Posts Tagged QoL
[Review] Associations between illness perceptions, self-criticism, self-reassurance and recovery outcomes following traumatic brain injury – Full Text PDF
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.
2020PrescottDClinPsy.pdf – Published Version
Official URL: https://doi.org/10.17635/lancaster/thesis/1079
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.
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. 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. PSD may impede rehabilitation, recovery, quality of life, and caregiver’s health.,,, 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. PSD not only leads to poor involvement in rehabilitation and delays functional recovery but results in limited social activity and increased disability., Moreover, 12.3–73.2% of stroke survivors suffer from concurrent depression and anxiety which further delays recovery from stroke.,,
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., Consequently, depression and anxiety are usually diagnosed poorly and inadequately treated., Recognizing these symptoms is difficult because they often overlap with stroke-related impairments.,
Based on the literature, the most consistent factors associated with PSD are severe stroke and physical disability. Close relationship between PSD and neurological deficits suggests that PSD may be a psychological, reactive depressive symptom associated with sudden functional deficits., When there are prolonged functional deficits, subsequent familial and social issues may perpetuate PSD. 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. Several studies have been performed assessing BDNF levels in MDD and showing important correlations between MDD and BDNF levels.
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.[…]
[Abstract] The predictors of proxy- and self-reported quality of life among individuals with acquired brain injury
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.
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.
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.
[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.