[Abstract + References] Is independence enough? Rehabilitation should include autonomy and social engagement to achieve quality of life

Abstract

Purpose:

This discussion paper argues that holding independence as the central goal for rehabilitation has limitations that hinder successful outcomes. It shows why autonomy and social engagement should also serve as goals of rehabilitation, in order to achieve quality of life and effective functioning.

Methods:

The paper reviews problems arising from the over-emphasis on independence in rehabilitation. Although independence is a valuable goal on some tasks, it is sometimes not possible or desirable and is best complimented by autonomy and social engagement. Autonomy recognises that enacting some goals requires the support of other people. Autonomy is thus linked to social engagement (connectivity) in the workplace and personal relationships. The paper applies this framework to motor and cognitive disabilities.

Results:

The inclusion of autonomy and social engagement as goals for rehabilitation addresses the limitations of independence and can serve the unifying aim of enhancing the person’s quality of life. These goals apply equally to motor disabilities and the cognitive and behavioural effects of injuries which affect personal and work relationships.

Conclusions:

Rehabilitation is likely to be more effective if it aims at a combination of independence, autonomy and social engagement, in service of the goal of a good quality of life.

References

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[Abstract] Physical activity in people with epilepsy: A systematic review

Abstract

This study aimed to systematically review studies focusing on levels of physical activity (PA) in people with epilepsy (PWE) compared with non‐epilepsy controls, and identify factors associated with PA in PWE.

Intervention studies were also reviewed to consider the effects of psychological interventions on levels of PA, and the effects of PA‐based interventions on seizure activity, psychiatric comorbidity, and health‐related quality of life (HRQoL). PRISMA guidelines were followed. Searches were conducted using PubMed, Cochrane Controlled Register of Trials, PsycINFO, and Embase.

Forty‐six studies met inclusion criteria, including case‐control, cross‐sectional, and intervention studies. Assessment measures included questionnaires, activity trackers, and measures of physiological fitness. Twelve of 22 (54.5%) case‐control studies utilizing self‐report questionnaire measures reported that PWE were performing lower levels of PA, less likely to be engaging in PA, or less likely to meet PA guidelines than controls. The remaining studies did not find a difference between PWE and controls. Eight of 12 (67%) case‐control studies utilizing exercise/fitness tests reported that PWE performed significantly poorer than controls, whereas in two studies PWE performed better than controls. One of three studies investigating the relationship between PA and seizure frequency found that increased self‐reported PA was associated with having fewer seizures, whereas two did not find a significant relationship.

All seven cross‐sectional studies that included measures of HRQoL and depression/anxiety found a positive relationship between levels of PA and HRQoL/reduced levels of depression and anxiety. All four studies that used PA‐based interventions demonstrated improvements in levels of PA and increased HRQoL. Study quality was almost universally low. In conclusion, there is some evidence that PWE engage in less PA than peers, and that interventions can improve PA levels and HRQoL. However, there is a need for more robust study designs to better understand PA in individuals with epilepsy.

Source: https://onlinelibrary.wiley.com/doi/abs/10.1111/epi.16517

[Review] Associations between illness perceptions, self-criticism, self-reassurance and recovery outcomes following traumatic brain injury – Full Text PDF

Abstract

Section one presents a systematic literature review examining the relationship between injury perceptions and persistent post-concussion symptoms (PPCS), quality of life (QoL) and psychological distress outcomes in individuals following traumatic brain injury (TBI). Four databases were systematically searched using key words and thesaurus terms related to the concepts noted above. 12 papers were included in the final review. Findings suggest that the attribution of m re symptoms to the TBI, a perception that symptoms will last a long time, have more negative consequences and a stronger emotional reaction to the TBI, are more likely to be associated with increased PPCS. The identity, timeline, consequences, concern, emotional representations and personal control subscales were significantly associated with QoL outcomes following TBI. Longitudinal studies emphasise the predictive ability of injury perceptions following TBI which gives attention to the role of clinical psychology in acute management and follow-up of those who have suffered a TBI. Clinical implications and limitations of the review are discussed. Section two reports on an empirical investigation into the relationship between selfcriticism and both symptomatic (PPCS) and post-TBI depression in a sample of 41 adults who sustained a mild to moderate TBI between 3 and 12 months previous. Significant moderate effect size correlations between both self-criticism and self-reassurance with each of the outcomes assessed (early onset PPCS, late-enduring PPCS and post-TBI depression) were found. A series of multiple regression analyses evidenced that self-criticism demonstrated significant predictive ability above previously known predictors for enduring PPCS and also post-TBI depression. Self-reassurance did not demonstrate predictive ability. Limitations and clinical implications are discussed and include the relevance of self-criticism to both preventative and therapeutic intervention for individuals following TBI. Section three includes a critical appraisal of the thesis and processes involved in undertaking the above two research papers.

