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Abstract

Introduction: Introduction: Both dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD) are important dementia syndromes that overlap in their clinical features and clinical course, neuropathological abnormalities, and also therapeutic approach. Nevertheless it is still unclear whether DLB and PDD are two different disorders that require differentiation or are one clinical entity within a spectrum of Lewy body disease. Currently these disorders are mainly distinguished on the basis of the relative timing of the onset of symptoms of dementia and parkinsonism. The present paper presents current concepts on the pathogenesis of both disorders and their possible overlap.

Material and methods: Online databases in the field of DLB and PDD were searched for to find potentially eligible articles. Only most recent articles published after the year 2000 were chosen.

Results: The clinical features of DLB and PDD are similar and include dementia with hallucinations and cognitive fluctuations, as well as parkinsonian signs. Also cognitive deficits are similar in PDD and in DLB, with predominance of executive dysfunction, visual-spatial deficits and memory impairment. Neuropathological changes in both disorders involve the presence of Lewy bodies and Lewy neurites within brainstem, limbic and neocortex, as well as loss of midbrain dopamine cells, and loss of cholinergic neurons in the nuclei of ventral forebrain.

Conclusions: Similarities in clinical manifestation, neuropsychological deficits and neuropathological abnormalities may suggest that both DLB and PDD are two different phenotypes of the same disorder. This review article presents current knowledge on similarities and differences between these two clinical entities and raises the question whether they require differentiation or not.

Abstract

Objective: The purpose of the study is to analyze and define the content, specifics, and procedures of social and psychological work with citizens who have expressed a desire to become mentors for orphans.

Introduction: In Ukraine, there are more than 750 foundations of institutional care and upbringing of children, in which approximately 106,000 children live. Only 8% among them have the status of orphans and children deprived of parental care; the other 92% have parents, but due to some difficult life circumstances of parents or presence of special needs or disability in children, they cannot live or be brought up in the family. It means that 92% of children without the status of orphans or children deprived of parental care cannot be adopted or placed for living and upbringing to other forms of family placement (guardianship/care, foster family, family-type orphanage). Along with this, out of 8% of orphan children and children deprived of parental care, there are no opportunities to be accommodated in any family forms of upbringing the following children: teenagers and youngsters, brothers and sisters from families with many children, and children with disabilities. In such children, close emotional relationships with meaningful, constant adults, which is a vital necessity for their psycho-emotional development and well-being, have been lost or were not formed at all. Accordingly, the introduction of mentoring for orphans and children deprived of parental care who live in relevant institutions is motivated by the necessity to satisfy the need of every child in emotional support, assistance and protection by a significant, authoritative person, and friend.

Methods: The study uses an experience which was gained during the realization of the project as the author-developer of the methodology of socio-psychological work with citizens and children concerning preparations for mentoring and training for both coordinators and mentors of the Mentoring Program in cooperation with specialists of the “One Hope” non-governmental organization; in the role of educator for the preparation of coordinators for the Mentoring Program implementation, as well as in the role of expert during the implementation of Mentoring Program by the community organization “One Hope” during the 2009-2016 period [1]. Also, authors participated in developing of the mentors preparing program over orphans and children deprived of parental care in order to receive approval at the state level.

Results: Mentoring for orphans and children deprived of parental care residing in institutions has been implemented in Ukraine since 2009 by the “One Hope” (“Odna Nadia”) public organization in cooperation with the Kyiv City Children’s Service and the Kyiv City Center of Social Services for Families, Children and Young People. The project “One Hope” was launched in the city of Kyiv and the Kyiv region during 2009-2016. Since 2016, mentoring as an individual form of support and assistance for a child living in a residential institution has been introduced in Ukraine at the state level.

Conclusions: If an orphan child or a child deprived of parental care is unable to live and being brought up in a family, then the mentor’s role in the life of this child is of paramount importance. This is due to the fact that such a form of individual support through mentoring will facilitate the preparation of every orphan child for independent living in the future.

