Aims Improve the care of patients with agitation, anxiety, apathy, psychosis, and sleep disorders associated with Huntington’s disease (HD) by providing education and clinical management guidance.
Methods Over a 3-year period, a Core subgroup of nine research and clinical leaders from the behavioural working groups of EHDN and HSG developed guidelines for these 5 symptoms using an iterative process intended to be consistent with Institute of Medicine (IOM) model. Due to the limited evidence base we relied heavily on core group expert opinion for developing initial recommendation statements. Subsequently, a total of 110 statements were submitted via 5 web-based surveys to a broader group of 140 international experts who are primary investigators of the Enroll-HD clinical study.
Results We sent the first round surveys to 140 email addresses including all EHDN and HSG Enrol-HD site investigators. A total of 83 recipients (40 EHDN, 43 HSG) answered at least one survey, with 74 completing all five. We could not confirm how many recipients actually received the surveys.
Of the initial 110 statements, 98 reached an agreement level of 85%, the defined level for strong consensus. The level of agreement was similar across all five symptoms with strong consensus (86–94%) depending on symptom. We sent the revised statements to the 83 people who responded to any first round survey and got second round responses from 55 recipients. All second round statements reached the defined level of strong consensus.
Next steps Our poster will present 5 recommendation tables that will be included in an upcoming manuscript. Guidelines are intended as educational tools that provide options for management of each symptom as it presents in HD.
- care improvement
- sleep disorders