Quality Improvement Toolkit

Public Health Wales / Coeliac Disease
Coeliac Disease
Quality improvement toolkit
Author:Primary Care Quality and Information Service
Date: January 2011 / Version:1
Status:Final
Intended audience: Public (Internet) / NHS Wales (Intranet) / PHW (Intranet)
The former Public Health Wales Primary Care Quality Team, now incorporated within the Primary and Community Care Development and Innovation Hub, developed a series of quality improvement toolkits to assist practices in collating and reviewing information. From information received, practices still find these toolkits useful, therefore they will remain on this webpage for your ease of reference. Please note, however, that the date of publication is clearly stated in the toolkit and that the evidence within may have changed since publication
Purpose and summary of document:
This document is for use by general practices to ensure that the delivery of service to people with Coeliac Disease is evidence based and in line with best practice. It will support practices to review and improve where necessary, the appropriate recording of information regarding patients with this condition, which will support the provision of high quality clinical services
The audit toolkit will provide the user with a summary of the current evidence directing the safe provision of service, and a schedule of patient review criteria to compare current practice against those evidence based criteria.
Also included is a practice review section designed to encourage a whole practice response to the audit findings and an evaluation of the quality and usefulness of the audit itself.
Publication / distribution:

Publication in PHW Document Database (Primary Care Quality and Information Service)
Link from PHW e-Bulletin

Acknowledgements

The Primary Care Quality & Information Service is grateful to the following people for their valuable contribution to the development of this quality improvement tool.

Dr Paul Myres – Wrexham GP, Chairman Primary Care Quality Forum

Dr Geoff Tinkler, Chairman PCQIS Advisory Group

Dr Chris John – Carmarthen GP, Medical Adviser PCQIS (Carmarthen office)

Professor Jonathan Richards – Merthyr GP, Medical Adviser PCQIS (Cardiff office)

Dr Alan Stevenson – Pontadawe GP

Sister Janet Keauffling – Practice Nurse, Swansea

Mrs Ann Burtonwood – Business Manager Portway Surgery, Porthcawl

Mr Kevin Smith – Head of Medicines Management, Powys Health Board

Mr Ian Jones – Optometrist

Ms Nicola Gravett – Head of Clinical GovernanceABMUniversity Local Health Board

Preface

Quality improvement toolkits

The Primary Care Quality and Information Service (PCQIS) have developed quality improvement toolkits to assist practices in collating and auditing information.

The quality improvement toolkits are evidence based. They should be seen as good practice and cover areas that some or even all practices may not be recording at this stage. It is not expected that all the criteria within the audits will be achieved in year one therefore the PCQIS suggests that the toolkits should be used to aid development within the practice.

It is recommended that in year one the practice consider recording this information prospectively using the data entry criteria and suggested read codes provided, so that these criteria can be successfully audited and improvements highlighted over time.

You can access other quality improvement toolkits that support enhanced services and National Service Frameworks from the Public Health Wales (PHW) website:

Intranet

Internet

If you have any queries regarding this document please contact:

Laura Jones, Team Lead - PCQIS

Tel: 01792 607311 / Email:

Contents

Page

Acknowledgements2

Preface2

Contents3

1Setting the Scene4

2Background4

3Aim4

4Objectives4

5Methodology5

6Patient Inclusions / Exclusions5

7Standards5

8Audit Criteria6

9Data Summary 7
10Practice Review 8

References8

Material contained in this document may be reproduced without prior permission

provided it is done so accurately and is not used in a misleading context.

Acknowledgement to the Public Health Wales to be stated.

1Setting the Scene
A report based audit of all practice patients with a diagnosis of Coeliac Disease (CD) or patients with suspected Coeliac Disease without a diagnosis. The results will give practices and health professionals concerned in the delivery of care to patients with CD the opportunity to reflect on the quality of care provided. The toolkit was developed following approaches from prescribing advisers and the NICE commissioning group in North East Wales who recognised the potential for reviewing the quality of care afforded to patients with Coeliac Disease, where the condition has been diagnosed or suspected. This toolkit will be made available to general practices throughout Wales via the PCQIS website facility.

