Investigating the Experience of Living With Down Syndrome and Obstructive Sleep Apnea Syndrome (Stage 1)

Children's Hospital of Philadelphia (CHOP)

Status

Completed

Conditions

Down Syndrome

Obstructive Sleep Apnea

Treatments

Behavioral: Open-ended semi-structured interviews

Study type

Interventional

Funder types

Other

NIH

Identifiers

NCT04124471

R61HL151253-01 (U.S. NIH Grant/Contract)

19-016222

Details and patient eligibility

About

To identify the perceptions, beliefs, and family-relevant outcomes regarding the treatment of obstructive sleep apnea syndrome (OSAS) with positive airway pressure (PAP) in children with Down's Syndrome (DS).

Full description

This is a multi-center outpatient study to be performed at two clinical sites: Children's Hospital of Philadelphia and Cincinnati Children's Hospital. Forty Caregivers of children with DS and OSAS treated with PAP and their children will be enrolled. The study comprises one 30-minute open-ended semi-structured interview per caregiver. The duration of the interview is approximate. It will last up to 30 minutes as some families may want to include more details.

Enrollment

42 patients

Sex

All

Ages

6 to 17 years old

Volunteers

No Healthy Volunteers

Inclusion and exclusion criteria

Inclusion Criteria -- Patients

Children with DS and OSAS treated with PAP for at least 6 months
Children aged between 6 and 17.5 years
English proficiency

Inclusion Criteria -- Caregivers

Parent or legal guardian of an eligible patient subject
English proficiency
Must live with the patient subject at least 4 nights of the week

Exclusion Criteria -- Patients

In foster care
Diagnosed with major illness, such as leukemia or severe cyanotic congenital heart disease listed for cardiac transplant as these severe diseases may add confounders

Exclusion Criteria -- Caregivers