Respiratory Failure
Conditions
Keywords
ethics, COPD, end of life, mechanical ventilation, CRF home ventilated patients
Brief summary
To verify with a specific questionnaire, the families' perceived quality of end-of-life care and of dying in the last 3 months of life of 168 patients (Chronic Obstructive Pulmonary Disease-Amyotrophic Lateral Sclerosis (ALS)-Restrictive disorders-Neuromuscular disease- others) with chronic respiratory failure needing domiciliary mechanical ventilation (MV).
Detailed description
Participants: 168 patients' relatives presenting five categories of diseases (Chronic Obstructive Pulmonary Disease-Amyothrophic Lateral Sclerosis (ALS)-Restrictive disorders-Neuromuscular disease- others) answered to questionnaire. Interventions: none Measurements and Main Results: 35 questions grouped in 6 specific domains (Control of pain and symptoms (domain 1-D1), awareness of disease (D2), family burden (D3), the process of dying (D4), medical troubles including hospitalizations (D5) and technical problems linked to MV(D6) were asked after the patient's death to a family member by means of a face to face interview. Answers to the binary 35-item questionnaire were distributed into just two clusters per each domain.
Interventions
application of a family survey on last 3 months of life for their relatives under HMV
Sponsors
Study design
Eligibility
Inclusion criteria
All patients mechanically ventilated at home who died
Exclusion criteria
patients with cancer
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| level of family burden | 3 months after patient's death |
Secondary
| Measure | Time frame |
|---|---|
| influence of diagnosis and modality of ventilation | 3 months after patient's death |
Countries
Italy