2Background

This quality improvement toolkit will assist practices to review the processes used to identify patients suspected of having Coeliac Disease, and also to assess the ongoing treatment and advice offered to patients with a confirmed diagnosis. The evidence included draws significantly on Clinical Guideline Number 86 produced by NICE

Coeliac disease is a state of heightened immunological response to ingested gluten in genetically susceptible people. Gluten is a protein that is present in wheat, barley and rye. Historically, Coeliac Disease was believed to be uncommon; however, population-based studies have identified that it is more common than previously thought.

Coeliac Disease has traditionally been associated with mainly gastrointestinal symptoms (diarrhoea, abdominal pain, bloating, constipation and indigestion), because chronic inflammationof the small intestine is a feature of the immune response to gluten. However, non-gastrointestinal features of Coeliac Disease have been increasingly recognised in people presenting with the disease. Some people with Coeliac Disease have no obvious symptoms.

Coeliac disease is more prevalent in people with autoimmune conditions (Type 1 Diabetes or autoimmune thyroid disease), and in first degree relatives of people with Coeliac Disease. It can be diagnosed at any age (e.g. after introduction of gluten-containing foods to the infant weaning diet), and presents in children and adults.

Due to the potential for mis-diagnosis Coeliac Disease is often unrecognised. As a result, people may present frequently, and with a range of symptoms before diagnosis isconfirmed. Delayed diagnosis is a concern where the symptoms of Coeliac Disease remain untreated, and because of the possible long-term effects of undiagnosed Coeliac Disease (see 6.2 and 6.3 below and Appendix A).

In additionthere areconcernsregarding which of the serological tests are most suitable for use in the diagnostic process for Coeliac Disease. A biopsy of the small intestine is currently used as the reference standard for diagnosis - although there is ongoing debate about the future possibility of diagnosis without the need for a biopsy1.

3Aim

To review the process of diagnostic investigation for patients suspected of having Coeliac Disease, and the subsequent treatment and advice offered to patients with a confirmed diagnosis of Coeliac Disease.

4Objectives

To ensure that all patients with signs and symptoms consistent with Coeliac Diseaseare appropriately investigated (see 6.3 and Appendix A)

To ensure all patients with a diagnosis of Coeliac Disease receive appropriate advice and management

5. Methodology

It is advised that the practice hold a Primary Health Care Team (PHCT) meeting to discuss the project from the outset. Items to agree include;

A start date for the audit, and who will be involved and their role/s

A period of data collection – this could be either retrospective or prospective. Compile a list of patients, based on the inclusion and exclusion criteria(below)

Collect relevant data (see criteria) and complete the Data collection sheet & Summary sheet. This sets out the criteria taken from evidence based practice

Complete the Practice review form to reflect on the findings of the audit and implement the necessary changes to ensure quality improvement.

It is suggested that the practice re-audit annually to ensure that any changes that the practice consider to be necessary are having a positive effect on patient care

6. Patient Inclusions / Exclusions

6.1Patients to be included:

All patients with a confirmed diagnosis of Coeliac Disease
All patients without a confirmed diagnosis of Coeliac Disease but who have attended the practice and for whom one or more of the following clinical features (see6.2 and 6.3) has been subsequently recorded;

6.2Symptoms that could indicate Coeliac Disease

Chronic or intermittent diarrhoea

Failure to thrive or faltering growth (in children) – consider referral to Paediatrics
Persistent / unexplained gastrointestinal symptoms including nausea and vomiting
Prolonged fatigue i.e. ‘tired all the time’
Recurrent abdominal pain, cramping or distension
Sudden or unexplained weight loss
Unexplained Low Ferritin / Folate / B12
Otherunspecified anaemia

6.3 Associated conditions:

Otherwise unexplained Microcytic / Macrocytic Anaemia
Autoimmune thyroid disease
Autoimmune parathyroiditis
Dermatitis herpetiformis
Irritable Bowel Syndrome
Type 1 diabetes
Having First-degree relatives (parents, siblings or children) with Coeliac Disease.

