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

• utcomes 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

• f 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 provision 59.5% (69/116) 68.1% (79/116) 77.6% (90/116) Designated GI ward? 77.1% (135/175) 90.3% (158/175) Beds per toilet

• n the ward?

Median: 4.2 (3.2 : 6.0) Median: 4.0 (3.0 : 5.7) Provide written info on contact person for relapse? 69% (120/174) 80.5% (140/174)

Clinical audit –Ulcerative colitis

2006 2008 2010 Repeat admission within 30 days 51.1% 45.3% 33.6% Seen by IBD nurse during admission 23.7% 30.0% 44.9% 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 UC 31.1% 39.0% 40.0% Elective laparoscopic surgery 10.2% 16.0% 43.7% Bone protection agents 41.1% 55.6% 69.6%

One area of care resistant to change

2008 2010 Surgery for IBD Pouch surgery done

• n site

81% 80% Pouch operations in last 12 months? Median 3 (1:7) Median 3 (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

• rganisation 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

• f 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

Crohn‟ s and Colitis UK Focus Groups – 2005 What is important to patients

 Key messages from patients were  the importance of the attitudes of professional staff  their genuine understanding of IBD  their respect and support for patients’ making choices about their care  IBD being seen in the context of the whole life of the patient – not just a medical focus  Clinical effectiveness and safety were hardly mentioned

Systematic Patient Reporting & Review of data.

 Standards should include systems for capturing patient

• utcomes and experience

 IBD specific PROMs such as CLIQ  IBD specific PREMs such as IBD-QUOTE  Inpatient surveys  Services such as Patient Opinion  Patient engagement opportunities

 These should be reviewed by the IBD Team regularly and as part of developing an annual plan for the IBD Service  Perhaps an Annual Report to Management and the patients

Incorporating patients views into Standards

 Patients’ and their evidence-based priorities should be included alongside clinical issues in the development of Standards.  E.g. Evidence suggests the standards should include:

 Monitoring time to initial diagnosis  Quick access to specialist care  Principles underpinning consultations

 Communication – listening to the patient’s priorities  Collaborative decision-making

 Provision of information and education about IBD  Informed choice where possible (follow-up systems?)  Support with practical and psychological impact of IBD

It’s not just about setting standards