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Open access

Debra Pollard, Kate Khair, Cléa Percier, Yen Wong and Robyn Shoemark

Abstract

Management of haemophilia involves on-demand or prophylactic intravenous administration of recombinant or plasma-derived replacement clotting factors or bypassing agents. These products are provided as lyophilised powder and diluent, which need to be mixed to produce a solution for infusion. While this process has previously involved multiple time-consuming steps, several reconstitution systems are now available to make mixing easier and more convenient. This study aimed to investigate experience of use and perceptions of the Novo Nordisk MixPro® mixing device among patients and carers using activated recombinant factor VII (rFVIIa) or recombinant factor VIII (rFVIII) with MixPro, and nurse specialists who were either familiar or unfamiliar with MixPro. Nurses were asked to simulate the preparation of an inactive solution using MixPro. Semi-structured interviews were used to gain insight into participants’ opinions of mixing systems in general and their perceptions of MixPro. Likert scales were used to rate the performance of MixPro against predefined characteristics of mixing systems, and the importance of the predefined characteristics to the design of a mixing system. Patients/carers and unfamiliar nurses identified low contamination risk when mixing as the most important characteristic of a mixing system; the most important criterion for familiar nurses was confidence that patients/carers could prepare the system correctly. MixPro was perceived to perform very well overall, particularly in parameters identified as most important. It was described as being user-friendly, simple and quick; its compactness and portability were highlighted as advantages for storage and travel. The main disadvantages reported related to its small components. The majority of nurses said that they were highly likely to recommend MixPro to their patients.

Open access

James Munn, Kate Khair, Andrew Scott, Robyn Shoemark, Julia Spires, Morten Lind Jensen and Reto Wirz

Abstract

Prophylactic coagulation factor replacement is increasingly the treatment modality of choice for people with haemophilia (PWH). Currently available recombinant factor products require reconstitution from a lyophilised powder and diluent, and a range of infusion systems is available to assist in this process. This study aimed to understand the properties of a reconstitution/infusion system that are most important to PWH and carers of children with haemophilia (CWH), and to assess two available systems produced by Novo Nordisk for the reconstitution and infusion of activated recombinant factor VII and recombinant factor VIII: the original infusion system and the newer MixPro® system. Both were tested by a group of 67 PWH or carers of CWH who were naïve to them. Participants rated the performance of each system against 18 predefined parameters using the 7-point Likert scale, and ranked the importance of these parameters to the design of an infusion system. They also directly compared the performance of the two systems and provided qualitative feedback. Overall, MixPro® was preferred to the original system by 94% of study participants. This was reflected in the performance scores for individual parameters, with scores in 16/18 parameters being significantly higher for MixPro® (p<0.05) than the original system. Low contamination risk was seen as the most important criterion in the design and choice of an infusion system, with 97% regarding MixPro® as the superior system in this category. The MixPro® system was perceived as being quick, easy to use, convenient and portable. It is hoped that these findings may help guide the future design of infusion systems for PWH.

Open access

Kate Khair, Mahmoud Abu-Riash, Ana Claudia Acerbi, Marlene Beijlevelt, Georgina Floros, Kuixing Li, Ljiljana Rakić, Bongi Mbele, Robyn Shoemark and Jim Munn

Abstract

Haemophilia nursing roles continue to develop alongside nursing as a profession. There are now nurses who practice autonomously, much like a medical practitioner, and many who have extended their roles to deliver direct patient care, education and research. There has been little, if any, comparison with haemophilia nurse roles internationally, nor of the impact of these roles on patient reported outcomes. This paper reports the results of an international survey, of 297 haemophilia nurses from 22 countries, describing current day practice and care. Many nurses work above and beyond their funded hours to improve care through research and evidence-based practice. While some are able to attend international meetings to report and discover this evidence, many due to financial constraints, are not. Others reported difficulty with communicating in English, which limited congress attendance. With on-line learning capability, sharing of best practice is now possible, and this approach should be a platform developed in coming years to further enhance haemophilia nursing practice and ultimately patient care.