Posts Tagged QoL
[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
•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.
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.
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.
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.
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.
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) . 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 . 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 . 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 .
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 . 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 . Patients with low health literacy are even more susceptible to information overload . 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 .
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 . 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 . 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 . 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 [, , , , ].
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.[…]
[ARTICLE] Effects of acquired chronic brain injury on quality of life: A preliminary study in patients with a left or right-sided lesion – Full Text PDF
[Abstract] Water-Based Exercise on Functioning and Quality of Life in Poststroke Persons: A Systematic Review and Meta-Analysis
To investigate the effects of water-based exercise on functioning and quality of life in poststroke persons.
We searched the following electronic database: MEDLINE, PeDro, Scielo, and the Cochrane Central Register of Controlled Trials up to September 2018 Study Selection: Only randomized controlled trials were included. Two review authors screened the titles and abstracts and selected the trials independently.
Two review authors independently extracted data of the included trials, using standard data-extraction model. We analyzed the pooled results using weighted mean differences, and standardized mean difference and 95% confidence intervals (CIs) were calculated.
Twenty-four studies met the study criteria, but only 15 studies were included on meta-analyses. The studies presented moderate methodological quality, due to the lack of blinding of subjects and therapists and the nonperformance of the intention-to-treat analysis. Water-based exercise compared with land exercise had a positive impact on: muscle strength balance gait speed and mobility aerobic capacity and functional reach. Combined water-based exercise and land exercise was more effective than land exercise for improving balance, gait speed, and functional reach. The meta-analysis showed significant improvement in role limitations due to physical functioning and emotional problems, in vitality general mental health, social functioning, and bodily pain for participants in the water-based exercise and land exercise group versus land exercise group.
Water-based exercise may improve muscle strength, balance, mobility, aerobic capacity, functional reach, joint position sense, and quality of life in poststroke persons and could be considered for inclusion in rehabilitation programs.
Epilepsy Across the Spectrum
Institute of Medicine (US) Committee on the Public Health Dimensions of the Epilepsies; Editors: Mary Jane England, Catharyn T Liverman, Andrea M Schultz, and Larisa M Strawbridge.
Throughout this report, the committee emphasizes the ways in which epilepsy is a spectrum disorder. Epilepsy comprises more than 25 syndromes and many types of seizures that vary in severity. Additionally, people who have epilepsy span a spectrum that includes men and women of all ages and of all socioeconomic backgrounds and races/ethnicities, who live in all areas of the United States and across the globe. The impacts on physical health and quality of life encompass a spectrum as well, with individuals experiencing different health outcomes and having a range of activities of daily living that may be affected, including driving, academic achievement, social interactions, and employment. For some people, epilepsy is a childhood disorder that goes into remission (although the seizures may have lifelong consequences), while for others it is a lifelong burden or a condition that develops later in life or in response to an injury or other health condition. These many complexities of epilepsy make it a challenging health condition to convey to the general public to promote understanding and alleviate stigma. This report aims to provide evidence and impetus for actions that will improve the lives of people with epilepsy and their families.
- THE NATIONAL ACADEMIES
- COMMITTEE ON THE PUBLIC HEALTH DIMENSIONS OF THE EPILEPSIES
- SCOPE OF WORK
- A VISION FOR THE FUTURE
- INCREASING THE POWER OF EPILEPSY DATA
- PREVENTING EPILEPSY
- IMPROVING HEALTH CARE
- IMPROVING COMMUNITY RESOURCES AND QUALITY OF LIFE
- RAISING AWARENESS AND IMPROVING EDUCATION
- STRENGTHENING STAKEHOLDER COLLABORATION
- ENGAGING PEOPLE WITH EPILEPSY AND THEIR FAMILIES
- PROMOTING HEALTH AND UNDERSTANDING
- 1. Introduction
- 2. Surveillance, Measurement, and Data Collection
- 3. Epidemiology and Prevention
- 4. Health Care: Quality, Access, and Value
- 5. Health Professional Education
- DEMONSTRATED KNOWLEDGE GAPS
- ATITTUDES AND BELIEFS OF HEALTH PROFESSIONALS
- INNOVATIVE TEACHING STRATEGIES
- MODELS FOR PROFESSIONAL EDUCATION
- CONTINUING EDUCATION
- ROLE OF EPILEPSY ORGANIZATIONS AND CENTERS
- EDUCATING HEALTH PROFESSIONALS TO EDUCATE PEOPLE WITH EPILEPSY AND THEIR FAMILIES
- 6. Quality of Life and Community Resources
- 7. Educating People with Epilepsy and Their Families
- GOALS AND PRIORITIES FOR EDUCATION
- UNDERSTANDING INFORMATION NEEDS
- WHERE, WHEN, AND HOW PEOPLE WITH EPILEPSY AND THEIR FAMILIES RECEIVE INFORMATION
- MODELS OF EPILEPSY EDUCATION AND SELF-MANAGEMENT
- LESSONS FROM MODELS FOR OTHER HEALTH CONDITIONS
- A VISION FOR OPTIMAL EPILEPSY EDUCATION
- 8. Public Education and Awareness
- 9. Next Steps and Recommendations
- A Workshop Agendas
- B IOM Data-Gathering Effort
- C Data on Specialized Epilepsy Centers: Report to the Institute of Medicine’s Committee on the Public Health Dimensions of the Epilepsies
- D Health Professionals Who Care for People with Epilepsy: Possible Roles and Relevant Boards and Organizations
- E Committee Biographies
[Abstract] The feasibility and impact of a yoga pilot programme on the quality-of-life of adults with acquired brain injury – CNS
OBJECTIVE: This pilot study measured the feasibility and impact of an 8-week yoga programme on the quality-of-life of adults with acquired brain injury (ABI).
