Chronic Disease Self-Management Program Research Articles

Impact of Chronic Disease Self-Management Program on the Self-Perceived Health of People in Areas of Social Vulnerability in Asturias, Spain.

The Chronic Disease Self-Management Program (CDSMP) focuses on a health promotion perspective with a salutogenic approach, reinforcing the pillars of self-efficacy. The aim of this study was to assess the impact of the CDSMP on Self-perceived Health (SPH) in disadvantaged areas of Asturias, España. The study included vulnerable adults with experience of chronic diseases for over six months, along with their caregivers. The intervention consisted of a six-session workshop led by two trained peers. SPH was evaluated by administering the initial item of the SF-12 questionnaire at both baseline and six months post-intervention. To evaluate the variable "Change in SPH" [improvement; remained well; worsening/no improvement (reference category)], global and disaggregated by sex multivariate multinomial logistic regression models were applied. There were 332 participants (mean = 60.5 years; 33.6% were at risk of social vulnerability; 66.8% had low incomes). Among the participants, 22.9% reported an improvement in their SPH, without statistically significant sex-based differences, while 38.9% remained in good health. The global model showed age was linked to decreased "improvement" probability (RRRa = 0.96), and the "remaining well" likelihood drops with social risk (RRRa = 0.42). In men, the probability of "remaining well" decreased by having secondary/higher education (RRRa = 0.25) and increased by cohabitation (RRRa = 5.11). Women at social risk were less likely to report "remaining well" (RRRa = 0.36). In conclusion, six months after the intervention, 22.9% of the participants had improved SPH. Age consistently decreased the improvement in the different models.

The Effectiveness of the Chronic Disease Self-Management Program in Improving Patients' Self-Efficacy and Health-Related Behaviors: A Quasi-Experimental Study.

The Stanford Chronic Disease Self-Management Program (CDSMP) is a valuable educational resource for supporting patients' self-management behaviors. However, no evidence supporting its effectiveness in the Saudi Arabian population exists. Therefore, this study aimed to evaluate the effectiveness of the 6-month CDSMP in individuals with chronic conditions in Saudi Arabia within a primary care context. A quasi-experimental design was conducted in 110 adults living with ≥1 chronic disease in Saudi Arabia. The patients in the experimental group (n = 45) participated in a six-session CDSMP, whereas those in the control group (n = 65) continued their usual care. Baseline and 6-month assessments were conducted using relevant questionnaires to assess outcome measures. Analysis of covariance revealed that the participants who underwent the CDSMP had significantly higher self-efficacy levels in managing their conditions (F = 9.80, p < 0.01) and a greater tendency to adopt healthy behaviors to successfully manage their chronic illnesses (F = 11.17, p < 0.01). The participants who underwent the CDSMP also showed significant improvements in all health-related outcomes compared with those in the control group (p < 0.01). These findings indicated that the program had a positive effectiveness in self-efficacy, self-management behaviors, and health-related outcomes among adults with chronic diseases in Saudi Arabia. The CDSMP may be integrated into primary care settings to help patients successfully manage their chronic conditions.

Can pain be self-managed? Pain change in vulnerable participants to a health education programme.

Chronic pain exerts a significant impact on the quality of life, giving rise to both physical and psycho-social vulnerabilities. It not only leads to direct costs associated with treatments, but also results in indirect costs due to the reduced productivity of affected individuals. Chronic conditions can be improved by reducing modifiable risk factors. Various educational programs, including the Chronic Disease Self-Management Programme (CDSMP), have demonstrated the advantages of enhancing patient empowerment and health literacy. Nevertheless, their efficacy in addressing pain symptoms has received limited attention, especially concerning vulnerable populations. This research aims to assess the effectiveness of the CDSMP in alleviating pain among socio-economically vulnerable participants with chronic conditions. By accounting for a wide range of variables, and using data from the EFFICHRONIC project (EU health programme), we investigated the changes in pain levels after the intervention, among 1070 participants from five European countries. Our analyses revealed a significant reduction in pain following the intervention. This finding supports the notion that training programs can effectively ameliorate pain and alleviate its impact on the quality of life, particularly in vulnerable populations. Younger participants, as well as those with higher education levels and individuals experiencing higher levels of pain at baseline, were more likely to experience a reduction in their pain levels. These findings underscore the importance of recognising the social determinants of health. The study was registered at ClinicalTrials.gov (ISRCTN70517103).

