Disease Management Self-efficacy Research Articles

Structural equation modeling of the impact of disease activity on inflammatory bowel disease control: the mediating roles of self-efficacy and self-management behaviors

BackgroundMaintaining effective disease control in patients with inflammatory bowel disease (IBD) is both a significant goal and challenge. Drawing on the Common-Sense Model of Self-Regulation (CSM) and related research, this study investigates how IBD activity status influences disease control through both direct and indirect pathways.MethodsA cross-sectional survey was conducted among 310 IBD patients who attended a tertiary general hospital, the leader of the IBD Alliance Group in Chongqing City, between March and August 2024. Structural equation modeling (SEM) was utilized to assess the role and magnitude of various influencing factor pathways. Relying on AMOS26 software, the path effects and magnitude of various factors in the disease control process were analyzed using structural equation modeling (SEM) to test hypothetical models.ResultsA total of 306 valid questionnaires were collected, with a mean IBD-control score of 12.14 ± 3.665. There was a negative link between disease activity and IBD-control (P < 0.01) and a positive correlation between chronic illness management self-efficacy, IBD self-management behavior, and IBD-control (P < 0.01). Path analysis showed that IBD activity negatively predicted IBD control (β = -0.715, P = 0.01). Chronic disease management self-efficacy partially mediated this relationship (β = -0.071, P = 0.012). A significant chain-mediated pathway was identified, where IBD activity affected IBD control via self-efficacy guided by self-management behavior (β = -0.025, P = 0.007). However, the pathway where IBD activity influenced control through self-efficacy and subsequently self-management behavior showed only marginal significance (P = 0.074).ConclusionEffective self-management behaviors improve IBD control. High disease activity may reduce chronic disease management self-efficacy, impairing IBD control. Positive feedback loops involving self-management behaviors and enhanced self-efficacy are crucial for better disease control, as patients who perceive positive outcomes are more motivated to maintain these behaviors.

Perceived Vulnerability to Disability-Related Victimization in People With Multiple Sclerosis: Community Survey on Risk and Protective Factors.

The perception that one is at increased risk of interpersonal victimization or violence can deleteriously affect community participation and quality of life. Race, sex, and disability status, often associated with use of an assistive mobility device (AD), are known correlates of perceived risk of victimization; however, almost no research has explored how these variables intersect for individuals with multiple sclerosis (MS), and none have sought to identify potential risk and protective factors. Data for the present study come from a single time point derived from a 10-year longitudinal survey of 446 individuals with MS. Lifetime trauma exposure, personal resilience and self-efficacy, control over participation, and perceived risk of interpersonal victimization due to disability were all assessed via self-report. Statistical analyses included analysis of covariance with participants stratified by race/ethnicity, sex, and AD use. After controlling for lifetime trauma exposure and severity of physical impairment, the use of an AD was significantly associated with greater perceived risk of victimization due to disability. Further, people with MS from racial and ethnic minority groups who used ADs had the highest perceived risk relative to all other groups. Higher levels of perceived risk were associated with a lower sense of control over community participation, lower resilience, and lower disease management self-efficacy. Visible indicators of disability may contribute to perceptions of vulnerability, especially among people with MS who are racially and ethnically marginalized. Clinicians should be aware of how perceived vulnerability may impact a sense of control over community participation, particularly when educating patients on AD use.

Sleep quality and self-efficacy for managing chronic disease: A cross-sectional study in the elderly Population in Edirne Province

Objective: To examine the relationship between sleep quality and self-efficacy for managing chronic diseases in elderly individuals living at home in Edirne province. Methods: In this cross-sectional study, the data was collected through simple random sampling and home visits from 244 individuals aged 60 years and older between March and December 2018. The Pittsburgh Sleep Quality Index, the Self-Efficacy for Managing Chronic Disease 6-Item Scale, and the Interview Form were used in the study. The data was collected using descriptive analysis, t-test, one-way ANOVA, Pearson correlation, and linear regression analysis. Results: Most of the individuals (86.1%) had poor sleep quality and the mean Pittsburgh Sleep Quality Index total score was 7.16±3.04. The mean of Self-Efficacy for Managing Chronic Disease 6-Item Scale total score was 4.82±1.79. Sleep quality was worse in individuals who were women, single, retired, perceiving their health as bad, and with comorbidities (p˂0.05). There was a negative and significant relationship between the scales in correlation and regression analyses (p˂0.05). Conclusions: Self-efficacy in chronic disease management was an important factor in improving sleep quality. Healthcare professionals must be knowledgeable and experienced in practices that increase self-efficacy in primary care.

