Paediatric Neurorehabilitation - Concept, Organization & Current Trend
Keyword : Children; Habilitation; Neurorehabilitation; Rehabilitation
Paediatric Neurorehabilitation as a discipline is a relatively new field.1-2 Paediatric Rehabilitation is an area of medicine dealing with the habilitation and rehabilitation of children and adolescents with congenital or acquired physical disabilities. Habilitation is defined as the facilitation of the reservation of developmental, physical, cognitive and social functions. The methods employed in rehabilitating children with acquired loss of all these skills are different from those used in children who had never acquired the abilities of feeding, talking, standing, walking or social abilities like bladder and bowel control (i.e. Habilitation).
The discipline of rehabilitation is based on the international classification of impairment, disability and handicap as proposed by WHO in 1980.3 Impairment implies abnormality of anatomical structure or physiological process. Disability means lack or impairment of a particular capability or skill. Handicap means any condition which prevents the pursuit or achievement of desired goals. The field of rehabilitation had grown over the past three decades with more scientific research in the outcome of various intervention programmes.
To many people, habilitation/rehabilitation, particularly Neurorehabilitation in children, is new. However, both medical and allied health professionals have been doing this work for many years in managing patients with various neurological problems such as cerebral palsy, spinal bifida, hydrocephalus, epilepsy, spinal cord and brain injury, etc. To a Child Neurologist, during the comprehensive management of children, we have to deal with parents, educators, psychologists, social workers, physiotherapists, occupational therapists, speech therapists, subspecialty pediatricians, rehabilitation specialists, etc. to work as a multidisciplinary team. All too often, the role of the child neurologist may be seen as a team leader in helping the team to understand the scientific basis of the neurological disability and help the child to overcome the disability and integrate into the community.
Child neurologists are usually talking in traditional neurodiagnostic terms such as "cerebral palsy" or "static encephalopathy". The Neurorehabilitationists are specially focused on the "impairment - disability - handicap paradigm". The Neurorehabilitationist's focus is on a functional outcome with comprehensive management after the diagnosis has been worked out. As a child neurologist's basic training involves paediatrics, developmental paediatrics and psychiatry, s/he is in a special position to gel the neurorehabilitation team in focusing in the organic, behavioral, social and educational aspects of the problem.
Prevalence of Disabling Diseases in Children
The majority of chronic disabilities in children involve neurological or developmental disorders. Thus, Neurorehabilitation constitute the majority of the habilitation/rehabilitation work of the team.
What is Rehabilitation?
Rehabilitation is like reclothing, i.e. this is an active process to reduce the effect of disease.
Where, When and How?
The most important questions to ask oneself are "Is the rehabilitation resource (e.g. a hospital or unit) designed for the client's needs?", "What is the potential for Rehabilitation?", "How much can the natural history be changed?" and "What will happen without rehabilitation?"
The overall coordinator of the programme should have a basic knowledge of paediatrics, preferably with scientific knowledge of the underlying brain disorders, including brain recovery. Thus, a child neurologist should be actively involved in the whole process of assessment, decision making and planning ongoing management programme in neurorehabilitation.
The Rehabilitation Process
The rehabilitation process include: i) identifying the client, ii) identifying problems, iii) describing the problems in terms of impairment, disability, handicap and dependency, and iv) describing the problem, i.e. the functional domains. The rehabilitation process should include rehabilitation planning with aims, goals, and contracts. This includes short-term goals and goal-directed therapy. During the rehabilitation process, regular progress of the clients should be monitored with follow-up and standardized outcome measurement to document the result of the rehabilitation process.
The Rehabilitation Team (Multidisciplinary, Interdisciplinary and Transdisciplinary)
A team is a group of people, each of whom possesses a particular expertise; each of whom is responsible for making individual decisions; who together hold a common purpose; who meet together to communicate, collaborate, and consolidate knowledge; from which plans are made, actions are determined, and future decisions are influenced. The rehabilitation process is successful only if there is a solid rehab team working towards short-term and long-term goals for the clients.
Why Have Rehabilitation Team?