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Official URL: https://doi.org/10.17635/lancaster/thesis/1079

[ARTICLE] Depression impedes neuroplasticity and quality of life after stroke – Full Text

Abstract

Background and Purpose Depression following a stroke/poststroke depression (PSD) has been newly recognized as one of the most common complications after stroke. PSD may affect neuroplasticity and quality of life. The purpose of present study was to find out effects of depression on functional recovery, quality of life and neuroplasticity in patients with acute stroke. 

Methods: A total of 76 cases were recruited for the study and out of which 44 were available for the analysis after six months. Patients were divided into three groups according to severity of depression: Group A (without depression), Group B (mild-to-moderate depression), and Group C (severe depression) on the basis of Patient Health Questionnaire-9 (PHQ-9) scale scores. All patients were assessed for depression by PHQ-9, and for quality of life by Stroke Specific Quality of Life (SSQOL) scale. Neuroplasticity was assessed by measuring levels of serum brain-derived neurotrophic factor. 

Results: Quality of life was observed to be significantly affected by depression (P ≤ 0.05). The most commonly affected characteristics were energy, family roles, mobility, self-care, social roles, upper extremity function, and work productivity. Serum BDNF levels were also affected significantly by depression (P ≤ 0.05). 

Conclusion: PSD is a serious complication, affecting quality of life and neuroplasticity (BDNF) in patients. Decreased neuroplasticity further may affect functional improvement.

Introduction

Despite decrease in stroke mortality rate, there has been increase in the stroke survivors with residual disability and impairment. This has grown interest in the factors that can affect recovery from stroke and quality of life.^[1] Depression after stroke or poststroke depression (PSD) is one of the factors that can negatively influence the functional outcome after stroke but is often ignored. With a possible role also in cognitive status and survival, it is an obvious source of suffering for patients and caregivers.^[2] PSD may impede rehabilitation, recovery, quality of life, and caregiver’s health.^{[3],[4],[5],[6]} Depression after stroke, though recognized for more than a century, had never received the attention that has been devoted to other stroke complications, such as motor impairment, language problems, or cognitive deficits.^[7] PSD not only leads to poor involvement in rehabilitation and delays functional recovery but results in limited social activity and increased disability.^[8],[9] Moreover, 12.3–73.2% of stroke survivors suffer from concurrent depression and anxiety which further delays recovery from stroke.^{[10],[11],[12]}

The prevalence of PSD (13.7–31.1%) is four times higher than the likelihood of having depression in the general population without comorbid physical disease. When physical recovery is the main focus of treatment, occurrence of depression and anxiety can be overlooked in the early stage of stroke recovery.^[8],[13] Consequently, depression and anxiety are usually diagnosed poorly and inadequately treated.^[8],[14] Recognizing these symptoms is difficult because they often overlap with stroke-related impairments.^[11],[14]

Based on the literature, the most consistent factors associated with PSD are severe stroke and physical disability.^[15] Close relationship between PSD and neurological deficits suggests that PSD may be a psychological, reactive depressive symptom associated with sudden functional deficits.^[16],[17] When there are prolonged functional deficits, subsequent familial and social issues may perpetuate PSD.^[18] Several clinical studies on major depressive disorder (MDD) have shown that blood–brain-derived neurotrophic factor (BDNF) is associated with depression response. BDNF is a neurotrophin related to neuronal survival, synaptic signaling, and synaptic consolidation.^[19] Several studies have been performed assessing BDNF levels in MDD and showing important correlations between MDD and BDNF levels.^[20]

Studies regarding the PSD and its impact on neuroplasticity and quality of life are still lacking. The current study was designed to assess patients for depression (by Patient Health Questionnaire-9 [PHQ-9]), levels of serum brain-derived neurotrophic factor (S. BDNF), and their impact on quality of life (by Stroke Specific Quality of Life Scale [SSQOL]) in patients with stroke.[…]

