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Patient-reported characteristics of pernicious anaemia: a first step to initiate James Lind Alliance Priority Setting
Alfie Thain1,2, Petra Visser2, Kathryn Hart1
1School of Biosciences and Medicine, University of Surrey, Guildford, UK.
Insights
Pernicious anaemia (PA) patients often face long diagnostic delays and varied treatment. This study surveyed PA patients to build a research repository, aiming to improve future diagnosis and management.
Area of Science:
- Hematology
- Immunology
- Gastroenterology
Background:
- Pernicious anaemia (PA) results from autoimmune destruction of gastric parietal cells, leading to vitamin B12 deficiency.
- Intrinsic factor, crucial for B12 absorption, is also affected in PA.
- The Pernicious Anaemia Society identified key research priorities for PA diagnosis and management.
Purpose of the Study:
- To establish a research repository of patients with pernicious anaemia.
- To characterize a cohort of PA patients for future research.
Main Methods:
- An online survey was distributed to 3,482 members of the Pernicious Anaemia Society between April and September 2022.
- The survey collected data on demographics, diagnosis, comorbidities, family history, and management of PA.
- 1,191 members completed the survey, providing data for cohort characterization.
Main Results:
- Most participants (84%) were UK-based, and 81% were female, with ages ranging from 23-93.
- Diagnosis was primarily based on low serum B12 (50%), positive intrinsic factor antibodies (38%), or parietal cell antibodies (15%).
- Significant diagnostic delays (≥3 years) were reported by 37%, and 52% received B12 treatment outside recommended guidelines.
Conclusions:
- The study highlights significant gaps in current PA diagnostic and management strategies.
- Findings support the James Lind Alliance Priority Setting Partnership research priorities for PA.
- A characterized PA patient cohort provides a foundation for developing improved diagnostic and management approaches.
Background:
Pernicious anaemia (PA) is characterised by vitamin B12 deficiency due to autoimmune-mediated loss of gastric parietal cells and intrinsic factor - a specific transporter for B12's intestinal uptake. The Pernicious Anaemia Society (PAS) is a patient-driven charity that recently identified 10 research priorities for improved diagnosis and management of PA through a James Lind Alliance Priority Setting Partnership. To facilitate research addressing these priorities, the aim of this study was to survey PAS members to identify and characterise a cohort of patients to form a PA research repository.
Methods:
An online survey was designed using SurveyMonkey (SurveyMonkey Inc., San Mateo, CA, USA). It comprised twenty-one questions collecting data on demographics, mode and timing of PA diagnosis, comorbidities, family history of PA or other autoimmune conditions, and type and regime of management. The survey was sent to 3,482 PAS members (April - September 2022) via the PAS website, newsletter, and email.
Results:
A total of 1,191 PAS members completed the survey. Of those individuals with a probable (n = 471) or suspected PA (n = 500) diagnosis defined by higher specificity diagnostics 84% were UK-based and 81% were female, with an age-range of 23-93 years. Diagnosis was predominantly based on low serum B12 (50%), positive intrinsic factor (38%), and/or parietal cell autoantibodies (15%). Diagnostic delays were common with 37% of participants reported waiting ≥ 3 years for a diagnosis. Nearly half of the participants suffered from one or more other autoimmune diseases. One-third also reported having at least 2 and up to 7 family members with PA or other autoimmune diseases. Vitamin B12 treatment frequency was highly varied, ranging from daily to 3 monthly B12 injections, with 52% of participants taking injections outside of the recommended guidelines.
Conclusion:
This study's findings further highlight the gaps in current diagnostic and management approaches for PA and pave the way forward for future work in accordance with the JLA-PSP research priorities. By characterising a cohort of PA patients and compiling essential baseline data, we provide a foundation for research that supports the development of more effective diagnostic and management strategies.
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