Abstract

Paranoid schizophrenia is a chronic, psychotic disorder which can be treated with long-acting injectable (LAI) antipsychotic drugs. There are risperidone (Risperdal Consta®), olanzapine (Zypadhera®), paliperidone (Xepilon®) and aripiprazole (Abilify Maintena®) currently available.

The aim of this study was to present a case history of the patient to whom monthly injections of aripiprazole effectively prevented both relapses of psychotic symptoms and hospitalizations.

Case report: A 55-year-old male patient with a 13-year history of paranoid schizophrenia has been effectively treated with aripiprazole (LAI) (400mg, every 4 weeks). During the last 8 years of treatment his mental state has been stabilized, without any acute psychotic symptoms and without any anxiety, or violent behaviours. Moreover, there have been no psychotic symptoms, or suicidal thoughts, or tendencies recordered. Therefore, no hospitalization has been required. However, despite the treatment, negative symptoms such as blunted affect, cognitive dysfunction and social withdrawal have been sustained.

Discussion: The available articles on aripiprazole (LAI) treatment indicate that it was effective in reducing the positive and negative symptoms of schizophrenia, as well as reducing the frequency and duration of hospitalization. However, the case report of a patient who has not had relapses of psychotic symptoms and suicidal thoughts and has not been hospitalized during 8 years of treatment with aripiprazole (LAI) has not yet been reported.

Conclusions: Regular, long-term injections of aripiprazole (LAI) are very effective at preventing positive symptoms of schizophrenia development and preventing both suicidal thoughts and hospitalizations. Therefore, treatment with this drug in everyday practice should be increased.

Abstract

Background

Recent treatment option advances in haemophilia care have contributed to a discourse of ‘normality’ around the condition, in which people with haemophilia (PwH) are increasingly expected to live ‘normal’ lives unburdened by their condition.

Aim

The aim of this article is to explore notions of ‘normality’ in the experience of haemophilia across generations. This is one of the main themes identified in a large-scale ethnographic study of the everyday life of PwH, a broad qualitative investigation of beliefs and experiences related to condition, treatment, and personal ways of managing the condition.

Methods

The study used ethnographic research methods. Five haemophilia experts helped frame the research design by contributing historical and disease area context prior to the initiation of field research. PwH were recruited through patient organisations in five European countries (Italy, Germany, Spain, UK and Ireland). During field research, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of PwH interactions with friends, family, and health care professionals (HCPs). They also conducted on-site observation at haemophilia treatment centres (HTCs) and HCP interviews. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenges mapping, and clustering exercises. This article explores findings related to the discourse of ‘normality’ and is thus focused on a subset of the data from the study.

Results

Fifty-one PwH, aged 1.5 to 82 years, were interviewed and followed in their daily lives. Six treatment centres were visited, and 18 HCPs were interviewed. The study found that a discourse of present day ‘normality’, as compared to a difficult past, is ingrained in the haemophilia community. As a result, unlike most older PwH (40+), younger PwH (under 18) are not always taught to acknowledge the severity of their condition or how to sense bleeds (disease-related embodied knowledge), and risk unknowingly doing long-term damage to their bodies. Twenty-seven per cent (n=7/26) of younger PwH (children, teenagers) in the study were observed or described as engaging in high-risk behaviours in the short term indicating a lack understanding of long-term consequences.

Conclusions

These findings suggest that the discourse of ‘normality’ presents a number of challenges that need to be addressed, namely the potential for younger PwH to be unaware of bleeds and the general underreporting of haemophilia-related complications and limitations. One way forward in realising the full potential of advanced treatment could be to teach young PwH, through evidence-based initiatives, how to develop an embodied sense of their bleeds. Furthermore, if the current state of life with haemophilia is accepted as finally ‘normal’, then progress in further improving care may be stalled. It is important that remaining and new challenges are recognised in order for them to be acted upon.

Abstract

Introduction

People with haemophilia (PwH) experience recurrent bleeds in weight-bearing joints. Optimal management for people with severe haemophilia involves prophylaxis with factor VIII or IX, which helps to reduce the risk of bleeds and joint damage. However, this is expensive and frequently not an option in economically developing countries, where on-demand treatment is more commonly used as bleeding occurs. PwH with moderate and mild haemophilia are also treated on demand. Pain from bleeds and arthropathy is common in PwH; it is recognised as a burden that impairs quality of life and can be challenging to manage.