Perceptions of Illness Control, Coherence, and Self-Efficacy Following a Web-Based Lifestyle Program for Multiple Sclerosis: A Qualitative Analysis of Semistructured Interviews.

Evidence suggests that illness perceptions held by people living with multiple sclerosis (MS) impact affective distress and physical health outcomes. In a randomized controlled trial, we developed 2 MS Online Courses-the standard care course and the intervention course (IC). The IC was adapted from an evidence-based lifestyle program. Modifying lifestyle risk factors offers an opportunity to impact illness perceptions. Research on illness perceptions in people living with MS has focused predominately on quantitative methods. This study aimed to explore the experiences and health outcomes of randomized controlled trial participants, including individuals' perceived changes in attitudes toward MS and their health (ie, illness perceptions). Qualitative responses provided by 38 participants (22 in the IC and 16 in the standard care course) were derived from semistructured interviews 1 month after completing the MS Online Course. The impact of course engagement and lifestyle modification on illness perceptions was explored using inductive thematic analysis. Themes of changes in illness perceptions were most prominent in the IC arm. Qualitative responses from 22 people living with MS informed the development of three themes: "self-efficacy for disease management," "personal control," and "illness coherence." Findings provide novel insights into the formation and modification of illness perceptions. Lifestyle modification may serve as a valuable adjunct to clinician-administered therapies, improving the sense of personal control over MS, illness coherence, and self-efficacy for disease management. Australian New Zealand Clinical Trials Registry ACTRN12621001605886; https://tinyurl.com/2vyve9p9. RR2-10.1186/s12883-023-03298-0.

Effects of a nurse-led therapeutic conversations intervention in stroke patient-family caregiver dyads: A randomized control trial.

Few studies have evaluated the effectiveness of family functional care interventions among stroke caregiver dyads. This study aimed to examine the effect of a nurse-led therapeutic conversation intervention on resilience, family function, self-efficacy in managing the disease, and quality of life (QoL) in stroke family caregiver dyads. This study aimed to examine the effect of a nurse-led therapeutic conversation intervention on resilience, family function, self-efficacy in managing the disease, and QoL in stroke-family caregiver dyads. This study was a single-blind (evaluator) randomized controlled trial. The planned execution time was from August 2021 to December 2022, in the rehabilitation ward of a medical university hospital. A total of 82 dyads were included in this analysis. Dyads randomized to the intervention group received nurse-led therapeutic conversations intervention one at four weeks after the patient's hospitalization for a stroke. The family caregiver dyads of stroke survivors in the control group received routine care. An effectiveness analysis that included patients' resilience, self-efficacy, and patient-family caregiver dyads' family function and QoL was conducted at one month. We used the CONSORT Checklist for reporting parallel group randomized trials in this study. The patients in the intervention group showed improvement in resilience and self-efficacy after one month. Furthermore, the effects on resilience (Cohen's d = 0.49) and self-efficacy (Cohen's d = 0.46) were significantly higher than in the control group. Family functioning was significantly higher in patient-family caregiver dyads in the intervention group than in the control group (Cohen's d = 0.55; Cohen's d = 0.50). However, no significant difference in QoL was found between patients and caregivers in either group. The intervention was effective in promoting family functioning and can also promote patient resilience and self-efficacy in disease management. However, the intervention did not have a significant effect on the QoL of patient-family caregiver dyads.

The Effect of Health Literacy on Disease Management Self-Efficacy in Chronic Disease Patients: The Mediating Effects of Social Support and the Moderating Effects of Illness Perception.

To test a hypothetical pathway model to estimate the links between health literacy, social support, illness perception, and disease management self-efficacy. This cross-sectional study, conducted from June to October 2022, involved the recruitment of 210 patients with chronic diseases at two primary care facilities. Participants completed the Health Literacy Management Scale, Self-Efficacy for Managing Chronic Disease 6-Item Scale, Social Support Rating Scale and Brief Illness Perception Questionnaire. We used the PROCESS macro for R to determine the hypothetical pathway model. The direct effect of health literacy on self-efficacy was significant (β=0.1792, 95% CI: 0.0940-0.2644), and social support played a partial mediating role between health literacy and self-efficacy (ES=0.0761, 95% CI: 0.0398-0.1204). Illness perception moderated the relationship between social support and self-efficacy (β=-0.0153, 95% CI: -0.0268- -0.0039). Proposed a conceptual model including the mediating effect of social support and the moderating effect of illness perception, which helps to clarify the underlying mechanisms between health literacy and self-efficacy.

