Effectiveness of a Blended Care Self-Management Program for Caregivers of People With Early-Stage Dementia (Partner in Balance): Randomized Controlled Trial (Preprint)

BACKGROUND The benefits of electronic health support for dementia caregivers are increasingly recognized. Reaching caregivers of people with early-stage dementia could prevent high levels of burden and psychological problems in the later stages. OBJECTIVE The current study evaluates the effectiveness of the blended care self-management program, Partner in Balance, compared to a control group. METHODS A single-blind randomized controlled trial with 81 family caregivers of community-dwelling people with mild dementia was conducted. Participants were randomly assigned to either the 8-week, blended care self-management Partner in Balance program (N=41) or a waiting-list control group (N=40) receiving usual care (low-frequent counseling). The program combines face-to-face coaching with tailored Web-based modules. Data were collected at baseline and after 8 weeks in writing by an independent research assistant who was blinded to the treatment. The primary proximal outcome was self-efficacy (Caregiver Self-Efficacy Scale) and the primary distal outcome was symptoms of depression (Center for Epidemiological Studies Depression Scale). Secondary outcomes included mastery (Pearlin Mastery Scale), quality of life (Investigation Choice Experiments for the Preferences of Older People), and psychological complaints (Hospital Anxiety and Depression Scale-Anxiety and Perceived Stress Scale). RESULTS A significant increase in favor of the intervention group was demonstrated for self-efficacy (care management, P=.002; service use P=.001), mastery (P=.001), and quality of life (P=.032). Effect sizes were medium for quality of life (d=0.58) and high for self-efficacy care management and service use (d=0.85 and d=0.93, respectively) and mastery (d=0.94). No significant differences between the groups were found on depressive symptoms, anxiety, and perceived stress. CONCLUSIONS This study evaluated the first blended-care intervention for caregivers of people with early-stage dementia and demonstrated a significant improvement in self-efficacy, mastery, and quality of life after receiving the Partner in Balance intervention, compared to a waiting-list control group receiving care as usual. Contrary to our expectations, the intervention did not decrease symptoms of depression, anxiety, or perceived stress. However, the levels of psychological complaints were relatively low in the study sample. Future studies including long-term follow up could clarify if an increase in self-efficacy results in a decrease or prevention of increased stress and depression. To conclude, the program can provide accessible preventative care to future generations of caregivers of people with early-stage dementia. CLINICALTRIAL Netherlands Trial Register NTR4748; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4748 (Archived by WebCite at http://www.webcitation.org/6vSb2t9Mg)

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The Interactive Web-Based Program MSmonitor for Self-Management and Multidisciplinary Care in Persons With Multiple Sclerosis: Quasi-Experimental Study of Short-Term Effects on Patient Empowerment

Journal of Medical Internet Research ◽

10.2196/14297 ◽

2020 ◽

Vol 22 (3) ◽

pp. e14297

Author(s):

Peter Joseph Jongen ◽

Gezien ter Veen ◽

Wim Lemmens ◽

Rogier Donders ◽

Esther van Noort ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Self Efficacy ◽

