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Swine Flu - The latest Questions and Answers from PiA's Medical Advisory Panel

For official, updated PiA advice for its PID members, click....HERE

New booklets aimed at accelerating PID diagnosis and treatment

Concise diagnosis guides to help paediatricians, gastroenterologists, respiratory and ENT specialists spot the warning signs of primary immunodeficiencies (PIDs) have been published by the Is It PID? Campaign to mark Rare Disease Day (28 February 2010).

 “These booklets are designed to simplify the diagnosis of PID by identifying the signs in a patient that should prompt consideration of an immunodeficiency, they contain information on the process of diagnosis and a directory of specialist centres for onward referral,” said Dr Philip Wood, Consultant Immunologist, Chairman of UK Primary Immunodeficiency Network (UKPIN) and lead author of the RCP guidelines. 

People with PIDs often present to these specialists with severe infections and other indicator conditions, but while the symptoms are managed the underlying immune deficiency remains unidentified and untreated. Individual guides for each specialty have been written in association with the UKPIN and follow the publication of evidence-based diagnosis guidelines by the Royal College of Physicians (RCP) in December.

The Respiratory and ENT booklets have been mailed to key specialists, as will that for Paediatrics when available. The guide for Gastroenterologists will be available electronically on the IBDigest Clinical Community (www.clinicalcommunities.net/ibdigest) and emailed to key specialists.

Copies of the ENT, Respiratory and Gastroenterology booklets are available to download on the Campaign website (www.isitpid.com) and the UKPIN website (www.ukpin.org.uk). The Is it PID? Campaign is supported by an educational grant from Bio Products Laboratory.

Please click here for more information or here for copies of the diagnosis guides.

Late Diagnosis Remains a Significant Problem

Late diagnosis remains a serious problem in the diagnosis of Primary Immunodeficiencies (PIDs), a study has found.

A case review sent to all UK immunology departments as part of the Is It PID? Campaign, resulted in detailed information from 60 patients treated by 20 hospitals over the last year.  Delay in diagnosis results in chronic infections and high levels of patient depression, the study shows. 79% of patients reported suffering repeat upper and lower respiratory infections and 34% suffered other serious infections before diagnosis. 27% of patients waited over 7 years before diagnosis. 

Analysis of the results shows that diagnostic delays for PIDs place a significant effect and strain on the NHS. The majority of patients (85%) had seen more than one specialist before seeing an immunologist.  Just over a third had seen two or more specialists.  Over half were shown to have experienced more than one hospital admission before diagnosis.

Apart from the economic impact of wrong referrals, nearly 10% of patients had to wait until they presented at an A&E department to be referred to an immunologist. 

Late diagnosis remains a significant problem; 66% of patients had infections, 30% had respiratory complications and nearly half of all patients suffered stress, anxiety and depression. However, there was a 40% improvement in stress, anxiety and depression following diagnosis and treatment. 

Chris Hughan, Chief Executive of the PIA said: “The case review accurately reflects the experiences of patients and supports our work to raise greater awareness among clinicians and commissioners of these conditions.  Delays in diagnosis can blight an individual’s life and, if left untreated, lead to permanent organ damage, even death.”

To view the findings in full please click here


Page Contents 

Swine Flu

Is It PID? Booklets

Late Diagnosis