KIDNEY ADVISORY GROUPJune 2019

THE UK LIVING KIDNEY SHARING SCHEME: UPDATE AND IMPACT REPORT

1. BACKGROUNDThis paper provides a regular report to Kidney Advisory Group (KAG) on the UK Living

Kidney Sharing Schemes (UKLKSS). KAG has agreed to monitor the scheme and to

recommend changes and improvements as required.

This report includes the following updates:

Inclusion of non-directed altruistic donors (NDADs)

Non-simultaneous donor surgery

Requests for recipient prioritisation for transplantation

Centre-specific reports: non-proceeding and delayed transplants

Use of donor-recipient identifiable information in the UKLKSS

2. INCLUSION OF NON-DIRECTED ALTRUISTIC DONORS (NDADS) IN THE UKLKSS

Since November 2018, 42 NDADs have donated a kidney, 25 (59%) initiated an altruistic

donor chain and 17 donated directly to the UK Transplant List (UKTL). The number of

NDADs and the proportion initiating a chain increased in comparison with the previous 6

months (from 26 NDADs; 12 (46%) initiating a chain)

Of the 17 donors who donated directly to the list:

7 were offered to high priority recipients (long-waiting or Tiers A-C) prior to inclusion

in the matching run

8 were included in the matching run but were not matched to a paired recipient.

Between January 2018 to April 2019, 18 donors were not matched, 13 were blood

group A, 4 were blood group AB and 1 was group B.

2 had previously stated a donation preference directly to the list (assessment started

pre-January 2018). 1 donated to Tier D and 1 donated to Tier E recipients. No

requests for direct donation have been made since July.

25 NDADs were registered in the April matching run, 21 were matched in a chain, resulting

in 59 (61%) of the 97 identified transplants. 313 donor-recipient pairs and 287 recipients

were included in the matching run.

3. NON-SIMULTANOUES DONOR SURGERY AND RECIPIENT PRIORITISATION FOR TRANSPLANT

All planned non-simultaneous transplants must be notified in advance to Chair of KAG and

approval is required if more than 10 working days (2 weeks) between any two transplants is

planned in an altruistic donor chain or for a non-simultaneous paired/pooled exchange.

Notifications and requests for approval are made and the decision confirmed to the

requester via the Lead Nurse for Living Donation.

11 non-simultaneous exchanges completed from the October and January matching runs

resulting in 30 transplants (versus 5 exchanges and 13 transplants in previous 6 months).

The exchange types, interval between first and last transplant and the centres involved are

shown in Table 1.

2 long-altruistic donor chains from the October matching run did not complete, with the end

of chain transplant not proceeding:

In a non-simultaneous exchange, 1 end of chain paired-pooled donor withdrew after

his attached recipient (wife) received a successful transplant the previous week. The

recipient from the deceased donor waiting list did not receive a transplant and was not

eligible for prioritisation. Withdrawal was attributed to psychological reasons but the

donor’s decision not to proceed was also influenced by that fact that the recipient was on

the list and completing a chain. The centre has since changed the information that they

disclose to donor-recipient pairs about the destination of the kidney.

In a simultaneous exchange, 1 end of chain paired-pooled donor was found to have a

liver lesion during retrieval, so the chain did not complete. The attached recipient

(mother) was successfully transplanted. The recipient from the deceased donor waiting

list did not receive an end of chain transplant and was not eligible for prioritisation. The

liver lesion was subsequently found to be benign, but the donor declined to donate. The

recipient subsequently received a deceased donor transplant but had a complicated

post-operative course. The incident was reported and investigated via ODT on-line.

An end of chain paired-pooled donor from a long, non-simultaneous chain identified in

January 2018, has yet to donate (previously reported). His recipient was transplanted in

March 2018, but he has failed to commit to enter a matching run since, despite follow up by

the local nephrologist. This donation is unlikely to proceed.

Table 1. Completed non-simultaneous exchanges in the UKLKSS for April and July Matching runs*

Matching Run Exchange Type No. of Txs.

Days between 1st and last Tx.

Centres involved

Oct-18 Short Chain 2 54 Birmingham, St. George’s

Oct-18 Short Chain 2 8 Plymouth, Edinburgh, Cambridge

Oct-18 Short Chain 2 46 St George’s, Royal Free, Newcastle

Oct-18 Long Chain 3 8 Cambridge, Bristol, Portsmouth, Coventry

Oct-18 Long Chain 3 1 Sheffield, Belfast, Glasgow, Guy’s

Jan-19 Long Chain 3 9 Royal Free, Glasgow, Manchester, WLRTC

Jan-19 Long Chain 3 2 Leicester, Guy’s, Manchester

Jan-19 3-way 3 1 Belfast, Glasgow, Edinburgh

Jan-19 Long Chain 3 1 Liverpool, Edinburgh, Manchester, Belfast

Jan-19 Long Chain 3 7 Belfast, Manchester, Edinburgh, Plymouth

Jan-19 3-way 3 1 Edinburgh, Belfast

Total 11 exchanges 30

*Centres involved in any transplants that occurred after the first in the exchange in red.