METHODS: Thirty-one adults with ABI were allocated to yoga (n = 16) or control (n = 15) groups. Participants completed the Quality of Life After Brain Injury (QOLIBRI) measure pre- and post-intervention; individuals in the yoga group also rated programme satisfaction. Mann-Whitney/Wilcoxon and the Wilcoxon Signed Rank tests were used to evaluate between- and within-group differences for the total and sub-scale QOLIBRI scores, respectively.
RESULTS: No significant differences emerged between groups on the QOLIBRI pre- or post-intervention. However, there were significant improvements on overall quality-of-life and on Emotions and Feeling sub-scales for the intervention group only. The overall QOLIBRI score improved from 1.93 (SD = 0.27) to 2.15 (SD = 0.34, p = 0.01). The mean Emotions sub-scale increased from 1.69 (SD = 0.40) to 2.01 (SD = 0.52, p = 0.01), and the mean Feeling sub-scale from 2.1 (SD = 0.34) to 2.42 (SD = 0.39, p = 0.01).
CONCLUSION: Adults with ABI experienced improvements in overall quality-of-life following an 8-week yoga programme. Specific improvements in self-perception and negative emotions also emerged. High attendance and satisfaction ratings support the feasibility of this type of intervention for people with brain injury.
[ARTICLE] Visual Impairment Following Stroke – The Impact on Quality of Life: A Systematic Review – Full Text PDF
Background: The visual impairments caused by stroke have the potential to affect the ability of an individual to perform activities of daily living. An individual with visual impairment may also have reduced level of independence. The purpose of this review was to investigate the impact on quality of life from stroke related visual impairment, using subjective patient reported outcome measures.
Methods: A systematic search of the literature was performed. The inclusion criteria required studies to have adult participants (aged 18 years or over) with a diagnosis of a visual impairment directly resulting from a stroke. Studies which included visual impairment as a result of other intracranial aetiology, were included if over half of the participants were stroke survivors. Multiple scholarly online databases and registers of published, unpublished and ongoing trials were searched, in addition articles were hand searched. MESH terms and alternatives in relation to stroke and visual conditions were used. Study selection was performed by two authors independently. Data was extracted by one author and verified by a second. The quality of the evidence was assessed using a quality appraisal tool and reporting guidelines.
Results: This review included 11 studies which involved 5646 participants, the studies used a mixture of generic and vision-specific instruments. The seven instruments used by the included studies were the EQ-5D, LIFE-H, SF-36, NEI VFQ-25, VA LV VFQ-48, SRA-VFP and DLTV.
Conclusion: A reduction in quality of life was reported by all studies in stroke survivors with visual impairment. Some studies used generic instruments, therefore making it difficult to extract the specific impact of the visual impairment as opposed to the other deficits caused by stroke. The majority of studies (8/11) primarily had participants with visual field loss. This skew towards visual field loss and no studies investigating the impact ocular motility prevented a comparison of the effects on quality of life due to different visual impairments caused by stroke. In order to fully understand the impact of visual impairment following stroke on quality of life, further studies need to use an appropriate vision-specific outcome measure and include all types of visual impairment which can result from a stroke.
The purpose of this study was to develop a computational method to identify potential predictors for quality of life (QOL) after post stroke rehabilitation.
Five classifiers were trained by five personal factors and nine functional outcome measures by 10-fold cross-validation. The classifier with the highest cross-validated accuracy was considered to be the optimal classifier for QOL prediction.
Particle Swarm-Optimized Support Vector Machine (PSO-SVM) showed highest accuracy in predicting QOL in stroke patients and was adopted as the optimal classifier. Potential predictors were assessed by PSO-SVM with feature selection. The early outcomes of Quality of Movement scale of the Motor Activity Log (MAL_QOM) and the Stroke Impact Scale (SIS) were identified to be the most predictive outcome predictors for QOL.
