scholarly journals The Scleroderma Patient-Centered Intervention Network Self-Management Program: Protocol for a Randomized Feasibility Trial

10.2196/16799 ◽  
2020 ◽  
Vol 9 (4) ◽  
pp. e16799
Author(s):  
Marie-Eve Carrier ◽  
Linda Kwakkenbos ◽  
Warren R Nielson ◽  
Claire Fedoruk ◽  
Karen Nielsen ◽  
...  
Keyword(s):  
Disease Management ◽  
Self Efficacy ◽  
Management Program ◽  
Feasibility Trial ◽  
Self Management ◽  
Patient Centered ◽  
Web Based ◽  
Implementation Processes ◽  
Scleroderma Patient ◽  
Trial Implementation

Background Systemic sclerosis (SSc), or scleroderma, is a rare disease that often results in significant disruptions to activities of daily living and can negatively affect physical and psychological well-being. Because there is no known cure, SSc treatment focuses on reducing symptoms and disability and improving health-related quality of life (HRQoL). Self-management programs are known to increase self-efficacy for disease management in many chronic diseases. The Scleroderma Patient-centered Intervention Network (SPIN) developed a Web-based self-management program (SPIN self-management; SPIN-SELF) to increase self-efficacy for disease management and to improve HRQoL for patients with SSc. Objective The proposed study aims to assess the feasibility of conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF program by evaluating the trial implementation processes, required resources and management, scientific aspects, and participant acceptability and usage of the SPIN-SELF program. Methods The SPIN-SELF feasibility trial will be conducted via the SPIN Cohort. The SPIN Cohort was developed as a framework for embedded pragmatic trials using the cohort multiple RCT design. In total, 40 English-speaking SPIN Cohort participants with low disease management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale score ≤7), who have indicated interest in using a Web-based self-management program, will be randomized with a 3:2 ratio into the SPIN-SELF program or usual care for 3 months. Feasibility outcomes include trial implementation processes, required resources and management, scientific aspects, and patient acceptability and usage of the SPIN-SELF program. Results Enrollment of the 40 participants occurred between July 5, 2019, and July 27, 2019. By November 25, 2019, data collection of trial outcomes was completed. Data analysis is underway, and results are expected to be published in 2020. Conclusions The SPIN-SELF program is a self-help tool that may improve disease-management self-efficacy and improve HRQoL in patients with SSc. The SPIN-SELF feasibility trial will ensure that trial methodology is robust, feasible, and consistent with trial participant expectations. The results will guide adjustments that need to be implemented before undertaking a full-scale RCT of the SPIN-SELF program. International Registered Report Identifier (IRRID) DERR1-10.2196/16799

scholarly journals The Scleroderma Patient-Centered Intervention Network Self-Management Program: Protocol for a Randomized Feasibility Trial (Preprint)

2019 ◽  
Author(s):  
Marie-Eve Carrier ◽  
Linda Kwakkenbos ◽  
Warren R Nielson ◽  
Claire Fedoruk ◽  
Karen Nielsen ◽  
...  
Keyword(s):  
Disease Management ◽  
Self Efficacy ◽  
Management Program ◽  
Feasibility Trial ◽  
Self Management ◽  
Patient Centered ◽  
Web Based ◽  
Implementation Processes ◽  
Scleroderma Patient ◽  
Trial Implementation

