Dinesh Khanna1, Jennifer Serrano1, Veronica J Berrocal1, Richard M Silver2, Pedro Cuencas3, Sharon L Newbill4, Josephine Battyany5, Cynthia Maxwell6, Mary Alore7, Laura Dyas8, Robert Riggs9, Kerri Connolly9, Saville Kellner10, Jody J Fisher1, Erica Bush1, Anjali Sachdeva11, Luke Evnin12, Dennis W Raisch13, Janet L Poole13. 1. University of Michigan, Ann Arbor. 2. Medical University of South Carolina, Charleston. 3. Local Leverage Media, Dallas, Texas. 4. Folkstone Evaluation Anthropology, Pace, Florida. 5. Scleroderma Foundation Southern California Chapter, Culver City, California. 6. Johns Island, South Carolina. 7. Shelby Township, Michigan. 8. Scleroderma Foundation Michigan Chapter, Southfield. 9. National Scleroderma Foundation, Danvers, Massachusetts. 10. Lake Industries, Revenue Media Group, and JLS Financial Inc., Henderson, Nevada. 11. University of Pittsburgh, Pittsburgh, Pennsylvania. 12. MPM Capital, Boston, Massachusetts, and Scleroderma Research Foundation, San Francisco, California. 13. University of New Mexico, Albuquerque.
Abstract
OBJECTIVE: In a pilot study, our group showed that an internet-based self-management program improves self-efficacy in systemic sclerosis (SSc). The objective of the current study was to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in patients with SSc. METHODS: We conducted a 16-week randomized, controlled trial. RESULTS: Of the 267 participants who completed baseline questionnaires and were randomized to the intervention (internet: www.selfmanagescleroderma.com) or control (book) group, 123 participants (93%) in the internet group and 124 participants (94%) in the control group completed the 16-week randomized controlled trial (RCT). The mean ± SD age of all participants was 53.7 ± 11.7 years, 91% were women, and 79.4% had some college or a higher degree. The mean ± SD disease duration after diagnosis of SSc was 8.97 ± 8.50 years. There were no statistical differences between the 2 groups for the primary outcome measure (Patient-Reported Outcomes Measurement Information System Self-Efficacy for Managing Symptoms: mean change of 0.35 in the internet group versus 0.94 in the control group; P = 0.47) and secondary outcome measures, except the EuroQol 5-domain instrument visual analog scale score (P = 0.05). Internet group participants agreed that the self-management modules were of importance to them, the information was presented clearly, and the website was easy to use and at an appropriate reading level. CONCLUSION: Our RCT showed that the internet-based self-management website was not statistically superior to an educational patient-focused book in improving self-efficacy and other measures. The participants were enthusiastic about the content and presentation of the self-management website.
RCT Entities:
OBJECTIVE: In a pilot study, our group showed that an internet-based self-management program improves self-efficacy in systemic sclerosis (SSc). The objective of the current study was to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in patients with SSc. METHODS: We conducted a 16-week randomized, controlled trial. RESULTS: Of the 267 participants who completed baseline questionnaires and were randomized to the intervention (internet: www.selfmanagescleroderma.com) or control (book) group, 123 participants (93%) in the internet group and 124 participants (94%) in the control group completed the 16-week randomized controlled trial (RCT). The mean ± SD age of all participants was 53.7 ± 11.7 years, 91% were women, and 79.4% had some college or a higher degree. The mean ± SD disease duration after diagnosis of SSc was 8.97 ± 8.50 years. There were no statistical differences between the 2 groups for the primary outcome measure (Patient-Reported Outcomes Measurement Information System Self-Efficacy for Managing Symptoms: mean change of 0.35 in the internet group versus 0.94 in the control group; P = 0.47) and secondary outcome measures, except the EuroQol 5-domain instrument visual analog scale score (P = 0.05). Internet group participants agreed that the self-management modules were of importance to them, the information was presented clearly, and the website was easy to use and at an appropriate reading level. CONCLUSION: Our RCT showed that the internet-based self-management website was not statistically superior to an educational patient-focused book in improving self-efficacy and other measures. The participants were enthusiastic about the content and presentation of the self-management website.
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