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Open access

Steve Chaplin

Abstract

Tranexamic acid inhibits fibrinolysis by competitively blocking the lysine binding sites of plasminogen, inhibiting binding between fibrin and plasminogen, and activation of plasminogen. It also competitively inhibits tissue plasminogen activator and inhibits plasmininduced platelet activation. The synthesis of tranexamic acid was first reported in 1962. It is used to treat or prevent excessive blood loss from trauma, surgery, and in various medical conditions including haemophilia and heavy menstrual bleeding. As a medicine affecting coagulation, it is listed in the World Health Organization’s List of Essential Medicines. Tranexamic acid remains a versatile and inexpensive agent with potential benefit in health services from the lowest to highest income countries. This pharmacy review focuses on the evidence base to support the use of tranexamic acid in acquired and inherited bleeding disorders to reduce bleeding complications.

Open access

Kate Khair and Steve Chaplin

Abstract

Long-standing inhibitors present many day-today difficulties for the affected individual; the unpredictability of bleeds, bleed management, pain and treatment efficacy all affect quality of life. This study explored these issues through focus groups of affected individuals aged 16-25 in the UK. The data from the focus groups was analysed for recurring themes, which were coded under three umbrella headings: ‘daily impact’, ‘education and future’ and ‘resilience and support’. Participants felt isolated through geography and being extra ‘rare’ within the bleeding disorders community; used pain as a gauge of bleed resolution, often without use of analgesia; described transition to adult care as particularly worrying; and explained the potential impact of living with an inhibitor on future career options. Peer-to-peer networking could provide emotional support for these young adults, who could also be role models for the future. Despite the burden of living with an inhibitor and its treatment, participants described a good quality of life from their own perspectives. With new therapeutic options for these individuals on the horizon, they look forward to a future with fewer bleeds and less pain.

Open access

Debra Pollard and Steve Chaplin

Abstract

Haemophilia treatment is characterised by intravenous infusions of clotting factor concentrates, with nurses frequently taking the lead role in administration, patient training and patient care. In recent years, a number of novel factor and non-factor-based therapies delivered by subcutaneous injection have been developed. These therapies are now undergoing clinical trials and will shortly be available in clinical practice. The coming era of at least some haemophilia treatments being delivered by subcutaneous injection clearly represents a significant change not only for patients (for whom they may be more convenient) but also for haemophilia nurse practice, particularly with respect to bleed and surgical management plans, and hence for nurse training and education. This review describes evidence-based guidance on subcutaneous injection technique and summarises the implications for nurses.

Open access

Kate Khair and Steve Chaplin

Abstract

Wider access to modern treatment of haemophilia has led to a growing interest in the family’s role in management. An increasing amount of research has sought to understand the psychosocial impact of living with a child with haemophilia. Understanding how such demands affect parents and families who live with the daily threat of bleeding can help health professionals to provide effective support. A literature review was undertaken with the aim of summarising the key findings from studies published since 2000. The literature review describes many common themes from observational studies that were generally consistent with those emerging from interviews of parents of children with haemophilia. Few intervention studies were identified. Overall, this evidence shows that raising a child with haemophilia can be challenging for parents and the family. Quality of life is impaired in the parents of a child with haemophilia and that many aspects of life are affected. However, providing care can also be rewarding and programmes of support, education and appropriate treatment evidently improve the well-being of parents and families.

Open access

Kate Khair and Steve Chaplin

Abstract

The terms ‘nurse-led service’ and ‘nurse-led care’ are often used, but are frequently not well defined. As health care delivery evolves across the world and struggles to cope with changes in medical care and with the rising number of people living longer with long term conditions, it is frequently suggested that more care should be delivered and coordinated by nurses who have the most day-to-day contact with affected individuals and their families. This paper addresses the notion of modern ‘nurse-led’ care in the 21st century, with a focus on haemophilia. Haemophilia is one specialty in which totally nurse-led and delivered care could become a reality, there is already evidence from both developing and developed countries of nurses providing excellent and innovative haemophilia care.