Access to transplant in the UK The ATTOM study

1. Access to transplant in the UKThe ATTOM study Dr Rommel Ravanan Rommel.ravanan@nbt.nhs.uk On behalf of ATTOM investigators

2. Access to transplant in the UK Unexplained between centre variation in access to the waiting list, time taken for activation and receipt of a transplant once activated* Patient and/or unit specific variables that explain such variation not clear

7. The questionnaire looked at various aspect of transplant assessment. We looked at organisation of assessment clinics and unit protocols. Additional Consultations and baseline investigations performed Any important aspect section addressed the issue of cardiovascular assessment. We also looked at serological investigations, gastrointestinal evaluation; exclusion criteria based on age and BMI and last but not the least the unit’s Re-evaluation policy once patients are on the waiting list.The questionnaire looked at various aspect of transplant assessment. We looked at organisation of assessment clinics and unit protocols. Additional Consultations and baseline investigations performed Any important aspect section addressed the issue of cardiovascular assessment. We also looked at serological investigations, gastrointestinal evaluation; exclusion criteria based on age and BMI and last but not the least the unit’s Re-evaluation policy once patients are on the waiting list.

8. The ATTOM group Cambridge Bristol Andrew Bradley Charlie Tomson Chris Watson Chris Dudley Ms Ruth Summers (NHS manager) Rommel Ravanan Edinburgh UKRR Gabriel Oniscu Terry Feest / Damian Fogarty John Forsythe SRR NHSBT Wendy Metcalfe Rachel Johnson Royal Holloway LSHTM Prof Clare Bradley (PROMs expertise) Prof John Cairns (Health economic expertise) Southampton University (Epidemiology & Qualitative research expertise) Prof Paul Roderick, Dr Gerry Leydon + Ethics & patients representatives

11. ATTOM - how Embedded research nurses in 20 transplant centres Nurses record clinical phenotype from case notes/IT systems Administer/collect PROMs questionnaires Parallel qualitative assessment of centre practice patterns Outcome data by linking ATTOM database to registries

12. ATTOM – help needed Local PIs for R&D approvals (~May 2011) Facilitate local nurse recruitment (~August/September 2011) Data clarifications (if needed) for nurses Participate in semi-structured interviews / answer questionnaires (for the qualitative work stream)

13. ATTOM - output What’s in it for the units? Accurate benchmarking of unit level co-morbidity burden / transplant related resource availability Share ‘best practice’ ‘Free’ near complete data returns to UKRR/SRR NIHR portfolio income to your NHS trust What’s in it for the renal community in the UK? ‘Real world’ UK clinical evidence base to drive UK clinical policy Survival probability model to improve equity of access Understanding PROMs in renal patients Permanent complete dataset for many analyses by UKRR/SRR

14. Contact for information Rommel.ravanan@nbt.nhs.uk Charlie.tomson@nbt.nhs.uk