How collaborating with patients led to improved management of pernicious anaemia

The work described here won the UKCPA Best Poster award at the Pharmacy Together 2019 conference.

The Pernicious Anaemia Society was formed in 2005 to support people with pernicious anaemia and to improve its diagnosis and treatment by collaborating with health care professionals and researchers. Because of the challenges in effectively managing symptoms with the current hydroxocobalamin treatment schedule, this work was collaboratively undertaken with the Pernicious Anaemia Society to facilitate change and more effective symptom management.

Research conducted with members of the Pernicious Anaemia Society indicated that 64 percent are dissatisfied with their current treatment, with a fifth rating their medical care as “very poor”. Numerous anecdotal reports from Pernicious Anaemia Society members indicated that many experienced a return of symptoms before their next maintenance dose was due, which impacted on their quality of life. Whilst some GPs would prescribe doses more frequently than the British National Formulary (BNF) recommended 3-monthly, many would not, resulting in inconsistency and inequity of treatment. These issues were one of the main reasons for individuals contacting the Pernicious Anaemia Society for guidance.

A survey of Pernicious Anaemia Society members showed that 92 percent experienced a return of symptoms before their next injection was due. Around half of patients were receiving their maintenance doses at a frequency consistent with the BNF recommendations, with just over a quarter receiving doses more frequently, and just under a quarter receiving doses less frequently. In addition, 44 percent of patients who perceived their treatment to be inadequate purchased additional supplementation after their GP refused to give their maintenance dose more frequently. Some of these patients were purchasing parenteral products online to self-administer, which raises safety concerns.

A summary of data was submitted to the BNF for clinical review resulting in a change to the recommended dosing schedule

A comprehensive review of the literature was undertaken to establish the evidence base for the current dosing schedule in the BNF. This highlighted that the treatment regimen has subtly evolved since the 1960s. A review of key sources failed to identify conclusive evidence that would have necessitated the changes in the recommended treatment regimen that occurred in 1983, 1998 and 2000. A disparity between the licensed dosing schedules in the Summaries of Product Characteristics and the doses in the BNF was also noted.

A summary of the literature review and patient experience data collected through the survey work was submitted to the BNF editors for clinical review. This resulted in a change to the recommended dosing schedule for hydroxocobalamin in January 2019 from every three months to every two to three months.

It is too early to determine the long-term impact of these changes on patient quality of life. To date, the Pernicious Anaemia Society has received numerous calls from patients noting their thanks that there is now acknowledgement of the importance of individualising care according to patient need. A follow-up study is planned to establish the impact of these new guidelines on effective symptom management and to determine to what extent prescribers are utilising this more flexible dosing schedule.

There are significant benefits when pharmacists use their expertise and work together with patient-led organisations to facilitate positive changes for patients on a national level.

This work was presented as a poster at the Pharmacy Together 2019 conference, organised by UKCPA and Pharmacy Management.

Additional authors:

Martyn Hooper, Pernicious Anaemia Society.

The opinions expressed in this article are those of the author. They do not purport to reflect the opinions or views of the UKCPA or its members. We encourage readers to follow links and references to primary research papers and guidance.

Competing interest statement: 

The author declares: collaborative support from the Pernicious Anaemia Society for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; the author has been an unpaid trustee of the Pernicious Anaemia Society since May 2019.


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