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Sharon Alavian and Wendy Hutchinson

Abstract

Hypertension is a well-known risk factor for ischaemic heart disease and cerebrovascular events. Globally, there is a drive to try to reduce salt intake. In an older population, where hypertension is likely to have a high prevalence, are health care professionals aware of the sodium content in replacement factor?

Open access

Sharon Alavian, Christine Norton and Shokri Othman

Abstract

Little is known about the experience of living with mild haemophilia. Clinically, many patients do not present promptly for health care following a bleed. Our aim in this study was to gain an understanding of the experiences of people living with mild haemophilia, and what influences their decision to access or not access healthcare following a bleed. A qualitative phenomenological study using semistructured, digitally recorded interviews, analysed using Colaizzi’s interpretive phenomenological analysis. Eight patients with mild haemophilia, median age 52 (range 26- 83) were interviewed. Two themes emerged: Accessing healthcare: Participants managed small bleeds or injuries at home and employed the RICE (rest, ice, compression, elevate) principle. The majority employed a “wait and see” strategy to judge whether the bleed was significant. Pain helped them determine whether they needed to access healthcare services. There was strong resistance to attending an Accident and Emergency (A&E) department because of long waiting times, perceived lack of A&E staff knowledge about managing haemophilia, and fear of not receiving medication promptly. Living with mild haemophilia: The time at which participants first knew they had mild haemophilia ranged from early childhood to adulthood. When sharing their haemophilia status with friends, schools and employers some felt supported, while others were more reticent, finding that restrictions were placed on them once it was disclosed. The impact of living with mild haemophilia varied from very little to a great deal. For most, it did not prevent active involvement in sports. Most were not concerned about having children, but some feared haemophilia being passed on to future generations. Work is required to encourage people with mild haemophilia to access health care more promptly following a bleed. Guidelines regarding the care and management of haemophilia need to be readily available to A&E staff. Recognition is needed that “mild” may not appear mild to the patient.

Open access

Sharon Alavian, Wendy Hutchinson, Abigail Morris, Heather Williams and Debra Pollard

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.

Open access

Kate Khair, Anica Phillott, Christine Loran, Debra Pollard, Claire Forrester, Sharon Alavian and Susan Hook

Abstract

Introduction: Haemophilia causes joint, muscle and soft tissue bleeds, often leading to pain and disability. These effects can have a significant impact on patients’ well-being and quality of life. There is a need to better understand patient priorities and concerns so that haemophilia healthcare professionals can develop strategies to meet these needs with individuals and their families. Methods: The HaemophiliaLIVE ethnographic study enrolled 16 families from four comprehensive care centres in the UK. Each family received a kit consisting of video recording equipment, seven sealed envelopes each containing a “secret question” and pre-paid envelopes for secure return of the video memory cards. Video footage was recorded daily to examine the impact of haemophilia. Results: Over 30 hours of recorded footage was obtained from 10 families with children/young adults, two young adults, and three older men. Six participants had a current inhibitor. The key themes identified were impact on: family relationships, school, employment and travel. The older participants and those with inhibitors reported that pain was a major factor in their day-to-day lives, and also expressed fear about loss of mobility and pending surgery. Although parents expressed anger and sadness about their child’s haemophilia, those with haemophilia were generally positive about their life experiences. Many reported that their employers were understanding and made additional provision for their haemophilia. Conclusions: Haemophilia has a significant impact on patients and their families. This research provides insight on the support needs of individuals and families.