Last 3 Months of Life in Home Ventilated Patients
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).
|Study Design:||Observational Model: Cohort
Time Perspective: Retrospective
|Official Title:||Italian Multicenter Survey on the Last 3 Months of Life in Patients Ventilated at Home|
- level of family burden [ Time Frame: 3 months after patient's death ] [ Designated as safety issue: No ]
- influence of diagnosis and modality of ventilation [ Time Frame: 3 months after patient's death ] [ Designated as safety issue: No ]
|Study Start Date:||January 2005|
|Study Completion Date:||April 2007|
chronich respiratory failure home ventilated patients
Other: survey administration
application of a family survey on last 3 months of life for their relatives under HMV
Other Name: caregiver burden
Participants: 168 patients' relatives presenting five categories of diseases (Chronic Obstructive Pulmonary Disease-Amyotrophic 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.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00553046
|FSM Respiratory Unit|
|Lumezzane, BS, Italy, 25066|
|Principal Investigator:||michele vitacca, MD||Fondazione S. Maugeri IRCCS|