Examination of Sleep and Family Functioning in Pediatric Craniopharyngioma Patients
Condition: Craniopharyngioma
MeSH terms: Craniopharyngioma; Adamantinoma
Study type: Observational

Summary: 
      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.
    

Detailed description: 
      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.
    

Observational model: Cohort
Time perspective: Prospective
Sampling method: Non-Probability Sample
Study population: 
        Participants for the proposed study will be children who participated in the parent study
        (ages 8-18 at the time of enrollment on RT2CR) and have an ongoing relationship with the
        study team. They will be contacted during their follow-up clinic visits and invited to
        participate in this additional study. Parental consent and participant assent (if age <18)
        or consent (if age ≥18) for the proposed study will be obtained in-person.

        Two institutions will collaborate in the proposed project: St. Jude Children's Research
        Hospital (SJCRH) and Virginia Commonwealth University (VCU), however, recruitment, patient
        enrollment, and data collection will only take place at St. Jude.
      
Keywords: Ecological momentary assessment; Sleepiness; Fatigue; Endocrinopathy; Family functioning