Engagement of patients with scleroderma to revise an internet self-management program

Systemic sclerosis (SSc) or scleroderma is a rare connective tissue disease. Many people do not have access to education programs. A self-management program was developed several years ago based on the literature and input from people with SSc. However, new therapies and treatment options have been developed since the program was developed. The purpose of this qualitative study was to identify and remedy gaps in an internet SSc self-management program to improve the quality of critical information relevant to effective management of the disease. Six focus groups with 30 participants with SSc were conducted: 2 telephone groups and 4 face-to-face groups. Prior to the focus group meetings, participants reviewed the existing website. A semi-structured interview guide elicited participants’ responses. Gaps were expressed in affect and positive affirmation; disease and symptom management; self-advocacy; information for caregivers, families, coworkers and strangers; tracking systems; information about local support groups; pictures and information on underrepresented groups; and general format. Discussants were positive regarding the audio voice over, exercise module, current content, health logs and checklists. People with SSc identified additional content to improve the internet self-management program. Many of the suggestions were incorporated into the existing program as modifications and additions to existing modules, patient testimonials, worksheets, resources sheets, and/or links to additional websites. People with rare, chronic conditions such as SSc need education and reliable sources of information and self-management skills. Experience Framework This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this len

Randomized Controlled Trial to Evaluate an Internet‐Based Self‐Management Program in Systemic Sclerosis

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/148240/1/acr23595.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/148240/2/acr23595_am.pd

sj-docx-1-jpx-10.1177_23743735231151768 - Supplemental material for Perspective of Patients and Stakeholders as Members of a Research Team

Supplemental material, sj-docx-1-jpx-10.1177_23743735231151768 for Perspective of Patients and Stakeholders as Members of a Research Team by Janet L Poole and Sharon L Newbill in Journal of Patient Experience</p

Perspective of Patients and Stakeholders as Members of a Research Team

Systemic sclerosis (SSc) is a rare orphan disease, characterized by skin thickening, vascular insufficiency, and fibrosis of internal organs. SSc affects about 100,000 people in the United States. This study explored perceived benefits and challenges of patient partners and stakeholders, who were team members on a project to revise and test a self-management program (Taking Charge of Systemic Sclerosis). Five patient partners, 1 stakeholder from the Scleroderma Foundation and 1 stakeholder from a state chapter of the Scleroderma Foundation were interviewed. Conversations were audio recorded and transcribed verbatim and analyzed. Four themes emerged from the analysis with corresponding subthemes: contributions to study, benefits of involvement, challenges, and project leadership. The themes and subthemes were generally similar to those expressed in other studies. However, additional benefits from engagement were identified: acceptance, increased knowledge of SSc, and helping others. Participants reported feeling supported and valued as members of the team and that their opinions mattered which is in contrast with findings from other studies

Randomized Controlled Trial to Evaluate an Internet-Based Self-Management Program in Systemic Sclerosis.

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