BACKGROUND Systemic sclerosis (SSc), or scleroderma, is a rare disease that often results in significant disruptions to activities of daily living and can negatively affect physical and psychological well-being. Because there is no known cure, SSc treatment focuses on reducing symptoms and disability and improving health-related quality of life (HRQoL). Self-management programs are known to increase self-efficacy for disease management in many chronic diseases. The Scleroderma Patient-centered Intervention Network (SPIN) developed a Web-based self-management program (SPIN self-management; SPIN-SELF) to increase self-efficacy for disease management and to improve HRQoL for patients with SSc. OBJECTIVE The proposed study aims to assess the feasibility of conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF program by evaluating the trial implementation processes, required resources and management, scientific aspects, and participant acceptability and usage of the SPIN-SELF program. METHODS The SPIN-SELF feasibility trial will be conducted via the SPIN Cohort. The SPIN Cohort was developed as a framework for embedded pragmatic trials using the cohort multiple RCT design. In total, 40 English-speaking SPIN Cohort participants with low disease management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale score ≤7), who have indicated interest in using a Web-based self-management program, will be randomized with a 3:2 ratio into the SPIN-SELF program or usual care for 3 months. Feasibility outcomes include trial implementation processes, required resources and management, scientific aspects, and patient acceptability and usage of the SPIN-SELF program. RESULTS Enrollment of the 40 participants occurred between July 5, 2019, and July 27, 2019. By November 25, 2019, data collection of trial outcomes was completed. Data analysis is underway, and results are expected to be published in 2020. CONCLUSIONS The SPIN-SELF program is a self-help tool that may improve disease-management self-efficacy and improve HRQoL in patients with SSc. The SPIN-SELF feasibility trial will ensure that trial methodology is robust, feasible, and consistent with trial participant expectations. The results will guide adjustments that need to be implemented before undertaking a full-scale RCT of the SPIN-SELF program. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/16799

scholarly journals Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation (Preprint)

2019 ◽  
Author(s):  
Sonya Allin ◽  
John Shepherd ◽  
Teri Thorson ◽  
Jennifer Tomasone ◽  
Sarah Munce ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Mixed Methods ◽  
Self Efficacy ◽  
Management Program ◽  
Self Management ◽  
Web Based ◽  
Secondary Conditions ◽  
Cord Injury ◽  
Before And After

BACKGROUND Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called <i>SCI &amp; U</i>. OBJECTIVE This study aims to evaluate the feasibility and potential impact of the <i>SCI &amp; U</i> program in the context of a mixed methods pilot study. METHODS The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative RESULTS Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g&gt;0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g&gt;0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. CONCLUSIONS Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial.

scholarly journals Web-Based Health Coaching for Spinal Cord Injury: Results From a Mixed Methods Feasibility Evaluation

10.2196/16351 ◽  
2020 ◽  
Vol 7 (2) ◽  
pp. e16351
Author(s):  
Sonya Allin ◽  
John Shepherd ◽  
Teri Thorson ◽  
Jennifer Tomasone ◽  
Sarah Munce ◽  
...  
Keyword(s):  
Spinal Cord ◽  
Spinal Cord Injury ◽  
Mixed Methods ◽  
Self Efficacy ◽  
Management Program ◽  
Self Management ◽  
Web Based ◽  
Secondary Conditions ◽  
Cord Injury ◽  
Before And After

