Improving Social Relationships for Adolescents With Central Disorders of Hypersomnolence
Overview
- Phase
- N/A
- Intervention
- Web-based psychoeducational resource
- Conditions
- Narcolepsy Type 1
- Sponsor
- Boston Children's Hospital
- Enrollment
- 25
- Locations
- 1
- Primary Endpoint
- Acceptability (Enrollment)
- Status
- Completed
- Last Updated
- last month
Overview
Brief Summary
The goal of this study is to test a web-based psychoeducational resource for adolescents with central disorders of hypersomnolence and their families. The investigators hope to assess the website's usability, acceptability, and feasibility, as well as its potential effect on social relationship health.
Participants will be asked to review the content of the psychoeducational websites. The participants will then provide feedback on the website, as well as the adolescent's social relationships and social health before and after reviewing the website through online surveys.
Detailed Description
The American Academy of Sleep Medicine's clinical practice guideline task force concluded that "reliance on medications alone to treat CNS hypersomnia conditions is likely insufficient." Our stakeholder data demonstrated that this issue is a significant challenge in the domain of social relationship health for children with narcolepsy type 1 and 2 (NT1/NT2) and idiopathic hypersomnia (IH). With one peak for symptom onset in adolescence, a critical period in a child's social development, children with NT1/NT2/IH and their families report significant social sequelae of the disorder and its treatment that have lifelong implications. To address this important, yet consistently overlooked real-life concern for adolescents with CDH, the investigators intend to assess an online psychoeducational website that the investigators designed to provide families with the knowledge and resources to improve the adolescent's social relationship health. A total of 45 families will participate in a single-arm usability, feasibility, and acceptability trial. Eligible families will be provided with instructions on how to access the website. Participants will be encouraged to return to the website as often as needed to review content. For the purposes of this study, participants will be instructed to review all intervention materials within one month of receiving website access. The participants will then complete feedback questionnaires on the secure online platform REDCap. This study will inform a future randomized controlled trial testing the efficacy of the investigators' intervention. The investigators' stakeholder informed program will be the first of its kind for children with NT1/NT2/IH, with the potential to be widely disseminated.
Investigators
Eric Zhou, PhD
Assistant Professor
Boston Children's Hospital
Eligibility Criteria
Inclusion Criteria
- •Adolescent from 10-17 years of age and parent of the adolescent
- •Adolescent has physician-diagnosed narcolepsy type 1 or type 2, or idiopathic hypersomnia
- •English fluency
- •Interest in learning more about how to improve social health for adolescents with a CDH
Exclusion Criteria
- Not provided
Arms & Interventions
Web-based psychoeducational Resource
Eligible families will be provided with website access instructions. Parents and children will be instructed to review the materials separately. The intervention will provide each person with individualized action items to be discussed as a family. It is anticipated that reviewing all of the psychoeducational materials will take the parent/child approximately one hour, resulting in a total intervention burden of two hours for the family. Participants will be encouraged to return to the website as often as needed to review content. For the purposes of this project, they will be instructed to review all intervention materials within one month of receiving the website access instructions.
Intervention: Web-based psychoeducational resource
Outcomes
Primary Outcomes
Acceptability (Enrollment)
Time Frame: 5 weeks
Proportion of eligible families who express interest in the study choosing to enroll.
Usability
Time Frame: 5 weeks
System Usability Scale. The minimum score is 10 and the maximum score is 50. Each question is measured on a scale from 1-5. A higher score indicates higher usability (better outcome). Completed by both the parent and child.
Acceptability (Satisfaction)
Time Frame: 5 weeks
Satisfaction subscale of the Usability, Satisfaction, and Ease of use scale. Each question is measured on a scale from 1-7. The minimum score is 7 and the maximum score is 49. A higher score indicates higher website satisfaction (better outcome).
Acceptability (Recommend Website)
Time Frame: 5 weeks
Proportion of participants who respond positively to the Post-Intervention questionnaire item "Would you recommend this website to other families of children with NT1/NT2/IH?".
Feasibility (Website Access)
Time Frame: 5 weeks
Proportion of participants that access the website at least once during the study period.
Feasibility (Assessment Completion)
Time Frame: 5 weeks
Proportion of participants who complete the Post-Intervention Assessment.
Secondary Outcomes
- Social Problems (Social Relationships)(0 weeks and 5 weeks)
- Relationship Quality(0 weeks and 5 weeks)
- Social Problems (Loneliness)(0 weeks and 5 weeks)