A Pilot of a Chronic Disease Self-Management Programme in Moldova

ABSTRACT Over half of the world’s mortality is associated with chronic diseases. Living with chronic diseases can significantly affect patients’ quality of life. The daily management of these diseases falls mostly on patients themselves. Self-management interventions have become increasingly used as a complementary intervention to treatment and care. The Chronic Disease Self-Management Programme (CDSMP) is the most widespread self-management intervention. It aims to empower patients and provide them with the skills to manage their disease and prevent complications. A locally adapted CDSMP was piloted in the Republic of Moldova in 2018/2019 in five villages across three rural districts. In five groups led by peer facilitators, 63 participants were enrolled in the programme. Four participants were lost to follow-up. To evaluate the intervention, we used the Self-Efficacy for Managing Chronic Diseases six-item scale questionnaire with participants before and after the programme, along with a questionnaire to assess satisfaction with the programme. Additionally, we conducted a focus group discussion (FGD) with the 10 programme facilitators. We found that, not only did participants’ self-efficacy significantly increase between baseline and follow-up (from mean score of 5.3 to 8.3; t(58) = -12.2, p < 0.001), they also improved their knowledge on every individual item on how to manage a chronic disease (p < 0.001). Participants’ satisfaction was high, with 96% of respondents satisfied with content, format and delivery elements of the intervention. Hence, we believe the CDSMP is locally acceptable and effective at least in the short-term, and offers promises for scale-up in the Republic of Moldova.

Evaluating the Effectiveness of a Self-Management Program on Patients Living with Chronic Diseases.

Chronic diseases are a major public health concern globally, and the position in Saudi Arabia is no exception. The Chronic Disease Self-Management Program (CDSMP) is a widely used intervention process to address care of chronic conditions. However, its effectiveness in a Saudi context has not been extensively studied. Therefore, this study aimed at evaluating the post-intervention outcomes of the CDSMP in Saudi Arabia. The study utilized a qualitative design on patients with chronic conditions. Data were collected through two focus group sessions with 15 participants who had completed the CDSMP. A thematic analysis technique was used for data analysis. Three key themes emerged from analysis of the qualitative data obtained through the focus groups: the perceived benefits from participation in the CDSMP workshop; the impact of the CDSMP workshop on improving health status and quality of life; and, the cultural acceptability of the CDSMP. The study also found that the CDSMP was effective in improving participants' self-management skills and quality of life. Additional benefits included increased motivation for behavioral change, enhanced confidence regarding self-care of chronic conditions, improved communication with healthcare providers, and better coping strategies. This study provides valuable insights into the effectiveness of the CDSMP in addressing chronic conditions in Saudi Arabia. The program's emphasis on self-management skills and peer support aligns with the cultural values of Saudi Arabia. However, applying the CDSMP across various chronic conditions should be addressed in future interventions.

Cuidándome: A trauma-informed and cultural adaptation of a chronic disease self-management program for Latina immigrant survivors with a history of adverse childhood experiences and depression or anxiety symptoms.

To develop a cultural and trauma-informed mental health self-management program for immigrant Latina survivors of adverse childhood experiences with depression or anxiety symptoms. Guided by Barrera's five-stage process for cultural adaptation, we collaborated with multiple stakeholders including clinical psychologists, community health workers, and Latina immigrant women with a history of adverse childhood experiences and depression or anxiety to transform a chronic disease self-management program to be trauma informed, culturally appropriate, and focus on self-management of depression and anxiety symptoms. Adaptations included translating program materials to Spanish, education on how early life adversity and trauma may impact mental health, virtual delivery, more frequent and shorter sessions, and addition of graphics and written prompts in workbook materials. For the facilitator's manual, culturally relevant vignettes and guidance were added to guide participants through activities and adapt sessions based on participant needs. Barrera's five-stage process was useful for adapting a program to be both trauma and culturally informed for an underserved population disproportionately affected by trauma and limited access to mental health services. The adaptation demonstrated acceptability with Latina immigrant women and the promise of utilizing unlicensed personnel and technology for increasing the reach of mental health support. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Abstract TMP45: Assessing Adaptations of a Complex Secondary Stroke Prevention Intervention