Background Individuals with spinal cord injury (SCI) are at high risk of experiencing secondary conditions like pressure injuries. Self-management programs may reduce the risk of complications, but traditional programs have proven to be insufficiently tailored to the needs of people with SCI. To overcome barriers to self-management support, a web-based, self-management program was developed for Canadians with SCI called SCI & U. Objective This study aims to evaluate the feasibility and potential impact of the SCI & U program in the context of a mixed methods pilot study. Methods The study followed an explanatory, sequential mixed methods design. Participants (N=11) were Canadians with SCI who had been living in the community for more than 1 year. Each took part in a self-paced, six-session self-management program guided by a trained peer health coach. During sessions, participants could discuss a health topic with their coach from a predefined list (eg, skin or bowel management). Quantitative data were gathered before and after program participation to assess program feasibility and impact. Feasibility measures included attrition rates, frequency of topics selected, and recorded goals, whereas impact measures included measures of self-efficacy (University of Washington Self-Efficacy Scale [UW-SES]), mood (Personal Health Questionnaire Depression Scale [PHQ-8]), secondary conditions (Spinal Cord Injury Secondary Conditions Scale [SCI-SCS]), and resilience (Spinal Cord Injury Quality of Life Resilience Scale [SCI-QOL-R]). Qualitative measures were based on postintervention interviews; these were designed to confirm and expand on quantitative Results Of the 11 participants, 10 completed pre- and postassessments, and 6 coaching sessions. Sessions lasted between 31 and 81 min (average 55, SD 13), and the duration of the program ranged from 35 to 88 days (average 56, SD 23). Diet and exercise were selected as topics 40% (20/50 sessions with topics) of the time, whereas topics such as mental health, bladder management, pain, and bowel management were chosen less frequently. Results gathered before and after the pilot study demonstrated improvements with moderate effect sizes on the UW-SES and the electronic health literacy scale (ie, Hedges g>0.5). Effect sizes for measures of resilience (SCI-QOL-R), depression (PHQ-8), and secondary conditions (SCI-SCS) were small (ie, Hedges g>0.3). Qualitative results confirmed a common focus on diet and exercise, and defined coaches as sources of accountability, information, reassurance and affirmation, and emotional and technical support. Conclusions Results demonstrated that a web-based self-management program is feasible and acceptable by Canadians with SCI. Results also indicated a web-based, peer-led self-management program may impact resilience, self-efficacy, mood, and secondary complications. Finally, results illuminated the role of the coach in facilitating behavior change. Future work seeks to validate results in the context of a randomized controlled trial.

scholarly journals Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) program: non-randomised feasibility trial

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e029935 ◽  
Author(s):  
Brett D Thombs ◽  
Laura Dyas ◽  
Mia Pépin ◽  
Kylene Aguila ◽  
Marie-Eve Carrier ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Emotional Distress ◽  
Support Group ◽  
Self Efficacy ◽  
Group Leader ◽  
Feasibility Trial ◽  
Group Leaders ◽  
Patient Centered ◽  
Patient Organisations ◽  
Scleroderma Patient

ObjectivesThe Scleroderma Patient-centered Intervention Network—Scleroderma Support group Leader EDucation (SPIN-SSLED) Programme was designed to improve confidence and self-efficacy and to reduce burden for support group leaders. Objectives were to (1) evaluate feasibility of programme delivery, including required resources, management issues and scientific aspects (eg, performance of outcome measures) and (2) assess user satisfaction and identify any modifications needed to improve programme content or delivery based on participant feedback.DesignNon-randomised feasibility trial.SettingNorth American patient organisations.ParticipantsCurrent support group leaders or potential new leaders referred by patient organisations.InterventionThe programme included 13 modules delivered live via videoconference over 3 months (April to July 2018) in 60 to 90 min sessions.Outcome measures(1) Elements of feasibility, including enrolment and consent procedures, percentage of referred group leaders who consented to participate, session attendance and technical support requirements; (2) programme usability, understandability, organisation and clarity; (3) leader satisfaction with the programme and (4) planned trial outcome measures, including support group leader self-efficacy, burnout, emotional distress and physical function.ResultsAll 12 referred potential participants consented to enrol, and 10 were included in two training groups of five participants each. Participants attended 95% of sessions. Required technical support was minimal, and videoconferencing technology functioned well. Overall programme satisfaction rating was 9.4/10. Mean item rating on the eight items of the Client Satisfaction Questionnaire-8 was 3.83 (1=low satisfaction; 4=high satisfaction). Pre-post scores on the Scleroderma Support Group Leader Self-efficacy Scale increased by 1.7 SDs (large effect); scores on burnout, emotional distress and physical function improved by 0.44, 0.38 and 0.45 SDs (moderate effects).ConclusionThe SPIN-SSLED Programme was feasibly delivered, including management, resource and scientific aspects. Participant satisfaction was high. The programme is ready to be tested in a full-scale randomised controlled trial.Trial registration numberNCT03508661

scholarly journals Self-Management in Stroke Survivors: Development and Implementation of the Look after Yourself (LAY) Intervention

