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Br J Nurs. 2014 Apr 10-23;23(7):376-81.

Patient journeys: diagnosis and treatment of pernicious anaemia.

Author information

  • 1Chairman, The Pernicious Anaemia Society, Bridgend.
  • 2Scientific Advisor, COBALZ Limited, Chester.
  • 3Member/Trustee, The Pernicious Anaemia Society, Bridgend.
  • 4Senior Honorary Research Fellow, Cardiff University, School of Medicine, Wrexham Technology Park, Wrexham.

Abstract

BACKGROUND:

Instigating a patient support group for patients with pernicious anaemia (PA) revealed dissatisfaction with its current diagnosis and treatment. The authors investigated the clinical features, patient experience of diagnosis and treatment of PA in the UK.

METHODS:

A total of 889 patients registered with the PA Society support group completed an online survey or postal questionnaire. Outcome measures included clinical features, length of time to diagnosis and patient satisfaction with current treatment

RESULTS:

One-third of patients experienced symptoms for up to 1 year before diagnosis; 14% waited more than 10 years for a diagnosis. Neurological features were highly prevalent, the most common being memory loss and poor concentration. Nearly two-thirds of respondents were dissatisfied with current treatment; 10% used a non-licensed form of B12 to supplement their prescribed injections.

CONCLUSION:

The diagnosis and treatment of PA should be subject to a thorough review. This article discusses the patient survey and results and makes recommendations for how the diagnosis and treatment of PA may be evaluated.

PMID:
24732991
DOI:
10.12968/bjon.2014.23.7.376
[PubMed - indexed for MEDLINE]
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