Introduction: S econdary stroke prevention by U niting C ommunity and C hronic care model teams E arly to E nd D isparities (SUCCEED) was a randomized trial of a multilevel complex intervention to enhance risk factor control after stroke. Subjects randomized to intervention were managed by an advanced practice clinician (APC)-community health worker (CHW) team. Within the framework of ≥3 clinic and ≥3 home visits, and Chronic Disease Self-Management Program (CDSMP) workshops, the team tailored the intervention to meet participants’ needs. To describe how the intervention was implemented and adapted, we used the form/function framework. Methods: We identified key domains (overall goals of intervention), motivating needs (importance of targeting each domain), functions (methods for addressing motivating needs), and forms (tools, resources, methods for accomplishing each function). Two study leaders conducted semi-structured interviews with 4 APCs and 4 CHWs to identify forms used. APCs and CHWs described how frequently they used each form and usefulness via a RedCap survey. Descriptive statistics were subsequently run with R version 4.2.3. Results: SUCCEED targeted 7 domains: medication adherence, stroke literacy, self-management skills, care coordination, healthcare system navigation, social support, and addressing barriers. Each domain had 1-7 motivating needs and 4-13 functions. Each function had 5-23 forms, resulting in a total of 365 forms for addressing all domains. Most providers (85%) reviewed medication bottles to assess medication adherence, strongly agreeing this was useful. Pill organizers and stickers were used 53% of the time to ensure patients knew what medications they should be taking; 71% strongly agreed this was useful. Providers identified physical/environmental/social/literacy barriers during both home visits and CDSMP workshops (71%); all providers found this combination helpful. Conclusion: The form/function framework is useful for describing real-world adaptations of complex interventions. We identified key aspects of the intervention that providers used frequently and found useful, to inform future development of secondary stroke prevention interventions.

Abstract HUP9: Assessing Adaptations of a Complex Secondary Stroke Prevention Intervention

Introduction: S econdary stroke prevention by U niting C ommunity and C hronic care model teams E arly to E nd D isparities (SUCCEED) was a randomized trial of a multilevel complex intervention to enhance risk factor control after stroke. Subjects randomized to intervention were managed by an advanced practice clinician (APC)-community health worker (CHW) team. Within the framework of ≥3 clinic and ≥3 home visits, and Chronic Disease Self-Management Program (CDSMP) workshops, the team tailored the intervention to meet participants’ needs. To describe how the intervention was implemented and adapted, we used the form/function framework. Methods: We identified key domains (overall goals of intervention), motivating needs (importance of targeting each domain), functions (methods for addressing motivating needs), and forms (tools, resources, methods for accomplishing each function). Two study leaders conducted semi-structured interviews with 4 APCs and 4 CHWs to identify forms used. APCs and CHWs described how frequently they used each form and usefulness via a RedCap survey. Descriptive statistics were subsequently run with R version 4.2.3. Results: SUCCEED targeted 7 domains: medication adherence, stroke literacy, self-management skills, care coordination, healthcare system navigation, social support, and addressing barriers. Each domain had 1-7 motivating needs and 4-13 functions. Each function had 5-23 forms, resulting in a total of 365 forms for addressing all domains. Most providers (85%) reviewed medication bottles to assess medication adherence, strongly agreeing this was useful. Pill organizers and stickers were used 53% of the time to ensure patients knew what medications they should be taking; 71% strongly agreed this was useful. Providers identified physical/environmental/social/literacy barriers during both home visits and CDSMP workshops (71%); all providers found this combination helpful. Conclusion: The form/function framework is useful for describing real-world adaptations of complex interventions. We identified key aspects of the intervention that providers used frequently and found useful, to inform future development of secondary stroke prevention interventions.

Lessons From the Field. Chronic disease: Action for post‐pandemic wellness and health

