Basic special needs and related approaches – mainly medical – for patients following moderate / severe traumatic brain injury

Traumatic brain injury (TBI) may aff ect almost every aspect of a person’s life. The relationships with family and friends, their roles and responsibilities, all, will require an adjustment period, preferably to be achieved one step at a time, with training and guidance of a specialized health care team. Consequently, such neurologically severe impaired patients have almost always including long term needs, which are quasi-permanent or permanent so endured for a life time. The only way these special needs can be fulfi lled or – at best made unnecessary – is the discovery of the way to cure the central nervous system lesions. Because medicine is unfortunately not there yet, this article will review the respective specifi c numerous long-term needs that may be met by the tools medicine has to off er today, aiming to improve health care in hospital units with rehabilitation profi le and to provide ongoing guideline constructs for patients with TBI and their families, aft er discharge too, aiming at an as complete as possible family social and professional reintegration. Post TBI evolution is infl uenced by a variety of factors making patients with brain injuries care a complicated and sustained process, the improvements being undoubtedly infl uenced by their multimodal way to be approached within interdisciplinary teams, applying individualized rehabilitation programs – all in purpose to reach a quasi-normal life or as close to its sense.


BACKGROUND
In the last decades there have been a number of achievements in some health assistance subfi elds, including emergency medicine, by improving the integrated management system of specialized related services intervening in trauma/polytrauma -including neurotrauma -which led paradoxically, to a conti nuous increase in the number of people -survivors aft er various life threatening conditi ons -but with, including severe remaining, disabiliti es.
Disability is not only a health issue, at the same ti me accounti ng for a complex expression that refl ects interacti on between functi ons of a person body and aspects of society. To over-come the hurdles experienced by disabled people impose interventi ons to remove also any social and environmental obstacles. (1) A point which is worth menti oning is that pati ents, of all ages, following moderate or severe TBI, with diff erent consequent disabiliti es are also "hyper-chronic" in their long term evoluti on. (2) It is well known, that people with chronic pathology -especially with life threatening or impairment(s)/disability(es) ingenerati on potenti al -have to deal with more problems than healthy individuals. Every trivial thing that can be done easily by a normal person can become a challenge for chronically impaired pati ents. These types of individuals are called "persons with special needs" (medically and/or non-medically). This term includes a wide spread variety of "needs" regarding specifi c conditi ons that may vary from severe physical to mental, cogniti ve, emoti onal impairments, their disabiliti es ranging from speech disorder to quadriplegia.
(3) Thus, from a health assistance point of view, these "long term needs" can become permanent and conti nuous up to 24 hours daily nursing assistance. (4) Post TBI pati ents are individuals with acquired nervous system lesions -evolving or non-evolving -which have lead to more or less extended impairments. These lesions can affect: voluntary motricity (also muscle tone and/ or ti ssue trophicity), coordinati on, balance, sphincters` control, sensiti ve, sensorial -especially for some brain ailments, swallowing, cogniti ve/consciousness, communicati on ability and respecti vely emoti onal/behavioral aspects but also there can occur endocrine dysfuncti ons and various forms of pain (hyperalgesia, hyperesthesia, hyperpathia or paresthesia, borrowing characters of neuropathic pain; someti mes pain is non neuropathic, it is due to the lower urinary tract infecti on or it may be induced by spasti city, immobilizati on, lying, vicious postures).
More specifi cally from the medical point of view, pati ents with special needs imply the presence of: cogniti ve and physical disabiliti es, of "mental illness", communicati on disorders and/ or hearing, vision usually associated with pour literacy level, "poverty and aging". (4) At the same ti me, besides the long-term needs exposed may be added: development assistance/habilitati on and possibly custom school educati on -for some cases in children and teenagers -, aspects of rehabilitati on also in the professional domain (ergo-/occupati onal therapy) in adults -entailing specifi c infrastructure including with access to appropriate assisti ve devices, if applicable -, economic (mainly regarding fi scal dedicated regulati ons) support for disabled people who can work and last but not least, solidarity and love from family and obviously, empathy for all caregivers involved in this long and "windy" road.