Continue —> http://www.jfmpc.com/article.asp?issn=2249-4863;year=2020;volume=9;issue=8;spage=4039;epage=4044;aulast=Chaturvedi

[Abstract] The predictors of proxy- and self-reported quality of life among individuals with acquired brain injury

Abstract

Purpose

Acquired brain injury (ABI) diminishes quality of life (QoL) of affected individuals and their families. Fortunately, new multidimensional instruments such as the calidad de vida en daño cerebral (CAVIDACE) scale are available. However, differences in self- and proxy-reported QoL remain unclear. Therefore, this study examined these differences and identified predictors of QoL among individuals with ABI.

Materials and methods

This cross-sectional study comprised 393 adults with ABI (men: 60%; M _age = 54.65, SD = 14.51). Self-, family-, and professional-reported QoL were assessed using the CAVIDACE scale. Other personal and social variables were assessed as predictors of QoL.

Results

Professionals had the lowest QoL scores (M = 1.88, SD = 0.45), followed by family members (M = 2.02, SD = 0.44) and individuals with ABI (M = 2.10, SD = 0.43). Significant differences were found for almost all QoL domains, finding the highest correlations between family and professional proxy measures (r = 0.63). Hierarchical regression analysis revealed that sociodemographic, clinical, rehabilitation, personal, and social variables were significant predictors of QoL.

Conclusions

It is necessary to use both self- and proxy-report measures of QoL. Additionally, the identification of the variables that impact QoL permits us to modify the interventions that are offered to these individuals accordingly.

• Implications for rehabilitation
• Acquired brain injury (ABI) causes significant levels of disability and affects several domains of functioning, which in turn can adversely affect quality of life (QoL).
• QoL is a multidimensional construct that is affected by numerous factors: sociodemographic, clinical, personal, social, etc; and also, with aspects related to the rehabilitation they receive after ABI.
• Rehabilitation programs should address the different domains of functioning that have been affected by ABI.
• Based on research findings about the QoL’s predictors, modifications could be made in the rehabilitation process; paying special attention to the depressive- and anosognosia process, as well as the importance of promoting social support, community integration, and resilience.

Source: https://www.tandfonline.com/doi/full/10.1080/09638288.2020.1803426?af=R&utm_source=researcher_app&utm_medium=referral&utm_campaign=RESR_MRKT_Researcher_inbound

[Abstract] Physical activity in people with epilepsy: A systematic review

Abstract

This study aimed to systematically review studies focusing on levels of physical activity (PA) in people with epilepsy (PWE) compared with non-epilepsy controls, and identify factors associated with PA in PWE. Intervention studies were also reviewed to consider the effects of psychological interventions on levels of PA, and the effects of PA-based interventions on seizure activity, psychiatric comorbidity, and health-related quality of life (HRQoL). PRISMA guidelines were followed. Searches were conducted using PubMed, Cochrane Controlled Register of Trials, PsycINFO, and Embase. Forty-six studies met inclusion criteria, including case-control, cross-sectional, and intervention studies. Assessment measures included questionnaires, activity trackers, and measures of physiological fitness. Twelve of 22 (54.5%) case-control studies utilizing self-report questionnaire measures reported that PWE were performing lower levels of PA, less likely to be engaging in PA, or less likely to meet PA guidelines than controls. The remaining studies did not find a difference between PWE and controls. Eight of 12 (67%) case-control studies utilizing exercise/fitness tests reported that PWE performed significantly poorer than controls, whereas in two studies PWE performed better than controls. One of three studies investigating the relationship between PA and seizure frequency found that increased self-reported PA was associated with having fewer seizures, whereas two did not find a significant relationship. All seven cross-sectional studies that included measures of HRQoL and depression/anxiety found a positive relationship between levels of PA and HRQoL/reduced levels of depression and anxiety. All four studies that used PA-based interventions demonstrated improvements in levels of PA and increased HRQoL. Study quality was almost universally low. In conclusion, there is some evidence that PWE engage in less PA than peers, and that interventions can improve PA levels and HRQoL. However, there is a need for more robust study designs to better understand PA in individuals with epilepsy.

