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Completed

NCT Number: NCT01863992

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

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.

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Key information

Conditions

Children Receiving Ventilation at Home for Chronic Illness or Disease Disease Pathologic Processes Pathological Conditions, Signs and Symptoms

Age range

1 year–17 year

Sex eligibility

All sexes

Study type

Observational

Primary location

BC's Children's Hospital

Vancouver, British Columbia, V6H 3V4, Canada

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. The Quality of Life and Direct Financial Costs Associated With Home Ventilation

    Time frame: One 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 outcomes

  1. The Quality of Life a Direct Financial Costs Associated With Home Ventilation

    Time frame: One 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)

Other outcomes

  1. The Quality of Life and Direct Financial Costs Associated With Home Ventilation

    Time frame: One year starting june 2013

    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).

Sponsors and collaborators

Lead sponsor

University of British Columbia

Other

Registry information

Official study title

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

Important dates

Study start
2013
Primary completion
2014
Study completion
2015
First posted
May 29, 2013
Registry last updated
Sep 21, 2017

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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