ABSTRACTObjectiveWe aim to share practical insight acquired while implementing the Chronic Disease Self‐Management Program (CDSMP), offering strategies to reach and support diverse individuals with chronic diseases.BackgroundIn light of a global rise in chronic diseases, existing health disparities, and increasingly limited health care access, exacerbated by COVID‐19, empowering individuals through self‐management becomes important to alleviate burdens for families, individuals, and healthcare systems.MethodsUptake and effectiveness of CDSMP were quantified via enrollment data and evaluation instruments. Qualitative exploration of instructor feedback provided lessons learned.ResultsParticipation in CDSMP courses increased during the pandemic with participants reporting greater confidence and frequency of engagement in self‐management activities. Strategic efforts including partnership‐building, targeted marketing, and innovative delivery methods played a pivotal role in recruitment success. Inclusivity measures, such as use of electronic platforms and varied engagement options, broadened program accessibility. Addressing social isolation emerged as a key factor, both as an end in itself and as a motivator for course engagement and retention.ConclusionReducing barriers related to program accessibility, inclusivity, and social isolation are important factors influencing program enrollment both in total number and in diversity of participants, course engagement and retention, and program effectiveness.ImplicationsLessons learned can inform future implementation as family educators seek to uplift and improve the well‐being and health of diverse families coping with chronic diseases.

The effects of a mindfulness-based programme on quality of life and social support in older people

Abstract The importance of mindfulness in promoting mental health and well-being has been increasingly recognised in recent years. As a result, mindfulness-based interventions have been introduced to improve various aspects of life, including quality of life and social support. The aim of this study was to examine the effectiveness of a seven-week mindfulness-based workshop programme in improving quality of life and social support among participants in the intervention compared to a control group. A total of 257 participants (65+) were recruited and assigned to either the intervention group, which participated in the seven-week mindfulness-based workshop programme, or the control group, which received no intervention. The workshop programme combined two evidence-based programmes: The Chronic Disease Self-Management Programme (CDSMP) and the Mindfulness-based Living Programme. Participants completed two questionnaires (EQ-5D-5L and OSSS-3) to assess quality of life and social support before and after the intervention. Data were analysed using appropriate statistical tests to compare pre- and post-intervention outcomes between groups. The intervention group showed significant improvement in quality of life (p&amp;lt;.001) and social support scores (p = 0.002) after the seven-week mindfulness-based workshop programme. The control group, on the other hand, showed no significant changes in these measures. The significant improvement indicates the effectiveness of the mindfulness-based workshop programme. The results of this study show the positive effects of a seven-week mindfulness-based workshop programme on the quality of life and social support of older people. The results suggest that mindfulness-based interventions can be an effective tool for improving mental health and well-being by promoting quality of life and strengthening social support networks. Key messages • The seven-week mindfulness-based workshop programme improves the quality of life and social support of older people, which can have an impact on overall mental health and well-being in general. • The results of this study can ensure a sustainable impact on achieving better health outcomes and saving resources in the health care system through reduced and more effective use of services.

The effect of a community-based group intervention on chronic disease self-management in a vulnerable population.

Chronic non-communicable diseases (NCDs) are predominantly related to modifiable health behaviors and account for 74% of global deaths at present. Behavior modification through self-management is a strategy to prevent NCDs. Chronic Disease Self-Management Programs (CDSMPs) have demonstrated improvements in health behaviors, health status, and use of healthcare. We evaluated the effects of a 6-week CDSMP on self-efficacy, health behaviors, mental health, health-related quality of life (HR-QoL), and health responsibilities among vulnerable populations with chronic disease in Europe. A prospective cohort study with a 6-month pre-post single-group design was conducted in five European countries. The intervention targeted adults with chronic conditions and low socioeconomic status, as well as their caregivers. The intervention was a 6-week community-based CDSMP in a group setting. Outcomes were measured per self-report questionnaire at baseline and 6-month follow-up: self-efficacy, health behaviors, mental health, HR-QoL, and health responsibilities. Of 1,844 participants, 1,248 (67.7%) completed follow-up and attended ≥4 sessions. For the chronic condition group, the following outcome measures at follow-up significantly improved compared with baseline (all P < 0.002): self-efficacy (SEMCD-6 6.7 vs. 6.4), mental health (PHQ-8 6.3 vs. 7.0), HR-QoL (SF-12 PCS 42.3 vs. 40.2, SF-12 MCS 42.8 vs. 41.4), health utility (EQ-5D-5L 0.88 vs. 0.86), self-rated health (EQ-5D-5L 67.2 vs. 63.9), communication with healthcare providers (2.28 vs. 2.11), understanding information (3.10 vs. 3.02), number of doctor visits (3.61 vs. 4.97), accident and emergency department visits (0.25 vs. 0.48), total nights in a hospital (0.65 vs. 1.13), and perceived medical errors (19.6 vs. 28.7%). No significant changes were detected in dietary habits, physical activity, substance use, and sleep and fatigue. For caregivers without a chronic condition, only doctor visits significantly decreased (1.54 vs. 2.25, P < 0.001). This CDSMP was associated with improvement in self-efficacy, depression, HR-QoL, and health responsibilities over 6 months in a diverse European population with a chronic condition. However, additional interventions targeting lifestyle risk factors are needed to improve health outcomes.

