Guidelines

UKMF Guidelines Group Annual Report 2008

Jenny Bird
Consultant Haematologist, Bristol
Chair, Guidelines Committee, UK Myeloma Forum
Member BCSH haematology-oncology task force

Introduction

What is a clinical guideline?

Clinical guidelines are documents with the broad aim of guiding decision-making in
diagnosis, management, and treatment in specific areas of healthcare. They are based on an examination of current evidence within the paradigm of evidence-based medicine. The use of guidelines by healthcare providers can be an effective way of achieving several objectives such as reducing variation in practice and improving the overall quality of care. They usually contain a summary and evaluation of the best evidence and most current data on prevention, diagnosis, prognosis, therapy and in some cases cost-effectiveness. They aim to define the most important questions related to clinical practice and to identify key decision points. This may result in either summarised consensus statements or recommendations and/or development of treatment algorithms.

The guideline-based approach originated in the United States in the 1990s. They are usually produced at national/international levels by medical associations or government bodies and are frequently adapted for local use by local healthcare providers.

What are they for and who uses them?

They are mainly written to aid health care professionals in caring for patients with myeloma and fulfil a number of roles

Educational resource
Standardisation and improvement in quality of care eg. attempt to reduce postcode prescribing such as use of thalidomide in induction
To aid development of local guidelines which in turn can inform negotiation with local fund-holders to access drugs
Support service development eg. myeloma clinics
Provide parameters to audit against

Guidelines can also be directly and indirectly informative to patients, particularly in the areas of what is the role of guidelines for patients?

• Education and assistance in decision- making and reassurance that treatment decisions/choices are appropriate
• Use in directing patient information supplied by Myeloma UK. They are also used as a resource for myeloma info-line and for development of material used in the MAGIC Nursing Education Programme
• Power to lobby health care providers for access to expensive and unfunded drugs

What are the difficulties associated with guideline writing?

Assessing and grading levels of evidence
Keeping guidelines relevant and updated
Whether to update or re-write
Where to publish - Internet or relevant medical journal
How far to take into account the issues of access, NICE judgements, cost-effectiveness, licensed indications
Lack of data in many areas eg. sequencing of therapies
The issue of assessing cost-effectiveness
Inadequate resources to undertake detailed analysis
Duplication and lack of consistency between our guidelines and others

Why are our guidelines unique?

We believe that the UKMF/BCSH myeloma and related guidelines are unique because of the close collaboration of the group with Myeloma UK who provide financial support for their development and practical input to guideline development – keeping them ‘patient-focussed’

Are they useful?

We hope that they are and believe them to be so but would welcome views from any individuals about how they could be further improved. We know that they are regularly used by Myeloma UK for education/ lobbying purposes but also have some more objective evidence that they are being ‘used’. In 2006 the UK-Nordic myeloma guidelines topped the chart of most downloaded guideline from the BCSH website. In addition the hit rate to the BCSH website has increased from an average of 6,500 visits/month in 2003 to ~17,500 visits/ month in 2007 and continues to increase. Increasingly acknowledged and used by commissioners/NICE and other organisations involved in allocation of health care resources.

UKMF guidelines group 2000 to present – what have we done?

Guidelines published to date

Guidelines on diagnosis and management of multiple myeloma 2001
Updated recommendations for the use of bisphosphonates in myeloma 2003
Guidelines on diagnosis and management of AL amyloidosis 2004
Guidelines on diagnosis and management of solitary plasmacytoma of bone and solitary extramedullary plasmacytoma 2004
Guidelines for the use of imaging in the management of myeloma 2006
UKMF/NMSG Guidelines for the investigation of newly detected M-proteins and the management of MGUS. Submitted for publication 2008

Published updated recommendations/ guideline revisions

UK Myeloma Forum and the Nordic Myeloma Study Group: Guidelines on diagnosis and management of multiple myeloma 2005

Other publications

Thalidomide in multiple myeloma: Current status and future prospects
Position Statement on the use of Bortezomib in Multiple Myeloma

Guidelines group progress 2007-08

In 2007 the Guidelines subcommittee had a very active year establishing a joint working party with the Nordic myeloma study group on the production of the MGUS guideline. This has now been submitted to the BCSH sounding board and will be published soon. Earlier this year preliminary meetings were held to address the urgent need to update the ‘Guidelines on diagnosis and management of multiple myeloma’ in light of the many advances there have been, particularly in the area of therapy. Small subgroups were set up to tackle specific areas of the guideline and a final draft is close to completion. An ambitious target of publication by early 2009 has been set.

Further subgroups have been working on an update to the plasmacytoma guideline which has now completed and will be submitted for publication shortly. A revision of the ‘Guidelines on the diagnosis and management of AL amyloidosis’ are also underway with the aim of publication in 2009. Finally, a position statement on the use of lenalidomide in multiple myeloma was published by a subgroup of the UKMF Executive. These are designed to guide clinicians in use of newer agents with which they may be less familiar, to summarise the evidence regarding efficacy and practical advice regarding management of side-effects etc

In addition to the wok of the group, a closer relationship with the Haemato-oncology task force of the British Committee for Standards in Haematology (BCSH) has been established. The Chair of UKMF Guidelines Committee sits on this task force, providing better communication between the 2 groups and more robust procedures for the commissioning of guidelines involving all relevant stakeholders and broad review of draft guidelines by a 'sounding board' made of a large group of UK haematologists.

The future

There are many developments that we would like to make including

Adding feedback form to website to assess usefulness of guidelines
Do more to help health care professionals in the form of
- Summary documents
- Development of audit tools
Versions for primary care/other specialised health care professionals
Inform development of new clinical trials to answer specific questions eg.

Use of antibiotics
Duration of bisphosphonate therapy

Jenny Bird
Chair, Guidelines Group