Abstract

Benefits associated with physical activity (PA) for people with haemophilia (PWH) may include improvements in joint, bone and muscle health. However, the factor VIII activity level required to avoid a bleeding episode with PA is unknown. We therefore sought to determine if clinically acceptable estimates could be generated using a modified version of the Sheffield Elicitation Framework (SHELF), a formal approach for eliciting judgements regarding probability distributions. A panel of 9 haemophilia experts which included five consultant haemotologists, two clinical specialist physiotherapists, one haemophilia nurse consultant and one patient advocate participated. Based on the 2017 National Hemophilia Foundation (NHF) PA descriptions, clinical experts estimated factor levels at which a bleed could be avoided. The estimates were elicited using an adapted version of the SHELF Roulette method. Probability distributions for each scenario were combined and presented to the panel of experts. All responses were judged to be correct applications of the SHELF method and estimates were combined. The final set of outcomes and approach were accepted by the panel and may be used to inform future research and evaluation for factor VIII activity level required to avoid a bleeding episode with PA. Important health care decisions are required often where the evidence base is limited. SHELF is a formal approach for harnessing expert judgements. SHELF can be used to promote evidence-based practice by use of a methodological tool to facilitate the combination of expert judgement to guide health care decisions.

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