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

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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT01863992

Enrollment

Registered

2013-05-29

Start date

2013-09-30

Completion date

2015-02-28

Last updated

2017-09-21

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Children Receiving Ventilation at Home for Chronic Illness or Disease

Keywords

home ventilation

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.

Interventions

None listed

Study design

Observational model

OTHER

Time perspective

PROSPECTIVE

Eligibility

Sex/Gender

ALL

Age

1 Years to 17 Years

Healthy volunteers

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

Design outcomes

Primary

Measure	Time frame	Description
The Quality of Life and Direct Financial Costs Associated With Home Ventilation	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

Measure	Time frame	Description
The Quality of Life a Direct Financial Costs Associated With Home Ventilation	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

Measure	Time frame	Description
The Quality of Life and Direct Financial Costs Associated With Home Ventilation	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).

Countries

Canada

Outcome results