Source: https://pubmed.ncbi.nlm.nih.gov/32396216/

[ARTICLE] Protocol for the economic evaluation of the InTENSE program for rehabilitation of chronic upper limb spasticity – Full Text

Abstract

Background

Assessment of the costs of care associated with chronic upper-limb spasticity following stroke in Australia and the potential benefits of adding intensive upper limb rehabilitation to botulinum toxin-A are key objectives of the InTENSE randomised controlled trial.

Methods

Recruitment for the trial has been completed. A total of 139 participants from 6 stroke units across 3 Australian states are participating in the trial. A cost utility analysis will be undertaken to compare resource use and costs over 12 months with health-related quality of life outcomes associated with the intervention relative to a usual care comparator. A cost effectiveness analysis with the main clinical measure of outcome, Goal Attainment Scaling, will also be undertaken. The primary outcome measure for the cost utility analysis will be the incremental cost effectiveness ratio (ICER) generated from the incremental cost of the intervention as compared to the incremental benefit, as measured in quality adjusted life years (QALYs) gained. The utility scores generated from the EQ-5D three level instrument (EQ-5D-3 L) measured at baseline, 3 months and 12 months will be utilised to calculate the incremental Quality Adjusted Life Year (QALY) gains for the intervention relative to usual care using area-under the curve methods.

Discussion

The results of the economic evaluation will provide evidence of the total costs of care for patients with chronic upper limb spasticity following stroke. It will also provide evidence for the cost-effectiveness of adding evidence-based movement therapy to botulinum toxin-A as a treatment, providing important information for health system decision makers tasked with the planning and provision of services.

Background

People with spasticity following stroke have significantly higher care costs (particularly direct healthcare costs, and aged care costs) and lower quality of life than those survivors without spasticity [1,2,3]. Therefore, identifying effective therapies to reduce upper-limb spasticity and improve function are an important target for research.

International clinical guidelines support the use of botulinum toxin-A in conjunction with active rehabilitation as the preferred treatment [4]. However, the optimum rehabilitation strategy remains undetermined. There are a lack of adequately powered randomised controlled trials evaluating the effect of botulinum toxin-A injections alone, compared to the injection plus active rehabilitation. However, consideration of the costs of providing care for these patients and ultimately consideration of the cost effectiveness of new therapies (namely, whether they are a worthwhile spend of the constrained resources of the healthcare budget as compared to other potential therapies) is another important factor [5].

There have been few studies of the economic impact of upper-limb spasticity following stroke. Lundström et al. [2] evaluated the healthcare costs for the year following stroke in those with and without spasticity in Sweden, and identified that direct health care costs were four times higher in those with spasticity compared to those without, predominantly due to increased costs of hospital care and post hospital community care (i.e. home help services, residential care etc). However, this study only included hospitalised patients and was based on only 25 participants with spasticity. More recently in the UK, Raluy-Callado [3] evaluated costs of care in over 2900 post-stroke spasticity patients and found that those with spasticity following stroke had double the healthcare costs of those without spasticity with increased hospital care contributing to increased costs in this group, but were not able to include information on home and community care in their estimate. In addition, the potential economic impacts of spasticity following stroke are broad ranging, with loss of workforce productivity among patients and their caregivers which persisit after the event [6]. However, the potential cost-effectiveness of therapies is under-researched, with no economic evaluations to date evaluating the impact of evidence-based movement training combined with botulinum toxin-A injections [1, 7, 8]. Rychlik et al. 2016 evaluated the impact for the health care costs and quality of life of botulinum toxin-A treatment vs usual care without botulinum toxin-A. The study showed a significant improvement in the physical and mental health status of participants over the follow up period. Increased healthcare costs were evident for the participants who received the treatment, but despite higher incremental costs (driven by higher pharmaceutical and nursing home care costs) the study authors concluded the intervention was very likely to be considered cost effective due to the large gains in quality of life attributed to the intervention group compared to usual care. However a key limitation of this study was that it was not randomised and the results may have been influenced by confounding factors in the treatment and usual care groups [1]. Conversely, the BoTULS trial evaluated the clinical and cost effectiveness of treating upper-limb spasticity with botulinum toxin-A plus physical therapy vs physical therapy alone over a 4 week intervention period. The study authors concluded that the intervention had a low probability of cost-effectiveness compared to usual care using the UK reference care willingness to pay threshold of £20,000 for an additional QALY gained [9].

