Mainstream ICT Can Support Children and Adolescents with ADHD and/or Autism in Their Everyday Activities.

This exploratory case study investigated how ICT can support children with ADHD and/or autism and their families in their daily activities. We focus in particular on the suitability of mainstream technology for such support. Two cases are presented, and implications for practice are discussed. The findings indicate that mainstream ICT can be of assistance, but that its implementation can be challenging in particular in regards to elaborate technological setup routines, vulnerability to malfunction, and time needed for assessment, training and follow-up. The work continues in the ongoing R&D-project Is it possible?.

Collection of patient-reported outcomes;--text messages on mobile phones provide valid scores and high response rates.

BACKGROUND: Patients 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. METHODS: To 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. RESULTS: Mean 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. CONCLUSION: Outcomes 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.

From childhood to adult life with juvenile idiopathic arthritis (JIA): a pilot study.

PURPOSE: To explore the experiences of the health service provision in the transition process from childhood to adult life from the perspective of young patients with juvenile idiopathic arthritis (JIA) and health professionals working in this field. METHOD: Two groups of young persons with JIA and two groups of health professionals were interviewed in focus groups. The data were analysed according to approved guidelines for qualitative analysis. RESULTS: 'Capability to lead a meaningful adult life' emerged as a core category; capability as a consequence of 'being enabled' from the youths' point of view, and 'enabling the young patients' from the health professionals' perspective. Preparation for the transition and transfer process was perceived as inadequate and seemed dependent on enthusiastic health professionals both in the children's and adult wards. Suggestions for formal improvements were required in four main areas. CONCLUSION: 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.

Daily health status registration (patient diary) in patients with rheumatoid arthritis: a comparison between personal digital assistant and paper-pencil format.

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.

Despite technical problems personal digital assistants outperform pen and paper when collecting patient diary data.

OBJECTIVES: To assess how personal digital assistants (PDAs) perform as collection tools of patient-reported outcomes in clinical research compared to pen and paper (P&P) diaries in terms of feasibility, protocol compliance, data accuracy, and subject acceptability. STUDY DESIGN AND SETTING: A systematic review of randomized and quasi-randomized controlled trials comparing the PDA and P&P methods in a health diary context involving repeated measures in persons with chronic health problems. RESULTS: Nine studies were included. Their methodological quality was variable. Five studies reported on feasibility, and all reported technical difficulties with the PDA technology. Two studies reported that electronic collection leads to a substantial reduction in time used for data handling. Five studies reported that the PDA method results in better compliance, whereas one study reported the opposite. All three articles reporting on data accuracy indicated that there are fewer errors in the PDA records. Four articles scrutinized subject preference, and the PDA method came out favorably in all four. CONCLUSION: The PDA method seems to perform better than P&P in most of the selected outcomes. Technical malfunction is the chief disadvantage with the PDA method. Further research comparing PDA with paper data collection using more stringent methodology is needed.