Examination of Sleep and Family Functioning in Pediatric Craniopharyngioma Patients
| Status: | Completed |
|---|---|
| Conditions: | Neurology |
| Therapuetic Areas: | Neurology |
| Healthy: | No |
| Age Range: | 8 - 18 |
| Updated: | 3/10/2019 |
| Start Date: | February 12, 2018 |
| End Date: | January 29, 2019 |
Examining Sleep and Family Functioning in Pediatric Craniopharyngioma Using Ecological Momentary Assessment
Pediatric craniopharyngioma patients experience significant endocrine and sleep dysregulation
difficulties. Sleep is a crucial part of children's healthy development, and sleep
difficulties are associated with severe functional morbidity. Insufficient sleep, excessive
daytime sleepiness, and poor sleep quality have all been significantly related to academic,
behavioral, and emotional functioning in children and adolescents. Ecological momentary
assessments (EMA) will be used to collect observational data.
EMA data will be collected twice daily for one week. For the morning EMA administration,
participants will be asked about their sleep. During the evening administration, participants
will be asked about their daytime sleepiness, overall well-being, and family functioning.
Covariates also administered during the evening administration include medication
administration (Y/N) and total screen time. At the end of the EMA data collection period (on
day 7 OR 8), participants will be sent a survey asking them to report - anonymously - their
overall experience and satisfaction with the EMA data collection method.
difficulties. Sleep is a crucial part of children's healthy development, and sleep
difficulties are associated with severe functional morbidity. Insufficient sleep, excessive
daytime sleepiness, and poor sleep quality have all been significantly related to academic,
behavioral, and emotional functioning in children and adolescents. Ecological momentary
assessments (EMA) will be used to collect observational data.
EMA data will be collected twice daily for one week. For the morning EMA administration,
participants will be asked about their sleep. During the evening administration, participants
will be asked about their daytime sleepiness, overall well-being, and family functioning.
Covariates also administered during the evening administration include medication
administration (Y/N) and total screen time. At the end of the EMA data collection period (on
day 7 OR 8), participants will be sent a survey asking them to report - anonymously - their
overall experience and satisfaction with the EMA data collection method.
After recruitment and informed consent/assent is obtained for the current study, participants
will be asked to complete a questionnaire battery online (via REDCap) assessing sleep habits,
daytime sleepiness, family routines, family functioning, and overall quality of life in the
past six months. The relationship between subjective sleep ratings obtained from the parent
craniopharyngioma study at St. Jude (RT2CR) at diagnosis and 3 months later (T1 and T2) and
family functioning/routines at the follow-up study (T3) will be assessed. The researchers
have permission to use data for all participants who consent to participate in this follow-up
EMA study.
Children will be sent electronic surveys two times per day (i.e., morning and evening) for
seven days using Ilumivu software (https://ilumivu.com/mema-demo). Ilumivu is an established
EMA tool that offers an in-mobile app for participants to respond to questionnaires in real
time with limited burden. This application will send notifications to participants to remind
them to complete surveys and record response times for each survey.
will be asked to complete a questionnaire battery online (via REDCap) assessing sleep habits,
daytime sleepiness, family routines, family functioning, and overall quality of life in the
past six months. The relationship between subjective sleep ratings obtained from the parent
craniopharyngioma study at St. Jude (RT2CR) at diagnosis and 3 months later (T1 and T2) and
family functioning/routines at the follow-up study (T3) will be assessed. The researchers
have permission to use data for all participants who consent to participate in this follow-up
EMA study.
Children will be sent electronic surveys two times per day (i.e., morning and evening) for
seven days using Ilumivu software (https://ilumivu.com/mema-demo). Ilumivu is an established
EMA tool that offers an in-mobile app for participants to respond to questionnaires in real
time with limited burden. This application will send notifications to participants to remind
them to complete surveys and record response times for each survey.
Inclusion Criteria:
- Craniopharyngioma diagnosis
- Access to smartphone or a tablet
- Agreement to download Ilumivu application
- The ability for the participant to answer questionnaires (i.e., no cognitive or
developmental diagnoses that would preclude understanding and completing child
self-report questionnaires)
- Age between 8 and 18 years old at the time of enrollment onto St. Jude protocol RT2CR.
- Participated in sleep study component of RT2CR
Exclusion Criteria:
- Limited English proficiency as evidenced by an inability to read and respond to EMA
survey questions
- Visual or sensorimotor impairment (e.g., loss of sight)
We found this trial at
1
site
262 Danny Thomas Pl
Memphis, Tennessee 38105
Memphis, Tennessee 38105
(901) 495-3300
Principal Investigator: Valerie Crabtree, Ph.D
Phone: 866-278-5833
St. Jude Children's Research Hospital St. Jude is unlike any other pediatric treatment and research...
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