The approach provides the medical team another possibility to improve the accuracy in predicting QOL in stroke patients. Therapists could determine the therapies for stroke patients more accurately and efficiently to enhance the quality of life after stroke.
Stroke remains a leading cause of death and disability in the developed world . After stroke, the effects of stroke and post stroke rehabilitation are usually assessed by health professional ratings and performance tests [2–4]. However, real life of stroke survivors is affected in multiple ways and may not be described completely by only health and functional status. It is possible that a treatment succeeds in enhancing physical function recovery however induces psychosocial problems [5,6]. In this case, quality of life (QOL) may actually be degraded after poststroke rehabilitation. The WHO suggests that a comprehensive view of quality of life includes not only physical health, but also psychological health, social relationships, and environmental quality . Therefore, to obtain a comprehensive view of the effects after stroke, life quality should also be considered when assessing a person’s health and functioning.
In recent years, assessment of QOL in stroke has become increasingly common. Many recent rehabilitation therapies have been reported to be effective in restoring upper limb motor function after stroke but showed varied effects in QOL [7–10]. Different rehabilitation therapies may benefit different subgroups of the stroke population and cause different effects to QOL. Identifying key predictors of QOL may assist therapists to determine an optimal therapy, which can not only improve physical function but also maximize QOL for a specific subgroup of stroke survivors. Decision making of rehabilitation strategies may be more efficient and complete with identifying predominant predictors of QOL.
Only three studies examined predictors of QOL [5,11,12]. In these three studies, the predictive ability of multiple factors was examined, including demographic factors, vascular risk factors, clinical scales and neuropsychological assessment, and lesion characteristics. However, general predictors of outcomes of QOL were hard to determine because of the heterogeneity among these studies. Both physical and psychological factors were reported to be important in predicting QOL after stroke [5,11,12]. Although stroke rehabilitation gains in QOL are important, the question of which patients may benefit most in QOL from specific therapies has not been widely addressed, and statistical approaches to reveal such associations and predictors may not be optimal [13,14]. However, possible predictors related to QOL performance outcome after rehabilitation remained less discussed. More studies are needed to clarify the predictive ability of diverse QOL predictors in stroke patients.
Practical implementation of outcome predictors in clinical use was also constrained by the complexity of the algorithms. Developing prognostic algorithm based on existing and simple algorithms may reduce the complexity in clinical implementation, increase the use of prognostic model, and further improve the efficiency of rehabilitation therapy. Traditionally, studies examined outcome predictors used regression analysis to discriminate the most predictive factors from others [15–18]. However, the results of regression analysis can only explained the variance of the outcome in percentage. Computational methods can provide another aspect of outcome prediction. The results of regression statistical method showed that the factors were predictors for the outcome measure model, and the model only explained how percentage of the variance in the outcome measure scores. However, the results of computational classifier methods can provide accuracy and more application related to the predictors.
It has been applied in predicting clinical outcome in cancer patients and showed high accuracy and efficiency [19,20]. Using classifiers could improve the accuracy in predicting QOL. Hopefully, predominant predictors could also be better identified. That’s why we try to utilize a computational classifier method to identify potential predictors for quality of life (QOL) after post stroke rehabilitation.
OBJECTIVE: The aim of this study was to assess the quality of life (QoL) of
traumatic brain injury (TBI) patients and to explore its predictive factors.
MATERIAL/PATIENTS AND METHODS: This is a descriptive and analytical
cross-sectional study, including 27 TBI patients followed in the physical
medicine and rehabilitation department (PMR). The collected data were: age,
educational level, marital status, initial Glosgow score and intensive care unit
length of stay. The assessment of the QoL was based on two scales, the first one was specific: Quality of Life after Brain Injury (QOLIBRI), while the second was generic: the SF-36. We had assessed memory disorders by the mini mental state (MMS) and functional capacity by The Functional Independence Measure (FIM). The handicap was assessed by Go Outcome Scale (GOS). Possible correlations between QoL and the different variables were explored.
RESULTS: The mean age of patients was 32.19 years. For QOLIBRI scale, the overall average score was 48.03%, the most affected dimensions were the feelings and social relations. Regarding the SF-36 scale, impaired QoL was found in 74% of these patients, the overall average score was 43.02. A significant correlation was found between QOLIBRI and mental composite score of the SF-36 (P=0.012). Memory disorder was significantly correlated with QoL (P=0.037). There were no statistically significant correlations between QoL and the other variables.
DISCUSSION-CONCLUSION: Memory disorder was the main predictive factor of impaired quality of life of traumatic brain injury patients; however, there was no correlation between handicap and QoL. This alteration of QOL has clinical implications and highlights the necessity of more efforts to optimize the rehabilitation interventions.