scholarly journals It’s long-term, well it’s for life basically: Understanding and exploring the burden of immunoglobulin treatment in patients with primary immunodeficiency disorders

2021 ◽  
Vol 4 (3) ◽  
Author(s):  
Georgina Jones ◽  
Eva Brown Hajdukova ◽  
Esmee Hanna ◽  
Rosie Duncan ◽  
Brendan Gough ◽  
...  

This paper describes the burden of receiving immunoglobulin (Ig) treatment from the perspective of patients diagnosed with a Primary Immunodeficiency (PID). Thirty semi-structured interviews with patients receiving intravenous (n=21) and subcutaneous immunoglobulin (n=9) therapy, either at home or in hospital were undertaken. Underpinned by a phenomenological theoretical framework, and using a qualitative, inductive thematic approach to prioritise patients’ concerns, we identified that Ig treatment requires considerable effort by the patient, particularly in relation to the amount of time, organization and planning that is needed. They also face numerous physical, social, relationship, emotional, role functioning, travelling, and financial challenges in their effort to undergo and maintain their infusions and care for their health. Some qualitative differences in treatment burden were noted between home and hospital settings which contributed to non-adherence to those regimes. Immunoglobulin treatment burden is complex and influenced by therapeutic mode and setting and the personal circumstances of the patient. As choice over treatment method appears to be mainly informed by lifestyle needs, PID patients may benefit from more information about these potential Ig lifestyle influences when selecting which form of treatment to take together with their health professional.

Author(s):  
E Y. Wang ◽  
J. T. Cherian ◽  
A. Madsen ◽  
R. M. Fisher

Many steel parts are electro-plated with chromium to protect them against corrosion and to improve their wear-resistance. Good adhesion of the chrome plate to the steel surface, which is essential for long term durability of the part, is extremely dependent on surface preparation prior to plating. Recently, McDonnell Douglas developed a new pre-treatment method for chrome plating in which the steel is anodically etched in a sulfuric acid and hydrofluoric acid solution. On carbon steel surfaces, this anodic pre-treatment produces a dark, loosely adhering material that is commonly called the “smut” layer. On stainless steels and nickel alloys, the surface is only darkened by the anodic pre-treatment and little residue is produced. Anodic pre-treatment prior to hard chrome plating results in much better adherence to both carbon and alloy steels.We have characterized the anodic pre-treated steel surface and the resulting “smut” layer using various techniques including electron spectroscopy for chemical analysis (ESCA) on bulk samples and transmission electron microscopy (TEM) and electron energy-loss spectroscopy (EELS) on stripped films.


2014 ◽  
Vol 24 (2) ◽  
pp. 48-58 ◽  
Author(s):  
Lakshmi Kollara ◽  
Graham Schenck ◽  
Jamie Perry

Studies have investigated the applications of Continuous Positive Airway Pressure (CPAP) therapy in the treatment of hypernasality due to velopharyngeal dysfunction (VPD; Cahill et al., 2004; Kuehn, 1991; Kuehn, Moon, & Folkins, 1993; Kuehn et al., 2002). The purpose of this study was to examine the effectiveness of CPAP therapy to reduce hypernasality in a female subject, post-traumatic brain injury (TBI) and pharyngeal flap, who presented with signs of VPD including persistent hypernasality. Improvements in mean velopharyngeal orifice size, subjective perception of hypernasality, and overall intelligibility were observed from the baseline to 8-week post-treatment assessment intervals. Additional long-term assessments completed at 2, 3, and 4 months post-treatment indicated decreases in immediate post-treatment improvements. Results from the present study suggest that CPAP is a safe, non-invasive, and relatively conservative treatment method for reduction of hypernasality in selected patients with TBI. More stringent long-term follow up may indicate the need for repeated CPAP treatment to maintain results.


Mousaion ◽  
2019 ◽  
Vol 37 (1) ◽  
Author(s):  
Thatayaone Segaetsho ◽  
Julie Moloi

In the past few decades, digital technology has found a place in the acquisition, arrangement, description, preservation, and dissemination of information. However, heritage institutions are perturbed by the challenges of digital preservation strategies particularly for education. Despite continuous investment in digital preservation, there are limited skilled professionals to equip learners with the knowledge, skills and competencies required to drive digital preservation in Botswana. Therefore, this paper investigated the knowledge, skills and competencies related to digital preservation in the teaching curricula of the Department of Library and Information Studies (DLIS) at the University of Botswana. Data collection was done through intensive structured interviews with specific educators who teach courses on digital preservation in the archives and records management stream. The study revealed that despite the fact that the educators in preservation courses are aware of current trends in digital preservation, most of them have not obtained formal degree certification specific to digital preservation. The findings further revealed that minimal digital preservation competencies are observed in the teaching curricula. A significant number of challenges observed illustrated mainly a lack of resources and limited skills in terms of practical demonstrations by educators. The curricula mostly lacked clarity on long-term and short-term digital preservation. The study recommends that DLIS and other institutions should conduct surveys or curriculum auditing on digital preservation in order to improve the teaching content. A significant number of shortcomings regarding digital preservation that could motivate further studies are also discussed under the conclusion and recommendations section of this study.


Author(s):  
Katharina Diehl ◽  
Tatiana Görig ◽  
Charlotte Jansen ◽  
Maike Carola Hruby ◽  
Annette B. Pfahlberg ◽  
...  

