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.
Study Type
OBSERVATIONAL
Enrollment
90
BC's Children's Hospital
Vancouver, British Columbia, Canada
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.
Time frame: One year starting june 2013.
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)
Time frame: One year starting june 2013
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