Considering the big diff erences in the necessary endeavors, an acceptable defi niti on of the special needs regarding health care, should consider in an aimed individual, the presence of "functi onal limitati ons, linked services health needs and a present state with a minimum current state of standby (for example, 12 months)" (3) -but without the existence of a "gold standard" in the fi eld.
It should be emphasized, an age-related debate: the diff erenti ati on -recently noted by the World Health Organizati on (WHO) -between habilitati on (supporti ng those who obtain impairments congenitally or early in life in order to enhance their skills and functi oning so they can develop through training or treatment independence in acti viti es of daily living) and rehabilitati on (supporti ng those who are facing temporary or permanent loss in functi oning, later in life). (5) Under these conditi ons, the post TBI pati ents represent a morbidity domain prone to be systemati zed including through the (new) vision of the WHO -the "Internati onal Classifi cati on of Functi oning, Disability and Health" (ICF-DH)published in 2001, (6) because to the severe neurological challenged people can occur the biggest, harshest and most complex suff ering and disabiliti es.
A very important feature of the ICF-DH is that it allows to be addressed to all matt ers relati ng to human health and well-being described as part of health areas such as sight, hearing, walking, learning and memory and related fi elds health as transport, educati on and social interacti ons, within a balanced fi t between the medical and respecti vely, social, models embedded -on which is based this holisti c paradigm. (6) Strong evidence on the importance of the approached subject is that in 2014 it has been developed by the WHO a comprehensive plan sustaining persons with disabiliti es in the period 2014-2021, with improved health measures for all necesitati ng people: an approach that seems a signifi cant impulse for the WHO affi liated state governments, within the United Nati ons, to improve strongly the supporti ng policies in or-der to increase the quality of life (QoL) for impaired people (esti mated at 1 billion all over the world), making thus fi ghti ng against disabiliti es a high priority. (7) Actually within the respecti ve acti on plan, there are not completly new/unknoun by now items, but just a consistant sistemati zati on within a structured strategy; and this can be determined if recording the main human needs of V. Henderson. By this briliant nurse and academic, essenti al for proper care, are the human needs related to basic functi ons like: breathing, feeding and hydrati on ability, excreti on, mobilizing and maintaining postures, sleeping, dressing, maintaining the temperature within normal limits, washing and grooming, preventi ng dangers, communicati on, faith, fulfi llment, recreation, learning, use of faciliti es. (8)

APPROACHES AIMING TO IMPROVE POST TBI MEDICAL OUTCOMES
As known lesions to the brain are among the most likely to cause death or permanent disability. Though some individuals with moderate/ severe brain injury encounter light long-term diffi culti es, others may demand care or special services for the rest of their lives. (9) In an eff ort to improve clinical results aft er TBI, some scienti fi c insti tuti ons have initi ated an internati onal multi disciplinary research (in parti cular the: Canadian Insti tutes of Health Research, Nati onal Insti tutes of Health and European Commission) have recently collaborated to fi nance and promote research in TBI, given that, such pati ents conti nue to experience including persistent cogniti ve and emoti onal disorders more than 5 years aft er trauma, sequel that tend to evolve in relati on to the severity of TBI. (10) In Romania there are 9 major regional centers specializing in the treatment of neurorehabilitati on of pati ents with severe postt raumati c neuraxial injuries, post acute and chronic stages, of which 4 in universiti es centers -Bucharest, Cluj, Iasi, Timisoara -and 2 in resorts of prime importance: Felix/ 1 Mai, Techirghiol (11). The oldest (celebrati ng forty years in 2015) and most known of them, including internati onally, is the Physical (neural-muscular) and Rehabilitati on Medicine Clinic Division of the Teaching Emergency Hospital "Bagdasar Arseni", in Bucharest.
