Group Issues AS Guidance to Speed Diagnosis

BIRMINGHAM, ENGLAND — The first-ever best-practice recommendations have been issued on ankylosing spondylitis to help correct a dangerous trend toward delayed diagnosis.

Evidence for the delay in diagnosis and receipt of treatment comes from a patient survey conducted by the National Ankylosing Spondylitis Society (NASS), a U.K. charitable group representing patients with the disease. Survey findings showed that 35% (n = 324) of people with AS delayed seeking treatment for more than 1 year, 38% were not referred to a rheumatologist immediately, and 32% then had to wait more than 3 months before they saw a specialist. The average time between the first primary and secondary care consultations was 62 weeks.

Patients with AS “see an average of three specialists before they are diagnosed,” said Jane Skerrett, director of NASS. The long wait time has meant that “the average interval from symptom onset to receiving effective treatment is 524 weeks,” she said at the annual meeting of the British Society for Rheumatology.

The seven recommendations (see box) in the best-practices guidance were written by some of the leading AS experts in the United Kingdom and draw on existing U.S. and European guidance. The recommendations are included in a report called “Looking Ahead.”

In particular, the recommendations highlight the need for early recognition, access to the right specialists and all available treatments, and long-term follow-up and management, said one of the report's authors, Dr. Andrew Keat, a consultant rheumatologist at Northwick Park Hospital in London.

“It is a frank analysis of why so many people with ankylosing spondylitis [in the United Kingdom] still don't get the best deal,” Dr. Keat commented. He added that the report identifies the barriers to treatment in the United Kingdom, which are not very different from those in other countries, and provides action points for all those involved in patient care.

“I'm delighted that ankylosing spondylitis is at last getting the attention it deserves. For so long, it's been the forgotten condition,” said the BSR president Deborah E. Bax, a consultant physician in rheumatology at the Royal Hallamshire Hospital in Sheffield, England.

Dr. Bax noted that the advent of biologic therapy has led to a resurgence of interest in AS, and that the BSR would be setting up a dedicated biologics register in AS. “It is vital that people with AS get the best possible treatment, and this publication will be a very helpful tool for patients and physicians alike,” Dr. Bax observed.

“NASS owes a great deal to those individuals who have worked hard on [this] project,” said Ms. Skerrett. “They have produced a set of recommendations which will be of real value in improving the diagnosis, treatment, and ongoing management of people with ankylosing spondylitis.”

The best-practice recommendations will be presented to members of the U.K. parliament in June, said Ms. Skerrett, to raise awareness of ankylosing spondylitis and the need to improve its overall diagnosis and management.

Disclosures: Abbott Laboratories provided financial support for the NASS survey and KRC Research performed the data analysis. Funding for the “Looking Ahead” report was provided by a grant from Abbott, Schering-Plough Ltd. (now a part of Merck & Co.), and Wyeth (now a part of Pfizer Inc.). The presenters made no personal disclosures.