INFLAMMATORY BOWEL DISEASE (IBD) COMMUNITY PREFERENCES FOR PSYCHOSOCIAL SUPPORT: THE ROLE AND SCOPE OF PEER SUPPORT FOR YOUTH WITH IBD

Abstract INTRODUCTION Youth with inflammatory bowel diseases (IBD) experience psychosocial challenges which can negatively impact their body image, self-efficacy, IBD symptoms, and risk of disease recurrence. Peer support programs have high desirability amongst IBD patients and can improve disease management skills, self-efficacy, and mental health generally. Existing peer support programs vary, ranging from one-on-one peer coaching to professionally-led support groups to IBD summer camps. However, there is limited research identifying best practices for peer support in IBD. Community-based participatory research (CBPR) is a framework that centers patient voices in all phases of research, providing an opportunity to equitably represent patient preferences in the development of peer support programs. METHODS Our mixed-methods community survey was disseminated across the US to adults eighteen or older with IBD via patient organizations. This survey assessed patient preferences for a peer support program, including structure (e.g., support group, 1:1 mentor, group activities) and program topics (e.g., body image, social life, medical care). Participants ranked these on a 5-point Likert scale (from “Not at all important” to “Extremely important”) and also had an open-ended opportunity to provide other topic suggestions. Given our CBPR approach, we recruited a Patient Advisory Board (PAB), composed of adults diagnosed with IBD in childhood, and conducted one-on-one interviews to assess patient perspectives of the survey results. RESULTS Our sample included 77 participants (mean age 29, 39.5% with ulcerative colitis, 60.5% with Crohn’s disease). Participants ranked doing non-IBD activities (e.g., games, meals) as quite a bit important, while IBD activities (e.g., IBD comic book) were ranked moderately important. PAB members emphasized that the strength of a patient-led support program is the shared experience and “normalcy” of having IBD, and that limiting a program to IBD activities wouldn’t allow for spontaneous conversation and trust-building. The average ranking of all topics surveyed fell between “extremely important” to “quite a bit important.” In order of importance, topics included navigating social life and mental health, increasing independence while growing older, planning for the future, communicating with the healthcare team, disclosure to friends, navigating school, body image, medical management, and nutrition. Themes suggested by participants included sexual intimacy, fertility, and advocacy. PAB members emphasized the role of peer support interventions as complementary to medical care, and specifically, how peer mentorship can allow for ‘real world’ examples of navigating life with IBD, outside traditional topics discussed in medical appointments. We will use this mixed-methods data to inform our design of a novel IBD peer support program.

Biomedical Dogmas Still Influence the Delivery of Exercise Therapy in Chronic Low Back Pain Management: Mixed-Methods Study.

Non-specific, chronic low back pain (NSCLBP) is a leading cause of disability, prompting long-term rehabilitation. Positive patient beliefs and expectations towards lasting exercise engagement play a crucial role for a successful management of this condition. The aim was to investigate beliefs, unmet needs and expectations of NSCLBP patients for exercise-related health behaviour change in the context of rehabilitative care. In a mono-centric mixed-methods study, we conducted semi-structured interviews with NSCLBP patients and care providers. We recruited in a rehabilitation clinic which is specialized in orthopaedics and internal medicine. Interviews were analysed deductively by combining health behaviour change theories with Donabedian's quality model of care. In a patient survey, disability (RMDQ), exercise behaviours, fear avoidance beliefs (FABQ), self-efficacy in chronic disease management (SES6G), process- and outcome-expectations (OEE-2) were queried and analysed descriptively. Twenty-two interviews were conducted and 40 questionnaires completed. Qualitative results revealed that NSCLBP patients had persistent biomedical perspectives on their health condition, marked by strong preferences for biomedical diagnostics and beliefs in the superiority of specific exercise regimes. Based on met expectations and positive movement experiences, patients' motivation was successfully fostered in the motivational phase of health behavior change. In the volitional phase, the postulated desire to receive self-management strategies was largely unmet. Psychosocial aspects of care were not widely accepted. The survey study sample showed a disability score (RMDQ) of M = 6.8 (±4.6). Mean scores of validated scales reflecting on attitudes, beliefs and expectations of chronic NSCLBP management were at FABQ-pa M = 15.4 (±6.0), FABQ-w M = 24.0 (±12.1), SES6G M = 6.4 (±2.3), and OEE-2 M = 2.7 (±0.5). In this sample, patients' understanding of NSCLBP was still dominated by biomedical dogmas and perspectives. Inpatient rehabilitation predominantly addressed expectations towards the motivational phase of exercise-related health behaviour change.