A health care team composed of physicians (physiatrist, neurologist), psychologist/neuro-psychologist, sociologist, social worker, (kinesy) therapist, physiotherapist, occupati onal therapist (ergo-therapist), speech language pathologist or (logopedist), general nurses, is dedicated to help an individual aft er TBI. Family, friends and the involved person are key members of the health care team to work for a common benefi t: eventually returning to an as close as possible QoL as previous to the injury. In most cases the eff ects of TBI lead to changes in roles and responsibiliti es within the family. Kin and close acquaintances are in a positi on to fi ght themselves with behavior changes in such individuals. One frequent modifi cati on is that someone in the family becomes a caregiver. (9) From a medical therapeuti c point of view, important targets are severe and moderate TBI's where there can be identi fi ed real, specifi c post TBI consequences (impairments/disabiliti es) to approach achievable rehabilitati ve goals.
As including recently systemati zed in the literature, the main rehabilitati ve care and nursing approaches recommended and applied in subacute/subchronic pati ents with severe and even moderate cerebral injuries in order to prevent complicati ons, but not exclusively, are (11): − regular inspecti on of the skin for preventi on of bedsores; sores are generally preventable when care is carefully applied, but once appeared, it could lead to pain, infecti ons, increased disability and hospitalizati on period; − turning (rhythmic change of positi on) in bed (from 2 to 2 hours if the pati ent does not have an anti decubitus matt ress respecti vely 4-6 hours if the pati ent has one; − anti cipatory or correcti ve posture to restore the anatomical positi on/functi on, including using orthoti cs; − anti declive limb posture (with role of veno-lymphati c stasis deep thrombophlebiti s and respecti vely, pulmonary thromboembolism preventi on); − passive mobilizati ons of the paralyzed limb (to improve ti ssue trophicity and to prevent and/or combat sti ff ness, also benefi cial in terms of kinestheti c memory/representati on of the segmental image in the body scheme from the central level; − procedures of bronchial drainage -possibly if necessary, oxygenotheraphyand/or thoracic tapping); aspirati on of the tracheal secreti on, all to maintain a healthy respiratory functi on; − assisti ng/att empt to restore the automati c functi ons of bladder and bowel; − a rehabilitati ve care approach useful for combati ng sleep disorders can be to keep awake during the day, the post TBI pati ent through various acti viti es to empower his att enti on and interest, to be able to sleep easier at night, at bedti me, thus eliminati ng the known tendency to sleep-wake rhythm disturbance. As the pati ent favorably progresses, the cares/rehabilitati on nursing role diminishes and the properly rehabilitati ve programs are growing and hence their importance.
To approach effi ciently this complex and diffi cult pathology, it is necessary to have a "conti nuum" of the overlapped medical, surgical and respecti vely rehabilitati ve services, starti ng from the (poly) trauma place, the transport to the emergency room, then to the neurosurgery department and possibly other surgical or intensive care units and to the neurorehabilitati on unit within the emergency hospital, in the subacute stage, as early as possible. If evoluti on is favorable, pati ents can be taken in an "ordinary" postacute/sub-chronic rehabilitati on unit -or if the pathology is persistent (marked disability) are granted long-term care/(possibly insti tuti onalizati on). Home returning is marked by the att empt to reintegrate the pati ent into family and community as complete as possible, maintaining medical and social att enti on on the case through the territorial hospitalizati on and conti nuati ons of evaluati ve, prophylacti c, therapeuti c, rehabilitati ve approaches by ambulatory, possibly through balneary cures in appropriate resorts, annually or twice/year and if necessary, by providing socio-economic faciliti es, legally provided, for people with disabiliti es. (11)(12)(13) The enti re rehabilitati ve assistance for these pati ents should be conducted even before the admission to a hospital unit and should conti nue as long as it is necessary. (13)

CONCLUSIONS
The tracked points in the rehabilitati on of pati ents with moderate/severe TBI are to reduce the rate of functi onal sequel and cogniti ve disorders, also of complicati ons, to achieve -if the case -new skills with functi onal objecti ves based on remaining structures or functi ons after injury and when needed to provide with appropriate assisti ve devices and knowledge in order to opti mally used them, to achieve independence in self-care and to obtain a bett er QoL, comprising good family relati onships and social reintegrati on, including through professional based advocacy to which this paper might hopefully give a modest contributi on.