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Taking charge of systemic sclerosis: improving patient outcomes through self-management
Investigator (PI): Poole, Janet
Performing Organization (PO): (Current): University of New Mexico, School of Medicine, Department of Pediatrics / (505) 277-0111
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2014
Final Year: 2019
Record Source/Award ID: PCORI/CER-1310-08323
Funding: Total Award Amount: $1,807,030
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Abstract: Background: Systemic scleroderma is a rheumatic disease that causes fibrosis in the skin and internal organs. Early screening and treatment has led to better survival and outlook of the disease. However, physical and mental challenges and lack of support groups in smaller (and large) cities makes it very difficult for patients to gain accurate knowledge and be proactive in management of scleroderma. We developed an Internet self-management program and pilot tested it with a small group of scleroderma patients. This pilot study showed encouraging results in improving patient-centered outcomes. However, the findings need to be confirmed in a larger comparative study. Objectives: The long-term objective of this study is to assess the effectiveness of the Internet self-management program. Specific aims are to 1) evaluate and refine the current self-management program with input from scleroderma patients and stakeholders and 2) to assess whether the Internet-based self-management program is superior to the control condition in improving patient-centered outcomes. Methods: Focus groups will be conducted with patient partners, stakeholders, and patients with scleroderma to review the current version of the self-management program and recommend changes. Based on their feedback and with their input, we will refine the current content and develop additional content, videos, resources, etc. We will then recruit 250 people with scleroderma who will be randomly assigned to a control (N=125) or intervention group (N=125). The intervention group will be directed to a website and complete the modules of the self-management program and participate in the discussion boards. The control group will read the authoritative book, The Scleroderma Book. Changes in patient-centered outcomes such as self-efficacy, confidence in managing their condition, disability, depression, pain, quality of life, and use of medical services will be assessed. Patient outcomes (projected): The research project addresses the patient-centered question, what can I do to improve the outcomes that are most important to me? The self-management program should improve self-efficacy, health efficacy, ability to manage care, functional ability, and decreased depression, pain, and fatigue, all critical in the management of untreatable disease. Improvement in these outcomes and increased knowledge and skills to manage their disease will empower scleroderma patients to make informed decisions regarding their health care and advocate for needed services. Patient partners and stakeholders will review the current Internet program, recommend and develop additional content, recruit participants for focus groups and the randomized control trial, review the findings with the research team, and disseminate findings at patient conferences.
MeSH Terms:
  • Focus Groups
  • Humans
  • Internet
  • Outcome Assessment, Health Care
  • Patient-Centered Care
  • Pilot Projects
  • Quality of Life
  • Randomized Controlled Trials as Topic
  • Scleroderma, Systemic /*therapy
  • Self Care /*methods
  • Treatment Outcome
Country: United States
State: New Mexico
Zip Code: 87131
UI: 20152188
Project Status: Completed
Record History: ('2019: Project extended to 2019 ',) ('2017: Project extended to 2018',)