Multidisciplinary Care ◽

Self Management ◽

Control Group ◽

Short Term ◽

Quasi Experimental ◽

Program Components

Background Empowerment helps persons with a chronic disease to self-manage their condition and increase their autonomy and participation. MSmonitor (Curavista bv) is an interactive Web-based program for self-management and multidisciplinary care in multiple sclerosis (MS). It includes, among others, short questionnaires on fatigue (Modified Fatigue Impact Scale-5 [MFIS-5]) and health-related quality of life (HRQoL, Leeds Multiple Sclerosis Quality of Life [LMSQoL]); long questionnaires on disabilities, perception of disabilities (Multiple Sclerosis Impact Profile), and HRQoL (Multiple Sclerosis Quality of Life-54); a Medication and Adherence Inventory and an Activity Diary. The combination MFIS-5, LMSQoL, and Medication and Adherence Inventory constitutes the Quick Scan. Objective This study aimed to investigate the short-term effects of MSmonitor on empowerment in patients with MS. Methods We conducted a quasi-experimental study in a general hospital. Of the 180 patients with MS, 125 were eligible, 30 used MSmonitor, and 21 participated in the study (mean age 45.4 years, SD 10.2 years). A total of 24 eligible patients who did not use MSmonitor constituted the control group (mean age 49.3 years, SD 11.4 years). At baseline and at 4 months, we assessed self-efficacy (Multiple Sclerosis Self-Efficacy Scale [MSSES]), participation and autonomy (Impact on Participation and Autonomy [IPA] questionnaire), and self-management (Partners In Health [PIH] questionnaire). Differences between time points and groups were tested with paired t tests and χ² tests. Results In the MSmonitor group, follow-up values remained unchanged for MSSES control (P=.19), MSSES function (P=.62), IPA limitations (P=.26), IPA problems (P=.40), PIH recognition and management of symptoms (P=.52), PIH adherence to treatment (P=.80), and PIH coping (P=.73), whereas the PIH knowledge score had improved (mean 27.8, SD 1.7 vs mean 28.7, SD 2.0; P=.02). The overall utilization rate of the program components was 83% and that of the Quick Scan was 95%. In the control group, all outcomes had remained unchanged. Conclusions The results suggest that for first-time users of the MSmonitor program and their health care providers, it may not be justified to expect a short-term improvement in empowerment in terms of self-efficacy, self-management, autonomy, or participation. Furthermore, a lack of effect on empowerment is not because of nonusage of the program components.

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The impact of brief lifestyle self-management education for the control of seizures

British Journal of Nursing ◽

10.12968/bjon.2019.28.6.348 ◽

2019 ◽

Vol 28 (6) ◽

pp. 348-354 ◽

Cited By ~ 3

Author(s):

Karen-leigh Edward ◽

Mark Cook ◽

John Stephenson ◽

Jo-Ann Giandinoto

Keyword(s):

Quality Of Life ◽

Medication Adherence ◽

Self Efficacy ◽

Satisfaction With Life ◽

Self Management ◽

Control Group ◽

Management Intervention ◽

The Impact ◽

Psychological Quality Of Life

Aim: this study examined a brief lifestyle self-management intervention, based on self-determination theory, to manage seizure frequency, and its effects on health-related quality of life and resilience in people with epilepsy aged over 18 years. Background: most people with epilepsy can identify factors that may trigger seizures and may try to avoid these; however, education from clinicians on this varies. Design: a cohort study with control design. Method: sixty participants were purposively sampled and allocated to an intervention or a control group. Results: moderate correlations were found, particularly between: resilience and satisfaction with life; medication adherence and psychological quality of life; and psychological quality of life and satisfaction with life. The mean seizure occurrences between the control and intervention groups were 12.71 (SD 24.55) and 6.76 (SD 13.40) respectively after the intervention. While the study was not powered to assess this, the intervention may be most effective regarding medication adherence and physical health quality of life. Conclusion: the relationship between self-efficacy and seizure management appeared to be strengthened by the programme. This study is the first known to measure resilience in relation to lifestyle self-management for seizure control in people with epilepsy. Relevance to practice: nurses are well placed to work with patients' strengths towards self-efficacy and potentially resilient coping.

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Long-Lasting Effects of a New Memory Self-efficacy Training for Stroke Patients

Neurorehabilitation and Neural Repair ◽

10.1177/1545968313478487 ◽

2013 ◽

Vol 28 (3) ◽

pp. 199-206 ◽

Cited By ~ 18

Author(s):

Laurien Aben ◽

Majanka H. Heijenbrok-Kal ◽

Rudolf W. H. M. Ponds ◽

Jan J. V. Busschbach ◽

Gerard M. Ribbers

Keyword(s):

