Information, Quality and Values Donal O’Donoghue National Clinical Director for Kidney Care Working for better kidney care UKRR and NHS Kidney Care Information Day Tuesday 9th October 2012

“Quality is the only organising principle of the NHS” Sustainable Patient Centred Equitable Efficient Effective Timely Safe

CCG

4 Investigation QS1: Identification QS2: Specialist referral Progression and complications QS4: Cardiovascular risk QS5: Blood pressure control QS6: Progression QS7: Acute illness QS8: Anaemia treatment Preparing for renal replacement therapy QS9: Preparing for renal replacement therapy QS10: Psychosocial support Transplantation QS11: Transplantation – pre-emptive QS12: Transplantation – on dialysis Dialysis QS13: Dialysis access QS14: Best possible dialysis QS15: Patient transport End of life care NICE CKD Quality Standard 2011

Quality Standards the evidence base NICE Quality Standards Based on evidence of best practice and an assessment of current care Summarised evidence- based material: accredited guidance Primary research evidence is synthesised into other products – guidance, audit and service models NICE Quality Standards Guidance and related products Research and audit evidence

Quality Standards A Quality Standard is a set of specific, concise statements, based on guidance, that act as markers of high-quality, clinical and cost-effective patient care across a pathway or clinical area. There is a maximum of 15 in each set. They are accompanied by quality measures. UnsafeSubstandardAdequateGoodExcellent NICE quality standards Standard of services Proportion of services Registration requirements

Value in Health Care (Porter M: NEJM 363:2477, 2010, Lee: NEJM:363:2481, 2010) “Measurement of value is challenging…the critical first step is measurement. Provider organisations need to capture data on outcomes that matter to patients and carers.”

Waste Value Waste

NHS Atlas of Variation in Healthcare for People with Kidney Disease Renal Association Conference 2012 The Sage, Gateshead Thursday 14 th June 2012 To download the NHS Atlas of Variation in Healthcare for People with Kidney Disease, visit the Right Care website:

The Dartmouth Atlas of Healthcare, 1996

To download the NHS Atlas of Variation in Healthcare for People with Kidney Disease, visit the Right Care website:

To download the NHS Atlas of Variation in Healthcare for People with Kidney Disease, visit the Right Care website:

Health Survey England 2011

2010/11 CKD prevalence OE ratio Observed based on QOF 2010/11 prevalence Expected derived from HSE age and Gender prevalence estimates, applied to 2009 Mid year population estimates (ONS)

Prevalence of CKD:

Vascular Disease – One Event Leads to Another (REACH Registry) Original Event = Stroke MI Risk 2-3 x greater risk Stroke Risk 9 x greater risk Original Condition = PAD MI Risk 4 x greater risk Stroke Risk 2-3 x greater risk Original Event = MI MI Risk 5-7 x greater risk Stroke Risk 3-4 x greater risk Diabetes (type 2) Because of the increased risk associated with diabetes, it should be considered a cardiovascular risk equivalent to a non-diabetic patient with previous MI CKD MI Risk 2 x greater risk Stroke risk Up 50%

Trends in Late Referral by Year Late referral defined as ≤3 months before RRT start

Prevalent patients by treatment Demand for renal replacement therapy continues to increase RRT incident rates but incident rates appear to be reaching a plateau or falling

Percent distribution at initiation by eGFR The mean eGFR at initiation of RRT in 2009 in the UK was 8.6 The mean eGFR at initiation of RRT in 2008 in the US was 11.1 The mean eGFR at initiation of RRT is rising

Kidney transplants in the UK

Patient Involvement: a Paradigm Shift Old method New Method

Renal Patient View “ Grasping what the figures meant enabled us to formulate questions for consultations, to understand explanations and in some cases, since we were the first to see the figures in context, to alert consultants to changes as soon as they appeared. There is a sense that the relationship between the patient and the doctor becomes more collaborative as soon as the patient understands the figures before the consultation takes place… Because of the service, we feel we benefit more from consultations.”

Shared Decision Making The care team communicates to the patient personalised information about the options, outcomes, probabilities and scientific uncertainties of the various treatments. “is a fundamental part of care planning and promotes the best choice in what otherwise can be a complex and overwhelming situation.” The patient communicates his or her values and relative importance he or she places on the potential benefits and harms.

Patient Decision Aids