title: [Life quality of patients with muscular failure, using permanent respiratory support, seen from their point of view. 1. Information, choice and quality of life].
abstract: Sixteen patients with neuromuscular disease receiving long-term assisted ventilation participated in a combined questionnaire/interview investigation with the purpose of illustrating: 1. What information the patient had received prior to institution of the respirator treatment, 2. The difficult choice which had to be made, 3. Whether life as a severely disabled person with assisted ventilation is worth living, and 4. The factors on which successful respirator treatment depends. It is concluded that the general information on use of assisted ventilation should be implemented at an early stage, preferably before problems of respiratory insufficiency occur, and that information should be carried out by people other than merely professionals and be as broad and truthful as possible in order to provide the disabled person with sufficient foundation and sufficient time to consider his personal choice of potential respirator treatment. Further, it is concluded that life for these sixteen ventilator-dependent persons definitely is worth living. The fact that the respirator implies the prospect of longer life, partly freed from symptoms of hypoventilation, means that they have got strength and time for education, work, family and dreams. No correlation was found between the success of the respirator treatment and the patients' sense of achieved quality of life and factors such as age, family-/working situation, extent of disability etc., and professionals should not attach importance to such factors in the selection of "suitable" patients for assisted ventilation.
authors.affiliation: Muskelsvindfonden, Arhus C.
authors.forename: E
authors.initials: E
authors.lastname: Jøors
authors.forename: B
authors.initials: B
authors.lastname: Steffensen
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001294:Attitude to Health; D003657:Decision Making; D003718:Denmark; D006801:Humans; D008875:Middle Aged; D009468:Neuromuscular Diseases / Q000523:psychology* / Q000628:therapy; D010353:Patient Education as Topic / Q000379:methods; D011788:Quality of Life; D012121:Respiration, Artificial / Q000523:psychology*; D011795:Surveys and Questionnaires
vernacular_title: Tilvaerelsen for permanente respiratorbrugere med muskelsvind, set med brugerøojne. 1. Information, valg og livskvalitet.