Perspectives of Adolescents and Young Adults with Sickle Cell Disease and Clinicians on Improving Transition Readiness and a Videogame Intervention

Background Adolescents and young adults with sickle cell disease (AYA-SCD) have higher rates of mortality and the highest rates of healthcare utilization compared with older and younger SCD patients. The transition period between pediatric and adult care for AYA-SCD is well recognized as a critical window because it represents the intersection of normal adolescent development, change in healthcare access and increased clinical manifestations of disease. Interventions that support AYA-SCD during this time are crucial to improving outcomes. Hallmarks of transition readiness amongst AYA-SCD include self-efficacy (i.e., patients' ability to manage their disease), active participation in shared decision-making (SDM), and adequate disease specific knowledge. Although videogames have been shown to positively affect adolescents' behavior and health outcomes, there has been no study evaluating this technology for improving transition readiness in AYA-SCD. Our objective was to learn AYA-SCD patients' and clinicians' experiences with AYA-SCD managing their disease at home and making medical decisions as they transition from pediatric to adult care, including whether a videogame intervention can positively impact these skills. Methods We conducted individual, semi-structured interviews with purposively sampled patients (AYA-SCD ages 15 to 26 with any genotype of SCD) and clinicians who provide care or support to AYA-SCD (pediatric and adult hematology providers, pediatric and general emergency medicine physicians and nurses, child life specialists) at an urban, quaternary care hospital. Interviews elicited patients' and clinicians' experiences with AYA-SCD in the clinic, emergency department, and/or hospital, including the transition from pediatric to adult care, barriers and facilitators to successful home management, and their perspectives on SDM and a videogame intervention. To identify themes related to patients' and clinicians' experiences with AYA-SCD managing their disease at home and making medical decisions, we conducted an inductive analysis following the principles of grounded theory until data saturation was reached for both groups. For patients' and clinicians' perspectives on a videogame intervention, we used a deductive analysis. Three investigators independently coded all transcripts to identify themes, with discrepancies resolved by consensus. Results We interviewed 16 patients and 21 clinicians. Participants identified two main themes: 1) self-efficacy to manage their disease successfully as they transition from pediatric to adult care, and 2) the importance of patient engagement in making medical decisions (Table 1; representative quotations). Sub-themes were environmental, clinician, and patient factors that served as barriers and facilitators to achieving self-efficacy and patient engagement in decision-making. Facilitators including having social support, the importance of education about SCD and SDM before adolescence, clinicians having good communication, building trust, listening, and involving patients in medical decisions, and patient self-advocacy by voicing their needs and being empowered to actively participate in medical decisions. Barriers included lack of support and resources, adolescent behaviors/traits, co-dependency on a parent/caregiver, pediatric vs. adult culture, and stigma/implicit bias/provider judgement (Figure 1; conceptual model). Participants were supportive of a videogame intervention to improve self-efficacy and engagement in decision-making (Table 1), with the primary goal being education and insight into SCD, and the secondary goal being distraction during pain crises. Conclusions AYA-SCD patients and their clinicians identified self-efficacy in successful disease management and patient engagement in medical decision-making as two primary areas of importance in the transition from pediatric to adult care. Several barriers and facilitators to achieving self-efficacy and patient engagement are potential targets for interventions to improve these skills in AYA-SCD. Overall, patients and clinicians supported the concept of a videogame to support self-efficacy and patient engagement to improve transition readiness. Future studies will focus on the design, development, and implementation of a videogame intervention which centers the key themes identified in this study.

1064-P: Pharm2Home Initiative—The Impact on Diabetes Management and Behavioral Changes

Objective: To evaluate whether the intervention program (telehealth and home visit) focusing on chronic disease management induces changes in clinical, psychological, and behavioral measures. Methods: This program evaluation utilizes a pre-and-post-intervention comparison design. For detecting whether differences exist between the baseline data and the follow-up data for the various measures, paired t-test (for parametric data) and Wilcoxon signed-rank test (for non-parametric data) are used. Results: Paired HbA1c data from 57 individuals (out of 122 enrolled participants) have been collected. 55% of the participants were non-White, and 88% were Medicaid recipients. The table below summarizes some of the evaluation measures (most data are collected at the end of the intervention period). Conclusion: Our preliminary analyses show that program participants have achieved a significant HbA1c reduction with a significant increase in perceived self-efficacy in chronic disease management. In addition, the available behavioral data with statistical significance reveal that participants have changed their behaviors during the intervention relating to diabetes management. The preliminary analyses show some early signals that our intervention program has the potential to help participants better manage diabetes. Disclosure C.F.Young: Other Relationship; Abbott Diabetes. S.Wong: None. C.Myung: None. Funding Sutter Health

Illness Perception, Self-Efficacy, and Medication Adherence in Patients With Coronary Artery Disease: A Path Analysis of Conceptual Model.

