{
  "abstract": "Objectives There is increasing recognition of the need for patient-centred lupus self-management (SM) programmes to improve outcomes. The purpose of this manuscript is to describe the underlying methodology and initial pilot results of Strategies to Embrace Living with Lupus Fearlessly (SELF): an evidence-based digital SM intervention designed for individuals with lupus based on the Transtheoretical Model of Behaviour Change.Methods We describe pilot testing and initial feasibility and acceptability results of SELF among individuals with lupus. Participants for the 90-day pilot test were recruited through three Centers for Disease Control & Prevention-funded lupus registry sites across the USA and the Lupus Foundation of America’s constituency, including a diverse sociodemographic lupus population, using varied sources. Feasibility, acceptability and preliminary impact were assessed using data on enrolment, retention, ease of utilisation and satisfaction with SELF’s features, changes in readiness for SM behaviours, impact on patient-reported outcomes (eg, fatigue interference) and user feedback.Results Nearly 80% of participants had moderate or high skill gaps at programme intake (ie, were in an early stage of change for a key SM skill), underscoring the importance of digital SM programmes like SELF. Among those who completed the programme, almost 60% of participants closed a skill gap by mastering one or more SM skills. Significant effects on patient–provider interactions and fatigue interference were also noted, highlighting a need for future investigation. Qualitative data were mostly positive in terms of feasibility and acceptability, with specific recommendations for future improvement.Conclusions SELF utilisation and pilot data indicate that SELF is generally feasible and acceptable, particularly among those needing to build lupus SM skills. Future work will explore ways to improve the digital SM intervention and reduce barriers to initial and ongoing engagement.",
  "authors": [
    {
      "affiliations": [
        "Wayfinder Health Strategies, Falls Church, Virginia, USA",
        "Clinical Research and Leadership, The George Washington University, Washington, District of Columbia, USA"
      ],
      "name": "Sarah D Gilman"
    },
    {
      "affiliations": [
        "Pro-Change Behavior Systems Inc, Kingston, Rhode Island, USA"
      ],
      "name": "Sara Johnson"
    },
    {
      "affiliations": [
        "Lupus Foundation of America Inc, Washington, District of Columbia, USA"
      ],
      "name": "Katherine Carpenter"
    },
    {
      "affiliations": [
        "Lupus Foundation of America Inc, Washington, District of Columbia, USA"
      ],
      "name": "Melissa French"
    },
    {
      "affiliations": [
        "Pro-Change Behavior Systems Inc, Kingston, Rhode Island, USA"
      ],
      "name": "Patricia Castle"
    },
    {
      "affiliations": [
        "Division of Rheumatology, Emory University School of Medicine, Atlanta, Georgia, USA"
      ],
      "name": "S Sam Lim"
    },
    {
      "affiliations": [
        "Division of Rheumatology, Emory University School of Medicine, Atlanta, Georgia, USA"
      ],
      "name": "Charmayne Dunlop-Thomas"
    },
    {
      "affiliations": [
        "Division of Rheumatology, Emory University School of Medicine, Atlanta, Georgia, USA"
      ],
      "name": "Cristina Drenkard"
    },
    {
      "affiliations": [
        "UCSF, San Francisco, California, USA"
      ],
      "name": "Maria Dall’Era"
    },
    {
      "affiliations": [
        "University of Michigan-Ann Arbor, Ann Arbor, Michigan, USA"
      ],
      "name": "Emily C Somers"
    },
    {
      "affiliations": [
        "University of Michigan-Ann Arbor, Ann Arbor, Michigan, USA"
      ],
      "name": "Suzanna Zick"
    },
    {
      "affiliations": [
        "Lupus Foundation of America Inc, Washington, District of Columbia, USA"
      ],
      "name": "Melicent Miller"
    },
    {
      "affiliations": [
        "Rheumatology, Cedars-Sinai Medical Center, West Hollywood, California, USA"
      ],
      "name": "Daniel J Wallace"
    },
    {
      "affiliations": [
        "Department of Dermatology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA",
        "Philadelphia Veteran’s Administration Medical Center, Philadelphia, Pennsylvania, USA"
      ],
      "name": "Victoria P Werth"
    },
    {
      "affiliations": [
        "Lupus Foundation of America Inc, Washington, District of Columbia, USA"
      ],
      "name": "Mary Crimmings"
    }
  ],
  "title": "Programme evaluation of Strategies to Embrace Living with Lupus Fearlessly (SELF): an evidence-based digital programme to build and improve lupus self-management skills",
  "uid": "b5ddf314-b5f5-5749-b645-301cf3f9d11f"
}