The number of non-simultaneous exchanges has increased but is proportionate to the

overall increase in the number of identified transplants. The option for non-simultaneous

surgery is necessary to facilitate transplants, increase flexibility and reduce the risk of non-

proceeding exchanges due to scheduling delays. Where centres are managing multiple

exchanges, options for donor-recipient pairs to move to another centre within the same

exchange or to a neighbouring centre are rarely explored.

The risk of transplants not proceeding is low but recipients on the deceased donor waiting

list who are identified to complete the chain are potentially more at risk of missing out on a

transplant as they are not eligible for prioritisation. The interval between first and last

transplants only exceeds the 2-week window in exceptional circumstances and most are

requested to overcome logistical issues. Access to simultaneous theatre lists in all centres is

the most commonly cited reason. (also see Figure 4 re delayed transplants).

4. RECIPIENT PRIORITISATION FOR TRANSPLANT

From the October 2018 and January 2019 matching runs, there have been no requests for

recipient prioritisation for transplantation for a paired-pooled recipient and no occasions

where such a recipient has missed out on a transplant because of a partially completed

exchange.

2 recipients on the deceased donor waiting list missed out on a transplant when chains did

not complete from the last paired-pooled donor in an exchange (see above).

5. NON-PROCEEDING AND DELAYS TO TRANSPLANTS WITHIN THE UKLKSS

The aim is for 75% of identified transplants to proceed and within 8 weeks of the matching

run. In October 61% (52/85) and in January 60% (46/77) of identified transplants proceeded.

In October 38.5% of transplants were scheduled within the designated weeks of surgery but

improved to 91% for the January matching run.

2 remaining transplants have yet to proceed from the January matching run. Centre specific

data for non-proceeding and delayed transplants, are shown in Figures 1-4, including

number, proportion (%) and reasons for non-proceeding or delay by the centre that accepted

responsibility.

Self-reported reasons for non-proceeding transplants from the October to January matching

runs, collected by survey monkey or ODT on-line incident reporting are shown in Table 2. 27

self-reports/surveys were requested for non-proceeding transplants and 23 (85%) were

completed. Of these, 8 cases (35%) were considered preventable by the centre self-report

and 4 responses remain outstanding (see Table 3). In each of the reported cases, actions

were identified to address preventable ‘primary’ causes.

Table 2: Reasons for non-proceeding transplants, October 2018-January 2019 matching runs*

Preventable

Alt. Tx.

Clinical- Donor unsuitable

Clinical-Recipient unsuitable

Donor withdrew

Recipient withdrew

Immunological

Total

No 0 8 7 2 1 5 23

Yes 0 3 1 1 0 3 8

*reported cases

Table 3: Preventable causes for non-proceeding transplants

Cause Immunological Donor Unsuitable or

withdrew

Recipient Unsuitable or withdrew

Incomplete/inaccurate registration information

2 2 -

Further investigation or clarification needed in complex cases

- 1 -

Recipient management or monitoring lapsed or out of date

1 - 1

Recipient centre requested further testing

- 1 -

40% of identified transplants did not proceed in the last 6 months (aim is for < 25%). Non-

proceeding transplants impacted on 16 exchanges in October 2018 and on 11 in January

2019, causing collapse or default to an embedded exchange with fewer patients

transplanted. There is variation across centres but all centres have been affected.

Confidence in the UK-wide scheme is dependent on reducing the number of non-proceeding

transplants across all centres.

50% of preventable non-proceeding transplants are attributed to donor-recipient registration

and the completeness and accuracy of information provided, including recipient preferences

for age and HLA matching, up to date screening for unacceptable antigens and donor

complexity/special considerations.