This is important is to improve the communication between individuals involved in management. Knowledge between individuals of different disciplines can be shared to improve the efficiency of treatment of patient, and, thus a more consistent goal-oriented approach and better continuity of care for patients can be achieved. Moreover, having teams could promote a broader perspective of health care. It also can provide a stimulative environment, thus, enhancing the contribution of team members, improving motivation, and increasing individual effectiveness. It ultimately creates a mutually supporting atmosphere for the team members. The rehab team should be multidisciplinary, interdisciplinary and transdisciplinary in nature. Each "member" is important in the rehab team. The team member should work together in equal status. An efficient team should function well with contribution from all team members directed and supported by a competent leader.
This involves medical team and allied health team.
The medical rehab team should consist of the rehabilitative paediatrician, preferably a child neurologist, developmental pediatrician(paediatric gastroenterologist), nephrologist, respirologist, geneticist, orthopaedic surgeon, neurosurgeon, surgeon, ENT surgeon, ophthalmologist and dental surgeon.
The allied health rehab team should consist of clinical psychologist, educational psychologist, speech therapist! language pathologist, audiologist, optometrist, orthopedist, physiotherapist, occupational therapist, medical social worker, dietitian, nursing team, electrophysiology technician and special school teacher.
The Multidisciplinary Team
The Multidisciplinary Team consists of professionals from different disciplines meeting regularly. There is allocation, by each member, of a significant proportion of his/her time, to the pursuit of a team's objective. There is also agreement on explicit objectives for the team which determine the team's structure and function. There should be an adequate administrative and clinical coordination to support the work of the team, although not necessarily by the same person on all occasions. Thus, a case clinician or a case manager is essential for the function of the team. There should preferably be a defined geographical basis for the efficiency of care of the rehab team. There should be a clear differentiation of, and respect for, those skills and roles which are specific and unique to individual members, as well as recognition of those roles which may be shared. These are essential criteria for a multidisciplinary team to function in a continuous and positive fashion.
The rehab team has to determine whether the dynamics of the team should be team-orientated or disciplinary orientated. It should preferably be team-oriented. The role and status factors affect the creation of team and they should be identified. The efficiency of the team also depends on the personality and motivation of the various team members. There should be a strong team leadership who is responsible for coordinating and orchestrating the team. The infrastructure of the rehab team should emphasize importance of Team Leadership and Team Membership (TLTM).
Rehab Team Leader
The group leader should have the social skills and the ability to influence others. S/he should have the ability to fulfill task requirements and organizational goals. The skills of an effective leader is to be able to diagnose situations, to have the ability to exercise judgment about what needs to be done and how to do it; and, s/he should have an adaptive personality. S/he should be flexible enough to behave in ways demanded by the situation in order to maintain appropriate social skills and exercise influence in the team.
There are 5 leadership styles. The leader can make an executive decision autonomously, based on an appraisal of the situation. The leader can ask the team members for information and their perceptions of the situation before making a decision. The team leader shares the problem with the team members individually, obtains their opinion, and then makes a decision which may or may not reflect the ideas of team members. The leader shares the problem collectively with all team members, obtains their views but again makes a decision that may or may not reflect their views. The leader can also share the problem with the group, encourages them to discuss it, and collectively reach alternate solutions. Once a consensus is reached, the decision is implemented. Thus the leadership style is very important for the direction and goal of the rehab team. S/he is just like a captain in a ship!
Measurement in Neurorehabilitation
So far there have been lack of good outcome measures to document the outcome of rehabilitation. In motor control, the Ashworth Spasticity Scale is validated as a good measure clinically for assessing the outcome of spasticity. Chalfront Seizure Severity Scale can be used to assess the efficiency of epilepsy management. As for general disability measure, WeeFIM, is a measure of functional independence in children.
WeeFIM (Functional Independence Scale for Children)
This is a first documented outcome measure for rehabilitation in children launched in 1994 by UDSMR of the University of Buffalo.4-7 It contained 6 domains with standardized scores of a scale of 1-7 with "7" meaning complete independence and "1" meaning "complete dependence". This WeeFIM measure is discipline-free and it is very useful in documenting ambulatory and inpatient rehabilitation programmes for children.
