C. Pistarini, A. Giustini, G. Maggioni
Acquired brain injuries (ABIs) are being progressively recognized as a relevant cause of morbidity and mortality in the population and, consequently as a major problem for healthcare systems worldwide. The proper management of ABIs require an integrated approach encompassing the emergency system, rehabilitation structures and high quality protocols as well as infrastructures for home care and social/work reintegration.
Recently the Italian Society of Physical Rehabilitation Medicine (SIMFER) has launched a series of Consensus Conferences (CC) aimed at providing recommendations for ABIs management through a systematic evaluation of all the above mentioned issues.
Two experts meeting have been organized so far:
Modena (2000): “Modality of rehabilitation treatment of the Acquired Brain Injury in acute phase, criteria of discharge into rehabilitation structures and indications about the proper ways” focused on the management of the acute phase (emergency and early treatment) of ABIs.
Verona (2005): “Rehabilitation and assistance needs of both people with ABI and their families during the post hospital phase” focused on social re-integration and support to ABI patients and the role of stakeholders.
Additionally, both events included a systematic analysis of differences between countries in terms of care network structuring and operative local guidelines. Herein we report a summary of the results of both CCs.
1st National Consensus Conference – Modena, 2000. Modality of rehabilitation treatment of the Acquired Brain Injury in acute phase, criteria of discharge into rehabilitation structures and indications about the proper ways.
As a general premise to the Consensus Conference, The CC Panel of decided to endorse the Acquired Brain Injury definition proposed by the National Society of Physical Medicine and Rehabilitation, which highlights the long term consequences and the social impairment as follows: “ABI is a non-degenerative non-congenital brain damage caused by an external force which might lead to a worsening or change of consciousness level, cognitive, emotional or physical impairments. Such impairments may be temporary or permanent and, may lead to partial/complete disabilities or difficulties in the social integration”.
The management of ABI Patients includes three distinct phases:
- The Acute Phase (intensive care unit - ICUs - Neurosurgery Unit)
- The Post-Acute Phase (in which the Rehabilitation intervention involves the “Acute Rehabilitation Phase” and the initial steps of the Post-Acute Phase).
- Late post-acute and Outcome Phase.
Based on the analysis of the available literature evidence and CC discussion, the Panel defined several recommendations that should be adopted to ensure the establishment of an effective network for ABI patient care. First, the Panel recognized the need for gathering detailed epidemiological knowledge on ABI in order to properly plan the health care strategies. Although rehabilitation per se does not impact on the medical therapy during the acute phase, it was recommended to begin the interventions as earlier as possible in order to prevent secondary morbidity, minimize disabilities and promote contact with the environment. According to the available scientific evidence, intensive multisensory stimulation (MS) was not recommended. Otherwise, the enforcement of the following interventions was considered essential:
- Periodic postural variations during the whole day plus passive multiple-joints mobilization;
- Structured awareness monitoring;
- Setting of a specific environment to stimulate basic communication skills;
- Respiratory rehabilitation techniques to enhance airway clearance;
- Weaning protocols from mechanical ventilation with a smoother transition to assisted ventilation and eventually to spontaneous breathing;
- Homogeneous team working rules, with particular attention for caregivers information and psychological and logistical needs.
The Panel recommended the adoption of standard criteria for ABI patients transfer from the ICUs/Neurosurgeon Units to the Rehabilitation Wards (RW). Homogeneous definition of "adequate clinical stabilization" and "proper neurosurgical stabilization" was relevant to this phase. Accordingly, it was also recommended that the presence of tracheotomy cannulation, nasogastric tube (NGT), Percutaneous Endoscopic Gastrostomy (PEG), central venous catheterization, or seizure management were not contraindications to transfer. Considering the standard management protocol for ABI patients, it was suggested to identify following categories upon awareness degree, clinical conditions, variety and degree of ABI sequelae and recovery prognosis.
The Panel also suggested consider the information and involvement of the caregivers as a main issue for a good clinical practice (GCP). A constant, controlled and standardized plan of communication with ABI patients’ relatives was also considered a relevant step for a successful rehabilitation process.
Although, comparative data on the differential efficacy of the various organizational models are not available, it was recommended to refer to a model defined as "integrated network based on different responsibility levels". This approach involves many different levels both for Acute Ward (AW) and Rehabilitation Ward (RW).
