UNOS Standard

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• The 2nd Greater Los Angeles Pediatric Transplant
  Summit Sue V.
  McDiarmid, MD
• OPTN/UNOS Past President

Why we still need to be here
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Pediatric Transplantation Committee Charge July
2006

• Minimize death on the pediatric wait list!
• Overall Goals
• Minimize pediatric waiting list mortality
  without significantly affecting adult mortality
  on the list
• Optimize pediatric transplant outcomes.
• Not there yet children are still dying waiting
  

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What is the Need for Pediatric Transplantation?
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Pediatric Patients Waiting by Organ Type
Snapshot of the List
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Pediatric Patients on the Waiting List and
Pediatric Deceased Donor Transplants in 2006, by
Organ
Note Waiting list statistics include 0-17
patients at listing, transplant statistics are
based on age at transplant.
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Number of Pediatrics Who Died or were Too Sick
on the Waiting List During 1/1/02-9/30/06, by Age
at Listing
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The Bottom Line

• 1,432 children died on the waiting list over less
  than 5 years.
• Assuming each child survived after transplant an
  average of 10 years
• 14,320 child years of life lost

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Thinking beyond the Numbers

• The rate of death - how many die adjusted for
  time waiting more relevant than a raw number
• 10 children dying in 1 year is different from 10
  children dying over 10 years

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Death Rates on the Waiting List

• Death rates are expressed deaths per 1000 patient
  years at risk while waiting

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Pediatric Deaths on the List

• As a pediatric liver transplant physician what
  has had me worried.

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Liver Deaths Per 1000 Patient Years at Risk
2005By Age Group
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Pediatric Deaths on the List

• But it is not all about the liver....

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Waiting List Death Rates for Candidates During
10/1/05-9/30/06, by Organ and Age at Listing
Note Due to number of patients lt5, rate was not
shown for Liver-Intestine patients gt5 years old.
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Annual Death Rates per 1,000 Patient-Years at
Risk Liver Waiting List
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Pediatric Deaths on the List

• What is the variation in pediatric deaths on the
  list over the country?

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Pediatric Waiting List Deaths Per 1000 Patient
Years By RegionAll Organs Age Group 0-1
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Adult Waiting List Deaths Per 1000 Patient Years
By RegionAge Group 18
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Deaths on the Pediatric List

• What are the DSA differences?
• Numbers small variation large

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Pediatric Liver Alone Candidates 0-2 Number
Removed For Death By DSA
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Pediatric Heart Candidates 0-2 Number Removed
For Death By DSA
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Who receives Deceased Donor Pediatric ( lt 18yrs)
Donors?
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Distribution of DD Heart Transplants from
Pediatric Donors during 9/12/00-7/10/06, by
Recipient and Donor Age
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Distribution of DD Lung Transplants from
Pediatric Donors during 5/4/05-7/3/06, by
Recipient and Donor Age
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Distribution of DD Liver Transplants from
Pediatric Donors during 8/24/05-7/23/06, by
Recipient and Donor Age
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Distribution of DD Kidney Transplants from
Pediatric Donors during 9/28/05-7/27/06, by
Recipient and Donor Age
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Implications of distribution of pediatric donors

• The majority of pediatric donors for liver,
  heart, lung are allocated to adults
• For pediatric liver, heart, and lung donors there
  is a distinctive cut off in donor age 6-10 yrs
  that defines those small pediatric donor organs
  that can only be transplanted into small
  recipients
• Important implications for allocation policy

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Pediatric Deaths on the List

• Children- especially young children are dying on
  the list at a higher rate compared to adults
• Why?
• Is it just not enough donors?

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Pediatric Deaths on the List

• How many never received an organ offer before
  death?
• How many refusals of offers before death?
• How many pediatric organs recovered not used?
• How many donors could have been consented?
• How many donors consented but organs not
  recovered why?
• How much does it matter where you live?

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Pediatric Deaths on the List

• Donor age surrogate for size matters caveat
  kidney
• How many pediatric donors are we procuring?

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Pediatric Deceased Donors Recovered 1995 -
2006By Donor Age Group
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How well are we doing with pediatric donor
conversion rates?

• On a national level still dont know!
• Age of eligible donors has not been a previous
  data requirement so conversion rates by age not
  readily available
• Some data available for Childrens Hospitals.
• Some from specific OPOs

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Reported Eligibles, Deceased Donors Recovered
and Conversion Rates at Pediatric Hospitals
During 2005
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Results of a National Survey of OPOsLori Markman
RN
1330
920
849
69
64
In 2005
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More pediatric donors- only part of the
Equation Need to get the organs into the
recipients

• Need the infrastructure at the OPO and center
  level
• Adequate staffing OPO coordinators, surgeons,
  physicians, nursing
• Administrative support for all required hospital
  services to support transplantation
• Need the beds!
• Problem of pediatric units within large adult
  hospitals
• Need the insurance industry and state funded
  health care plans to support increased transplant
  numbers

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Importance of the New HRSA Collaborative

• Transplant Center Growth and Management
  Collaborative
• Specifically targeting the issue of finding
  solutions to provide the infrastructure needs to
  successfully and safely transplant an increased
  number of donors
• Getting into the same room all the players

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1st Pediatric Summit for Organ
Donation and Transplantation San Antonio
March 28,29th 2007
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Goal of the Summit

• To bring together the Pediatric Communities of
• Critical Care
• OPOs
• Transplant Physicians and Surgeons
• The Challenge
• End Death on the Pediatric Waiting List

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What was Accomplished?
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Pediatric Intensivists and OPOs Agenda for Change

• Improving communication with families
• Issues related to timely declaration of death
• Definition of brain death in children
• Understanding the transplant coordinators role
  in donor management and organ placement
• Understanding issues related to pediatric DCD

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Pediatric Intensivists and OPOs Agenda for Change

• Interaction with transplant surgeons about the
  importance of good donor management
• Role of early hormonal replacement therapy and
  the impact on graft function and survival
• Working with their medical examiners to help
  decrease and eliminate ME denials for organ
  donation
• Development of pediatric DCD guidelines and
  policies within their own institutions

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Pediatric Transplant PhysiciansSummary of
Workshops

• Innovative Thinking and Plans to
• Change allocation and distribution of pediatric
  donors
• Wider sharing of sized matched pediatric donors
  that do not compete with adult need for donors
  for liver, heart, intestine, lung (kidney?)
• Consider a new metric for sharing beyond
  geography ??cold ischemia time
• Educate for change in center/OPO practices
• Safe utilization of living donors esp kidney

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Pediatric Deaths on the Waiting ListWe can take
action now is the time

• Progress to date
• Changes in allocation and distribution of
  pediatric donors
• New allocation proposals for broader sharing of
  heart, lung, liver, intestine now circulating for
  public comment
• Hoped for approval June UNOS/OPTN Board meeting

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Children are the living messages We send to a
time We will not see. N.
Postman
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Pediatric Liver, Liver-Intestine, and Heart
Candidates 0-2 Number Removed For Death
2004-2005By Region
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Annual Death Rates per 1,000 Patient-Years at
Risk Intestine Waiting List