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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.”