Illness perception and self-efficacy in patients with coronary artery disease (CAD) may affect medication adherence, which is one of the most important challenges in disease management in this group of patients. The present study aimed to investigate the factors influencing medication adherence in CAD patients, especially the effect of illness perception and self-efficacy. This study was cross-sectional and conducted from April to September 2021. A total of 259 patients with confirmed CAD were selected by convenience sampling method based on inclusion criteria. Illness perception, self-efficacy, and medication adherence were investigated using Brief IPQ, SCSES, and MARS_10 questionnaires, respectively. The data were analyzed using the STATA software (version 14) and the regression path analysis method. Patients had moderate illness perception and high self-efficacy, and 61.8 of them adhered to their medication regimen. Greater illness perception, better self-efficacy, and higher education had a positive effect on medication adherence, and increasing age had a negative effect on it. The final path model shows a good fit of the data in the model (χ2: 0.37, df: 274, χ2/df: 0.36, CFI: 1, IFI: 0.95, TLI: 1.07, and RMSEA: 0.00). The results of the present study suggest that patients' illness perception can play an important role in predicting self-efficacy in disease management and the level of medication adherence in patients with CAD. To improve self-efficacy and medication adherence, future intervention studies should focus on the patient's illness perceptions and their improvement.

Psychometric Properties of the Korean Version of Self-Efficacy for HIV Disease Management Skills

This study evaluated the validity and reliability of Shively and colleagues' self-efficacy for HIV disease management skills (HIV-SE) among Korean participants. The original HIV-SE questionnaire, comprising 34 items, was translated into Korean using a translation and back-translation process. To enhance clarity and eliminate redundancy, the author and expert committee engaged in multiple discussions and integrated two items with similar meanings into a single item. Further, four HIV nurse experts tested content validity. Survey data were collected from 227 individuals diagnosed with HIV from five Korean hospitals. Construct validity was verified through confirmatory factor analysis. Criterion validity was evaluated using Pearson's correlation coefficients with the new general self-efficacy scale. Internal consistency reliability and test-retest were examined for reliability. The Korean version of HIV-SE (K-HIV-SE) comprises 33 items across six domains: "managing depression/mood," "managing medications," "managing symptoms," "communicating with a healthcare provider," "getting support/help," and "managing fatigue." The fitness of the modified model was acceptable (minimum value of the discrepancy function/degree of freedom = 2.49, root mean square error of approximation = .08, goodness-of-fit index = .76, adjusted goodness-of-fit index = .71, Tucker-Lewis index = .84, and comparative fit index = .86). The internal consistency reliability (Cronbach's α = .91) and test-retest reliability (intraclass correlation coefficient = .73) were good. The criterion validity of the K-HIV-SE was .59 (p < .001). This study suggests that the K-HIV-SE is useful for efficiently assessing self-efficacy for HIV disease management.

Effectiveness of Mindfulness and Positive Strengthening mHealth Interventions for the Promotion of Subjective Emotional Wellbeing and Management of Self-Efficacy for Chronic Cardiac Diseases.

Intervention in health prevention and treatment via mobile phones is becoming a key element on health promotion. Testing the efficacy of these mobile health (mHealth) psychological interventions for cardiovascular health is necessary as it is a chronic pathology, and it can influence the affective and cognitive states of patients. This research aimed to analyze the effectiveness of two brief psychological interventions-mindfulness and positive strengthening-to promote subjective emotional wellbeing and disease management self-efficacy using mHealth. This was a three-arm intervention and feasibility study, with a pre-post design and three follow-up measures with 105 patients (93 completed all phases) with cardiovascular diseases. Group 1 and 2 received the mindfulness or strengthening intervention, and Group 3 was the control group. The positive-negative affect and management self-efficacy for chronic and cardiovascular diseases were analyzed over time, while anxiety and depression levels were assessed at the beginning of the study. The results showed that mindfulness and positive strengthening interventions both had a positive effect on participants' affective state and management self-efficacy for the disease in comparison with the control group over time, even after controlling for baseline anxiety and depression levels. Positive strengthening seems to be more effective for improving cardiac self-efficacy, while mindfulness practice was significantly more effective at reducing negative affect at the first face-to-face evaluation.

A Digital Platform to Support HIV Case Management for Youth and Young Adults: Mixed Methods Feasibility Study.