Quality Of Life ◽

Training Program ◽

Outcome Measures ◽

Self Efficacy ◽

Depression Scale ◽

Control Group ◽

Stroke Patients ◽

Experimental Group ◽

Psychological Quality Of Life

Background and purpose. This study aims to determine the long-term effects of a new Memory Self-efficacy (MSE) training program for stroke patients on MSE, depression, and quality of life. Methods. In a randomized controlled trial, patients were allocated to a MSE training or a peer support group. Outcome measures were MSE, depression, and quality of life, measured with the Metamemory-In-Adulthood questionnaire, Center for Epidemiological Studies–Depression Scale (CES-D), and the Who-Qol Bref questionnaire, respectively. We used linear mixed models to compare the outcomes of both groups immediately after training, after 6 months, and after 12 months, adjusted for baseline. Results. In total, 153 former inpatients from 2 rehabilitation centers were randomized—77 to the experimental and 76 to the control group. MSE increased significantly more in the experimental group and remained significantly higher than in the control group after 6 and 12 months (B = 0.42; P = .010). Psychological quality of life also increased more in the experimental group but not significantly (B = 0.09; P = .077). However, in the younger subgroup of patients (<65 years old), psychological quality of life significantly improved in the experimental group compared to the control group and remained significantly higher over time (B = 0.14; P = .030). Other outcome measures were not significantly different between both groups. Conclusions. An MSE training program improved MSE and psychological quality of life in stroke patients aged <65 years. These effects persisted during 12 months of follow-up.

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Psychosocial Factors That Influence Quality of Life and Potential for Self-Management in Multiple Sclerosis

International Journal of MS Care ◽

10.7224/1537-2073-12.3.133 ◽

2010 ◽

Vol 12 (3) ◽

pp. 133-141 ◽

Cited By ~ 11

Author(s):

Judy Ann Wollin ◽

Gary Fulcher ◽

Elizabeth McDonald ◽

Nancy Spencer ◽

Miranda Y. Mortlock ◽

...

Keyword(s):

Quality Of Life ◽

Multiple Sclerosis ◽

Social Support ◽

Disease Severity ◽

Perceived Stress ◽

Self Efficacy ◽

Disease Duration ◽

Self Management ◽

Mediating Variables

Optimizing quality of life (QOL) and self-management in people with multiple sclerosis (MS) is increasingly seen as a worthwhile goal. This study aimed to investigate factors that affect QOL in MS. A large national sample of Australians with MS (n = 1848) generated from the Australian Multiple Sclerosis Longitudinal Study completed a survey addressing disease duration and severity, self-efficacy, depression, perceived stress, social support, QOL, and self-management. We tested a model of self-help in which antecedent variables are influenced by mediating variables, which in turn affects outcome variables. In the current study, the antecedent variables were disease duration and disease severity; the mediating variables were self-efficacy, depression, perceived stress, and social support; and the outcome variables were QOL and self-management. We also tested the hypothesis that disease severity, depression, and perceived stress would correlate inversely with QOL and potential for self-management, whereas self-efficacy and perceived level of social support would correlate positively with QOL and potential for self-management. The results indicated that the antecedent variables did not correlate with the mediating variables, with one exception: a negative correlation was found between disease severity and social support. No correlations were found between social support and QOL or self-management. However, significant correlations were found between depression, self-efficacy, stress, and social support and QOL. No correlations were found between either the antecedent or the mediating variables and self-management. The results confirm previous findings of statistically significant correlations between psychosocial factors and QOL.

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Effect of Self-Management Support for Elderly People Post-Stroke: A Systematic Review

Geriatrics ◽

10.3390/geriatrics5020038 ◽

2020 ◽

Vol 5 (2) ◽

pp. 38

Author(s):