Patients' perception towards chronic disease self-management and its program: A cross-sectional survey.

This study aimed to assess the perceptions towards chronic disease self-management and its program among patients with chronic diseases. A cross-sectional study using pre-validated questionnaire was conducted among patients with chronic diseases at outpatient pharmacy in a hospital in Penang, Malaysia from April to June 2021. Of 270 patients participated in this study, 87.8% were interested in chronic disease self-management. Nonetheless, they faced common barriers including time constraint (71.1%), no health monitoring devices (44.1%) and poor health knowledge (43.0%). More than half of the patients expressed that having a better knowledge of the disease and its treatment (64.1%), getting supportive guidance from healthcare providers (59.6%) and having monitoring devices (58.1%) were the top three facilitators to self-management. The patients preferred chronic disease self-management programs that (a) discuss the topic of motivation (b) are available both as mobile applications and hands-on training, (c) individual session, (d) range between 1 and 5 sessions with a duration of 1 to 2 h/session, (e) occurring on monthly basis, (f) conducted by doctor or healthcare professionals and (g) fully sponsored by government or at affordable fee. The findings serve as pre-requisite step in future design and development of chronic disease self-management program, targeting the patients' needs and preferences.

Evaluation of a pilot intervention for online delivery of arthritis-appropriate evidence-based interventions to older adults via parks and recreation agencies

ABSTRACT The objective of this research was to examine the implementation, successes, and challenges to online delivery of existing arthritis-appropriate evidence-based interventions (AAEBIs) to older adults (55+) with arthritis through park and recreation (P&R) agencies, using the Consolidated Framework for Implementation Research (CFIR). Prior to the COVID-19 pandemic, AAEBIs were offered in-person, thus the purpose of the pilot intervention was to assess online delivery through semi-structured interviews with nine P&R agencies. Benefits to participants included protection during a time of heightened risk of serious illness; ease of access and elimination of transportation barriers; flexibility; engagement of community members previously not engaged in physical activity programs; and increased opportunities for socialization, chronic condition management and physical activity, and acquisition of new skills that can support overall well-being. Benefits to organizations offering online AAEBIs included overcoming space constraints or equipment requirements; offering flexible scheduling; engaging community members previously not engaged in physical activity programs; and helping advance social participation, learning opportunities and meaningful community engagement among older adults. The most common challenge was transitioning to an online platform, which can be time-consuming, burdensome, and discouraging for both participants and organizations implementing online AAEBIs. This study demonstrated how the online delivery of AAEBIs can positively influence rates of participation in both virtual programming and chronic disease self-management education programs, as well as combat the adverse effects of social isolation and loneliness among older adults.

Remote delivery of self-management education workshops for adults with chronic pain, 2020-2021.

We intended to assess changes in pain-related outcomes among rural adults who completed 6-week self-management programs offered remotely during the COVID-19 pandemic. We offered the Chronic Pain Self-Management Program and Chronic Disease Self-Management Program between May 2020 and December 2021. Delivery mode options included 2½-hour weekly videoconference, mailed toolkit plus 1-hour weekly conference call, and mailed toolkit alone. We conducted pre- and post-workshop surveys including questions on patient activation, self-efficacy, depression and pain disability. We used paired t-tests to compare pre-post differences in outcomes among participants completing 4 or more sessions. Among 218 adults reporting chronic pain, mean age was 57; 83.6% were female; and 49.5% participated via videoconference, 23.4% by phone and 27.1% via mailed toolkit alone. Completion rates were higher among phone (88.2%) versus videoconference (60.2%) workshop participants. Among completers, patient activation (mean change = 3.61, p = 0.01) and self-efficacy (mean change = 3.72, p < 0.0001) increased while depression scores (mean change = -1.03, p = 0.01), pain disability (mean change = -0.93, p = 0.003) and pain symptoms (mean change = -0.61, p = 0.001) decreased over the 6-week period. Self-management programs offered remotely during the pandemic were successful in improving patient activation, self-efficacy, depression, pain disability, and pain symptoms among rural adults experiencing chronic pain.