The American Scene
Recognition to develop standardized training in rehabilitation had its roots in America in 1947 with the American Board of Physical Medicine and Rehabilitation. Neurology had a long history in America. The American Board of Psychiatry and Neurology (ABPN) began to certify neurologists in 1934 and child neurologists in 1968. Due to the need of neurologists in the management of neurological diseases, there was the development of this specialty in Neurorehabilitation in the section of Neurorehabilitation of the American Academy of Neurology (AAN) in 1986. The American Society of Neurorehabilitation was established in late 1990 which provided standards and credentials for special qualification in Neurorehabilitation. In America, the double certification of a child neurologist by the ABPN in 1984 as neurologist with special qualification in child neurology and also by the ABP (American Board of Paediatrics) made them particularly suited to manage rehabilitation in young children.
The importance of Neurorehabilitation in child neurology was recognized by the Accreditation Council for Graduate Medical Education (ACGME). The training programmes in child neurology included electrodiagnostic neurology, neuropathology, neuroradiology, neuro-ophthalmology, psychiatry, and basic neuroscience, in addition to clinical adult and child neurology. Thus, child neurology training with roots in both adult and child neurology together with the basic rehabilitation concept should enable the all round personnel to develop a career in Neurorehabilitation as they had the basic training experience in this area.
In America, there were 2 accrediting organizations for physicians interested in Rehabilitation and Neurorehabilitation - Joint Communication on Accreditation of Health Care Organization (JCAHO) and the Commission on Accreditation of Rehabilitation Facilities (CARF).8,9 In the 1991 JCAHO Accreditation Manual, the section of the Neurorehabilitation service recommended the following characteristics, i.e. medical staff participating in the delivery of physical rehabilitation services is provided by a qualified physician member of the medical staff who is knowledgeable about rehabilitation medicine and diagnostic training experience. In the 1990 CARF standards manual, the section involving the specific programme standards for comprehensive intensive rehabilitation required that "in the rehabilitation setting, the rehabilitation physician should have the final authority and responsibility for the composition and duration of the person's rehabilitation programme; and the person responsible should be the physiatrist or an equally qualified physician with training and experience."
The Australian Scene
Paediatric Rehabilitation is a very young subspecialty within Australia. In Australia, the Rehabilitation Paediatrician is not involved in the electrodiagnostic workup of the neuromuscular transmission as compared to the North American rehabilitationists who are known as the physiatrists. Whereas in the other states, rehabilitation is operated in conjunction with Developmental Paediatrics, which is a discipline involving the assessment and management of children with primary diagnosis as intellectual disability. In Australia, there has been no formal training programme for rehabilitation paediatrician until 1996, since them have been 2 training posts for advanced paediatric trainees who have completed the post-graduate examinations in paediatrics to pursue the training programme which is run by the Australasian Faculty of Rehabilitation Medicine.
The Hong Kong Scene
Programmes for neurorehabilitation for children of Hong Kong
Child Assessment Centre (CAC) was piloted in Duchess of Kent Children's Hospital(DKCH) in 1987. This evolved into developmental training programmes for children with various neurodevelopmental disabilities in the Child Developmental Centre (CDC) in 1994.
We have programmes for rehabilitation of children with various neurodevelopmental disabilities. Motor Rehab includes intramuscular Botulinum Toxin Injection, Selective Dorsal Rhizotomy (SDR) and continuous intrathecal Baclofen infusion for spasticity. Cognitive Rehab includes memory, behavioral & psychiatric rehabilitation for children with traumatic brain injury, intractable epilepsy and behavioral disorders. Communicative Rehab includes augmentative communication for children with pervasive developmental disorders, language disorders, or autistic disorder. Cochlear implant team had started the first implantation of cochlear implant for children in Hong Kong with bilateral sensorineural deafness. Oromotor Rehab included assessment of drooling and 24-hour pH monitoring and video-fluoroscopy, oromotor training programme and gastrostomy feeding for children with oromotor dysfunction. Pulmonary Rehab included sleep studies, oximetry study and nocturnal mechanical ventilation for Duchenne Muscular Dystrophy using nasal CPAP had been started in 1997.
