In response to criticism that epilepsy care for children has little impact, healthcare professionals and administrators have developed various service models and strategies to address perceived inadequacies.
•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.[…]
❖ Person-centred rehabilitation (PCR) means treating each service user undergoing rehabilitation as an individual.
❖ There is a strong and committed drive to provide this type of rehabilitation both nationally and internationally.
❖ To help rehabilitation teams improve their ability to deliver person-centred rehabilitation a training package was developed.
❖ The package is designed to be undertaken in teams.
❖ The sessions will be delivered by a trained facilitator.
❖ Some examples of package content appear below.
Spastic paresis is a common feature of an upper motor neuron impairment caused by stroke, brain injury, multiple sclerosis and other central nervous system (CNS) disorders. Existing national and international guidelines for the treatment of adult spastic paresis tend to focus on the treatment of muscle overactivity rather than the comprehensive approach to care, which may require life-long management. Person-centered care is increasingly adopted by healthcare systems in a shift of focus from “disease-oriented” towards “person-centered” medicine. The challenge is to apply this principle to the complex management of spastic paresis and to include an educative process that engages care providers and patients and encourages them to participate actively in the long-term management of their own disease. To address this issue, a group of 13 international clinicians and researchers used a pragmatic top-down methodology to evaluate the evidence and to formulate and grade the strength of recommendations for applying the principles of person-centered care to the management of spastic paresis. There is a distinct lack of clinical trial evidence regarding the application of person-centered medicine to the rehabilitation setting. However, the current evidence base supports the need to ensure that treatment interventions for spastic paresis should be centered on as far as reasonable on the patient’s own priorities for treatment. Goal setting, negotiation and formal recording of agreed SMART goals should be an integral part of all spasticity management programs, and goal attainment scaling should be recorded alongside other standardized measures in the evaluation of outcome. When planning interventions for spastic paresis, the team should consider the patient and their family’s capacity for self-rehabilitation, as well as ways to enhance this approach. Finally, the proposed intervention and treatment goals should consider the impact of any neuropsychological, cognitive and behavioral deficits on rehabilitation. These recommendations support a person-centric focus in the management of spastic paresis.
via A comprehensive person-centered approach to adult spastic paresis: a consensus-based framework – European Journal of Physical and Rehabilitation Medicine 2018 August;54(4):605-17 – Minerva Medica – Journals
A systematic review of Medline, EMBASE, CINAHL, SCOPUS and IEEE Xplore up to February 2018 was carried out. Studies of stroke arm interventions were included where more than 50% of the time spent in therapy was initiated and carried out by the participant. Quality of the evidence was assessed using the Cochrane risk of bias tool.
A total of 40 studies (n = 1172 participants) were included (19 randomized controlled trials (RCTs) and 21 before–after studies). Studies were grouped according to no technology or the main additional technology used (no technology n = 5; interactive gaming n = 6; electrical stimulation n= 11; constraint-induced movement therapy n = 6; robotic and dynamic orthotic devices n = 8; mirror therapy n = 1; telerehabilitation n = 2; wearable devices n = 1). A beneficial effect on arm function was found for self-directed interventions using constraint-induced movement therapy (n = 105; standardized mean difference (SMD) 0.39, 95% confidence interval (CI) −0.00 to 0.78) and electrical stimulation (n = 94; SMD 0.50, 95% CI 0.08–0.91). Constraint-induced movement therapy and therapy programmes without technology improved independence in activities of daily living. Sensitivity analysis demonstrated arm function benefit for patients >12 months poststroke (n = 145; SMD 0.52, 95% CI 0.21–0.82) but not at 0–3, 3–6 or 6–12 months.
Self-directed interventions can enhance arm recovery after stroke but the effect varies according to the approach used and timing. There were benefits identified from self-directed delivery of constraint-induced movement therapy, electrical stimulation and therapy programmes that increase practice without using additional technology.
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Mobile health app developers increasingly are interested in supporting the daily self-care of people with chronic conditions. The purpose of this study was to review mobile applications (apps) to promote epilepsy self-management. It investigates the following:
We conducted the review in Fall 2017 and assessed apps on the Apple App Store that related to the terms “epilepsy” and “seizure”. Inclusion criteria included apps (adult and pediatric) that, as follows, were:
Exclusion criteria included apps that were designed for dissemination of publications, focused on healthcare providers, or were available in other languages. The search resulted in 149 apps, of which 20 met the selection criteria. A team reviewed each app in terms of three sets of criteria:
Most apps were for adults and free. Common SM domains for the apps were treatment, seizure tracking, response, and safety. A number of epilepsy apps existed, but many offered similar functionalities and incorporated few SM domains. The findings underline the need for mobile apps to cover broader domains of SM and behavioral change techniques and to be evaluated for outcomes.
