Therapeutic educational workshops for caregivers of patients with severe acquired brain injury.

Abstract: Severe acquired brain injury (sABI) leads to a wide range of functional limitations in cognitive, moto and behavioural abilities. These changes impact the patient's family in terms of the feeling of emotional and physical health, social life and financial condition. Caregivers are often intensely involved in the patient's management exposing them to negative effects of caregiving including stress, mood disorders and decreased quality of life. Implementing forms of active involvement of caregivers in the rehabilitative program could be useful. Thus, in the present study, therapeutic educational workshops (TEWs) for caregivers during the post-acute intensive hospitalization were organized during the post-acute intensive hospitalization of patients with sABI. The caregivers were asked to participate in the workshops to actively involve them in the patient's care and neurorehabilitation program. Each workshop session provided indications regarding the management of the patient with aphasia, neglect, behavioural and swallowing disorders. A questionnaire of 22 items has been designed in order to represent possible indicators of usefulness and effectiveness of the TEWs. The primary aim of this study was to develop a reliable and valid questionnaire able to assess the caregivers' satisfaction with the modalities of carrying out the TEW as a novel activity during the post-acute hospitalization of patients with sABI. The second aim was to assess the caregivers' satisfaction with the utility of the TEW as a tool to enhance their skills in the management of patients' disabilities. 100 caregivers of patients with sABI who attended at least one TEW session and completed the questionnaire were included in the analysis. In conclusion the administered questionnaire has proven to be a valid and reliable tool to evaluate sABI caregivers' satisfaction with TEW. Moreover, caregivers were satisfied with the organization of the TEW and with their usefulness in the management of the patients with sABI.

Long-term non-invasive ventilation in muscular dystrophy.

Long-term non-invasive ventilation (NIV) was introduced in the 1980s, initially mainly for patients with poliomyelitis, muscular dystrophy (MD) or scoliosis. The obesity-hypoventilation syndrome has since become the commonest reason for referral to most centres providing home-NIV. Patients with MD are numerically a much smaller part of the workload, but as their disease progresses the need for ventilatory support changes and they require regular comprehensive assessment of their condition. We have examined the trend in MD use of home-NIV in our unit over the last 25 years. The number of new referrals appears to be stabilizing at around 20-25 over a 5-year period, equivalent to approximately 0.5 per 100,000 of population per year. The mean age at commencement of home-NIV is now 37.5 years, with 5-year survival rates of 70-75%. Ten-year survival rates are just over 40%. The distance of usual place of residence from our unit is fairly stable, currently at a mean of 27 km. Excellent survival rates mean that patients with MD, while numerically small, are likely to remain an important part of the workload of centres providing home-NIV. Our data should prove useful in the planning of future services for this group of patients.

Effect of expiratory positive airway pressure on tidal volume during non-invasive ventilation.

During non-invasive ventilation (NIV), tidal volume ( Vt) will depend upon the difference between inspiratory and expiratory positive airway pressure (IPAP and EPAP, respectively), provided the respiratory muscles are relaxed and the lungs and chest wall therefore move along their passive pressure-volume curves. To test this hypothesis, we studied the effect of increasing EPAP during pressure-controlled modes of NIV in 30 long-term ventilator users (10 each with scoliosis, obesity hypoventilation or neuromuscular disorders). While maintaining the same IPAP, addition of 5 cmH2O of EPAP reduced mean Vt by 167 ml; 10 cmH2O reduced Vt by 367 ml. This pattern was seen in all three patient groups. EPAP has several potential advantages, for example maintaining upper airway patency, preventing basal atelectasis and facilitating triggering. EPAP does, however, appear to reduce Vt. Decreasing EPAP is an alternative to increasing IPAP if measurements of gas exchange during NIV indicate that ventilation is inadequate.