6.4Patients to be excluded:

Any infant patients (<1year), in whom gluten has yet to be introduced into theirdiet.

7Standards

Standards (where appropriate) are to be set by the practice. Once a performance baseline has been established the practice should – through review of their findings and by implementing subsequent improvements that may have been identified - seek to improve on the levels of achievement attained. Such improvements will be verified through continuous audit activity

8Audit Criteria

APatientsin receipt of Gluten Free Foodson prescription are identified

BPatients in A have a diagnosis of CoeliacDisease.

C Patients in B have a record of their diagnosis being confirmed by intestinal biopsy

D Patients in B have received an Annual Review within the last 12 months (see Appendix C)

EPatients without a diagnosis, but who have one of the associated conditions that could indicate the presence of Coeliac Disease (see tables 6.2 and6.3) are identified

FPatients in E have been offered a test for Coeliac Disease or referred back to a specialist for further assessment

GPatients in A are being prescribed appropriatequantities of Gluten Free Foods

(see guidance at Appendix H)Suggest review a sample of 20 patients

Author
Primary Care Quality & Information Service / Date:
Jan 2011 / Status Final
Coeliac Disease Version 1 / Page 1 / Intended Audience: Public (internet) / NHS / PHW / PCQIS
Public Health Wales / Coeliac Disease

9Data Summary

Start date of Audit ______Completion Date ______

Number of Patients in Practice with a diagnosis of Coeliac Disease ______

Criteria / Relevant READ Codes
(please see Appendix F for
full list of READ Codes) / Standard / Total / %
A / Patients in receipt of Gluten Free Foods on prescription / id1..%
B / Patients in A have a diagnosis of Coeliac Disease / J690.%
C / Patients in B have a record of their diagnosis being confirmed by intestinal biopsy / 761F0
D / Patients in B have received an Gastro-intestinal Review in the last 12 months / 664..%, 22A..%, 424..%, 42U4., 423.. 42V.., 42R..%, 44M4.%, 44F..%
E / Patients without a diagnosis, but who have one of the associated conditions that could indicate the presence of Coeliac Disease (see tables 6.2 and 6.3) / J43z., 19F2., 22I5., 198..%, 199..%, J162.%, 168..%, F286.%, 19A..%, R090.%, 196..%, R0904, R032., 42R41, 42U..%, 145..%, D0...%, C05.., C1210, M140., C10E%, ZV189,
F / Patients in E have been offered a test for Coeliac Disease or referred back to a specialist for further assessment / 43ad., 68W1., 68W3., 68W4., 8H48., 8H45., 761F0
G / Patients in A are being prescribed appropriate quantities of Gluten Free Foods (see Appendix H) Suggest review a sample of 20 patients / id1..%

Comment

10Practice review

A. What lessons did the practice discover from carrying out this audit?

B. What changes, if any have the practice agreed to implement as a result of this audit?

C. What support would enable the practice to enhance the service it provides to patients?

This audit was compiled by;

Name(s)______

Signature(s)______

Practice (name and address)______

______

Date______

Appendices (Hyperlink to separate document)

ATESTING – SUMMARY OF NICE GUIDANCE(Clinical Guideline 86)

BCare Pathway (NICE)

CDietary Advice / Ongoing Management of Patients with Coeliac Disease (Patient UK)

DAssociated Conditions

EFurther Information

FREAD Codes

References

1NICE clinical guideline 86; Coeliac Disease: Recognition and assessment of Coeliac Disease (May 2009)

Author
Primary Care Quality & Information Service / Date:
Jan 2011 / Status Final
Coeliac Disease Version 1 / Page 1 / Intended Audience: Public (internet) / NHS / PHW / PCQIS