Aims

This study aims to establish greater understanding of the experience of pain in PwH in different countries, the factors that influence this, and how pain is currently managed.

Methods

PwH attending haemophilia treatment centres (HTCs) completed an anonymous questionnaire about their experience of pain and pain-relief within the previous 28 days (up to 10 PwH per participating HTC).

Results

209 PwH from 20 HTCs in 11 countries participated in the study. The median age was 36 (range 8–84); 181 (86.6%) had haemophilia A, 25 (12.0%) haemophilia B, and three (1.4%) did not know; 148 (70.8%) had severe haemophilia, 28 (13.4%) moderate, and 31 (14.8%) mild. Twenty-eight (13.4%) had an inhibitor. The majority (n=121; 57.9%) were on prophylaxis; 61 (29.2%) were treated on demand; 20 (9.6%) used a combination; 7 (3.3%) did not know. 154 PwH (73.9%) experienced a total of 1,945 days of pain with severity on a visual analogue scale reported as 4.5. The most commonly reported sites of pain were joints and muscles. There was no significant difference in pain incidence between countries. Children aged less than 16 years reported the lowest amount of pain, with reported pain increasing with age in older respondents. Simple analgesia such as paracetamol was used but participants reported that it did not relieve pain. Alternative pain-relief strategies including rest, physiotherapy, walking aids, alcohol or marijuana were also used with varying effect.

Conclusions

Pain is common among PwH and increases with age. Age and developmentally appropriate pain assessment should be a part of routine haemophilia care.

Abstract

Background

With the major advances in treatment of haemophilia in recent decades, people with haemophilia (PwH) are more protected in their daily lives than ever before. However, recent studies point to persisting or increasing patient experience of uncertainty.

Aims

The aim of this article is to further investigate findings related to how PwH understand and cope with uncertainty around their protection in their everyday life, one of the main themes identified in a large-scale ethnographic study of the everyday life of PwH, including beliefs and experiences related to their condition, their treatment, and their personal ways of managing the condition.

Methods

The study used ethnographic research methods. Five haemophilia experts provided historical and disease area context prior to the initiation of field research. During field research, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of the interactions of PwH with friends, family, and health care professionals (HCPs). Study researchers also conducted on-site observation at haemophilia treatment centres (HTCs) and interviewed HCPs. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenge mapping, and clustering exercises. This article explores findings related to uncertainty and thus focuses on a subset of the data from the study.

Results

Fifty-one PwH in Italy, Germany, Spain, UK, and Ireland were interviewed and followed in their daily lives, and 18 HCPs were interviewed. Fifty-two per cent (n=26/50) of PwH in the study experience difficulties translating clinical understanding of protection into specific activities in everyday life. Many have developed their own mental models and care adaptations to navigate treatment uncertainy: these seldom match the medical community's view. These mental models of protection among PwH can cause distress and influence behaviour in a way that can limit possibilities, and/or increase risk. There is also a prevalent tension in the strategies PwH have for managing their protection in terms of day-to-day vs. long-term ambitions.

Conclusions

These findings on PwH's experience of treatment uncertainty suggest a need to develop tools and communication materials to help PwH better understand the protection provided by their treatment regimen and what that means practically for everyday life.

Abstract

Background

Recent improvements in approaches to treatment have opened a window of opportunity to redefine and expand the goals of treatment in haemophilia This article explores treatment culture in light of these improvements and its potential impact on the range of possibilitis in the lived experience of haemophilia.

Aims

The aim of this article is to further investigate findings related to how health care professionals (HCPs) approach haemophilia treatment and care, one of the main themes identified in an ethnographic study of the everyday life of people with haemophilia (PwH). This large-scale study investigated PwH's beliefs and experiences related to their condition, their treatment, and their personal ways of managing the condition.

