One aspect we lag behind in management is the timely rehabilitation in patients with TBI. Can anyone advise on the rational approach for the same in the resource restrained setup ?????
I would suggest to search for these folks email and reach out to them to help establish what elements are feasible to incorporate into your program and also consider Mt Sinai in NYC and Rusk Institute at NYU in NYC to reach out for specific cost effective , high value and pragmatic suggestions.
Brain Injury Program
Traumatic brain injury is the primary cause of disability and death among young people in the United States. Although most head injuries are mild and do not involve loss of consciousness, they can cause serious problems if not treated properly. Our Neuro-Rehabilitation Program has developed inpatient and outpatient programs specifically for brain injury patients. The Intensive Outpatient Brain Injury Program is accredited by the Florida Department of Health Brain and Spinal Cord Injury Program.
Clinical Director Richard A. Hamilton, Ph.D., and his team of clinicians provide a coordinated physical, cognitive and behavioral approach to working with patients. Each patient is assigned to a dedicated care coordinator to guide their follow-up care and to connect them with the necessary resources.
To learn more about the Brain Injury Program, please call our Program Coordinator, Caroline Godinez, at 786-596-6520.
Concussion Program
Our Outpatient Concussion Program provides follow-up evaluation and treatment during the acute phase after a concussion or severe brain injury. Program staff follow best practices based on current research to improve patient outcomes.For more information about the Concussion Program, please call our Program Coordinator, Caroline Godinez, at 786-596-6520.
I think this is a really interesting question. It would be wonderful to find an opportunity think about what adaptations are needed to existing well described programmes to make the rehab offer socially and culturally relevant for your particular setting! Your term, 'resource restrained' I am sure has a very particular meaning in Nepal that could help other parts of the world review how they are using their resources. My contention would be that articulating theory of/vision for rehab will be a good place to start. Then to tackle what can be achieved with available resource.
A patient of mine who had TBI years ago from an MVA , with coma , subsequent motor and cognitive deficits and disfigurement, had spent a very long time in various excellent inpatient and outpatient neuro-rehabilitation programs.
He shared with me a book, written by a U of Penn English Professor's husband. A true story about his experience and hers going thru recovery with top inpatient and outpatient facilities. The Book Title is Where is the Mango Princess. don't be dissuaded by the title.
Where Is the Mango Princess?: A Journey Back From Brain Injury Kindle Edition
by Cathy Crimmins (Author)
4.8 out of 5 stars 103 customer reviews
"5.0 out of 5 stars What an Amazing Book !!, October 15, 2000
By
BeachReader
This review is from: Where Is the Mango Princess? (Hardcover)
Cathy Crimmins has taught us all a lesson in this book.....that life isn't always as we had thought it would be and that we must be proactive in order to change it.
When her husband, Alan, a successful bank attorney in Philadelphia, suffers a Traumatic Brain Injury (TBI) in an accident, his life and his family's lives change forever. Crimmins takes us through the extensive rehab process which she handles with both tears and laughter. As a reader, I found myself experiencing feelings of anger, hope, sadness, and joy at the smallest improvement in her husband's condition and at the smallest victory over the system.
I could not believe how much I learned from this book. It should be "must reading" for everyone who works with brain-injured patients and also for all of those insurance company "voices on the phone" who make life and death decisions based on very little information, and with very little empathy. I learned about something called "perseveration" which is when a brain-injured person repeats an action or phrase over and over and over again. I also learned that with brain injuries such as this, inhibitions disappear, which means that socially inappropriate behaviors are often displayed. Crimmins also made the reader understand why these patients and their families become so frustrated. I could fill pages with what I learned.......
I read this book in one day and a friend who was visiting me read it the next. I then passed it on to my daughter who also read it in one day and then recommended it to her neurobiology professor who thought it was outstanding. If I had the power to make this book a bestseller, I would!"
