Abstract Women who have the gene variant for haemophilia are labelled solely as ‘carriers’ unless they have a factor VIII activity of ≤40%. This term, which describes an individual who can pass on a ...disorder but are themselves unaffected, reflects a legacy that extends from the 18th century to the present day. There is strong evidence that women labelled as carriers experience heavy periods, joint damage, pain and impaired quality of life. The label ‘carrier’ does not recognise this burden and is associated with guilt, stigma and difficulty accessing care. People living with a long-term disorder should now be described using person-first terminology and it is common to see the term ‘people with haemophilia’. The term ‘carrier’ should be limited to its application in genetics and not used as a catch-all label for women with haemophilia.
Research studies have described the morbidity associated with inherited bleeding disorders such as hemophilia and von Willebrand disease in women, but their effect on daily living has long been ...underrecognized. This systematic review sought to document the lived experience of women with a bleeding disorder by assessing research findings on quality of health care, socioeconomic factors, and mental health.
A systematic search was carried out in Web of Science, the Cumulative Index to Nursing and Allied Health Literature, and PubMed on July 31, 2020. References were hand searched. Abstracts of the 2019 and 2020 congresses on bleeding disorders were hand searched. Key journals were screened for relevant studies published after the search date until the analysis was completed on December 7, 2020.
Of 635 potentially eligible publications, 27 published since 1998 were selected for review. Most studies were of moderate to high quality but meta‐analysis of quantitative studies was not possible due to difference in outcomes and assessment.
Women with a bleeding disorder experience obstacles to accessing care, difficulties living with their disorder, interference with schooling and work, and poor mental health. Diagnostic delay and lack of recognition of symptoms mean treatment and support may not be available. Where comparisons with controls were made, women’s negative experiences were greater than those of men.
Women with bleeding disorders experience major negative impacts of their disorders on daily life and mental well‐being. Many of the challenges identified in earlier research are evident in more recent studies.
The use of continuous glucose monitoring technology has improved pregnancy outcomes for women with type 1 diabetes, according to the National Pregnancy in Diabetes audit report for the period ...2021–2022. However, there were no such gains for women with type 2 diabetes. Steve Chaplin reports.
Mirikizumab (Omvoh) is an anti‐IL‐23 monoclonal antibody for the treatment of moderate to severe ulcerative colitis. This article outlines its administration, clinical trial efficacy, adverse effects ...and place in therapy.
Atogepant (Aquipta) is a new oral CGRP‐receptor antagonist indicated for the prophylaxis of migraine in adults. This article discusses its indication, efficacy and adverse effects.
Mavacamten (Camzyos) is a cardiac myosin inhibitor indicated for the treatment of symptomatic obstructive hypertrophic cardiomyopathy. This article discusses its efficacy, adverse effects and place ...in therapy.
Eptinezumab (Vyepti) is a new CGRP monoclonal antibody for migraine prophylaxis that is administered by intravenous infusion. This article discusses its place in therapy, clinical trial efficacy and ...adverse effects.
Deucravacitinib (Sotyktu) is a new small‐molecule TYK2 inhibitor for the treatment of adults with moderate to severe plaque psoriasis. This article outlines its mode of action, efficacy and place in ...therapy.
The National Clinical Guideline for Stroke provides evidence‐based guidance to improve the quality of care for stroke patients in the UK and Ireland. This article summarises the main changes that ...have been made in the 2023 update of the guideline.
Findings from the latest National Diabetes Audit of the NHS Diabetes Prevention Programme (DPP) may point the way forward in reducing the incidence of type 2 diabetes.
As shown by the audit, inequity ...of outcomes and variations in care processes still prevail, along with the need to refer people with non‐diabetic hyperglycaemia to the DPP. The audit report's recommended measures to address these could be a promising route forward. Steve Chaplin reports.
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