Haemophilia is a bleeding disorder in which those affected suffer repeated spontaneous or trauma-induced bleeding episodes. Repeated bleeds can lead to joint damage and subsequent disabling arthropathy. For 40 years, clotting factor replacement as intravenous therapy has been administered either as prophylaxis or to treat bleeds [1,2]. The physical limitations and high degree of self-management skills needed, affect patients’ autonomy and eventually quality of life [3,4]. This and the subsequent advent of comprehensive care centres and has revolutionized haemophilia care, creating the need for a highly skilled and specialized nursing workforce to deal with the complexity of haemophilia care [5,6].
Although, there are notable regional differences across Europe, the haemophilia nursing role has adapted in response to the developments in care opportunities and the associated challenges of viral contamination. In a report entitled ‘An Overview of the Role of Nurses and Midwives in Health Leadership in Europe’, the NHS Institute for Innovation and Improvement and the European Hospital and Healthcare Federation (HOPE), found broad consensus in the fundamental role of the nurse across Europe but not with most specialist nursing roles [7]. This influential report also highlights the need for a more coordinated development of nursing clinical leadership in the face of increasing health demand coupled with the pace of technological innovation.
Although a comprehensive evaluation of the role of the haemophilia nurse across Europe has not been undertaken, there have been some national initiatives such as the UK Haemophilia Nursing Association competency framework [8, 9]. There are also a number of evidence-based nursing procedures in relation to bleeding pathology that are well described in the literature [10, 11, 12]. The task for haemophilia nurses across Europe is to evaluate the specialist nurse role. The competencies and skills the haemophilia nurse needs in order to provide high quality care, are not fully defined. Therefore, a broad scoping exercise was undertaken to assess and quantify haemophilia nursing care in Europe.
Materials and methods
A web-based survey in English was sent to known networks of haemophilia nurses working in Europe. This survey included questions concerning the haemophilia treatment centre, educational level, work activities, knowledge/ expertise, future development and characteristics of the respondents. Each nurse working with haemophilia patients and allied bleeding disorders was asked to respond to the survey. Respondents were asked to forward the survey to other nurses, to attain a high response rate.
Analysis
Due to some missing items, percentages per answer were calculated proportional to the number of answers available per question, for the descriptive statistics. The chi-squared test was used to compare categories with each other and observe differences. Differences were considered significant at a P<0.05. The computer software Excel (2007 version) was used for count data and SPSS (Version 21, SPSS Inc., Chicago, IL, USA) was used for the statistical analysis.
Results and discussion
In total, 153 nurses received the survey and were asked to forward this to their haemophilia nurse colleagues (Figure 1). Some 94 nurses in 14 countries in Europe (United Kingdom, Netherlands, Germany, Sweden, Ireland, Switzerland, Norway, Italy, France, Finland, Denmark, Belgium, Austria, and Bulgaria) replied to the survey. Characteristics of the respondents are provided in Table 1. Most (62%) of the haemophilia nurses had more than 20 years’ experience as a nurse, however 85% had less than 20 years’ experience in haemophilia. The educational level varied; 41% had a nursing qualification (non-degree), 35% had a Bachelors degree in nursing and 24% had a Masters degree. Not all nurses were working full time with haemophilia patients, 50% of the nurses had other nursing activities outside of haemophilia.
Table 1
Characteristics of nurse respondents
Current practice
The context of where nurses worked in Europe was largely comparable; Table 2 provides a short overview of the settings in which haemophilia nurses work. Approximately 20% were in centres that treated only children and 26% in centres that treated only adults. The remainder were in centres that treated both. All reported good access to treatment, 99% of the centres offered on-demand treatment, prophylaxis and home treatment. Furthermore, the number of severe patients differed per centre.
Core activities
Activities reported by over 80% of respondents were defined as core activities of the (European) haemophilia nurse, and have been divided in four main domains; treatment, education and support, coordination of care and research (Table 3). Most nurses prepared and administered factor replacement therapy, using different means of access; in some countries nurses were not permitted to cannulate. Providing education and advice also featured highly in the core activities with education about haemophilia to a range of recipients, and telephone consultation, being the most common aspects. Coordination of multidisciplinary care, including referral to other specialities and organizing care outside the hospital setting are tasks frequently undertaken by haemophilia nurses. In the research domain the only element that was rated as core was assistance with clinical trials (80%), Nurse-initiated research was not a core activity but at 35% was relatively high. As expected this percentage increased amongst those nurses with an MSc (44%, P=0.01). However these results are somewhat affected by the higher response rates from the UK and the Netherlands where most nurse-led research was reported (UK (29/47, nurses 62%) and the Netherlands (5/10, 50% nurses).
Table 3
Activities of nurse respondents
Gaining knowledge and future development
Haemophilia nurses learned most of their expertise and knowledge from haemophilia nursing courses (16%), international congresses (15%) private study (15%) and from their nurse colleagues (21%) or haematologist (19%) (Figure 2). Almost all nurses stated that they would like to develop in their work, e.g. study at masters level have more responsibility, conduct nurse-led research and have more time to explore these activities.
Discussion
To our knowledge, this is the first assessment of haemophilia nursing care in Europe. Nurses working in haemophilia generally had extensive experience as a registered nurse, and most had considerable experience in haemophilia care. Treatment modalities in Europe were comparable, and most nurses worked with haemophilia patients exclusively. The core activities of a haemophilia nurse were: prepare and administer medication, venepuncture and CVAD-use, providing education and telephone consultation, coordination of (multidisciplinary) care and assist with clinical trials. Furthermore, 35% stated that they initiated and performed research. Almost all nurses mentioned that they would like to grow in their work in the future, like studying at Masters level, to have more responsibility to conduct research.
The study had some limitations. The survey was provided only in English and it is most likely that nurses who are able to read the English language replied to the email. There was a high response from the Western European countries, but the Eastern European countries are underrepresented and so the results are probably less applicable to the eastern side of Europe. Futher research on the work of haemophilia nurses in this area is necessary.
Greater understanding about the haemophilia nurse role could be obtained from the International Council of Nurses Framework for Competencies for the Nurse Specialist [13], which defined the nurse specialist as: “a nurse prepared beyond the level of a generalist and authorised to practice as a specialist with advanced expertise in a branch of the nursing field”. Specialist practice includes clinical expertise, teaching, administration, research and consultant roles. These roles are comparable to those demonstrated in this study. Therefore, the authors believe that the haemophilia nurse specialist is a more proper term for nurses who work within haemophilia.
This paper serves as a starting point for haemophilia nurse delivered care and could be used as guidance for centres in Europe. Furthermore, this current practice analysis can be used to build a framework for developing a haemophilia nursing curriculum and European principles for haemophilia nursing care.
Further research is needed to explore the ratio of nurses per patient in order to set international standards. In addition, it is important to investigate specific nursing procedures that could lead to national or international standards for providing care.
Conclusion
The role of the haemophilia nurse requires greater exploration. The present survey represents a broad scoping exercise to assess and quantify haemophilia nursing care in Europe. Most haemophilia nurses had extensive experience as a registered nurse, and in haemophilia care. Treatment modalities in Europe were mostly comparable and most nurses saw haemophilia patients exclusively. The core activities (rated over 80%) of a haemophilia nurse were: to prepare and administer medication, venepuncture and CVAD-use, providing education and telephone consultation, coordination of (multidisciplinary) care and assist with clinical trials. Nurses have many future plans, e.g. studying at masters’ level, have more responsibility, conduct nurse-led research and have more time to explore these activities. These results may serve as a starting point for developing a haemophilia nursing curriculum and eventually formalised European principles of haemophilia nursing care.