Children’s Hospital U C SF Division of Adolescent Medicine Web-Enabled Research Platform: The SIMS...
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Children’s HospitalUCSFDivision of Adolescent Medicine
Web-Enabled Research Platform:The SIMS Study
Carolyn Bradner Jasik, MDMichele Mietus-Snyder, MD
Michael Jarrett
Department of Pediatrics
University of California San Francisco
Children’s HospitalUCSFDivision of Adolescent Medicine
The SIMS Study• RCT of mindfulness-based program for obese
children ages 9-12• Goal recruitment = 160• Intervention = 6 weekly sessions reviewing
mindfulness techniques vs. standard of care• Sites = Children’s Hospital Oakland and San
Francisco General Hospital• Status = completed pilot phase and 1st
intervention group
Children’s HospitalUCSFDivision of Adolescent Medicine
Our Research Group
• 1 junior faculty mentor (PI), 1 RA, 2 collaborators (clinical fellows), and our contractor.
• Study funded by an American Heart Association grant.
Children’s HospitalUCSFDivision of Adolescent Medicine
Why we picked QuesGen• Multiple sites made web-based attractive• Data available real-time• The contractor did most of the work• Required less staff on study days to
administer survey, etc.• Less staff needs for data entry/cleaning• Short time-line for collection to analysis• It’s very cool!
Children’s HospitalUCSFDivision of Adolescent Medicine
The SIMS Study: Data Management
• Data Collection– Intake and Follow-up visits (2, 6, 12 mo)
• At each visit…– Parent questionnaire– Child questionnaire– Labs– Nutrition/Physical activity assessment (on-line)– Provider assessment (history and physical exam)
• Administrative Data– Demographics/contact information– Appointment tracking, etc.
Children’s HospitalUCSFDivision of Adolescent Medicine
Survey (base only)Administrative DataDemographicsMedical History: HPI, social, family, etc.Parent Intake History
The Reality
• Relational approach made sense, but data extract is LARGE and hard to manage!
Visit (base, 2, 6, 12mo)Provider AssessmentNursing AssessmentChild questionnairesParent questionnairesLabsExtra pilot measures (not used ultimately)
Block (base, 2, 6, 12mo)Nutrition AssessmentPhysical Activity Assessment
Employment (mult members per fam)Family member demographic information
MacArthur SES (parent and child)Answers to ladder questionnaire
Sibling DataObesity history, etc.
Children’s HospitalUCSFDivision of Adolescent Medicine
The Ideal
Admin (base)DemographicsRecruitmentPhone communication
Survey (base)HPIPMHSHFH
Provider Visit (base, 2, 6, 12)HistoryPhysical ExamPlan
Block (base, 2, 6, 12mo)Nutrition AssessmentPhysical Activity Assessment
Nursing Visit (base, 2, 6, 12)Height, weight, vitalsBMI calculator
FitnessGram (base, 2, 6, 12)
Child Psych ?s (base, 2, 6, 12)RCMASCEBQPerceived StressPQL
Disordered eating screen (base, 2, 6, 12)
Sub-study urine creatinine(base, 6)
Labs (base, 2, 6, 12)
Pilot Data(base)
Employment (mult members per fam)Family member demographic information
MacArthur SES (parent and child)Answers to ladder questionnaire
Sibling DataObesity history, etc.
Parent Psych ?s (base, 2, 6, 12)CEBQPerceived StressPQL
Children’s HospitalUCSFDivision of Adolescent Medicine
What We Did Right
• Did not use EXCEL/ACCESS
• No paper forms
• Web-based vs. desktop/network
• Resisted the urge to get “fancy”
• Anticipated analysis needs while developing database
• Partnered with other researchers ($)
Children’s HospitalUCSFDivision of Adolescent Medicine
Our Pitfalls• Allow more time for development• Allocate more funds• Be more prepared for contractor meetings• Take full advantage of the technology• Trust the technology• Trust our participants less (more data input “checks”)• Anticipate report/extract needs earlier• Collect less data• First extract 6 months after data collection started• Mentor actually used it for the first time this month
Children’s HospitalUCSFDivision of Adolescent Medicine
The Cost (financial and personal)
• $10,000 for contractor fees– Real cost likely much higher
• I spent ~100 hours on development
• I needed to be available via page during all data collection days to triage issues/questions
Children’s HospitalUCSFDivision of Adolescent Medicine
Words of Wisdom• For your first time, try and work within a larger team
to learn from experience• Over-estimate how much time it will take and the cost• Use, don’t abuse, your contractor• Identify a primary database “guru” in the team• Understand the technology before you start to create
your database and data collection• Encourage input from your data programmer, RAs,
and study coordinator • Always have back-ups and paper just in case
Children’s HospitalUCSFDivision of Adolescent Medicine
Future Directions
Make the technology part of the study itself!
Children’s HospitalUCSFDivision of Adolescent Medicine
Future Directions• Adapt tool for research and clinical use
– Integrate clinical assessment and research data collection
• Pilot study in UCSF obesity clinic• Pie in the sky…create shared research
database for regional obesity clinics
Children’s HospitalUCSFDivision of Adolescent Medicine
Jane Doe, MD FAAPObesity Specialist
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