Time to move beyond monological perspectives in health behavior change communication research and practice.

Chronic disease self-management and health behavior change programs are becoming increasingly important to health service delivery to prevent the development of chronic disease and optimize health outcomes for those who suffer from it. To train people to deliver these programs effectively, we need to understand both the what and how of program delivery. While there is an abundant literature on what, and a merging evidence about what techniques to use, such as goals setting and self-monitoring, the literature on how programs should be delivered is less well developed. This paper reviews emerging research in this area and identifies an underlying monological approach. We argue that this currently dominant model cannot address the key issues in this area. By considering the theoretical framework of Dialogism, we introduce the method of Conversation Analysis to the field of behavior change interventions. Extensive research into health communication has endeavored to show the importance of language and the organization of interactions. We demonstrate and discuss how a monological approach to interventions prevents exploration of what professionals do to deliver intervention content. In doing so, we show that techniques do not account for how successfully an intervention is delivered.

Comparison of short and long forms of the Flinders program of chronic disease SELF-management for participants starting SGLT-2 inhibitors for congestive heart failure (SELFMAN-HF): protocol for a prospective, observational study.

Congestive heart failure (CHF) causes significant morbidity and mortality. It is an epidemic, and costs are escalating. CHF is a chronic disease whose trajectory includes stable phases, periods of decompensation, and finally palliation. Health services and medical therapies must match the various patient needs. Chronic disease self-management (CDSM) programmes that are patient-focused, identify problems and set actionable goals that appear as a logical, cost-friendly method to navigate patient journeys. There have been challenges in standardising and implementing CHF programmes. SELFMAN-HF is a prospective, observational study to evaluate the feasibility and validity of the SCRinHF tool, a one-page self-management and readmission risk prediction tool for CHF, with an established, comprehensive CDSM tool. Eligible patients will have CHF with left ventricular ejection fraction <40% and commenced sodium glucose co-transporter-2 inhibitors (SGLT2-i) within 6 months of recruitment. The primary endpoint is the 80% concordance in readmission risk predicted by the SCRinHF tool. The study will recruit >40 patients and is expected to last 18 months. This study has been approved by the St Vincent's ethics committee (approval no. LRR 177/21). All participants will complete a written informed consent prior to enrolment in the study. The study results will be disseminated widely via local and international health conferences and peer-reviewed publications.

Symptom prevalence, severity, distress and management among patients with chronic diseases

BackgroundAdvanced knowledge, technology, and treatment approaches resulted in longer survival rates for patients suffering from chronic diseases. However, symptoms of these diseases persist and affect the individual’s entire life and normal functioning.AimTo assess symptoms prevalence, severity, distress, and management among patients with chronic obstructive pulmonary diseases (COPD), chronic heart failure (CHF), and end-stage renal disease (ESRD) in Oman.DesignA descriptive cross-sectional design was used.Sample and settingsThe study sample comprised 340 participants who were recruited between May and December 2021 from two referral hospitals and one large dialysis unit in the Sultanate of Oman, Muscat Governate using a convenience sampling technique.ResultsThe highly prevalent symptoms among patients with selected chronic diseases were lack of energy (60.9%), pain (57.4%), numbness (53.2%), difficulty sleeping (49.4%), and shortness of breath (45.9%). The most severe symptoms were shortness of breath (53.2%), problems with urination (51.9%), constipation (50.8%), difficulty sleeping (49.7%), and pain (46.2%). The symptom “problems with sexual interests or activity” was found to be the most frequently occurring and highly distressing symptom out of all reported symptoms.ConclusionsThe current study’s findings showed that symptoms were prevalent and that some symptoms were frequent, severe, and highly distressing. In addition, patients perceived symptom treatment as inadequate. Psychological symptoms received less treatment attention compared with physical symptoms. One of the mainstays for managing symptoms can be the introduction of palliative care. Providing palliative care to these patients can alleviate their suffering and improve their quality of life. In addition, designing chronic disease self-management programmes can make a difference in patients’ life.

