Last 3 Months of Life in Home Ventilated Patients
- Conditions
- Respiratory Failure
- Interventions
- Other: survey administration
- Registration Number
- NCT00553046
- Lead Sponsor
- Fondazione Salvatore Maugeri
- 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.
Recruitment & Eligibility
- Status
- COMPLETED
- Sex
- All
- Target Recruitment
- 180
Not provided
Not provided
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Arm && Interventions
Group Intervention Description family burden survey administration chronich respiratory failure home ventilated patients
- Primary Outcome Measures
Name Time Method level of family burden 3 months after patient's death
- Secondary Outcome Measures
Name Time Method influence of diagnosis and modality of ventilation 3 months after patient's death
Trial Locations
- Locations (1)
FSM Respiratory Unit
🇮🇹Lumezzane, BS, Italy