Background/Purpose: Taking Charge of Systemic Sclerosis (TOSS) is an internet self-management program developed for people with systemic sclerosis (SSc).  The purpose of this qualitative study was to engage patient partners, stakeholders and people with SSc in focus groups to assess whether the current program has the information people with SSc perceived they need to manage and effectively cope with their disease.

Methods:

Six focus groups with a total of 30 participants with SSc were conducted:  2 telephone groups and 4 face-to-face groups.  Prior to the focus group meetings, participants reviewed the current website.  A semi-structured interview guide was used to elicit participants’ responses about additional content needed. Interviews were audio-recorded and transcribed verbatim. Content analysis of de-identified open transcripts occurred in two stages: 1) initial coding by the qualitative researcher to create a coding structure using NVIVO version 10 software that conformed to the topics in the interview and/or focus group guides and 2) an iterative team process which verified and expanded the original coding into emergent themes and categories.  The principal investigator conducted an independent review of transcripts. Edits of the initial coding structure, internal audits and member checking were conducted through one discussion.

Results:

The participants were 63% female, 70% Caucasian, 23.3 % African American, 67% had diffuse systemic sclerosis, the mean age was 48.8 years, mean disease duration was 11.4 years, and the mean education level was 15.8 years. Each focus group lasted 2.0-2.5 hours in duration.   Dominant themes for additions to the current website: format changes and additional pictures,  additional materials on affect and positive affirmation; disease and symptom management;  self-advocacy;  information for use by caregivers, families, coworkers and strangers; tracking systems for medical records, tests and symptoms; and information about local support groups.  Although the focus group questions concentrated primarily on additional content needed, participants were positive regarding the audio voice over, exercise module, content, and the logs and checklists. 

Conclusion:

Persons with SSc identified additional content to improve the internet self-management program.  Many of the suggestions will be incorporated into the current program as modifications and additions to existing modules, patient testimonials, worksheets, resources sheets, and/or links to additional websites. 

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/use-of-focus-groups-and-patient-partners-to-revise-an-internet-self-management-program/