91 Patient-relevant health outcomes: A delphi study 3 Results of the panel(s) # Health outcome Description Patients and caregivers Healthcare professionals 26 Alteration in joint functional status The alteration (improvement/deterioration) in joint functional capacity to perform functions of daily living × 27 Age at diagnosis The age at which the bleeding disorder was diagnosed by a hematologist ≠ ≠ 28 Time between bleeding onset and administration of treatment The time between bleeding onset and the administration of factor concentrates and/or platelets × 29 Time to response The time between the start of the bleeding episode and the response to treatment × × 30 Time necessary to stop the bleed The time between the start of the bleeding episode and the stop of bleeding × × 31 Time to return to physical activities The time between the start of bleeding episode and return to being physically active × × 32 Time to return to work/ school The time between (temporary) cessation of work/school due to the bleeding disorder and return to work/school × × 33 Pain The duration and intensity of general pain × × 34 Menstrual pain The duration and intensity of menstrual pain × × 35 Chronic pain The duration and intensity of persistent/chronic pain × × 36 Acute pain The duration, intensity and frequency of acute pain × × 37 Joint pain/arthralgia The duration, intensity and frequency of pain in a specific joint or joints × × 38 Pain interference The presence of pain and the interference with daily life × 39 Response to pain The visible way a person expresses their pain (e.g. through observable expressions such as sighing or crying, and expression of the severity of pain such as resting, protecting themselves, facial expressions and asking for help) × ×
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