A 3-day ‘stroke camp’ addressed chronic disease self-management elements and perceived stress of survivors of stroke and their caregivers reduced: Survey results from the 14 US camps

ABSTRACT Background Stroke is a leading cause of disability for persons with stroke (PWS). Difficulty coping with long-term stress for PWS and their caregivers (CG) contributes to their poor health. Variations of chronic-disease self-management programs (CDSMPs) have reduced long-term stress in PWS and CGs. CDSMPs include training for decision-making, problem-solving, resource utilization, peer support, developing a patient–provider relationship, and environmental support. Objective This study examined whether a user-designed stroke camp addressed CDSMP domains, used consistent activities, and decreased stress in PWS and CG. Methods This open cohort survey study followed STROBE guidelines and assessed stress at four timepoints: 1 week before camp, immediately before camp, immediately after camp, and 1 month after camp. Mixed-model analysis examined changes in stress from the two baseline time points to the two post-camp time points. The research team reviewed documents and survey responses to assess activities described in camp documents and CDSMP domains across camps. Population PWS and CG who attended a camp in 2019. The PWS sample (n = 40) included50% males, aged 1-41-years post stroke, 60% with ischemic, one-third with aphasia, and 37.5% with moderate-severe impairment. CG sample (n = 24) was 60.8% female, aged 65.5 years, and had 7.4 years CG experience. Results Stress decreased significantly in PWS (Cohen’s d = −0.61) and CGs (Cohen’s d = −0.87) from pre- to post-camp. Activities addressing all but one CDSMP domains were evident across camps. Conclusions Stroke camp is a novel model that addresses CDSMP domains, which may reduce stress in PWS and CG. Larger, controlled studies are warranted.

The Pre-Adaptation of a Stroke-Specific Self-Management Program Among Older Adults.

Objectives: Managing multimorbidity as aging stroke patients is complex; standard self-management programs necessitate adaptations. We used visual analytics to examine complex relationships among aging stroke survivors' comorbidities. These findings informed pre-adaptation of a component of the Chronic Disease Self-Management Program. Methods: Secondary analysis of 2013-2014 Medicare claims with stroke as an index condition, hospital readmission within 90days (n = 42,938), and 72 comorbidities. Visual analytics identified patient subgroups and co-occurring comorbidities. Guided by the framework for reporting adaptations and modifications to evidence-based interventions, an interdisciplinary team developed vignettes that highlighted multimorbidity to customize the self-management program. Results: There were five significant subgroups (z = 6.19, p < .001) of comorbidities such as obesity and cancer. We constructed 6 vignettes based on the 5 subgroups. Discussion: Aging stroke patients often face substantial disease-management hurdles. We used visual analytics to inform pre-adaptation of a self-management program to fit the needs of older adult stroke survivors.

Factors Associated With the Initiation and Retention of Patients With Lupus in the Chronic Disease Self-Management Program.

The Chronic Disease Self-Management Program (CDSMP) is designed to enhance patients' self-efficacy and skills to manage their chronic illness. There is compelling evidence for the benefits of the CDSMP among patients with systemic lupus erythematosus (SLE); however, little is known about predictors of participation among Black women with SLE. We examined factors associated with CDSMP initiation and completion in this population. We studied 228 Black women with SLE who consented to attend a CDSMP workshop. We used logistic regression to calculate unadjusted and adjusted odds ratios (ORs) for being a CDSMP initiator (a participant registered into the CDSMP who attended at least 1 of the first 2 weekly classes) and a CDSMP completer (a participant who completed at least 4 of 6 weekly classes). The majority of participants were CDSMP initiators (74% [n=168]). Of those, 126 (75%) were CDSMP completers. Older age (adjusted OR [ORadj ] 1.03 [95% confidence interval (95% CI) 1.00-1.06]) and unemployment/disability (ORadj 2.05 [95% CI 1.05-4.14]) increased the odds of being a CDSMP initiator. The odds of initiating the CDSMP decreased by 22% for each additional child in the household (OR 0.78 [95% CI 0.62-0.98]), but this association became nonsignificant in the adjusted model (ORadj 0.89 [95% CI 0.68-1.18]). The only factor that differed significantly between CDSMP completers and noncompleters was age, with 4% higher odds of being a completer for each additional year of age (ORadj 1.04 [95% CI 1.00-1.07]). Our findings suggest that young Black women with SLE face barriers to attend and complete in-person CDSMP workshops, possibly in relation to work and child care demands.