Shannon van Hoorn

75 Patient-relevant health outcomes: A delphi study 3 Health outcome selection Round 1 In the first Delphi round both panels voted on the importance of 146 health outcomes (Figure 1). The patients and caregivers panel achieved consensus on the importance of 20 health outcomes. The healthcare professionals panel achieved consensus on the importance of 41 health outcomes. Respectively, 102 and 81 health outcomes were excluded due to consensus on unimportance by the patients and caregivers and healthcare professionals panels. During the first round, the panels proposed alterations in the definition for the health outcome vitality and suggested the addition of five new health outcomes: 1) concerns about heredity, 2) concerns about pregnancy/miscarriage/giving birth, 3) joint imaging (MRI or X-ray), 4) visualization of joint bleeds, and 5) increase in joint bleeds (Table S2). Round 2 In the second round, both panels rated the importance of 30 health outcomes (Table S3). The patients and caregivers panel achieved consensus on the importance of 7 health outcomes. The healthcare professionals panel achieved consensus on the importance of 9 health outcomes. Respectively, 21 and 19 health outcomes were excluded from the third round due to consensus on unimportance by the patients and caregivers and healthcare professionals panels. Two new healthcare outcomes, anxiety and use of on-demand medication, were suggested by the panels. Round 3 In the third round, the patients and caregivers panel rated the importance of 31 health outcomes while the healthcare professionals panel rated 54 health outcomes (Table S4). The patients and caregivers, and healthcare professionals panel achieved consensus on unimportance on respectively 10 and 26 health outcomes. The patients and caregivers panel did not achieve consensus on one health outcome, while the healthcare professionals panel did not achieve consensus on eight health outcomes.

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