired sample t-tests or Wilcoxon Signed Rank Test. To examine feasibility, 36 patients with an inflammatory, rheumatic disease assessed the same four variables with SMS twice a week for 35 weeks. Feasibility of the SMS method was expressed as mean response-rate (%) in the total group and per centre.ResultsMean scores, standard deviation of mean scores and mean range scores did not differ significantly between the two methods (p > 0.05). Response-rate with the SMS method was 97.9% for the whole group and for the three centres 97.1%, 98.3% and 98.4%, respectively.ConclusionOutcomes assessed on numeric rating scales and reported with text-messages on mobile phones or with questionnaires completed with pen and paper provide comparable scores. Further, the SMS method provided high response rates (> 97%) in a multicentre setting. Our results encourage the use of text messages on mobile phones in studies requiring frequent data collection and real-time assessment, as in fluctuating diseases such inflammatory, rheumatic diseases.

This pilot study has identified inadequacies in the transition management provided for young people with JIA. Acceptance of the young persons as active participants in their own transition process might strengthen these young persons' experience of an autonomous identity and enable participation socially and in society, thus enhancing the ability to achieve a meaningful adult life. Further investigations should focus on adults living with JIA, how they lead their lives physically and psychosocially.