Adelphi Centre for the Rehabilitation of Post-Comatose Patients with Severe Brain Injuries
Project location: ITALY, Rome
Project start date: December 2010 - Project end date: April 2011
Project number: 2010-70
Beneficiary: Roboris Foundation ONLUS
Among other aims, the Association proposes to promote the rehabilitation of patients who have emerged from a coma and assist them to maximize their independence, encourage their personal growth as well as help them rebuild their lives socially and in the work place. The Association also assists and supports the families of these patients.
The Risveglio Association, together with the City of Rome Municipality and the ASL RMB (a local government health authority), designed and runs Casa IRIDE, a protected housing and medical treatment facility for patients in a vegetative state who for years have had no conscious awareness of self.
The Risveglio Association is a member of an advisory commission set up by the Ministry of Health to examine the social and health issues resulting from severe acquired brain injuries. As a member of the Commission, the Risveglio Association has contributed to drawing up a White Paper on the subject, sponsored by the Ministry of Health.
The "Leonarda Vaccari" Institute is a non-profit charitable body, approved by Royal Decree No. 2032 dated October 15 1936.
The Institute provides for the physical and psychological rehabilitation as well as the social and scholastic integration of children and young adults born with diverse disabilities. This is achieved thanks to a comprehensive programme developed by the Institute's team of highly qualified professionals
The Institute is specialized in interventions on a "ad personam" basis. These are based on individual programmes devised by a team of professionals in interdisciplinary fields whose task is to evaluate, develop, put into place and monitor these programmes.
ASL RM E - Department of Physical Medicine and Rehabilitation - operates in the public sector and undertakes the physical rehabilitation of patients suffering from diverse diseases which have resulted in mobility impairment.
Prof. Marcello Celestini, the President of the Roboris Foundation, is the Head of this Department. Dott.ssa Angela Marchese, an expert in her field, and also a member of the Department, has been named Medical Director of the ADELPHI Centre.
The ADELPHI Day Care Centre is dedicated at assisting patients suffering from acquired brain injury following severe brain trauma or cerebrovascular disease, which have resulted in a reversible coma.
These individuals, after a period of hospitalization during the acute phase of the coma and emergence from it, are characterized as having little or no autonomy caused by the persistence of psycho-physical disabilities of varying severity and duration
The Centre proposes to offer these patients a programme aimed at:
- stabilizing and monitoring their vital functions
- implementing skills acquired during hospitalization
- reducing long-term functional deficits, which could lead to social and workplace isolation
- achieving early patient recovery by exploiting the beneficial effects of family involvement (hence the decision to construct a non residential Day Care Centre)
- achieving re-adjustment and reintegration into the community, by enhancing the patient's remaining resources.
Statistical data highlight the social impact that derives from severe brain trauma and cerebrovascular disease which lead to an individual falling into a coma and his subsequent emergence from the coma with severe brain injuries.
In Italy, as in other industrialized nations, traumas are caused mostly by road and workplace accidents. Therefore the category of the population most affected is working-age adults.
Traumatic brain injury is the leading cause of death and disability in children and adults from ages 1 to 44, reaching a peak between the ages of 15 and 35. Cerebrovascular disease also significantly affects working-age adults and not only the elderly.
Thanks to medical advances and the ever more efficient organization of emergency services and care, a growing number of patients, who in the past would have died after a few hours, now survive and emerge from their coma.
A new category of patients is thus created: an increasing number of post-comatose patients with severe Acquired Brain Injury (ABI) caused by traumatic brain injury or by cerebrovascular disease, characterized by a residual physical, intellectual, behavioral, social and emotional deficit, are not catered for in the existing medical environment.
No official statistics exist, but using the data available, it can be estimated that in the Lazio region alone over 300 people a year suffer from the sequela of a coma; coma patients of previous years must also be added to this number. (It has been estimated that in Italy there are currently 15,000 people in coma caused by traumatic brain injury and 18,000 people in coma caused by cerebrovascular disease.)
It is estimated therefore that a Centre, providing the assistance described, would be used potentially by 2,000 to 3,000 patients in the Lazio region alone and from 22,000 to 30,000 patients on a nation-wide basis. A number which tends to increase over time.
The first intervention on a patient with severe Acquired Brain Injury (ABI) is to develop an individual rehabilitation programme which addresses the overall physical and mental condition of the patient.
This entails taking into account and intervening on a patient's damaged physical functions, psychological and behavourial problems, and the difficulties encountered in the areas of social interactions, relationships and workplace reintegration.
On a purely operational level, the ADELPHI Day Centre aims to combine rehabilitative health care with interventions in the areas of social interaction and relationships by putting in place measures to create a synergy between rehabilitation on the one hand and social and educational activities on the other.
The condition of patients with ABI is such that doctors tend to address first of all the patient's neurological and physical disabilities. To this end, a series of interventions are immediately initiated aimed at bringing about the recovery of the patient; however, psychological and behavioral problems, which often are a barrier to full recovery, will also be tackled in full. To achieve this, the methodology to be adopted by the professionals working at the Centre will also incorporate the Vaccari Institute's consolidated experience in comprehensive programme planning.
The interdisciplinary team of professionals (which will operate on different levels of care for each ABI patient), will work together at all stages to evaluate and plan the intervention on the patient, to put into practice the operational programme and take part in the subsequent monitoring process.
The involvement of a patient's family is indispensable. The operating model of the Centre will be based also on the involvement of family members from the early stages of user input. This will allow for a joint programme to be put into place thanks to the sharing of intervention methodologies between all the professionals concerned
It is vitally important that when a patient has been used to a certain amount of independence (compatible with his/her capabilities), he/she maintains this independence when he/she leaves the Centre. It has often been noted that family members mistakenly tend to step in and act for patients in order to save them from undertaking physical and/or psychological exertions.
The Nando Peretti Foundation has awarded a grant to achieve the following goals:
- acquisition of state-of-the-art technologies and the services of highly qualified professionals in order to provide a Centre with a strong appeal, thanks to the Foundation's enhanced competence deriving from it being a mix of public and private bodies
- the implementation of the services of ASL RM E's Department of Physical Medicine and Rehabilitation
- the involvement of local services, even from the private sector, for the provision of capital and know-how.
The benefits deriving from the construction of the Day Care Centre can be summarised as follows:
The Centre will assume a unique position given the total absence of a comparable health model in the NHS - National Health Service (SSN) provisions for central-southern Italy; and this in the face of huge demand.
The Day Care Centre will optimize the cost benefit ratio thanks to:
- Reducing the time spent in intensive care, with a better use of available resources
- Extending the quality of the range of services offered with the implementation of therapeutic procedures according to criteria of specificity and expertise
- A positive impact on 'outcome', thus reducing disabilities affecting a population of young patients, resulting in a saving of economic and social resources
- Aiding patient recovery through a rapid reintegration into the home environment to take advantage of beneficial effects of a family setting.
The ADELPHI Centre has therefore been conceived as a day care structure which is able to provide a full range of rehabilitative services. Each patient will be closely followed through all stages of care up until his/her reintegration into the community and where possible, into the workplace. The aim is to stabilize his/her recovery at the highest functional level possible.
An idea of the Centre's work can be deduced from the following objectives it has set itself:
- Continuation and optimization of the rehabilitation therapies initiated during hospitalization
- Restoration and maintenance of relational interaction
- Social integration and employment training
The Centre has also set itself the goal of undertaking the professional development of the personnel who will work there.
Another objective is to implement innovative techniques and adopt state-of-the-art equipment which could be "exported" to similar centers (although currently in Italy very few of these centres exist ).