Children Receiving Ventilation at Home for Chronic Illness or Disease Clinical Trial
Official title:
The Quality of Life a Direct Financial Costs Associated With Home Ventilation of Children: A Prospective Study
| Verified date | September 2017 |
| Source | University of British Columbia |
| Contact | n/a |
| Is FDA regulated | No |
| Health authority | |
| Study type | Observational |
The investigators wish to learn about the quality of life (QOL) of children needing long term home ventilation and also that of their regular caregivers. In addition, the investigators will monitor the extra health-related expenses these families must meet. Data will be collected using two age-specific questionnaires of QOL plus a third one validated for assessing chronic health care costs. Questionnaires will be administered at an initial face to face meeting, supplemented by two telephone follow-up calls, to monitor medical expenses, one and two months later.
| Status | Completed |
| Enrollment | 90 |
| Est. completion date | February 2015 |
| Est. primary completion date | December 2014 |
| Accepts healthy volunteers | No |
| Gender | All |
| Age group | 1 Year to 17 Years |
| Eligibility |
Inclusion Criteria: All families, or appointed guardians, caring for children that need home ventilatory support will be eligible for enrollment Exclusion Criteria: Refusal to join the study |
| Country | Name | City | State |
|---|---|---|---|
| Canada | BC's Children's Hospital | Vancouver | British Columbia |
| Lead Sponsor | Collaborator |
|---|---|
| University of British Columbia |
Canada,
| Type | Measure | Description | Time frame | Safety issue |
|---|---|---|---|---|
| Other | The Quality of Life and Direct Financial Costs Associated With Home Ventilation | The out-of-pocket expenses caused by caring for a child with home ventilation will be assessed using a validated questionnaire called the Ambulatory and Home Care Record (AHCR). | One year starting june 2013 | |
| Primary | The Quality of Life and Direct Financial Costs Associated With Home Ventilation | Quality of life for children on home ventilation will be assessed using the validated PedsQL score. This has been specifically designed to measure quality outcome in children with long term health problems. | One year starting june 2013. | |
| Secondary | The Quality of Life a Direct Financial Costs Associated With Home Ventilation | The quality of life for parents caring for a child needing home ventilation will be assessed using a validated questionnaire called the Caregiving Impact Scale (CIS) | One year starting june 2013 |