Guidelines
Other guidelines in preparation
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 Ð keeping them Ôpatient-focussedÕ
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 ÔusedÕ. 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 Ð 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 2008-09
The joint project with the Nordic myeloma study group (NMSG) on the production of the MGUS guideline has been completed and the guideline loaded onto the BCSH website. This has now been accepted for publication in the British Journal of Haematology and is in press. Similarly, the update to the plasmacytoma guideline has now been completed and submitted for publication. It is also available on the BCSH website.
Work on the new ‘Guidelines on diagnosis and management of multiple myeloma’ is making good progress and a final draft is close to completion. Importantly, a decision has been made to split future guidelines regarding investigation and treatment of myeloma into 2 independent documents. The second of these is entitled ‘Guidelines for the symptomatic and supportive care of patients with myeloma.’ and will be an important advance. The main reason for this change is the rather unwieldy nature and length of the combined document and also recognition that, in light of the many advances there have been in the area of therapy, the treatment section may need more frequent updating than the supportive care document. An ambitious target of publication of both documents by Autumn 2009 has been set.
A revision of the ‘Guidelines on the diagnosis and management of AL amyloidosis’ is also underway with the aim of publication in 2009. A final draft is expected from Julian Gillmore by the end of this week.
The future
Plans for future work of the Guidelines group include:
- Development of interaction with NICE particularly in view of possible guideline for management of myeloma
- Development of audit tools – item for discussion – prioritisation of audit
- Uptake of guidelines by Cancer Networks
- Awareness of guidelines amongst UK haematologists
- Development of audit tools – item for discussion – prioritisation of audit
- Develop outcome measurement e.g.
- Hits to BCSH website
- Keep records of presentations
- Citation frequency
- Informal comments
- Develop guidelines for primary care
- Executive summary –possible hard copy for distribution – separate grant would be needed
- Encourage patient representation in guideline development
Jenny Bird
24th June 2009
UKMF guidelines group/Terms of reference