2021 ◽  
Vol 18 (11) ◽  
pp. 5925
Author(s):  
Stefania Fugazzaro ◽  
Monica Denti ◽  
Monia Allisen Accogli ◽  
Stefania Costi ◽  
Donatella Pagliacci ◽  
...  
Keyword(s):  
Self Efficacy ◽  
Stroke Rehabilitation ◽  
Cognitive Theory ◽  
Management Program ◽  
Self Management ◽  
Stroke Survivors ◽  
Extensive Literature ◽  
Action Plans ◽  
Patient Centered ◽  
The Look

Objective: Self-management is recommended in stroke rehabilitation. This report aims to describe timing, contents, and setting of delivery of a patient-centered, self-management program for stroke survivors in their early hospital rehabilitation phase: the Look After Yourself (LAY) intervention. Methods: After extensive literature search, the LAY intervention was developed by integrating the Chronic Disease Self-Management Program, based on the self-efficacy construct of social cognitive theory, with evidence-based key elements and input from stroke survivors. Results: the LAY intervention aims to implement self-management skills in stroke survivors, enabling them to be active in goal setting and problem solving using action plans and to facilitate the critical transition from hospital to community. It includes both group sessions to facilitate sharing of experiences, social comparison, vicarious learning, and increase motivation and one-to-one sessions focused on setting feasible action plans and on teaching personalized strategies to prevent falls. Standardization is ensured by manuals for facilitators and patients. Conclusion: The LAY intervention is the first Italian program to support early self-management in stroke rehabilitation; it has been experimented and its efficacy proven in improving self-efficacy, mental health, and activities of daily living, and detailed results have been published. The LAY intervention is described according to the TIDieR checklist.

scholarly journals A Worksite Self-management Program for Workers with Chronic Health Conditions Improves Worker Engagement and Retention, but not Workplace Function

2021 ◽  
Author(s):  
William S. Shaw ◽  
Robert K. McLellan ◽  
Elyssa Besen ◽  
Sara Namazi ◽  
Michael K. Nicholas ◽  
...  
Keyword(s):  
Job Satisfaction ◽  
Work Engagement ◽  
Self Efficacy ◽  
Management Program ◽  
Chronic Health Conditions ◽  
Health Conditions ◽  
Self Management ◽  
Chronic Health ◽  
Work Limitation

AbstractPurpose An increasing number of workers in the US have chronic health conditions that limit their ability to work, and few worksite interventions have been tested to improve worker coping and problem solving at work. The purpose of this study was to evaluate a worksite-based health self-management program designed to improve workplace function among workers with chronic health conditions. Methods We conducted a randomized, controlled trial of a worksite self-management program (“Manage at Work”) (clinicaltrials.gov #NCT01978392) for workers with chronic health conditions (N = 119; 82% female, ages 20–69). Most workers were recruited from the health care or light manufacturing industry sectors. Workers attended a 5-session, facilitated psychoeducational program using concepts of health self-management, self-efficacy, ergonomics, and communication. Changes on outcomes of work engagement, work limitation, job satisfaction, work fatigue, work self-efficacy, days absent, and turnover intention at 6-month follow-up were compared to wait-list controls. Results The most prevalent chronic health conditions were musculoskeletal pain, headaches, vision problems, gastrointestinal disorders, respiratory disorders, and mental health disorders. The self-management program showed greater improvement in work engagement and turnover intent at 6-month follow-up, but there was no evidence of a parallel reduction in perceived work limitation. Trends for improved outcomes of work self-efficacy, job satisfaction, and work fatigue in the intervention group did not reach statistical significance in a group x time interaction test. Conclusions Offering a worksite self-management program to workers with chronic health conditions may be a feasible and beneficial strategy to engage and retain skilled workers who are risking disability.Clinical trial registration: Clinicaltrials.gov #NCT01978392.