Advances in medical treatments in recent years have contributed to an overall decline in HIV-related opportunistic infections and deaths in youth; however, mortality and morbidity rates in perinatally and nonperinatally infected adolescents and young adults (AYA) living with HIV remain relatively high today. The goal of this project was to assess the use, utility, and cost-effectiveness of PlusCare, a digital app for HIV case management in AYA living with HIV. The app supports routine case management tasks, such as scheduling follow-up visits, sharing documents for review and signature, laboratory test results, and between-visit communications (eg, encouraging messages). We conducted a single-group mixed methods pre-post study with HIV case management programs in 2 large urban hospitals in the Boston metro area. Case management staff (case managers [CMs], N=20) and AYA living with HIV participants (N=45) took part in the study with access to PlusCare for up to 15 and 12 months, respectively. The CMs and AYA living with HIV reported mean System Usability Scale scores of 51 (SD 7.9) and 63 (SD 10.6), respectively. Although marginally significant, total charges billed at 1 of the 2 sites compared with the 12 months before app use (including emergency, inpatient, and outpatient charges) decreased by 41% (P=.046). We also observed slight increases in AYA living with HIV self-reported self-efficacy in chronic disease management and quality of life (Health-Related Quality of Life-4) from baseline to the 12-month follow-up (P=.02 and P=.03, respectively) and increased self-efficacy from the 6- to 12-month follow-up (P=.02). There was no significant change in HIV viral suppression, appointment adherence, or medication adherence in this small-sample pilot study. Although perceived usability was low, qualitative feedback from CMs and use patterns suggested that direct messaging and timely, remote, and secure sharing of laboratory results and documents (including electronic signatures) between CMs and AYA living with HIV can be particularly useful and have potential value in supporting care coordination and promoting patient self-efficacy and quality of life. ClinicalTrials.gov NCT03758066; https://clinicaltrials.gov/ct2/show/NCT03758066.

Abstract 11437: False Atrial Fibrillation Alerts From Smartwatch in Relation to Perceived Physical Well-Being and Confidence in Management of Chronic Symptoms: The Pulsewatch Study

Background: Atrial fibrillation (AF) can cause strokes that may be preventable with timely detection and anticoagulation therapy. Smartwatches offer the potential for non-invasive, long-term AF monitoring, but potential implications for psychological well-being associated with these alert systems remain to be studied. We examined the psychosocial impact of false alerts for AF on patients prescribed a smartwatch post stroke. Methods: We analyzed data from the Pulsewatch study (NCT03761394), which enrolled patients ≥50 years from the UMass Memorial Health system who had a history of stroke or transient ischemic attack, CHA 2 DS 2 -VASc ≥2, and no contraindications to anticoagulation. Data from participants in the intervention group, who received a cardiac patch monitor, as well as a smartwatch and smartphone installed with Pulsewatch applications, were analyzed. At baseline and 14 days, participants completed the Health Survey SF-12 to assess perceived physical well-being, and the Symptom Management survey to assess confidence in disease self-management. We employed logistic regression to assess changes in anxiety, perceived mental and physical health, and chronic disease management self-efficacy over 14 days with exposure to false alerts. Results: Among 85 participants who received a smartwatch for AF detection (mean age 64.8±9.2 years, 41% female, 86% non-Hispanic white) 11 (13%) received a false AF alert. Receipt of false alerts was associated with significant decreases in perceived physical well-being and management of chronic symptoms (β = -9.08, p &lt; 0.01 and β = -6.50, p = 0.03, respectively), but not significantly associated with changes in perceived mental health (β = 0.70, p = 0.78). Conclusions: Perceived physical well-being and levels of disease self-management, but not perceived mental health, decreased with exposure to false AF alarms over 14 days. Further studies are required to explore the psychological impact of smartwatch AF monitoring in patients post stroke.

Family-centered communication in pediatric sickle cell disease.

Individuals with sickle cell disease (SCD) experience systemic barriers in accessing high-quality care. Research suggests that patient/family-provider relationships are an important indicator of healthcare quality and can influence disease self-management and outcomes. The Patient Centered Communication (PCC) framework holds that patient/family-centered communication (e.g., eliciting, understanding, and validating patients' perspectives within their unique psychosocial contexts) contributes to improved family-provider relationships, as well as self-efficacy for disease management, adherence, and health outcomes. While the PCC framework has been useful in guiding the evaluation of patient/family-provider communication in other pediatric populations, it has not yet been applied in the context of pediatric SCD. This study aimed to use this framework to examine patient and family perceptions of communication with pediatric SCD healthcare providers. Total 17 caregivers (82% mothers, 94% Black/African American) and eight patients (62% female, aged 13-19years, M=16.50) completed semi-structured interviews. The PCC framework informed the development of a preliminary codebook. Thematic content analysis summarized family perspectives regarding communication with providers. For youth with SCD and their caregivers, specific themes related to family-centered communication included: reducing patient/family distress, supporting disease self-management efforts, facilitating information exchange and decision-making, and fostering positive and trusting relationships with providers. This study helps to address gaps in the literature related to patient/family-provider communication within pediatric SCD. Results underscore the importance of patient- and family-centered communication across pediatric SCD care. These findings can inform future research and clinical care initiatives to improve patient/family-provider interactions and health outcomes for this underserved population.