In addition, there is an absence of studies from an Australian perspective. Makino et al. 2018 [8] have published the only Australian based study which evaluated the cost-effectiveness of extending botulinum toxin-A therapy beyond the four treatments currently supported by the Pharmaceutical Benefits Scheme. This study was undertaken from the health-care payer perspective, and therefore included direct healthcare costs in the Markov-state transition model that was developed. It was found that extending the number of treatments beyond four was likely to be considered cost effective. However, the study authors didn’t include costs or benefits from rehabilitation or physical therapy in addition to the botulinum toxin-A in their analysis.

The cost of botulinum toxin-A injections is significant, calculated as $1673 Australian Dollars per treatment cycle and patients may receive multiple cycles of treatment [4, 8]. The InTENSE trial [10] aims to determine the clinical and cost effectiveness of including evidence-based movement training with botulinum toxin-A injections. Therefore, interventions to improve the long-term effect of botulinum toxin-A injections in this group could assist in improving quality of life of patients and reducing their healthcare and broader community care costs. Here we describe in detail the protocol for the economic evaluation to occur alongside the evaluation of clinical effect for the InTENSE trial.[…]

Continue —-> Protocol for the economic evaluation of the InTENSE program for rehabilitation of chronic upper limb spasticity | BMC Health Services Research | Full Text

 

[Abstract] Exergames in people with major neurocognitive disorder: a systematic review

Abstract

Purpose

To systematically evaluate the efficacy of exergames in individuals with major neurocognitive disorder.

Materials and methods

PubMed, EMBASE and PEDro were systematically searched from inception until October 2019 for randomised and clinical controlled trials. Methodological quality of the trials was assessed with the PEDro rating scale or Risk of Bias in Nonrandomised Studies of Interventions-I (ROBINS-I), when appropriate. Grading of Recommendations Assessments, Development and Evaluation (GRADE) was used to assess the overall quality of the evidence.

Results

Eight trials, all of moderate to high methodological quality (i.e., PEDro score of 6 or higher or a Robins-I moderate quality score) were included. The overall quality of evidence was moderate to high according to the GRADE criteria. Improvements in gait, mobility and balance and beneficial effects on activities of daily living performance, cognitive function, fear of falls, quality of life and mood following exergaming were reported. Heterogeneity in outcome measures, intervention characteristics and included participants precluded a meta-analysis.

Conclusions

The current literature is of moderate to high quality and demonstrates that exergames have a wide range of physical and mental benefits in people with major neurocognitive disorder. More controlled trials are however needed to confirm the existing evidence before exergames can be recommended in treatment guidelines for people with major neurocognitive disorder.

Implications for rehabilitation

• Exergames have many physical and mental benefits in people with major neurocognitive disorder

• Exergaming can enhance gait, mobility and balance in people with major neurocognitive disorder

• Evidence for beneficial cognitive effects of exergaming is emerging

via Exergames in people with major neurocognitive disorder: a systematic review: Disability and Rehabilitation: Assistive Technology: Vol 0, No 0

[Abstract] Effectiveness of a self-rehabilitation program to improve upper-extremity function after stroke in developing countries: a randomized controlled trial

Abstract

Background: About two-thirds of stroke patients present long-term upper-limb impairment and limitations of activity, which constitutes a challenge in rehabilitation. This situation is particularly true in developing countries, where there is a need for inexpensive rehabilitation solutions.

Objective: This study assessed the effectiveness of a self-rehabilitation program including uni- or bimanual functional exercises for improving upper-limb function after stroke with respect to the context in Benin, West Africa.

Methods: In this single-blind randomized controlled trial, chronic stroke individuals (> 6 months post-stroke) performed a supervised home-based self-rehabilitation program for 8 weeks (intervention group); the control group did not receive any treatment. Participants were assessed before treatment (T0), at the end of treatment (T1) and 8 weeks after the end of treatment (T2). The primary outcome was the manual ability of the upper limb, assessed with ABILHAND Stroke Benin. Secondary outcomes were grip force, motor impairment (Fugl-Meyer Assessment-Upper Extremity), gross manual ability (Box and Block test, Wolf Motor Function test) and quality of life (WHOQOL-26).