Registrations for the April 2019 matching run showed that 67% (58/86) of donor registrations

required confirmation or clarification and every centre that submitted a registration provided

incomplete or incorrect information on at least one occasion (see Table 4). Of these:

43% (25/58) were due to incorrect information submitted, of which 15/25 (60%) related to

incompatibility between donor and recipient and 10/25 (40%) to blood group, HLA type

and match grade preferences, relationship and donor demographic details

34% (20/58) related to registration of donor complexity/special considerations

In 12% (7/58) of cases, recipients were not registered with ODT

Table 4: Errors in Donor Registrations received for April 2019 matching run by centre

Centre Total number of donor registrations

Total number of errors

Belfast 6 5

Birmingham - -

Bristol 4 2

Cambridge - -

Cardiff 2 4

Coventry 5 4

Glasgow 5 1

Guy’s 12 7

Hammersmith 10 7

Leeds 4 1

Leicester 1 2

Liverpool 3 3

Manchester 3 3

Newcastle 13 11

Nottingham - -

Oxford 9 1

Plymouth - -

Portsmouth 1 2

Royal London 4 3

St. Georges 4 2

Total 86 58

Figure 1: Number of non-proceeding transplants by centre, with classification

Figure 2: Proportion of non-proceeding transplants by centre, with classification

Figure 3: Number of matches in which each centre is involved

Figure 4: Delayed transplants, by centre

6. DONOR-RECIPIENT IDENITIFIABLE INFORMATION IN THE UKLKSS

A recent incident whereby the identity of a ‘matched’ donor was inadvertently disclosed to

the identified recipient in the UKLKSS from an HLA crossmatch request form, prompted a

review of identifiable information that is required for donors and recipients within anonymised

NDAD and UKLKSS exchanges.

All donors and recipients within the scheme have a right to privacy, balanced against the

need for donor, recipient and transplant safety at all stages of the pathway. The risk of

identifying the incorrect matched donor-recipient pair in an ‘exchange’ transplant situation is

increased in shared exchanges where donors and recipient information, samples and organs

are transferred between donating and transplanting centres.

The principles of maintaining confidentiality between all living donors and recipients, detailed

in the UK Guidelines for Living Donor Kidney Transplantation, 4th Edition at www.bts.org.uk,

apply. Within the UKLKSS and in exchanges between NDADs and recipients on the UK

Transplant List, extra vigilance is required to avoid inadvertent disclosure of personal

identifiable information between anonymous donors and recipients.

The following is proposed, subject to KAG approval, when dealing with ‘matched’ donors and

recipients prior to donation and transplantation:

Names of donors or recipients are not included in any ‘shared’ documentation that relates to

investigation requests, medical records or reports- where there is risk that such information

could be inadvertently disclosed to either the donor or recipient. I.e. donor name written on a

recipient request form or vice versa.

When requesting H&I crossmatching/HLA requests that involve the matched donor-recipient

pair, the following information can be used to complete the request form:

For any recipient H&I crossmatch blood sample:

Full recipient name, date of birth, hospital ID number

Recipient NHSBT/ODT ID

Exchange ID (if in the UKLKSS)

Donor NHSBT/ODT ID

Donor NHS number (or equivalent national ID number)

Donor date of birth

For any donor H&I crossmatch blood sample:

Full donor name, date of birth, hospital ID number

Donor NHSBT/ODT ID

Donor NHS number (or equivalent national ID number)

Exchange ID (if in the UKLKSS)

Recipient NHSBT/ODT ID

Recipient date of birth

For H&I crossmatch reports (or similar), complete with:

The recipient name, date of birth, hospital ID number

Donor NHSBT/ODT ID

Donor NHS number (or equivalent national ID number)

Exchange ID (if in the UKLKSS)

Donor date of birth

KAG is asked to approve this recommendation before dissemination to the wider community.

SUMMARY AND RECOMMENDATIONS

KAG members are asked to note the content of this paper, consider actions within local and

regional networks to address points 1-4 and approve recommendations (point 5).

1. Aim to reduce the risk of non-proceeding transplants within the UKLKSS and maintain

confidence in the scheme across all transplant and non-transplanting centres.

2. Use the centre specific data to inform local discussions about non-proceeding and

delayed transplants in the UKLKSS and consider actions to address these.

3. Improve the completeness and accuracy of donor-recipient registration information

submitted to the UKLKSS to reduce preventable causes of non-proceeding transplants.

4. Non-simultaneous surgery with short intervals between first and last transplants is

relatively low risk. Discussion with donor-recipient pairs about the completion of chains,

including impact on the recipient on the deceased donor list if they miss out on a

transplant, is important. Collaboration with other centres to accommodate multiple

transplants, as an alternative to non-simultaneous surgery, could be considered more

often.

5. Approve recommendations (section 6) to ensure that donor-recipient privacy is protected

on documentation relating to anonymous donor-recipient pairs in ‘shared’ exchanges.

This paper and the outcomes of the recommendations will be shared with the UK LKD

Network in the next quarterly update (June 2019).

Lisa Burnapp, Lead Nurse-Living DonationMatthew Robb, Senior StatisticianJune 2019