Online social support and collective empowerment: Serial mediation effect on self-efficacy among mothers of children with type 1 diabetes.

To identify a serial multiple mediation effect of social support in online health communities and collective empowerment on the relationship between diabetes-related burden (DRB) and self-efficacy, among mothers using a continuous glucose monitoring device for children with type 1 diabetes (T1D). A secondary analysis, cross-sectional, descriptive study. Data were obtained from 198 mothers of children with T1D via a web survey, from August to September 2020. Measures used were the Collective Empowerment in the Online Health Community Scale, a modified version of the Multidimensional Scale of Perceived Social Support, Problem Areas in Diabetes Survey-Parent Revised version and a modified version of the Maternal Self-efficacy for Diabetes Management Scale. Data were analysed using SPSS 25.0, and PROCESS MACRO for SPSS v3.5. A serial multiple mediation model was used. The indirect effects of both social support in online health communities and collective empowerment were identified in the relationship between DRB and diabetes self-efficacy (DSE). However, there was no indirect effect of social support in online health communities on these relationships. These findings suggest that online social support alone has a limited role in chronic disease management self-efficacy. Collective empowerment should be a strategic component in intervention development using online health communities to strengthen DSE in mothers of children with T1D. This study provides novel insights into the functional mechanism of online health communities for T1D. Peer mentor coaching by parents of children with T1D effectively helps other children's parents with its recent diagnosis. The findings recognize a need for strategies enhancing collective empowerment among parents of children with T1D. Along with peer coaching, these strategies should strengthen knowledge of resources and methods to impact social change as well as resource mobilization for collective actions.

Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program

BackgroundThe Scleroderma Patient-centered Intervention Network (SPIN) developed an online self-management program (SPIN-SELF) designed to improve disease-management self-efficacy in people with systemic sclerosis (SSc, or scleroderma). The aim of this study was to evaluate feasibility aspects for conducting a full-scale randomized controlled trial (RCT) of the SPIN-SELF Program.MethodsThis feasibility trial was embedded in the SPIN Cohort and utilized the cohort multiple RCT design. In this design, at the time of cohort enrollment, cohort participants consent to be assessed for trial eligibility and randomized prior to being informed about the trial. Participants in the intervention arm are informed and provide consent, but not the control group. Forty English-speaking SPIN Cohort participants from Canada, the USA, or the UK with low disease-management self-efficacy (Self-Efficacy for Managing Chronic Disease Scale [SEMCD] score ≤ 7) who were interested in using an online self-management program were randomized (3:2 ratio) to be offered the SPIN-SELF Program or usual care for 3 months. Program usage was examined via automated usage logs. User satisfaction was assessed with semi-structured interviews. Trial personnel time requirements and implementation challenges were logged.ResultsOf 40 SPIN Cohort participants randomized, 26 were allocated to SPIN-SELF and 14 to usual care. Automated eligibility and randomization procedures via the SPIN Cohort platform functioned properly, except that two participants with SEMCD scores > 7 (scores of 7.2 and 7.3, respectively) were included, which was caused by a system programming error that rounded SEMCD scores. Of 26 SPIN Cohort participants offered the SPIN-SELF Program, only 9 (35%) consented to use the program. Usage logs showed that use of the SPIN-SELF Program was low: 2 of 9 users (22%) logged into the program only once (median = 3), and 4 of 9 (44%) accessed none or only 1 of the 9 program’s modules (median = 2).ConclusionsThe results of this study will lead to substantial changes for the planned full-scale RCT of the SPIN-SELF Program that we will incorporate into a planned additional feasibility trial with progression to a full-scale trial. These changes include transitioning to a conventional RCT design with pre-randomization consent and supplementing the online self-help with peer-facilitated videoconference-based groups to enhance engagement.Trial registrationclinicaltrials.gov, NCT03914781. Registered 16 April 2019.

Challenges of Telemonitoring Programs for Complex Chronic Conditions: Randomized Controlled Trial With an Embedded Qualitative Study.

