Setting standards of care Mr Richard Driscoll, London, UK - PowerPoint PPT Presentation

Oxford Inflammatory Bowel Disease MasterClass Setting standards of care Mr Richard Driscoll, London, UK

Disclosures  Advisory meetings or speaking engagements:  AbbVie Pharmaceuticals, Dr Falk Pharma, Ferring Pharmaceuticals, Pharmacosmos, Vifor Pharma, Warner Chilcott  Current paid IBD projects:  IBD Registry – British Society of Gastroenterology  IBD2020 Survey and Meeting – AbbVie Pharmaceuticals

Outline  Quality Care  Examples of Quality Standards for IBD  USA – AGA  USA – Improve Care Now  UK – The IBD Standards and Audit  Outcomes, Processes, Structure and Organisation  Summary 1  Patient Experience and Expectations  Summary 2

Delivering high quality care for people who have IBD  The key components of high quality care (from Lord Darzi’s definition adopted by NHS England)  Clinical effectiveness  Safety  Patient Experience

AGA – Inflammatory Bowel Disease Measures IBD1 – Patient managed with corticosteroid therapy IBD2 – Pharmacologic management: corticosteroid-sparing therapies IBD3 – Influenza vaccination in immunosuppressive therapy IBD4 – Tuberculosis screening in immunosupressive therapy IBD5 – Hepatitis B risk assessment in immunosuppressive therapy IBD6 – Hepatitis C risk assessment in immunosuppressive therapy IBD7 – Varicella/HZV vaccination in immunosuppressive therapy IBD8 – Live vaccine avoidance counselling in immunosuppressive therapy IBD9 – Assessment of bone loss risk due to corticosteroid therapy IBD10 – Medication-related adverse events in IBD IBD11 – Tobacco status assessment and cessation counselling IBD12 - Colon cancer surveillance in patients with IBD

Implementing the AGA Standards  To be effective as a Quality Improvement system  Standards have to be measurable  Recording method has to be practical  Ideally, progress leads to reward (reputational or financial)  The AGA Standards and Quality Measures are designed to work with the physician reimbursement programme  All but one are Process measures Is this a bad thing?

ImproveNow – Model Care System (Paediatric)  Clinical Remission  Remission rate  Steroid-free remission rate  Sustained remission rate  % of patients off prednisone  Adequate Nutrition and Growth  % of patients with satisfactory nutritional status  % of patients at risk of nutritional failure  % of patients in nutritional failure  % of patients with satisfactory growth status  % of patients at risk of growth failure  % of patients in growth failure

ImproveNow – (2)  Model of Care Criteria (observance of agreed guidelines)  Individual criteria  1 = review frequency  4 = best practice with immunosuppressives  3 = best practice with infliximab  E.g. % of visits starting treatment with a thiopurine who have had measurement of TPMT  E.g. % of visits at which patient had initiation dose of infliximab and had had prior PPD or chest-X-ray

Which types of Standards and Measures are useful? While outcomes are ultimately an important measure on which to judge quality, good outcomes can only be achieved if appropriate structures and processes are in place. This means that process measures are very important – especially in the context of managing long-term conditions and continuity of care. Process measures can be useful to drive service improvements at practice level. Donabedian

Process and outcome are both important  Steroids - process  % of the total number of patients on steroids >3 months in the last 12 months  Steroids - outcome  % of the total number of patients in steroid-free remission

Standards and quality improvement in the UK  Published Standards (The IBD Standards)  Audit of Structure and Organisation  Presumptive standards derived from clinical guidelines  Audit of inpatient and outpatient care of 40 patients  Both linked to a Quality Improvement Programme designed to help IBD units improve their service • Participation is voluntary , but close to 90% • The Audit has been government-funded for 5 years • Selected data about individual hospital performance is now publicly available on a government website. • Demonstrable quality improvement over an 8-year period

Some suggested quality measures in the UK  Referral:  Referral by GP within 3 months from first consultation  Secondary care providers see referred patients in < 4 weeks  Clinical management:  % of the total number of patients on steroids >3 months in the last 12 months  % of the total number of patients in steroid-free remission  % of admitted patients receiving VTE prophylaxis  % of admitted patients who have stool tests  Proportion of cancers developing in colitis patients that are Duke’s B and C (measures failure of surveillance)

Structure and Organisation Standards & Audit  The IBD Standards define the principles of what service and care should be provided to IBD patients under six headings:  Clinical care  Local delivery of care  Maintaining a patient-centred service  Patient education and support  Information technology and audit  Evidence-based practice and research  The Standards do not define a particular structure for IBD Services; they define what the Service should deliver and the minimum staffing resource necessary for good care.

