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15th Texas HIV/STD Conference December 11-15, 2006 Renaissance Austin Hotel Austin, Texas. Top Ten Reasons Why Patients Are Lost To Care. J4 - Texas/Oklahoma AIDS Education & Training Center Border Issues Track: . Tom Emanuele, Carlos Cuellar, Jose Sanchez Parkland Health & Hospital System

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top ten reasons why patients are lost to care

15th Texas HIV/STD ConferenceDecember 11-15, 2006Renaissance Austin HotelAustin, Texas

Top Ten Reasons Why PatientsAre Lost To Care

J4 - Texas/Oklahoma AIDS Education & Training Center Border Issues Track:

Tom Emanuele, Carlos Cuellar, Jose Sanchez

Parkland Health & Hospital System

HIV Services

Dallas, Texas

  • Provide information to program planners to help develop strategies and services for retaining patients in care
  • Discuss barriers to care and help understand the reasons that patients drop out of care
  • Discuss the top ten reasons given by patients for leaving HIV primary care
lost to care program

Lost to Care Program

The Beginning

Program initiated - 2001

Purpose: to track, locate and return to medical care patients who had stopped coming to clinic

lost to care program4

Lost to Care Program

February 2001 - January 2006

Total Unduplicated Patients 3596

Total Contacts 11,562 Deceased 319

Total Patients Returned to Care 1628

lost to care program5

Lost to Care Program

The Method

Patient Identification

Patients’ last PCP Visit was:

Then >12 months

Now > 6 months

Demographic information list

Medical Record Search

Database Search

lost to care

Lost to Care

Database Search

HIV Case Management Database

EPIC Database (Hospital mainframe Computer System)

Social Security Death Index Database

Medical Examiners Office (every county has one)

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Lost to care

Contact Attempts:

Contact Methods:



CPIU (UTSW Collaboration)

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Lost to care

Successful vs. Unsuccessful Attempts

Assist successful contacts with re-entry in to medical care

Unsuccessful contacts are referred to Community Prevention and Intervention Unit (CPIU) for follow-up

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Lost to Care

Top 10 Reasons

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Lost to Care


Transferred Care to Another Facility

  • Patient obtains insurance and chooses a private provider
  • Current insurance is out of network
  • Not eligible for Parkland Community Health Plan
  • Finds medical care closer to home
    • COPC
    • Private Doctor
    • Free Community Clinic

Top 10 Reasons

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Lost to Care


Patient Has Moved Out Of Area

  • To be closer to family or support system
  • Forgot to notify clinic that they have moved
  • Move frequently / mobile population

Top 10 Reasons

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Lost to Care


Patient has expired

  • Clinic not always notified of death
    • Do preliminary searches first to prevent upsetting family and significant others
  • Search SSDI Database and contact Medical Examiner’s Office first

Top 10 Reasons

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Lost to Care


Hospital or Rehab Program Admission

  • Due to non-compliance or substance use issues, patient requires admission
  • Substantial percentage of patients have substance use issues

Top 10 Reasons

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Lost to Care



  • Substance use issues may lead to incarceration
  • Psychological Issues

Top 10 Reasons

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Lost to Care


“Clinic visits take too long”

  • Dwell time to see provider too long
  • Wait time for discharge too long
  • Clinic visits cuts in to “me time!”

Top 10 Reasons

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Lost to Care


Patient Dislikes Staff

  • Patient dislikes the medical provider
  • Patient dislikes Nurse
  • Patient dislikes clerical staff

Top 10 Reasons

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Lost to Care


Unable To Get Time Off From Work

  • Patient afraid that employer will find out of diagnosis
  • Patient afraid of losing job and livelihood
  • Cannot afford unpaid days off

Top 10 Reasons

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Lost to Care


Patient Unaware Of Appointment

  • Patient did not wait to get properly discharged
  • Incorrect mailing address on file
  • Incorrect phone number
  • No Telephone / Unable to contact patient
  • Patient never calls clinic to check about
  • appointments
  • Patient doesn’t want calls/contacts from clinic

Top 10 Reasons

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Lost to Care


Patient Feels Fine

  • Patient feels well and doesn’t need to see a Doctor
  • Seeks medical care only when absolutely necessary
  • Patient tired of illness and doesn’t want to deal with it anymore
  • Clinic visits inconvenient and depressing

Top 10 Reasons

lost to care program20
Lost to Care Program


Desired Outcomes...

  • Successful F/U and re-entry into medical care of Lost to Care Population
  • Facilitate patient to achieve improved physical, economic, social and emotional well-being
  • Improved access to and adherence to HAART
  • Return patients to care at earlier stage of disease leading to better outcomes
  • Conserve resources, decrease Emergency Department visits and decreased hospitalizations ($$$$$$$$)
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Lost to Care Program

Better access to available support services. Clients are helped in overcoming fears, misconceptions, frustrations with system, and financial issues. Many clients express an appreciation for the personal contact and encouragement they have received.