During the CC the role of stakeholders were also discussed. The Panel agreed on the relevance of active involvement of the local-regional National Health Care System (NHS) officers/managers in order to foster knowledge and awareness on ABI. An important step toward this objective would be that to consider the ABI patient management as a priority within the Finalized National Health Research Program. It was suggested for all the CC promoters to identify the best methodology to adopt and apply CC’s recommendations and to involve managers of local and regional NHS.
2nd National Consensus Conference – Verona, 2005. Rehabilitation and assistance needs of both people with ABI and their families at the post hospital phase
The document published after the second CC included the following chapters.
1.Definition, epidemiology and informative needs
The Panel considered a three-tiered approach to enhance the epidemiological knowledge and improve critical situations. The first step is that of the application of existing data at its best including the analysis of integrated hospitals and social database networks. The second level is data collection of all possible additional information; third, the creation of local, regional and national Registries.
2. Interventions, Structures, Rehabilitation and care-assistance paths for ABI during the post-hospitalization phase: scheduling the assistance for patients and families. Rehabilitation model: efficiency and efficacy
The Panel recommended the avoidance of splitting care and rehabilitation from the social support. Consequently, active healthcare provided by professionals should be included also in the long-term patients’ management phase. These interventions (healthcare and social assistance) must be fully integrated and the existence of a local framework linking with rehabilitation institutions is recommended; outcome (effectiveness) studies are strongly encouraged.
3. Planning criteria for the intervention’s realization
Active participation of families and patients was recommended for a comprehensive evaluation. The assessment of rehabilitation and social assistance needs, should be periodically reconsidered. Furthermore, the rehabilitation and social support interventions for both ABI patients and families must be personalized.
4. Planning and realization of the interventions
All interventions must be planned on shared knowledge by the proper operators with the patient (if possible) and his/her family; moreover, such interventions should be personalized. Patients and their families must be always kept informed about aims of therapy and assistance and must be educated on care of function, activity and participation impairment.
5. Regional and national organizational models and post-hospitalization phase services/structures classification
All the post-hospital services should follow common management protocols; thus, local Registries should be created to collect all the different needs and descriptions of all available services for patients and their families. Social workers, national associations and other stakeholders should actively participate. Funding Agencies should boost not only the hospital early rehabilitation phases but also long term out-of hospital care with the final aim of achieving full support of home return; individualized assistance programs should be planned.
6. Guidelines for professional qualification
Active coordination of all professionals involved in the various phases Is required to integrate the rehabilitation process phase with individual tutoring and a personalized work.
Workplace reintegration is to be planned since the early rehabilitation phase. This process involves tight link with institutes for the work reintegration and industries. This framework must be enhanced and developed.
7. Families and associations
Family associations should be involved from the early rehabilitation phase: comprehensive education for the families is a crucial point to achieve and adequate assistance level. Regional epidemiological data show the importance of improving the long-term assistance care particularly for patients with low outcome scores and with no possibility to home allocation. The same holds true for patients discharged at home with a severe motor/cognitive disability assisted in “Daily Centres’ institutes” to relieve families’ burden. A case management approach framework with a trainee coordinator is the best model to be considered. Social assistance policies should be improved in term of: social benefits, tax facilities, integrated home assistance protocol and social economical supports for low income families.
8. Legal aspects and welfare
All professionals involved must use a common terminology with a homogeneous interpretation. Legal disposition for medical prescriptions and legal regulation on resources for permanently impaired subjects must be updated; innovative models of assistance to ABI persons should be conceived such as private-public partnership and specific insurances.
The Individual Rehabilitation Program must include structured information during the whole post-hospital phase.
The Scientific community must operate upon the actual updated and shared knowledge on adopting evidence based medicine (EBM) approach. Definition of new standardised classification models based on the diagnosis related group’s codes, will eventually lead to a refined assessment of severity degree. It is also necessary to define the minimum Diagnosis Related Group’s code set to improve classification. Survey studies should be conducted to collect any information available on ABI during post-hospital phase. Outcome-effectiveness prospective studies should be carried out to test standardised models with appropriate follow up time.
This short description of the two last Italian CC represents the basis for the preparatory activity of the third one, which will be held in the early 2010. The focus of the third CC will be on the care pathways for people suffering from ABI.
- C. Pistarini, Severe Brain injury SIG Chair - WFNR;
- A. Giustini, WFNR Management Committee;
- G. Maggioni, S. Maugeri Foundation, Neurorehabilitation Unit - Pavia (Italy)