Evaluation of the impact of the IBD Standards  Before the Standards:  IBD was often mixed in with other gastroenterology care except for the more specialist centres  Gastroenterology was not a focus for any government priorities, targets and funding except for endoscopy  There were clinical guidelines but no reference point to say how IBD care should be resourced or organised 1. Defining IBD care as a distinct service was a valuable step 2. UK-wide professional and patient endorsement for the Standards was very powerful and encouraged consistency 3. But it is the national Audit that has often driven improvement

Example results – Organisational audit 2006 2008 2010 Some IBD Nurse 59.5% 68.1% 77.6% provision (69/116) (79/116) (90/116) 77.1% 90.3% Designated (135/175) (158/175) GI ward? Median: 4.2 Median: 4.0 Beds per toilet (3.2 : 6.0) (3.0 : 5.7) on the ward? Provide 69% 80.5% written info on (120/174) (140/174) contact person for relapse?

Clinical audit –Ulcerative colitis 2006 2008 2010 Repeat admission 51.1% 45.3% 33.6% within 30 days Seen by IBD nurse during 23.7% 30.0% 44.9% admission Stool samples sent 65.9% 73.9% 80.8% Prophylactic heparin given 54.3% 74.0% 87.1%

Clinical audit – Ulcerative colitis 2006 2008 2010 Rescue therapy for acute severe 31.1% 39.0% 40.0% UC Elective laparoscopic 10.2% 16.0% 43.7% surgery Bone protection 41.1% 55.6% 69.6% agents

One area of care resistant to change 2008 2010 Surgery for IBD Pouch surgery done 81% 80% on site Pouch operations in Median 3 Median 3 last 12 months? (1:7) (1:6) •

What standard should be set for pouch surgery? • There is evidence to show that outcomes are better in centres doing more operations • Colorectal surgeons want to continue to do pouches for the technical interest • Possibly the issue is as much to do with post-surgery ward care as the technical competence of the surgeon • Should patients be told this information and given a choice? What standard should we set?

Summary  Probably broad agreement on relevant specific clinical standards in respect of outcomes and process  Main limitation is the data that can be collected  Retrospective audit of sample patients has some value  A prospective data collection and reporting system is the ideal. It is feasible but demanding of resource (financial and staff time).  Simply defining standards has limited value  This is enhanced by formal professional and patient organisation consensus and endorsement  Auditing and reporting drives compliance to the standards  Ideally part of a whole Quality Improvement Programme

Oxford Inflammatory Bowel Disease MasterClass The patient experience component of quality

PROMs and PREMs?  These seem to be missing from the USA systems  No formal measures for either patient-reported outcomes or feedback on patient experience  In the UK IBD Audit Round 3 a patient experience questionnaire was sent by post to every patient whose notes were audited. Replies were anonymous and returned direct to the Audit team.  About 33% replied  Numbers were too few to reflect care at anyone centre, but they provided an overall view.  The questionnaire was matched to a national inpatient survey.

What we learned about Inpatient care – top issues for those rating care as poor or fair 1. Quality of nursing care 2. Food – poor or unsuitable 3. Cleanliness – bed area and toilets 4. Respect and Dignity 5. Consistency and Coordination of treatment 6. Communication 7. Pain 8. Toilets - access

UK IBD Audit - Inpatient Experience

Systematic Review of Specialist Nursing Role in IBD: London South Bank University L Woods (2006)  Specialist knowledge seen as important, but most emphasis given to traditional nursing values and qualities:  Empathy  Support  Continuity  Closeness of contact  Time  Individualism  Advocacy  Holistic approach