However, the effects of these provisions are not known. The objectives of this study were

twofold: (i) evaluate the impact of the economic downturn, and (ii) assess the perceived impact of health care reform on haemophilia A treatment decisions from patient, caregiver and HCP perspectives. Haemophilia A patients over 18 years old, caregivers of haemophilia A patients under 26 years old and haemophilia A haematologists and nurses were invited to complete a double-blinded web-based survey between March 2011 and May 2011. Eligible patients had to have moderate/severe haemophilia A, and either be on prophylaxis or have had at least 12 bleeds per year (if treated on-demand). Both patients and caregivers (collectively referred to as ‘patients’ henceforward

JNK inhibitor solubility dmso unless CX-5461 otherwise noted) were recruited via email through an advocacy group that networks with haemophilia A patients. Patients were asked to provide their informed consent before they participated in the survey. HCPs were mainly recruited from Hemophilia Treatment Centers (HTC) directory listing through the Centers for Disease Control and Prevention (CDC) and supplemented by an email list of haematologist contacts. HCPs who had at least 2 years of experience in haemophilia treatment and treated at least six severe haemophilia A patients during 2010 were eligible to participate. A total of 600 patients/caregivers and 531 HCPs were sampled. Two surveys were developed: one for patients and one for HCPs. This study was approved by Copernicus Group, an institutional review board (IRB). Patients and HCPs (collectively referred to as ‘participants’ henceforward) were asked questions regarding demographics, the impact of the recent economic downturn and the impact of four specific health care reform provisions on treatment decisions. Participants were asked earlier in the survey to rate the impact of the recent economic downturn and the perceived impact of health care reform law on haemophilia care using a five-point scale (from ‘significantly negative

impact’ to ‘significantly positive impact’). Patients were then asked to rate their general awareness of four health care reform provisions—the Linifanib (ABT-869) elimination of lifetime caps, expansion of coverage for young adults, prohibition of coverage exclusions due to a pre-existing condition and temporary high-risk pools—on a four-point scale from ‘not at all aware’ to ‘very aware’. The next section of the survey provided a brief summary of the key elements of these health care reform provisions (Table 1). This survey was designed to explore whether the addition of a brief summary of the provisions changed how participants perceived the anticipated impact of health care reform. Therefore, participants were asked the same questions after the brief education about the anticipated impact of health care reform to determine whether responses changed.