Abstract
Introduction and objective
In the UK, the National Service Specification for haemophilia stipulates that all patients with mild inherited bleeding disorders must be reviewed annually by their haemophilia centre. For those patients who rarely experience problems relating to their bleeding disorder, attending a yearly hospital-based appointment may be viewed as a low priority. This can result in missed appointments and disconnection from their haemophilia centre, leading to poor understanding of how to manage their condition in emergencies, or when surgical or other invasive procedures may be necessary. The inherited nature of these conditions also has implications for reproduction, and it is of vital importance that the risk of bleeding around labour, delivery and the neonatal period are fully understood and mitigated against. The introduction of a structured, nurse-led telephone clinics across the North London Adult Haemophilia Network (NLAHN) offered an alternative method for patients to be reviewed. This strategy was then evaluated to assess whether the needs of patients were being fulfilled.
Materials and methods
Clinical nurse specialists (CNS) from the NLAHN devised a short service evaluation questionnaire with Likert scales and one open question. Patients across the NLAHN sites who had received a telephone review in 2016 were sent an anonymised questionnaire, with a stamped addressed envelope and a six-week return date.
Results
514 questionnaires were distributed, 174 were returned, and 18 were excluded as returned incomplete, giving a return rate of 28%. Overall, 89% (139/156) of patients rated the new service between excellent and very good; 89% (139/156) reported that they were very satisfied with the information received in the review; and 95% (149/156) were happy to continue to receive telephone reviews.
Conclusion
Patients found the telephone reviews a viable alternative to traditional hospital-based appointments. The telephone clinics are more convenient for patients in terms of time and resources; they also helped those surveyed to re-engage with their haemophilia centre, ensuring continued education about their condition and the services offered. Overall attendance rates for the follow-up of patients with mild bleeding disorders have improved, with a reduction in traditional clinic appointments for this group. This has an ongoing positive impact on waiting lists and the financial burden of missed hospital appointments without impacting patient care.
