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Open access

Wojciech Lipski

Abstract

The article presents a study on delusory changes in perceiving one’s own body in a patient with mental illness. The story of Daniel Paul Schreber is an example of strongly experienced delusions, which, in the described form are contemporarily attributed to schizophrenia. This story, coming from over one hundred years ago, is still vivid, and actualizes the image of mental illness and suffering connected with it in the thoughts of the reader. The author presents these characteristics focusing mainly on the symptoms of dysmorphognosia or dysmorphophobia, which became an important element of delusional constructs. He describes the nature of the experienced symptoms in detail, documenting them with extensive quotations from „Diary of a mental patient” written by such patient. The study of mental illness presented in the paper reveals the meanders of distorted psyche and some changes that are happening in it under the influence of delusions. It is a study undertaking the issue of describing and understanding the symptoms of mental disorders.

Open access

Oleg Gorbaniuk, Andrij Mirowich, Władysława Leoszko, Julia Gorbaniuk, Aleksandra Kordon, Maria Świderska, Olena Kuts and Anna Korczak

Abstract

The aim of the psycholexical study was to classify the terms describing individual differences in the Ukrainian language.

Method. To accomplish this objective, we analysed 220,000 entries included in a universal dictionary of Ukrainian and identified 20,024 terms – adjectives, participles, type-nouns, and attribute-nouns – used to describe human characteristics. The identified person-descriptive terms were classified by a team of five trained judges into 13 categories and subcategories. The judges’ taxonomic decisions were tested for validity and interjudge agreement.

Results. This procedure yielded lists of Ukrainian personality descriptors, consisting, respectively, of 2,426 adjectives, 2,255 participles, 1,653 attribute-nouns, and 1,474 type-nouns. The analysis of semantic redundancy of terms representing different parts of speech but having the same common morpheme among dispositional descriptors identified a total of 1,634 morphemes that differed in terms of meaning. The analysis identified 212 (22.0% of morphemes) type-nouns that could not be replaced by any different part of speech with the same morpheme to describe the same personality trait.

Conclusions. Ukrainian personality lexicon has a comparable or higher diversity of personality-descriptive vocabulary, attested to by the presence of 96% Big Factors markers from international comparative analyses of psycholexical structures of natural languages. The results of the study contribute to the debate on universals in the description of individual differences and constitute the basis for future questionnaire-based studies aimed at identifying the psycholexical structure of the Ukrainian language.

Open access

Laura Savini, Radoslaw Kaczmarek, Declan Noone, Paul Giangrande, Geoffrey Dusheiko and Brian O’Mahony

Abstract

In the 1980s and 1990s, thousands of people with bleeding disorders (PWBD) across the world were infected with HIV and hepatitis C virus (HCV) through contaminated treatment products. The extent of the infection, as well as the needs of those still living with HCV, were never properly assessed. The purpose of our survey was to identify how many PWBD were infected with HCV in Europe, as well as their health status and needs. HCV infection was defined as any person with a bleeding disorder who was exposed to the virus and seroconverted to become anti-HCV antibody positive. The survey also looked at testing and treatment availability. Between December 2016 and March 2017, the survey was distributed to 45 national patient organisations in the European Haemophilia Consortium (EHC), who were encouraged to respond with the support of a local hepatologist. The data gathered led us to estimate that some 15,000 people with bleeding disorders were infected with HCV in the 30 countries that responded. Although some countries have detailed records of patients with HCV, most - including some with national haemophilia registries - were unable to provide exact numbers of initial infections, HIV coinfection, survival and SVR rates. Responding countries reported varying degrees of monitoring for disease progression, as well as extremely divergent access to new direct-acting antivirals, with only eight countries prioritising PWBD for treatment. With liver disease and hepatocellular carcinoma being among the main causes of death in an aging bleeding disorders population, this survey identifies a clear gap in care. It is a frustrating paradox that today, in many European countries PWBD, such as haemophilia, may live long and productive lives due to much-improved access to factor replacement therapy, yet die prematurely of a curable disease such as hepatitis C. It has been demonstrated that HCV eradication in PWBD can be achieved through national commitment, especially when the patient population is limited and HCV eradication could be achieved in the short-term. The eradication of HCV in PWBD in Europe is an idea whose time has come.