Methods

The study used ethnographic research methods. Five haemophilia experts helped frame the research design by providing historical and disease area context prior to the initation of field research. In the field, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of the interactions of PwH with friends, family, and HCPs. Study researchers also conducted on-site observation at haemophilia treatment centres (HTCs) and interviewed HCPs. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenge mapping, and clustering exercises. This article explores findings related specifically to how HCPs approach haemophilia treatment and care, and is thus focused on a subset of the data from the study.

Results

Fifty-one PwH in Italy, Germany, Spain, UK, and Ireland were interviewed and followed in their daily lives. Eighteen HCPs from seven HTCs were interviewed, and on-site observation was undertaken at six of the HTCs. Most haematologists in the study ‘treated for stability’, rather than to guide PwH to overcome limitations. ‘Treating for stability’ here refers to an approach to haemophilia care that focuses on measuring success in terms of annual bleed rate, instilling a focus on mitigating risk, rather than an approach that allows PwH to overcome the limitations they face due to their condition. However, some haematologists had moved beyond treating for stability to instead treat for possibilities, enabling a better quality of life for PwH.

Conclusions

These results suggest that a culture of ‘treating for stability’ could be limiting progress in expanding the goals of treatment in haemophilia. Expanded metrics of success, more flexible approaches to treatment, and higher ambitions on behalf of PwH may be needed in treatment and care, in order for PwH to fully benefit from treatment advances and to increase their quality of life.

Abstract

Introduction: In recent years, numerous studies have focused on the analysis of the primary mechanisms and forms of therapy in children and adolescents with attention deficit hyperactivity disorder (ADHD). The analysis of such topics among similarly diagnosed young adults is only beginning to gain popularity. The present article attempts to answer the question of whether the level of individual temperament traits will predict an increase in the severity of ADHD symptoms in young adults.

Materials and methods: The questionnaire study involved 111 young adults aged from 18 to 28 (M= 23; SD= 2.12; 70 women and 41 men). Fifty-one people were included in the clinical group, and sixty were qualified for the control one. The participants of the study completed a health questionnaire and a structured diagnostic interview on ADHD symptoms in adults (DIVA 2.0) and a questionnaire for the diagnosis of basic, biologically determined dimensions of human personality (FCZ-KT (R)).

Results: The results indicate a significant role of four temperament traits that may be considered as specific risk factors for the aggravation of ADHD symptoms. These include briskness, rhythm, endurance and activity.

Conclusions: In Strelau’s Regulatory Theory of Temperament, the variability of temperament traits (in the Polish population) is attributed in 44% to genetic factors. The remaining 56% indicate non-genetic factors. The obtained results may indicate which factors are important in therapeutic work both in the group of young adults with ADHD symptoms, and may also constitute a source of information for parents or teachers regarding younger children with these symptoms.

Abstract

Introduction

Switching between clotting factor products is becoming increasingly common as product choice increases and financial pressure grows to choose the most cost-effective options. Guidance on carrying out the switch recommends a complex and long process that may benefit from being defined in a protocol. Haemophilia nurses may be responsible for managing product switches; anecdotal evidence suggests that clinical practice is variable.

Aim

To explore the role of specialist nurses in switching between clotting factor products and their use of a protocol.

Method

Nurses attending the 2018 World Federation of Hemophilia Congress were surveyed about clinical practice at their treatment centre and use of a protocol for switching clotting factor products.

Results

Of 192 nurses attending the conference, 49 nurses returned completed questionnaires, 45 of which were included in the study after exclusions. Responses were exclusively from economically developed countries. Almost all respondents (96%) had direct experience of switching. Half of those who responded to a question about protocol-based switching reported that switches were based on a protocol. When authorship was reported, the protocol was written by haemophilia nurses in about half of cases. Practice about blood testing to determine individual pharmacokinetic parameters prior to the switch was variable, but most nurses (86%) reported screening for inhibitors prior to switching. Respondents agreed to share their protocols among their peers, although only four were received by the research team.

Conclusions

Clinical practice in switching between clotting factor products is variable. Some nurses are switching treatments for patients without the supported of a written protocol, whereas others are involved in writing and implementing protocols. Sharing protocols is a first step in helping to establish best practice.