Decreasing Parental Stress of Caregivers of Infants With Infantile Spasms by Using Telemedicine Technology
Infantile Spasms, Non-Intractable
About this trial
This is an interventional supportive care trial for Infantile Spasms, Non-Intractable focused on measuring Infantile Spasms, parental stress, ACTH, remote monitoring
Eligibility Criteria
Inclusion Criteria:
- Patients admitted to CHCO, Anschutz and Colorado Springs hospitals, under the age of 30 months with a primary diagnosis of Infantile Spasms and started on first-time ACTH and their primary caregiver (parent/guardian).
Exclusion Criteria:
- Infants with recurrent Infantile Spasms and retreatment with ACTH and their primary caregiver (parent/guardian).
- Infants with existing home health nursing services and their primary caregiver (parent/guardian).
- Infants with prolonged inpatient admissions beyond 7 days after initiation on ACTH and their primary caregiver (parent/guardian).
- Infants whose caregivers do not read, write, and/or speak English with sufficient proficiency to provide informed consent and their primary caregiver (parent/guardian).
- Neonates less than 31 days old and their primary caregiver (parent/guardian).
- Infants that have been hospitalized since birth and their primary caregiver (parent/guardian).
- Infants that are wards of the state and their primary caregiver (guardian).
- Infants that reside in a geographic location with no major network cell service and their primary caregiver (parent/guardian).
Sites / Locations
- Children's Hospital ColoradoRecruiting
Arms of the Study
Arm 1
Arm 2
No Intervention
Experimental
Control Group
Intervention Group
This group will continue to receive standard care for ACTH monitoring and follow-up with includes blood pressure by the patient's PCP while on therapy, a one week nursing follow-up phone call, and a two-week EEG and Neurology appointment.
This group will be provided remote monitoring technology where they will be able to monitor blood pressure at home. In addition, they will receive a nurse-led telemedicine visit at one week and three weeks of therapy. Like the control group, they will still receive a two-week EEG and Neurology appointment.