12:04 December 3, 2016
“PAUSE” — for Personalized Internet Assisted Underserved Self-management for Epilepsy — is a tablet-based tool customized for each patient to help them stay healthy and reduce the need for emergency services.
Epilepsy is a chronic neurological disorder characterized by abnormal brain activity and seizures that affects more than 65 million people worldwide. About one-third have difficulty controlling their seizures even with medication. Seizures can interfere with work, relationships, and the ability to live independently.
While children and older adults are most likely to have epilepsy, it impacts people of all ages, races, backgrounds and lifestyles. Every patient is different and has their own individual needs.
“The PAUSE program is based on the coordinated care model,” says Dr. Dilip Pandey, associate professor of neurology and rehabilitation in the UIC College of Medicine and a lead investigator on the PAUSE project. “The health care provider identifies information the patient can use to build self-management skills, and also asks each patient what they want to learn about their epilepsy, whether it’s medication management, avoiding seizure triggers, issues around driving – whatever they want to know about.
“Then, we program the PAUSE tablet to include the corresponding educational modules, containing information provided by the Epilepsy Foundation website,” Pandey said. “This allows us to create a personalized self-management education program for each patient.”
Patients take the PAUSE tablet home with them for 10 to 12 weeks and review the information at their own pace. The tablets also allow the patient to video-conference with the research staff to receive individualized assistance.
Approximately 90 patients have been referred to participate in the PAUSE program so far. Pandey plans to enroll about 100 patients from the UIC neurology clinic and another 100 patients referred through the Epilepsy Foundation of Greater Chicago.
PAUSE is one of five UIC projects supported by the Illinois Prevention Research Center, part of the UIC Institute for Health Research and Policy. The IPRC is funded by a grant from the U.S. Centers for Disease Control and Prevention to conduct innovative public health prevention research. The PAUSE study is also a part of the Managing Epilepsy Well Network, which is coordinated by the Prevention Research Center at Dartmouth College.
Dr. Jeffrey Loeb, the John S. Garvin Endowed Chair in Neurology at UIC, is a co-principal investigator on the PAUSE study.
University of Illinois
Continue —> Process evaluation of the Restore4stroke Self-Management intervention ‘Plan Ahead!’: a stroke-specific self-management interventionClinical Rehabilitation – Nienke S Tielemans, Vera PM Schepers, Johanna MA Visser-Meily, Jolanda CM van Haastregt, Wendy JM van Veen, Haike E van Stralen, Caroline M van Heugten, 2016
Although motor learning theory has led to evidence-based practices, few trials have revealed the superiority of one theory-based therapy over another after stroke. Nor have improvements in skills been as clinically robust as one might hope. We review some possible explanations, then potential technology-enabled solutions.
Over the Internet, the type, quantity, and quality of practice and exercise in the home and community can be monitored remotely and feedback provided to optimize training frequency, intensity, and progression at home. A theory-driven foundation of synergistic interventions for walking, reaching and grasping, strengthening, and fitness could be provided by a bundle of home-based Rehabilitation Internet-of-Things (RIoT) devices.
A RIoT might include wearable, activity-recognition sensors and instrumented rehabilitation devices with radio transmission to a smartphone or tablet to continuously measure repetitions, speed, accuracy, forces, and temporal spatial features of movement. Using telerehabilitation resources, a therapist would interpret the data and provide behavioral training for self-management via goal setting and instruction to increase compliance and long-term carryover.
On top of this user-friendly, safe, and conceptually sound foundation to support more opportunity for practice, experimental interventions could be tested or additions and replacements made, perhaps drawing from virtual reality and gaming programs or robots. RIoT devices continuously measure the actual amount of quality practice; improvements and plateaus over time in strength, fitness, and skills; and activity and participation in home and community settings. Investigators may gain more control over some of the confounders of their trials and patients will have access to inexpensive therapies.
