This document discusses a clinical trial called RESTORE that studied sedation methods for pediatric patients on mechanical ventilation. It aimed to follow up with patients 6 months after discharge to assess outcomes. The task described was to locate patients lost to follow up in order to update their contact information for future studies. Methods involved searching online and contacting primary care providers while maintaining privacy standards. Challenges included technical issues, language barriers, unavailable records, and unreachable families. The work resulted in 4 verified updated addresses and identification of 14 potential matches requiring confirmation.

1. Locating Lost to Follow Up Patients
Faculty Advisor: Martha A.Q. Curley, RN, PhD, FAAN, Lou Ventura
University of Pennsylvania, School of Nursing
RESTORE Clinical Trial
BACKGROUND DELIVERABLES
ISSUES & LESSONS LEARNED
• Randomized Evaluation of Sedation
Titration for Respiratory failure (NIH
funded)
• Conducted at 31 Pediatric Intensive
Care Units(PICU’s) across the United
States
• Purpose: To learn more about the best
ways to keep PICU patients comfortable
and safe when they need mechanical
ventilation
• Outcome Measure: Whether or not the
comfort medication used in PICU
patients with acute respiratory failure
affected how long they needed to be
ventilated, AND physical and emotional
health 6 months post PICU discharge
• Half of the locations were given a
specific intubation/sedation protocol,
half followed their own
• In order to maintain a database of
patients for future studies, those
families that have been “Lost to Follow
Up” must be located
WORK PERFORMED
Produced from work performed in NURS 389 Fall 2015
Image(s)
• Ethical Issues
• Maintaining HIPPA standards while searching online or through
PCP’s for a consenting parent’s updated information
• When using the internet, you cannot always control the information
you find about a consenting parent
• Technical Issues
• SON computer system errors, preventing me from accessing the
necessary files in a timely manner each work day.
• No access to paid online data access sites (whitepages, spokeo,
etc.)
• Other Concerns
• Language barrier between me and the consenting parent
• Time-Zone limitations when contacting families
• PCP offices being unsure whether they are permitted to release
updated patient information
• A large number of “Missing” hard copy files that are used to
• Locate and update contact information for 2
families per week
• Update the systemic review of literature
• Maintain the RESTORE contact list through
confirming excel data with hard copy data
• 9 hours of research hours dedicated to: follow-up ethics, follow-up successes and
private corporations profiling follow-up services
• 117 verified addresses (added to the “to call” list)
• 66 missing files(still added to the “to call” list)
• 9 email addresses added to the excel file
• 71 Total Calls Made
• 6 Primary Care Providers
• 30 calls resulting in various forms of “disconnected”
• 20 messages left
• 3 busy signals
• 1 spanish speaker
• 3 calls mad to ‘wrong number responses
• 2 calls made to the correct family/person resulting in an updated address
• 14 research subjects located via a web search - address not updated due to lack of
verification
• Final count of addresses updated - 4
• 2 addresses updated by PCP
• 2 addresses updated by family a member
• Wrote a “script” for calling contact numbers and a “script” leaving a message