Sarah D Gilman, Sara Johnson, Katherine Carpenter, Melissa French, Patricia Castle, S Sam Lim, Charmayne Dunlop-Thomas, Cristina Drenkard, Maria Dall'Era, Emily C Somers, Suzanna Zick, Melicent Miller, Daniel J Wallace, Victoria P Werth, Mary Crimmings
{"title":"无所畏惧地接受狼疮生活策略（SELF）的项目评估：一个基于证据的数字项目，旨在建立和提高狼疮自我管理技能。","authors":"Sarah D Gilman, Sara Johnson, Katherine Carpenter, Melissa French, Patricia Castle, S Sam Lim, Charmayne Dunlop-Thomas, Cristina Drenkard, Maria Dall'Era, Emily C Somers, Suzanna Zick, Melicent Miller, Daniel J Wallace, Victoria P Werth, Mary Crimmings","doi":"10.1136/lupus-2025-001580","DOIUrl":null,"url":null,"abstract":"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":18126,"journal":{"name":"Lupus Science & Medicine","volume":"12 2","pages":""},"PeriodicalIF":3.5000,"publicationDate":"2025-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12506456/pdf/","citationCount":"0","resultStr":"{\"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.\",\"authors\":\"Sarah D Gilman, Sara Johnson, Katherine Carpenter, Melissa French, Patricia Castle, S Sam Lim, Charmayne Dunlop-Thomas, Cristina Drenkard, Maria Dall'Era, Emily C Somers, Suzanna Zick, Melicent Miller, Daniel J Wallace, Victoria P Werth, Mary Crimmings\",\"doi\":\"10.1136/lupus-2025-001580\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objectives: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>\",\"PeriodicalId\":18126,\"journal\":{\"name\":\"Lupus Science & Medicine\",\"volume\":\"12 2\",\"pages\":\"\"},\"PeriodicalIF\":3.5000,\"publicationDate\":\"2025-10-07\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12506456/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Lupus Science & Medicine\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1136/lupus-2025-001580\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"RHEUMATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Lupus Science & Medicine","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1136/lupus-2025-001580","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"RHEUMATOLOGY","Score":null,"Total":0}
Programme evaluation of Strategies to Embrace Living with Lupus Fearlessly (SELF): an evidence-based digital programme to build and improve lupus self-management skills.
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.
期刊介绍：
Lupus Science & Medicine is a global, peer reviewed, open access online journal that provides a central point for publication of basic, clinical, translational, and epidemiological studies of all aspects of lupus and related diseases. It is the first lupus-specific open access journal in the world and was developed in response to the need for a barrier-free forum for publication of groundbreaking studies in lupus. The journal publishes research on lupus from fields including, but not limited to: rheumatology, dermatology, nephrology, immunology, pediatrics, cardiology, hepatology, pulmonology, obstetrics and gynecology, and psychiatry.
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