Sedsel Kristine Stage Pedersen ◽

Susanne Lillelund Sørensen ◽

Henriette Holm Stabel ◽

Iris Brunner ◽

Hanne Pallesen

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Self Efficacy ◽

Daily Living ◽

Psychosocial Outcomes ◽

Self Management ◽

Control Group ◽

Management Support ◽

Management Interventions

A systematic review was undertaken to determine the efficacy of self-management interventions for people with stroke over the age of 65 in relation to psychosocial outcomes. PubMed, Embase, and PsycInfo were searched for randomized controlled clinical trials. Studies were eligible if the included people with stroke had a mean age ≥65 years in both the intervention and control group. Data on psychosocial measurements were extracted and an assessment of methodological quality was undertaken. Due to heterogeneity across the studies, the results were synthesized narratively. Eleven studies were identified. They included different self-management interventions in terms of theoretical rationales, delivery, and content. Seven psychosocial outcomes were identified: i) self-management, ii) self-efficacy, iii) quality of life, iv) depression, v) activities of daily living, vi) active lifestyle, and vii) other measures. Self-management interventions for people with stroke over the age of 65 may be beneficial for self-management, self-efficacy, quality of life, activity of daily living, and other psychosocial outcomes. However, low study quality and heterogeneity of interventions, as well as variation in time of follow-up and outcome measures, limit the possibility of making robust conclusions.

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Knowledge, Attitude, and Self-Efficacy in Asthma Self-Management and Quality of Life

Journal of Asthma ◽

10.1080/02770903.2010.492540 ◽

2010 ◽

pp. 1-6

Author(s):

Carol A. Mancuso ◽

Wendy Sayles ◽

John P. Allegrante

Keyword(s):

Quality Of Life ◽

Self Efficacy ◽

Self Management

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Effect of Baduanjin exercise intervention on cognitive function and quality of life in women with breast cancer receiving chemotherapy: study protocol of a randomized controlled trial

Trials ◽

10.1186/s13063-021-05355-w ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Xiao-Lin Wei ◽

Ru-Zhen Yuan ◽

Yong-Mei Jin ◽

Shu Li ◽

Ming-Yue Wang ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Clinical Trial ◽

Cognitive Function ◽

Exercise Intervention ◽

Early Stage ◽

Early Stage Breast Cancer ◽

Pharmacological Intervention ◽

Control Group

Abstract Background More than 50% cognitive impairment was reported by cancer patients before and after medical treatment. However, there are no effective interventions to manage the cognitive problem in women with breast cancer. This pilot study was designed to evaluate the protective effect of Baduanjin exercise on cognitive function and cancer-related symptoms in women with early-stage breast cancer undergoing chemotherapy. Method A single-blinded, randomized control trial was designed. The trial will recruit 70 patients with early-stage breast cancer scheduled to receive chemotherapy from Shanghai in China. All participants will be randomly assigned to (1:1) the supervised Baduanjin group (5 times/week, 30 min each time) or the wait-list control group for 3 months. The effect of Baduanjin exercise intervention will be evaluated by outcome measures including subjective and objective cognitive function, symptoms (fatigue, depression, and anxiety), and health-related quality of life at pre-intervention (T0), 8 weeks (T1), and 12 weeks (T2). The PCI score in the FACT-Cog as the primary cognitive outcome will be reported descriptively, while effect sizes and 95% confidence intervals (CIs) will be calculated. The collected data will be analyzed by using an intention-to-treat principle and linear mixed-effects modeling. Discussion This is the first randomized clinical trial to investigate whether Baduanjin exercise will have a positive role in improving cognitive function in women with breast cancer receiving chemotherapy. If possible, Baduanjin exercise will be a potential non-pharmacological intervention to manage cognitive dysfunction and promote survivorship care among breast cancer survivors. Trial registration Chinese Clinical Trial Registry (ChiCTR) ChiCTR2000033152. Registered on 22 May 2020

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

Human Reproduction ◽

10.1093/humrep/deaa330 ◽

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 < 0.001). Physical quality of life was positively associated with income sufficiency (P < 0.001) and greater self-efficacy (P < 0.001), but negatively associated with age (P < 0.001), pain severity (P < 0.001), use of prescription medications (P < 0.001), having a chronic disease management plan (P < 0.05) and number of self-care activities (P < 0.05). Mental quality of life was positively associated with being older (P < 0.001), partnered (P < 0.001), having a university education (P < 0.05), increasing self-efficacy (P < 0.001) and higher partners in health scores (P < 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.

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