This book I now require residents in GME training to read and perhaps it should be read at Medical Schools and by faculty. Although written for the lay person, it provides insight and empathy for those who experience TBI and various recovery phases. Realistic STG and LTG enable coping strategies to kick in when despite remarkable or miraculous improvement the subtle cognitive and personality changes may never fully recover and (spoiler alert) preclude to previous employment setting (in this case a high powered Philadelphia law firm)
You will never look at someone with TBI (however minor appearing) the same again- this book can be trans- formative for patient's significant others and to physicians in creating true compassion.
There is no denying the fact that we have come up with leaps and bounds when it comes to medical and surgical management of TBI. But by focusing on the tip of the iceberg, we are not doing any good for our conquest to this silent epidemic.What counts is the quality among the survivors and for that we need to prioritize the holistic rehabilitation aspect as well......
This is an important issue for developing countries... there is a book coming out this year which attempts to tackle the issue of rehab in under-resourced settings: Addressing brain injury in under-resourced settings: A practical guide to community-centred approaches (Balchin, Coetzer, Salas & Webster)
I was inspired by Yehuda Ben Yishai, past-director of the TBI program, within the Rusk Institute.
Have a look to the powerpoint I presented last Wednesday in the IBIA World Congress at The Hague...to do with some pinciples of neurorehabilitation applicable to TBI-persons.
So your question is quite broad. The term "resource restrained" is difficult to interpret accurately. That said, if your question relates to specific diagnostic and treatment approaches, this text is in its 3rd edition and has been in print for 20 years. It offers such specific advise, please pardon the seeming self-promotion.
An an intriguing component of your question relates to whether TBI is a sngular disease entity. Like cancer, TBI constitues an array of disease entities that emanate from the etiology, nature and severity of injury confounded by factors such as age, aging, gender, race, socioeconomic status, intelligence, genomic factors and co-morbidities, at least. Our field must aggressively undertake disease specification as it seeks to understand interventional outcomes.
As for Ben Yishay's work, it should be understood that the treatment interventions described are most effective for individuals with minimal to moderate deficits following TBI. These individuals are largely ambulatory and have mid to high level cognitive deficits. Clearly an important subgroup of patients following TBI, however, those individuals with more severe deficits require far different interventional models.
So it may be helpful for you to provide us with more information relative to the term "resource restrained". Further, please advise as to whether you are seeking interventional advice for domain specific problems such as physical, cognitive, communicative, psychological, behavioral, social or medical sequela.
The resource restrained from the patients end is major problem in developing countries. Our Medical centre caters patients from rural and urban area. We find major problems in continuing the type of rehabilitation in home environment in rural set up, where their access to resources are limited. We could find alternative solutions based on the resources available for mild and sometimes moderate head injuries, with potential for ambulation. However we always had problems in dealing with patients who are bed ridden and cognitively impaired. Major limitations are due to availability of care giver in both rural and urban set ups. Economic background is the next major issue which we face as a limitation for rehabilitation.
There are many geographic locales (even within USA), where despite the presence of more than adequate resources, unfortunately, access is limited for a variety of socioeconomic reasons. In locales discussed above, there is not even the option of trying to allocate resources in timely manner or even, "fair" distribution. Both situations present tremendous challenges are truly require seeking an unsatisfactory "optimization" for either the population as a whole or the individual patient. Striking the "correct" balance places the providers in untenable positions and policy makers who may or may not have the ability to deploy needed resources (for different reasons) may have excellent intentions that pragmatically are challlenging to implement for those most in need.
I have had patients in remote rural Alaska, where there are very significant constraints regarding treatment. In AK, community and family support for re-integration was crucial to a good outcome. There is no curative rehabilitation treatment, despite what people selling colored lenses or prism glasses might say.
The big difference from more common brain injuries (such as stroke) is the prevalence of personality, mood, and judgment changes - which can be misinterpreted as mentioned above by Kaell.
In many cases there is comorbid substance abuse, which further clouds the issue, and sometimes this must be treated before any real progress can be made. Perhaps the best place to start building some sort of program would be with behavioral health providers?