Summary of the survey results:
Patient journeys: diagnosis and treatment of pernicious anaemia
Martyn Hooper, Peter Hudson, Fiona Porter and Andrew McCaddon; British Journal of Nursing, 2014, Vol. 23, No 7
a. Between August 2010 and November 2012, 1184 individuals completed the questionnaire. After eliminating those who filled in the questionnaire on behalf of a friend or family member, and non-UK respondents, 889 completed questionnaires remained.
b. The questionnaire was either completed online or by completing a paper version.
c. The ages of respondents at the time of diagnosis of PA varied from less than 10 years (4 individuals) to greater than 80 years (12 individuals). The most frequent age at diagnosis was 41–50 years (228 individuals).
Length of time to diagnosis
One-third of patients experienced symptoms for up to 1 year before diagnosis, 22% had to wait 2 years, 19% for 5 years and 4% for 10 years for an accurate diagnosis. 14% of individuals experienced symptoms for more than 10 years before arriving at their diagnosis.
Patient satisfaction with current treatment:
Patients were asked if they were satisfied with their treatment – 64% said ‘No’, 28% said ‘Yes’ and the remaining 8% did not provide an answer.Patients were asked to choose a word that would best describe their medical care;the results were: Poor (20%), Inadequate (18%), Good (10%), Poor (10%), Undecided (9%), Reasonable (8%), Adequate (8%), Very Good (7%), Excellent (3%) and Unreasonable (2%). The remaining respondents did not answer the question.
Nearly two-thirds of respondents were dissatisfied with current treatment.10% used a non-licensed form of B12 to supplement their prescribed injections.Respondents were asked which word best described how they rated their medical care. The results were: Very Poor (20%), Inadequate (18%), Good (10%), Poor (10%), Undecided (9%), Reasonable (8%), Adequate (8%), Very Good (7%), Excellent (3%) and Unreasonable (2%). The remaining respondents did not answer the question.
This large survey shows that a thorough review needs to be conducted into how PA is diagnosed and treated in particular and how vitamin B12 Deficiency is diagnosed and treated in general.