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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 death.”
To view the findings in full please click here
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