Self-management factors associated with quality of life among women with endometriosis: a cross-sectional Australian survey

2020 ◽  
Author(s):  
Rebecca O’Hara ◽  
Heather Rowe ◽  
Jane Fisher
Keyword(s):  
Quality Of Life ◽  
Chronic Disease ◽  
Disease Management ◽  
Self Efficacy ◽  
Chronic Disease Management ◽  
Self Management ◽  
Cross Sectional ◽  
Female Population ◽  
Management Factors

Abstract STUDY QUESTION What self-management factors are associated with quality of life among women with endometriosis? SUMMARY ANSWER Greater self-efficacy was associated with improved physical and mental quality of life. WHAT IS KNOWN ALREADY Women with endometriosis have an impaired quality of life compared to the general female population. However, most studies have investigated quality of life in a hospital or clinic setting rather than a community setting and the association between self-management factors and quality of life have not, to date, been investigated. STUDY DESIGN, SIZE, DURATION A cross-sectional, population-based online survey was performed, which was advertised through women’s, community and endometriosis-specific groups. PARTICIPANTS/MATERIALS, SETTING, METHODS A total of 620 women completed the survey for this study. Mental and physical quality of life was assessed using the standardized SF36v2 questionnaire. Self-management factors included self-efficacy, partners in health (active involvement in managing the condition) and performance of self-care activities. Treatment approaches included the use of hormonal treatment, pain medications and complementary therapies and whether the participant had a chronic disease management plan. Hierarchical regression analyses were used to examine whether self-management and treatment factors were associated with quality of life. MAIN RESULTS AND THE ROLE OF CHANCE Both physical and mental quality of life were significantly lower among women with endometriosis compared to the mean scores of the general Australian female population (P &lt; 0.001). Physical quality of life was positively associated with income sufficiency (P &lt; 0.001) and greater self-efficacy (P &lt; 0.001), but negatively associated with age (P &lt; 0.001), pain severity (P &lt; 0.001), use of prescription medications (P &lt; 0.001), having a chronic disease management plan (P &lt; 0.05) and number of self-care activities (P &lt; 0.05). Mental quality of life was positively associated with being older (P &lt; 0.001), partnered (P &lt; 0.001), having a university education (P &lt; 0.05), increasing self-efficacy (P &lt; 0.001) and higher partners in health scores (P &lt; 0.001). LIMITATIONS, REASONS FOR CAUTION Results are derived from a cross-sectional study and can only be interpreted as associations not as causal relationships. The sample was more educated, more likely to speak English and be born in Australia than the general Australian female population of the same age, which may influence the generalizability of these results. WIDER IMPLICATIONS OF THE FINDINGS This study investigated a knowledge gap by investigating quality of life of women with endometriosis in a large community sample. Self-efficacy was significantly associated with both physical and mental quality of life. Supporting women with endometriosis to improve self-efficacy through a structured chronic disease management programme may lead to improvements in this aspect of wellbeing. STUDY FUNDING/COMPETING INTEREST(S) R.O. undertook this research as part of her PhD at Monash University, which was supported by an Australian Government Research Training Program Stipend. J.F. is the Finkel Professor of Global Public Health, which was supported by the Finkel Family Foundation. There are no conflicts of interest to declare. TRIAL REGISTRATION NUMBER NA.

Impacts on patient-centered outcomes of a chronic pain self-management program in a rural community: A feasibility study

2021 ◽  
Vol 42 (5) ◽  
pp. 1198-1203
Author(s):  
Zenong Yin ◽  
Shiyu Li ◽  
Catherine Ortega ◽  
Raudel Bobadilla ◽  
Paula L. Winkler ◽  
...  
Keyword(s):  
Chronic Pain ◽  
Feasibility Study ◽  
Rural Community ◽  
Management Program ◽  
Self Management ◽  
Patient Centered
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