Pharmacists and pharmaceutical technicians play an important role in counselling customers regarding sunscreen use and sun protection measures. A potentially helpful tool that can be used during counselling is the ultraviolet index (UVI), which informs individuals when and what sun protection measures are needed at a specific place and time. Our aim in this qualitative study was to explore awareness, knowledge, and use of the UVI during counselling in pharmacies. We used semi-structured interviews with pharmacists and pharmaceutical technicians (n = 20) to answer our research questions. Interviews were audiotaped, transcribed verbatim, and analyzed using qualitative content analysis. During the interviews pharmacists and pharmaceutical technicians revealed a lot of uncertainty and lack of knowledge regarding the UVI. Eight professionals were able to give a correct definition of UVI. Amongst others, the UVI was confused with sun protection factor. Overall, the UVI was hardly used during the counselling of customers. The UVI was developed to provide guidance when which type of sun protection is required to avoid detrimental effects of ultraviolet radiation. For effective implementation, both the general population and health professionals (e.g., pharmacists) have to increase their knowledge about the UVI. This would strengthen its use during professional counselling in pharmacies and may help to reduce the incidence of skin cancer over the long term.


2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Lisanne M. A. Janssen ◽  
Kim van den Akker ◽  
Mohamed A. Boussihmad ◽  
Esther de Vries

Abstract Background Patients with predominantly (primary) antibody deficiencies (PADs) commonly develop recurrent respiratory infections which can lead to bronchiectasis, long-term morbidity and increased mortality. Recognizing symptoms and making a diagnosis is vital to enable timely treatment. Studies on disease presentation have mainly been conducted using medical files rather than direct contact with PAD patients. Our study aims to analyze how patients appraised their symptoms and which factors were involved in a decision to seek medical care. Methods 14 PAD-patients (11 women; median 44, range 16-68 years) were analyzed using semi-structured interviews until saturation of key emergent themes was achieved. Results Being always ill featured in all participant stories. Often from childhood onwards periods of illness were felt to be too numerous, too bad, too long-lasting, or antibiotics were always needed to get better. Recurrent or persistent respiratory infections were the main triggers for patients to seek care. All participants developed an extreme fatigue, described as a feeling of physical and mental exhaustion and thus an extreme burden on daily life that was not solved by taking rest. Despite this, participants tended to normalize their symptoms and carry on with usual activities. Non-immunologists, as well as patients, misattributed the presenting signs and symptoms to common, self-limiting illnesses or other ‘innocent’ explanations. Participants in a way understood the long diagnostic delay. They know that the disease is rare and that doctors have to cover a broad medical area. But they were more critical about the way the doctors communicate with them. They feel that doctors often don’t listen very well to their patients. The participants’ symptoms as well as the interpretation of these symptoms by their social environment and doctors had a major emotional impact on the participants and a negative influence on their future perspectives. Conclusions To timely identify PAD, ‘pattern recognition’ should not only focus on the medical ‘red flags’, but also on less differentiating symptoms, such as ‘being always ill’ and ‘worn out’ and the way patients cope with these problems. And, most important, making time to really listen to the patient remains the key.


2021 ◽  
pp. 104973232110041
Author(s):  
Candidus C. Nwakasi ◽  
Kate de Medeiros ◽  
Foluke S. Bosun-Arije

Some Nigerians, in their effort to make sense of dementia symptoms, use descriptions that may stigmatize people with dementia and their families. This qualitative descriptive study focused on the everyday understanding of dementia and the impact of stigma on the caregiving experiences of informal female Nigerian dementia caregivers. Semi-structured interviews were conducted with a purposive sample of 12 adult informal female caregivers in Nigeria and analyzed for themes. Afterward, results were presented to focus groups of 21 adult Nigerians residing in the United States for more contextual insight on the findings. The three major themes were misconceptions about dementia symptoms, caregiving protects against stigmatization, and stigma affects caregiving support. Overall, we argue that knowledge deficit, poor awareness, and traditional spiritual beliefs combine to drive dementia-related stigmatization in Nigeria. Strategies such as culturally appropriate dementia awareness campaigns and formal long-term care policies are urgently needed to help strengthen informal dementia caregiving in Nigeria.


2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Natalia Arias-Casais ◽  
Eduardo Garralda ◽  
Miguel Antonio Sánchez-Cárdenas ◽  
John Y. Rhee ◽  
Carlos Centeno

Abstract Background Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. Aim To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. Methods A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. Results The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines. Conclusion Meaningful contributions are being made in Europe towards the integration of PC into the explored fields. These efforts should be assessed in future regional mapping studies using indicators to deliver a more complete picture of PC development.


2021 ◽  
Vol 10 (14) ◽  
pp. 3134
Author(s):  
Luisa Frizziero ◽  
Andrea Calciati ◽  
Giulia Midena ◽  
Tommaso Torresin ◽  
Raffaele Parrozzani ◽  
...  

Subthreshold micropulse laser treatment has become a recognized option in the therapeutic approach to diabetic macular edema. However, some yet undefined elements pertaining to its mechanism of action and most effective treatment method still limit its clinical diffusion. We reviewed the current literature on subthreshold micropulse laser treatment, particularly focusing on its effects on the modulation of retinal neuroinflammation. Subthreshold micropulse laser treatment seems to determine a long-term normalization of specific retinal neuroinflammatory metabolic pathways, contributing to the restoration of retinal homeostasis and the curtailing of local inflammatory processes. Optimized and standardized parameters ensure effective and safe treatment.


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