Online assessment of ALS functional rating scale compares well to in-clinic evaluation: A prospective trial

Self-assessment of symptom progression in chronic diseases is of increasing importance in clinical research, patient management and specialized outpatient care. Against this background, we developed a secure internet platform (ALShome.de) that allows online assessment of the revised ALS Functional Rating Scale (ALSFRS-R) and other established self-assessment questionnaires. We developed a secure and closed internet portal to assess patient reported outcomes. In a prospective, controlled and stratified study, patients conducted a web-based self-assessment of ALSFRS-R compared to on-site assessment. On-site and online assessments were compared at baseline (n = 127) and after 3.5 months (n = 81, 64%). Results showed that correlation between on-site evaluation and online testing of ALSFRS-R was highly significant (r = 0.96; p < 0.001). The agreement of both capturing methods (online vs. on-site) was excellent (mean interval, 8.8 days). The adherence to online rating was high; 75% of patients tested on-site completed a follow-up online visit (mean 3.5 months, SD 1.7). We conclude that online self-assessment of ALS severity complements the well-established face-to-face application of the ALSFRS-R during on-site visits. The results of our study support the use of online administration of ALSFRS-R within clinical trials and for managing the care of ALS patients

Health Services Research in The Privacy Age

BACKGROUND: Strengthened regulations concerning privacy of health information are affecting large-scale health outcomes research. OBJECTIVE: To create a data collection system that would facilitate outcomes research, avoid selection bias, and fulfill obligations to protect privacy. DESIGN: We created a web-based system that uses touch-screen computer technology for longitudinal collection of data. The system provides access to information in deidentified form, enables it to be linked to health services and outcomes data, and allows patients to join a research registry project (RRP) and be placed on a prospective subject list (PSL). PARTICIPANTS, MEASUREMENTS, AND RESULTS: Pilot testing in 86 consecutive patients who were seen at a large, urban, university-based general medicine practice and had a mean age of 50 years showed that 81 patients had no difficulty, 5 had some difficulty, and none had considerable difficulty using the computer technology to complete a health survey. No patients refused to complete the survey and all patients completed the entire survey. Forty-seven (55%) joined the RRP and 42 of these 47 (89%) joined the PSL. RRP participants were less likely than RRP nonparticipants to be divorced or widowed (P=.03) and less likely to have hypertension (P=.03) but had no other significant differences in sociodemographic or clinical characteristics. PSL participants did not differ from PSL nonparticipants. CONCLUSIONS: The new system ensures privacy and appears to facilitate research recruitment and avoid selection bias

Can the Web-Form WHOQOL-BREF be an Alternative to the Paper-Form?

Comparison, Reliability, Validity, Web version, WHOQOL-BREF,