70 Chapter 3 METHODS Study design The Delphi methodology was used to establish consensus on which health outcomes are important for patients with autosomal inherited bleeding disorders. The Delphi method is a consensus-based, iterative process that uses successive anonymous surveys to gather information from a selected panel of experts on a specific topic 16,17. Participant selection and recruitment Two Delphi panels were assembled consisting of Dutch-speaking patients aged 18 years or older with an autosomal inherited bleeding disorder and caregivers of pediatric patients with an autosomal inherited bleeding disorder, and healthcare professionals from various disciplines currently working in the field of bleeding disorders. Healthcare professionals were recruited through professional contacts of the researchers at the six hemophilia treatment centers (HTCs) in the Netherlands, the Dutch Hemophilia Physicians Society (NVHB) and the Dutch Hemophilia Nurses Society (NVHV). Patients and caregivers were recruited through the Dutch Hemophilia Patient Society (NVHP). In addition, caregivers of patients currently receiving treatment at the pediatric hematology outpatient clinic of the Erasmus MC Sophia’s Children Hospital, in the Netherlands were actively recruited to participate in this study. All contacted individuals or organizations received an email containing a short study description, a description of what is expected of the participant and a participant information letter. Using a snowballing technique, all contacted individuals were asked to spread the invitation among their network. Individuals willing to participate in the study could use a link provided in the email to fill in a digital informed consent form. Once informed consent was given, the participants received a personal login code to complete the Delphi surveys in the web-based Delphi platform Welphi 18. Using Welphi, follow-up emails were sent two weeks and five days before the closing of each Delphi round to encourage participation. The study was reviewed and determined to be exempt by Medical Ethical Research Committee of the Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands. Delphi process All three Delphi surveys included an introduction page that paraphrased the survey’s intent, the study objectives and an explanation of the Delphi method.
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