Open access

Allison Greig

Abstract

People with Inherited Bleeding Disorders (IBD) are often prescribed a course of Tranexamic Acid (TXA) mouthwash for five to seven days following dental procedures to reduce the risk of bleeding. Informal discussions with patients suggested that many do not complete the prescribed course of treatment. A literature review indicated that TXA was prescribed inappropriately for procedures with a low bleeding risk, and that there are inconsistencies in the recommended dose, mode of administration and duration of TXA for this patient group. A new protocol was implemented in the haemophilia centre at St George’s University Hospital NHS Foundation Trust, London, to rationalise the prescribing of TXA in dental procedures. A study was conducted to explore patients’ experience of this new guideline in the form of a service evaluation. Structured telephone interviews were completed following 39 dental procedures to collect data on concerns about bleeding; whether TXA was taken as prescribed and reasons for non-adherence; and any unplanned post-operative treatment. The financial impact of the new guideline was also explored. Patients were supportive of the new regimen, although almost half (46%) did not complete the prescribed course of TXA. The majority (37/39) were prescribed tablets rather than mouthwash. No patients required additional unplanned haemostasis support to control haemorrhage. Cost savings were made by replacing a five- to seven-day course of TXA mouthwash with a three-day course of TXA tablets. Although the data collected from patient interviews supports the new guideline, patients appear to be making decisions about taking TXA based on their own experience rather than following the prescribed regimen. Prescribers should support patients to make informed decisions about their medicines and incorporate patient experience into individualised regimens. Given the lack of bleeding complications experienced in this cohort of patients, it is possible that TXA is being overprescribed. Further work exploring how patients with IBDs make decisions about taking medicines is needed.

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

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, Kate Khair, Cléa Percier, Yen Wong and Robyn Shoemark

Abstract

Management of haemophilia involves on-demand or prophylactic intravenous administration of recombinant or plasma-derived replacement clotting factors or bypassing agents. These products are provided as lyophilised powder and diluent, which need to be mixed to produce a solution for infusion. While this process has previously involved multiple time-consuming steps, several reconstitution systems are now available to make mixing easier and more convenient. This study aimed to investigate experience of use and perceptions of the Novo Nordisk MixPro® mixing device among patients and carers using activated recombinant factor VII (rFVIIa) or recombinant factor VIII (rFVIII) with MixPro, and nurse specialists who were either familiar or unfamiliar with MixPro. Nurses were asked to simulate the preparation of an inactive solution using MixPro. Semi-structured interviews were used to gain insight into participants’ opinions of mixing systems in general and their perceptions of MixPro. Likert scales were used to rate the performance of MixPro against predefined characteristics of mixing systems, and the importance of the predefined characteristics to the design of a mixing system. Patients/carers and unfamiliar nurses identified low contamination risk when mixing as the most important characteristic of a mixing system; the most important criterion for familiar nurses was confidence that patients/carers could prepare the system correctly. MixPro was perceived to perform very well overall, particularly in parameters identified as most important. It was described as being user-friendly, simple and quick; its compactness and portability were highlighted as advantages for storage and travel. The main disadvantages reported related to its small components. The majority of nurses said that they were highly likely to recommend MixPro to their patients.

Open access

Jenique Bailly and Johnny Mahlangu

Abstract

With improved replacement therapy, people with haemophilia (PWH) live longer, with the consequent emergence of age-related chronic diseases not previously seen in haemophilia. The prevalence of cardiovascular disease and associated complications in older PWH appears to be on the rise. Management of myocardial infarction in a person living with severe haemophilia presents a particular challenge, as treatment options often include antiplatelet therapy, anti-coagulation and invasive procedures. Current guidelines for managing acute myocardial infarction are not specifically designed for people with bleeding diatheses such as haemophilia. We present a patient with severe haemophilia A on extended half-life factor VIII prophylaxis who developed an acute ST-elevation myocardial infarction (STEMI), discuss his clinical management and highlight lessons learned.

Open access

B. Sulochana, Roseminu Varghese and Girish Menon

Abstract

A person with haemophilia is at risk of intracranial haemorrhage caused by spontaneous or traumatic events, potentially resulting in long-term disability. Early initiation of timely treatment is essential to prevent this. In developing countries, morbidity and mortality is common in intracerebral haemorrhage (ICH) cases with haemophilia as a result of patients and family members having inadequate knowledge, lack of awareness regarding referral, lack of availability of treatment products, and delays in the treatment decision. These barriers can potentially be managed by the haemophilia nurse taking responsibility for the coordination of care. This case report addresses the nurse-coordinated care of a haemophilic patient with ICH in a developing country, and may provide insight into the benefits of a haemophilia nurse undertaking a coordinating role.

Open access

Anupam Dutta and Anup Kumar Das

Abstract

VELSEAL-Tis an innovative haemostatic medical device for the control of bleeding. Incorporating a clotting agent (thrombin) and anti-fibrinolytic agent (tranexamic acid), it enables rapid coagulation when blood flows into the dressing, leading to sealing and stabilisation of wound surfaces. A 36-year-old known to have mild haemophilia A presented with profuse bleeding from the forehead after injury following a fall on concrete surface. He attended hospital after 18 hours of injury as bleeding continued as soon as pressure was released from the injury site. A VELSEAL-T patch was applied to the injury site with the patient’s full consent. The bleeding stopped after 60 seconds, but the patient was instructed to hold the patch in place for a further 60 seconds. After two minutes of tight pressure application, there was no more oozing of blood from the injury site. This case shows that VELSEAL-T can be used as an aid in stopping external bleeding in haemophilia patients. Further trials should be undertaken to evaluate the safety and efficacy of this product.