Neurologic rehabilitation has been testing a motor learning theory for the past quarter century that may be wearing thin in terms of leading to more robust evidence-based practices. The theory has become a mantra for the field that goes like this. Repetitive practice of increasingly challenging task-related activities assisted by a therapist in an adequate dose will lead to gains in motor skills, mostly restricted to what was trained, via mechanisms of activity-dependent induction of molecular, cellular, synaptic, and structural plasticity within spared neural ensembles and networks.
This theory has led to a range of evidence-based therapies, as well as to caricatures of the mantra (eg, a therapist says to patient, “Do those plasticity reps!”). A mantra can become too automatic, no longer apt to be reexamined as a testable theory. A recent Cochrane review of upper extremity stroke rehabilitation found “adequately powered, high-quality randomized clinical trials (RCTs) that confirmed the benefit of constraint-induced therapy paradigms, mental practice, mirror therapy, virtual reality paradigms, and a high dose of repetitive task practice.”1 The review also found positive RCT evidence for other practice protocols. However, they concluded, no one strategy was clearly better than another to improve functional use of the arm and hand. The ICARE trial2 for the upper extremity after stroke found that both a state-of-the-art Accelerated Skill Acquisition Program (motor learning plus motivational and psychological support strategy) compared to motor learning-based occupational therapy for 30 hours over 10 weeks led to a 70% increase in speed on the Wolf Motor Function Test, but so did usual care that averaged only 11 hours of formal but uncharacterized therapy. In this well-designed RCT, the investigators found no apparent effect of either the dose or content of therapy. Did dose and content really differ enough to reveal more than equivalence, or is the motor-learning mantra in need of repair?
Walking trials after stroke and spinal cord injury,3–8 such as robot-assisted stepping and body weight-supported treadmill training (BWSTT), were conceived as adhering to the task-oriented practice mantra. But they too have not improved outcomes more than conventional over-ground physical therapy. Indeed, the absolute gains in primary outcomes for moderate to severely impaired hemiplegic participants after BWSTT and other therapies have been in the range of only 0.12 to 0.22 m/s for fastest walking speed and 50 to 75 m for 6-minute walking distance after 12 to 36 training sessions over 4 to 12 weeks.3,9 These 15% to 25% increases are just as disappointing when comparing gains in those who start out at a speed of <0.4 m/s compared to >0.4 to 0.8 m/s.3
Has mantra-oriented training reached an unanticipated plateau due to inherent limitations? Clearly, if not enough residual sensorimotor neural substrate is available for training-induced adaptation or for behavioral compensation, more training may only fail. Perhaps, however, investigators need to reconsider the theoretical basis for the mantra, that is, whether they have been offering all of the necessary components of task-related practice, such as enough progressively difficult practice goals, the best context and environment for training, the behavioral training that motivates compliance and carryover of practice beyond the sessions of formal training, and blending in other physical activities such as strengthening and fitness exercise that also augment practice-related neural plasticity? These questions point to new directions for research….
Components of a Rehabilitation-Internet-of-Things: wireless chargers for sensors (1), ankle accelerometers with gyroscopes (2) and Android phone (3) to monitor walking and cycling, and a force sensor (4) in line with a stretch band (5) to monitor resistance exercises.
The aim of the study was to explore the types of self-management strategies prescribed; the number of strategies and the overall length of time allocated to self-management prescription, by consultation type and by injury location, in physiotherapy consultations.
A cross-sectional, observational study of 113 physiotherapist–patient consultations was undertaken. Regression analyses were used to determine whether consultation type and injury location were associated with the number of strategies prescribed and the length/fraction of time spent on self-management.
A total of 108 patients (96%) were prescribed at least one self-management strategy – commonly exercise and advice. The mean length of time spent on self-management was 5.80 min. Common injury locations were the neck (n = 40) and lower back (n = 39). No statistically significant associations were observed between consultation type or injury location for either outcome (number of strategies and the length/fraction of time allocated to self-management prescription).
Physiotherapists regularly spend time prescribing self-management strategies such as exercise, advice, and the use of heat or ice to patients receiving treatment linked to a range of injury locations. This suggests that self-management is considered to be an important adjunct to in-clinic physiotherapy. The practice implications of this are that clinicians should reflect on how self-management strategies can be used to maximize patient outcomes, and whether the allocation of consultation time to self-management is likely to optimize patient adherence to each strategy.
Source: An observational study of Australian private practice physiotherapy consultations to explore the prescription of self-management strategies – Peek – 2017 – Musculoskeletal Care – Wiley Online Library