Résumé :
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Introduction : following acute care unit discharge, it is often hard to find suitable facilities for patients with neuromuscular diseases who underwent tracheotomy and need ventilatory assistance. This is also true when they are looking for a relief stay, or a resting place outside of the family circle. Institutions which might take themin often allege security reasons to back up a negative answer. Such a situation appears to be quite paradoxical, at a time when many of these patients live at their home, at least on a temporary basis (1, 2, 3, 4). Two rehabilitation centres accustomed to this population have listed the necessary requirements to fulfill security criteria. Objective : the aim of the study was to see whether each of the two centres meet the requirements indexed in a checklist, and then to convert the document in an effective watch tool. Materials and method : the check-list was built upon the professional experience of the staff, and is in accordance with medical standards (5,6). It is composed of 19 items, divided into 3 domains dealing : 1- Equipment checking, 2- Staff competence and team organization, 3-Accessibility tomedical follow-up data in the patient chart. The study involved 23 patients. Results : a total of 437 items has been filled up. 76 % (N = 308) are positive, and particulary those related to emergency situations (immediate availability manual inflator, suctioning device, qualified staff). 21% (N = 99) of the criterions are negative. Item3 collects 8 criterions related to patients-ventilator connection. These criteria are not validated in 39%of the cases. One will chiefly retain : lack of respiratory device pictures in all cases, lack of checking of circuit tightness (5 cases), or safe tube/pipe connection (2 cases), lack of certainty that any part of respiratory device would go over the wheelchair (6 cases) or inappropriate water traps or tube position (5 cases). Emergency alarmsystem was ineffective in 2 cases, and maximal duration of ventilatory autonomy is unknown in 5 patients. Discussion : breaches of security rules as shown by the present study confirm the usefulness of the action that was undertaken. Such an actionmeets the patients' safety demands (7). At this point, literature data remain scarce regarding this specific care level, positioned between acute care and home mechanical ventilation (8). Conclusion : the present work tends to increase the sensitivity of the entire workforce on contact with the patients to the importance of training twice a year and fot each new patient. Besides emergency kit's availability on wheel chair, usefulness and pertinence of our check-list and ventilatory device picture have to be reinforced in additional institutional settings. 1) Current issues in home mechanical ventilation, Lewarsky JS, GayPC, Chest. 2007; 132(2) :671-6 2) Prolonged mechanical ventilation after critical illness, Mauri T, Pivi S, Bigatello LM Minerva Anestesiol. 2008 Jun;74(6) :297-301 3) Outcomes of post-acute hospital episodes for young children requiring airway support.O'Brien JE, Haley SMet col, Dev. Neurohabil. 2007 Jul-Sept; 10(3) : 241-7 4) Where to perform long term ventilation? Ambrosino N, Vianello A. Resrpir. Care Clin N Am. 2002 Sep; 8(3) : 463-7 5) Respiratory Care of the patients with Duchenne Muscular Dystrophy : ATS Consensus Statement. Americ Jour of Res and Crit Care Med. 2004 ; Vol 170. pp. 456-465, 6) Mechanical ventilation of Duchenne patients with chronic respiratory insufficiency/clinical implication of 20 years published experience. Tousaint M., Chatwin M., Soudon D. Chronic Respiratory disease 2007; 7 : 167-177 7) Being the lifeline : The parent experience of caring for a child with neuromuscular disease on home mechanical ventilation.Mah JK, Thannhauser JE, McNeil DA, Dewey D.Neuromuscul Disord. 2008 Dec;18(12) :983-8. 8) Quality control of equipment in home mechanical ventilation : a European survey. Farre R, Lloyd-Owen SJ, Ambrosino N, Donaldson G, Escarrabill J, Fauroux B, Robert D, Schoenhofer B, Simonds A, Wedzicha JA. Eur Respir J. 2005 Jul;26(1) :86-94.
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