Neurogenic Bladder & Bowel Continence Rehab had been undertaken by the Rehab team for urodynamic assessment, drug treatment for neurogenic bladder, prevention of urinary tract infection by antibiotics, clean intermittent catheterization, dietary manipulation and surgical manoevre for constipation. Counseling on sexual function for teenagers had also been provided. Pain relief would be provided by anaesthetists and in the future, acupuncturists may be enrolled into the Rehab programme to amelgamate traditional Chinese medicine in a scientific area of rehabilitation. Education and career for children had been attended by the clinical psychologists, educational psychologists, and medical social workers with the close networking of the community.
Respite Care had been pioneered in our centre in 1993 to provide family support for parents with a short-term break for the chronic care for the children with disabilities. We had established a community partnership with the Social Welfare Department for the interreferral of children for respite care services.
A Spine Centre was established in Duchess of Kent Children's Hospital under the University Department of Orthopaedic Surgery in 1995 to coordinate team management for children with neuromuscular cause of sclerosis.
There is a close liaison with the acute neurological service in the Paediatric Department of Queen Mary Hospital (Paediatric ICU and Neonatal ICU setting), Tsan Yuk Hospital (neonatal intensive care unit) and the Grantham Hospital (cardiac intensive care unit) to start the rehabilitation training, intervention and counseling with the hospital staff and family members. The acute rehabilitation service catered by the Rehab programme provided in Queen Mary Hospital Paediatric Ward is a preparative service to the subacute Rehab programme in Duchess of Kent Children's Hospital. The short-term subacute rehabilitation programme with 1 to 3 months basis in Duchess of Kent Children's Hospital is another preparatory pathway for transition into the community.
The Duchess of Kent Children Hospital had been the first international subscriber to use of WeeFIM outcome measure in 1996. In February 1997, around 20 child neurorehab team members had been trained to be active users of the WeeFIM programme. Currently, the neurorehab team in Duchess of Kent Children's Hospital had started off the WeeFIM pilot assessing projects of various intervention programmes for children with various neurodevelopmental disabilities including: very low birth weight babies, cerebral palsy, spina bifida, global developmental delay, autistic disorders, pervasive developmental disorder, Down syndrome, brain or spinal cord injury. Ongoing projects to validate the WeeFIM for Chinese children will be undertaken.
Other objective evidence of rehabilitation includes the gait laboratory analysis which is available in Duchess of Kent Children's Hospital since 1993 for documenting outcome of orthopaedic management.
Specific Neurological Disease Seen in DKCH
In talking as a Neurorehabilitationist's jargon of Function Related Groups (FRG), we categorize our patients into motor disorders, communication disorders, visual perceptual problems, visual spatual problems, memory problems, drooling/feeding problems, sleep problems, etc.
The following are neurologically based disabilities seen in DKCH over the past 10 years from a child neurologist's perspective: -
- Cerebral Palsy
We have altogether 10,000 active cases in our Duchess of Kent Children's Hospital Rehab registry.
The Neurorehab team hopes to coordinate this project with other Hospital Authority staff, universities, and also with the community partners.
The child neurologist with their understanding of basic neuroscience and the clinical application to the neurodiagnostic and therapeutic intervention should make them good team leaders in the role of Neurorehabilitation, i.e. prevention and treatment of brain dysfunction from developmental, neurological and behavioral perspectives.
A Children's Habilitation Institute (CHI) was proposed to the Hospital Authority in 1997 to be established in Duchess of Kent Children's Hospital to liaise with various rehabilitation services in Hong Kong, China and other areas of Asia as a research-orientated Paediatrics Neurorehabilitation programme. We have finally got the blessing from the Hospital Authority in 1998 to carry our pilot projects to bring the full swing of "NeuroRehab in Children" towards the next millennium.
The author would like to thank the following who have supported the programmes:
This paper had been presented in the Symposium in Paediatric Neurorehabilitation in the 110 Anniversary Celebration Scientific Congress of Faculty of Medicine, The University of Hong Kong (October 24-26, 1997).
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