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.
❖ 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
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.