Psychometrics and applications of a novel self-report measure of emicizumab adherence: VERITASNexGen.

INTRODUCTION: Treatment adherence is critical to minimize bleeding episodes in persons with haemophilia. Suboptimal adherence increases risk of adverse medical outcomes and negatively impacts quality of life. Assessment of treatment adherence is therefore an integral component of intervention to mitigate the adverse impacts of haemophilia. AIM: To develop and validate a multifactorial, patient (self or caregiver) report adherence measure for emicizumab treatment and report the first patient-report data on adherence to specific components of emicizumab treatment (dosing, timing, injection, planning and bleeds). METHODS: An IRB approved multi-site prospective study enrolled 83 participants with factor VIII deficiency being treated with emicizumab. Participants completed the 25-item VERITAS NexGen (self-report from 50 adults age 18+ years; caregiver-report from 33 parents of children aged 6 months to 17 years) as well as a global adherence rating (GAR) scale. Providers of participants also completed a GAR scale. RESULTS: Most VERITAS-NexGen subscales had good-to-excellent internal consistency reliability, test-retest reliability, and validity. VERITASNexGen scores revealed globally strong patient-reported adherence; however timing and bleed management were reported as greater challenges to adherence compared to dosing and injections. Adults struggled more with timing and planning of injections than caregivers. CONCLUSION: The VERITASNexGen is the first validated multifactorial patient-report measure of adherence designed specifically for emicizumab treatment. Results suggest excellent adherence, with only 4%-13% of participants reporting suboptimal adherence to different components of the treatment regimen. Used in conjunction with other adherence measures, VERITAS-NexGen meets a crucial need for monitoring and understanding patient adherence to emicizumab in clinical and research settings.

Improving bleeding disorder treatment log adherence: An application of the information-motivation-behavioral skills model.

INTRODUCTION: For people with severe bleeding disorders (PwBD) who are prescribed home treatment, treatment logs are an important part of the management of their care. Treatment logs provide a clinical picture of the home treatment regimen and can serve as a communication tool between the medical team and the person with a bleeding disorder. Most importantly, treatment logs allow for the adjustment of the treatment dose and frequency to prevent bleeding episodes. Yet, a large number of PwBD do not complete treatment logs. AIMS: We aimed to develop and implement interventions to increase adherence rates of treatment log completion in PwBD on a home treatment regimen by at least 20% over 2 years. METHODS: We conducted a quality improvement initiative from 2019-2022 involving developing and implementing interventions that were guided by the application of the Information-Motivation-Behavioural Skills Model. Examples of interventions included: the development of educational materials on the different methods of log completion and interactive discussions that involved a patient-driven decision of selecting a treatment log method. Data on the implementation of the theoretically-based interventions as well as outcome data on the success of treatment log completion was reviewed monthly. RESULTS: Following the application of the Information-Motivation-Behavioural Skills Model on the designed and implemented interventions, there was a 20% increase in individuals' adherence with treatment logs completion (N = 68). CONCLUSION: Treatment logs are an important piece of a PwBDs' prescribed home treatment regimen. Quality improvement interventions promoted increased treatment log adherence for PwBDs'prescribed prophylactic home treatment.