BackgroundDespite the growing prevalence of people with complex conditions and evidence of the positive impact of telemonitoring for single conditions, little research exists on telemonitoring for this population.ObjectiveThis randomized controlled trial and embedded qualitative study aims to evaluate the impact on and experiences of patients and health care providers (HCPs) using a telemonitoring system with decision support to manage patients with complex conditions, including those with multiple chronic conditions, compared with the standard of care.MethodsA pragmatic, unblinded, 6-month randomized controlled trial sought to recruit 146 patients with ≥1 diagnosis of heart failure (HF), uncontrolled hypertension (HT), and insulin-requiring diabetes mellitus (DM) from outpatient specialty settings in Toronto, Ontario, Canada. Participants were randomized into the control and telemonitoring groups, with the latter being instructed to take readings relevant to their conditions. The telemonitoring system contained an algorithm that generated decision support in the form of actionable self-care directives to patients and alerts to HCPs. The primary outcome was health status (36-Item Short Form Health Survey questionnaire). Secondary outcomes included anxiety and depression, self-efficacy in chronic disease management, and self-reported health service use. HF-related quality of life and self-care measures were also collected from patients followed for HF. Within- and between-group change scores were analyzed for statistical significance (P<.05). A convenience sample of HCPs and patients in the intervention group was interviewed about their experiences.ResultsA total of 96 patients were recruited and randomized. Recruitment was terminated early because of implementation challenges and the onset of the COVID-19 pandemic. No significant within- and between-group differences were found for the main primary and secondary outcomes. However, a within-group analysis of patients with HF found improvements in self-care maintenance (P=.04) and physical quality of life (P=.046). Opinions expressed by the 5 HCPs and 13 patients who were interviewed differed based on the monitored conditions. Although patients with HF reported benefitting from actionable self-care guidance and meaningful interactions with their HCPs, patient and HCP users of the DM and HT modules did not think telemonitoring improved the clinical management of those conditions to the same degree. These differing experiences were largely attributed to the siloed nature of specialty care and the design of the decision support, whereby fluctuations in the status of HT and DM typically required less urgent interventions compared with patients with HF.ConclusionsWe recommend that future research conceive telemonitoring as a program and that self-management and clinical decision support are necessary but not sufficient components of such programs for patients with complex conditions and lower acuity. We conclude that telemonitoring for patients with complex conditions or within multidisciplinary care settings may be best operationalized through nurse-led models of care.Trial RegistrationClinicalTrials.gov NCT03127852; https://clinicaltrials.gov/ct2/show/NCT03127852International Registered Report Identifier (IRRID)RR2-10.2196/resprot.8367

The Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized controlled feasibility trial with progression to full-scale trial

BackgroundSystemic sclerosis (scleroderma; SSc) is a rare autoimmune connective tissue disease. We completed an initial feasibility trial of an online self-administered version of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program using the cohort multiple randomized controlled trial (RCT) design. Due to low intervention offer uptake, we will conduct a new feasibility trial with progression to full-scale trial, using a two-arm parallel, partially nested RCT design. The SPIN-SELF Program has also been revised to include facilitator-led videoconference group sessions in addition to online material. We will test the group-based intervention delivery format, then evaluate the effect of the SPIN-SELF Program on disease management self-efficacy (primary) and patient activation, social appearance anxiety, and functional health outcomes (secondary).MethodsThis study is a feasibility trial with progression to full-scale RCT, pending meeting pre-defined criteria, of the SPIN-SELF Program. Participants will be recruited from the ongoing SPIN Cohort (http://www.spinsclero.com/en/cohort) and via social media and partner patient organizations. Eligible participants must have SSc and low to moderate disease management self-efficacy (Self-Efficacy for Managing Chronic Disease (SEMCD) Scale score ≤ 7.0). Participants will be randomized (1:1 allocation) to the group-based SPIN-SELF Program or usual care for 3 months. The primary outcome in the full-scale trial will be disease management self-efficacy based on SEMCD Scale scores at 3 months post-randomization. Secondary outcomes include SEMCD scores 6 months post-randomization plus patient activation, social appearance anxiety, and functional health outcomes at 3 and 6 months post-randomization. We will include 40 participants to assess feasibility. At the end of the feasibility portion, stoppage criteria will be used to determine if the trial procedures or SPIN-SELF Program need important modifications, thereby requiring a re-set for the full-scale trial. Otherwise, the full-scale RCT will proceed, and outcome data from the feasibility portion will be utilized in the full-scale trial. In the full-scale RCT, 524 participants will be recruited.DiscussionThe SPIN-SELF Program may improve disease management self-efficacy, patient activation, social appearance anxiety, and functional health outcomes in people with SSc. SPIN works with partner patient organizations around the world to disseminate its programs free-of-charge.Trial registrationClinicalTrials.govNCT04246528. Registered on 27 January 2020