Results: We included 28 individuals in the intervention group and 31 in the control group. Adherence to the program was 83%. After 8 weeks of self-rehabilitation, individuals in the intervention group showed significantly improved manual ability and grip force as compared with the control group (p < 0.001), with effect size 0.75 and 0.24, respectively. In the intervention group, the difference in average scores was 10% between T0 and T1 and between T0 and T2. Subscores of physical and psychological quality of life were also significantly improved in the intervention group. The other variables remained unchanged.

Conclusions: A self-rehabilitation program was effective in improving manual ability, grip force and quality of life in individuals with stroke in Benin. More studies are needed to confirm these results in different contexts.

 

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[ARTICLE] Enhancing epilepsy self-management and quality of life for adults with epilepsy with varying social and educational backgrounds using PAUSE to Learn Your Epilepsy – Full Text

Highlights

•PAUSE is a personalized epilepsy self-management (SM) education program.

•PAUSE was implemented in diverse and mostly underserved adults with epilepsy.

•Self-efficacy, frequency of SM behaviors, and QOL significantly improved over time.

•Personal negative impact of epilepsy significantly reduced over time.

•Greater improvement was seen in those with lower scores at baseline.

Abstract

Purpose

People with epilepsy (PWE) come from a wide variety of social backgrounds and educational skillsets, making self-management (SM) education for improving their condition challenging. Here, we evaluated whether a mobile technology-based personalized epilepsy SM education intervention, PAUSE to Learn Your Epilepsy (PAUSE), improves SM measures such as self-efficacy, epilepsy SM behaviors, epilepsy outcome expectations, quality of life (QOL), and personal impact of epilepsy in adults with epilepsy.

Methods

Recruitment for the PAUSE study occurred from October 2015 to March 2019. Ninety-one PWE were educated using an Internet-enabled computer tablet application that downloads custom, patient-specific educational programs from Epilepsy.com. Validated self-reported questionnaires were used for outcome measures. Participants were assessed at baseline (T0), the first follow-up at completion of the PWE-paced 8–12-week SM education intervention (T1), and the second follow-up at least 3 months after the first follow-up (T2). Multiple linear regression was used to assess within-subject significant changes in outcome measures between these time points.

Results

The study population was diverse and included individuals with a wide variety of SM educational needs and abilities. The median time for the first follow-up assessment (T1) was approximately 4 months following the baseline (T0) and 8 months following baseline for the second follow-up assessment (T2). Participants showed significant improvement in all SM behaviors, self-efficacy, outcome expectancy, QOL, and personal impact of epilepsy measures from T0 to T1. Participants who scored lower at baseline tended to show greater improvement at T1. Similarly, results showed that participant improvement was sustained in the majority of SM measures from T1 to T2.

Conclusion

This study demonstrated that a mobile technology-based personalized SM intervention is feasible to implement. The results provide evidence that epilepsy SM behavior and practices, QOL, outcome expectation for epilepsy treatment and management, self-efficacy, and outcome expectation and impact of epilepsy significantly improve following a personalized SM education intervention. This underscores a greater need for a pragmatic trial to test the effectiveness of personalized SM education, such as PAUSE to Learn Your Epilepsy, in broader settings specifically for the unique needs of the hard-to-reach and hard-to-treat population of PWE.

1. Introduction

Epilepsy, characterized by spontaneous recurrent seizures with unpredictable frequency, is a common and complex neurological disorder that affects the health and quality of life (QOL) of people with epilepsy (PWE) [1]. It is the fourth most common chronic neurological disorder after migraines, Alzheimer’s disease, and Parkinson’s disease in terms of 1-year prevalence per 1000 in the general population [2]. In 2015, approximately 1.2% of American adults reported living with epilepsy; 68.5% had seen a neurologist or epilepsy specialist; 93% were taking antiseizure medication (ASM), and, among those taking medication to control seizures, only 42.4% were seizure-free in the past year [3]. Epilepsy, especially with uncontrolled seizures, poses an immense burden to the people who have it, caregivers, and the society due to a number of factors including associated developmental, cognitive, and psychiatric comorbidities; ASM side effects; higher injury and mortality rates; poorer QOL; and increased financial burden. An estimated 3.0% of global disability-adjusted life years (DALYs) were from neurological disorders in 2010, a quarter of which were from epilepsy; epilepsy was the second-most burdensome chronic neurologic disorder worldwide in terms of DALYs [4].

