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The Quality of Life and Direct Financial Costs Associated With Home Ventilation of Children: A Prospective Study

Completed
Conditions
Children Receiving Ventilation at Home for Chronic Illness or Disease
Registration Number
NCT01863992
Lead Sponsor
University of British Columbia
Brief Summary

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.

Detailed Description

Not available

Recruitment & Eligibility

Status
COMPLETED
Sex
All
Target Recruitment
90
Inclusion Criteria

All families, or appointed guardians, caring for children that need home ventilatory support will be eligible for enrollment

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Exclusion Criteria

Refusal to join the study

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Study & Design

Study Type
OBSERVATIONAL
Study Design
Not specified
Primary Outcome Measures
NameTimeMethod
The Quality of Life and Direct Financial Costs Associated With Home VentilationOne year starting june 2013.

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.

Secondary Outcome Measures
NameTimeMethod
The Quality of Life a Direct Financial Costs Associated With Home VentilationOne year starting june 2013

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)

Trial Locations

Locations (1)

BC's Children's Hospital

🇨🇦

Vancouver, British Columbia, Canada

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