by
Maria Elisa Mancuso;
Johnny Mahlangu;
Robert Sidonio Jr;
Peter Trask;
Marianne Uguen;
Tiffany Chang;
Midori Shima;
Guy Young;
Johannes Oldenburg;
Sylvia von Mackensen
Introduction
Persons with haemophilia A (PwHA) with factor (F)VIII inhibitors, including children, have impaired health‐related quality of life (HRQoL). The HAVEN 2 study (NCT027955767) of paediatric PwHA with FVIII inhibitors demonstrated that subcutaneous emicizumab prophylaxis resulted in low annualizedbleed rates.
Aim
We assessed the impact of emicizumab prophylaxis on the HRQoL of children and their caregivers participating in HAVEN 2.
Methods
Children aged 8‐11 years self‐reported HRQoL using the Haemophilia‐Specific Quality of Life Assessment Instrument for Children and Adolescents Short Form (Haemo‐QoL SF II). Caregivers of children aged 0‐11 years completed the Adapted Inhibitor‐Specific Quality of Life Assessment with Aspects of Caregiver Burden. All scores were transformed to a 0‐100 scale, where lower scores reflect a better HRQoL. The number of missed days from school/day care and hospitalizations was also recorded.
Results
In HAVEN 2 (n = 88), the median age was 6.5 years (range: 1‐15 years); 85 participants were aged < 12 years and included in this analysis, and 34 participants were aged 8‐11 years, thereby eligible to complete the Haemo‐QoL SF II questionnaire. The mean (standard deviation, n) baseline Haemo‐QoL SF II ‘Total’ score was 30.2 (14.9, 30), indicating moderate impairment; with emicizumab, mean score decreased by −9.62 (7.73, 17) points to 23.0 (13.93, 20) by Week 49. The most improved domains were ‘Sports & School’ and ‘Physical Health’. Caregivers reported similar improvements.
Conclusion
Prophylactic emicizumab is accompanied by substantial and sustained improvements in HRQoL of paediatric PwHA with FVIII inhibitors and their caregivers.
Introduction
Bullying, a severe form of mistreatment, occurs when an individual in an authority position intentionally imposes negative persistent behaviors on a target. In academic medicine, bullying is used to impede the target's professional growth. While there is abundant literature on how to disrupt other forms of mistreatment, the literature related to bullying among academic medical faculty members is scarce.
Methods
We developed an interactive workshop on disrupting faculty-on-faculty bullying in academic medicine, with a focus on gender-based bullying, following Kern's model of curriculum development. The workshop consisted of three didactics on the scope of bullying in academic medicine: identifying bullying behaviors, learning strategies to mitigate bullying, and understanding what constitutes comprehensive antibullying policies. The workshop also included three small-group activities to reinforce learned concepts.
Results
Eighty-seven faculty attended one of three workshops held over a 6-month period. We received 24 completed evaluations for a 28% rate of return. Most participants rated workshop activities as being well taught and of great value. Many respondents commented that after participating in the workshop, they realized they had likely experienced or witnessed bullying in their careers and that mitigating bullying required effort at multiple levels (individual, institutional, national).
Discussion
This workshop fills a need in academic medicine through addressing how faculty members and institutions can help themselves and others to disrupt bullying. We will continue to disseminate this workshop at national conferences and at individual institutions. This resource will allow other educators to offer the workshop at their home institutions.