Self-management (SM) education has shown to improve SM skills & behaviors and QOL in many chronic diseases including heart disease, diabetes, asthma, and arthritis [5,6]. Barlow defines self-management as an individual’s ability to manage the symptoms, treatments, physical and psychological consequences, and life style changes inherent in living with a chronic condition [7]. However, successful SM requires sufficient knowledge of the condition, its treatment, and necessary skills to perform SM activities. Like other chronic conditions, day-to-day management of epilepsy shifts from healthcare professionals to PWE. Epilepsy care demands active involvement of PWE in keeping up with the health effects of epilepsy and coping with social (e.g., family/friends, stigma, hobbies), health (e.g., seizure response/tracking, comorbidities such as depression/anxiety, sleep, safety, health literacy), employment (e.g., transportation, disability, absenteeism), and economic (e.g., cost of healthcare and medication) challenges. One can only self-manage their disease if they have the tools to do so, including knowledge, access to information relevant to their specific healthcare needs, and the ability to carry out the SM tasks needed for their condition. Evidence shows that many PWE are not knowledgeable about their disorder or often not educated about the risks of epilepsy, injury, and mortality [1,8]. Education needs also vary between individuals and subgroups of PWE. Women, in particular, may seek information on bone health and the effect of ASM on pregnancy or contraception, while older adults’ priorities may relate to fall safety and interactions of ASM with other medications. Existing evidence also reveals that, while patients with chronic diseases are willing to receive SM education materials, perceived information overload (i.e., too much or complex information) negatively influences their usage willingness [9]. Patients with low health literacy are even more susceptible to information overload [10]. The Institute of Medicine recognized SM education gaps for PWE and recommended (Recommendation 9) in its 2012 report, “Epilepsy Across the Spectrum: Promoting Health and Understanding,” to improve and expand educational opportunities for PWE and their families, as well as to ensure that all PWE and their families have access to accurate, clearly communicated educational materials and information [1].

Several studies have reported contradictory results after examining the efficacy of SM education interventions in improving PWE’s knowledge and understanding of epilepsy and QOL. The Modular Service Package Epilepsy study (MOSES) reported significant improvements in ASM tolerability, epilepsy knowledge, coping with epilepsy, and seizure frequency after 6 months following a 2-day SM education program [11]. Self-management education for people with poorly controlled epilepsy [SMILE (UK)] adapted MOSES for use in the United Kingdom and did not find the 2-day course to be effective in improving QOL or secondary outcome measures (anxiety and depression), after 12 months [12]. Though both MOSES and SMILE were randomized control trials (RCTs), MOSES included all adults with epilepsy whereas SMILE included only adults with chronic epilepsy who had two or more seizures in the prior 12 months. Another RCT compared the effectiveness of a multicomponent SM intervention consisting of five weekly, 2-hour group sessions each followed by a 2-hour group session after three weeks with usual care; they found no difference in measures of self-efficacy, though did find improvements in some epilepsy QOL domains and decreases in measures of ASM side effects [13]. Other studies examining the efficacy of in-person, group-based, online or phone/internet SM interventions, including the Centers for Disease Control and Prevention-supported Managing Epilepsy Well (MEW) network programs, did show improvement in epilepsy SM and QOL [[14], [15], [16], [17], [18]].

In addition to existing group-based programs, which require permission to use and specialized training, there is a greater need for patient-centered and patient-specific individualized education interventions for epilepsy SM that are publicly available, cost-effective, and easily disseminated to clinics or in community. The PAUSE to Learn Your Epilepsy (hereafter referred to as “PAUSE”), a MEW network collaboration center, was developed and implemented to address the needs of all PWE, especially those in underserved populations. This program uses publicly available education information from the Epilepsy Foundation (EF) website, epilepsy.com, linked to a mobile technology-based PAUSE application to provide patient-centered personalized epilepsy SM lesson plan to PWE. Detailed information about PAUSE including study design, recruitment, intervention, and assessments has been published previously [19,20]. We reported significantly lower epilepsy SM practices and behaviors among PWE from an underserved population as compared to all PWE. In this paper, we sought to determine whether the PAUSE intervention significantly improves self-efficacy, SM behavior & skills, QOL, personal impact of epilepsy, and epilepsy outcome expectancies over time in adults with epilepsy. We also assessed whether perceived depression symptoms influence longitudinal changes in SM measures following the PAUSE intervention.[…]

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