Establishing UK Research Priorities In Smell and Taste Disorders: A
James Lind Alliance Priority Setting Partnership
Abstract
Background: A James Lind Alliance Priority Setting Partnership (JLAPSP)
was established by Fifth Sense together with UEA to identify the top 10
research questions in the field of smell and taste disorders in the
United Kingdom. Methods: After steering group was established, an
electronic survey was disseminated to all stakeholders (patients,
healthcare professionals, family, carers, researchers) to determine the
list of questions. After removing out-of-scope responses, the remainder
were consolidated to create summary questions. A literature search was
conducted to remove already answered questions. A second survey was used
to determine the top questions that formed the subject of final debate
at a workshop attended by clinicians and patients to determine the top
10 priorities. Results: The 665 respondents to the initial survey
provided 1698 research questions. Thirteen were out-of-scope and
removed; remaining 1685 were then consolidated to form 147 summary
questions. Following literature search and discussion with the steering
group, 37 questions remained for the second survey, which 235 people
responded. The top ten priorities agreed in the workshop covered themes
of improved understanding of pathophysiologlogy, improving health
services, and managing long-term effects of smell/taste disorders. The
most important research question agreed was “How can we further our
understanding of the mechanism of disease in the nerve pathways that
affect smell and taste disorders, including where parosmia and
phantosmia exist.” Conclusions: We report the top 10 research
priorities in smell and taste disorders. These priorities will now
empower researchers to secure research funding and provide the basis of
the Fifth Sense research hub.