Assessment of return rates for patient related outcome measures (PROM) in the BSACI Registry for Immunotherapy (BRIT)
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ErlewynLajeunesse M.
Michaelis L.
Perfetti Villa L.
Achunche S.
Maslovskaya O.
Smith M.
Baigel R.
Dawson T.
Gourgey R.
Kelly M.
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2025
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Objectives: BRIT is the national registry for allergen immunotherapy and high tariff drugs. Patient Related Outcome Measures (PROM) are designed to assess response to treatment. BRIT records a variety of PROM across several treatment domains: Aeroallergen (AIT), Venom (VIT) and Peanut Immunotherapy (PIT) and Omalizumab for Chronic Spontaneous Urticaria (MAB). PROM can be submitted manually by clinician or directly from the participant in response to email/SMS. This is a review of automated PROM returns. Method(s): Patient participants provide written informed consent to interact with the registry. They receive regular invitations to complete PROM by email and SMS both during and after completion of treatment. Different PROM questionnaires are required for each treatment domain and therefore vary in type and frequency, for example, AIT and MAB children (<16 years) are sent different questionnaires from adults. We reviewed participant response rates to the registry's automated PROM invitations from inception in 2018 to 3rd April 2025. Result(s): 20,142 PROMS were sent to 3,792 participants from 99 consultants across 75 centres. The median return per centre was 26.8% (IQR 16.6-35.2%). Return varied by treatment domain: 2,563 AIT participants returned 22.5% (1,957/8,716), 701 VIT participants returned 29.3% (1,415/4,386), 410 MAB participants returned 27.9% (1,637/5,876) and 118 PIT participants returned 56.0% (400/714). Paediatric returns were 25.5% (1,614/6,319) while adults returned 27.4% (3,795/13,823). Conclusion(s): BRIT PROM returns vary widely by treatment domain and centre. Centres should encourage participants to provide PROM data at baseline and at key points in their treatment. Current PROMS are based on validated QOL used in clinical trials and may not suit long term use in this registry. Further work is required to assess the most appropriate methods and timing for measuring registry PROM. With a move towards outcomes-based commissioning, measuring Real World Effectiveness using PROM will become increasingly important to justify state funded health care.
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Clinical and experimental allergy : journal of the British Society for Allergy and Clinical Immunology