Addressing the Need for Patient-friendly Medical Communications: Adaptation of the 2019 Recommendations for the Management of MPS VI and MPS IVA

Abstract BackgroundPatients are the most important stakeholders in the care of any disease and have an educational need to learn about their condition and the treatment they should receive. Considering this need for patient-focused materials, we present a directed approach for mucopolysaccharidosis (MPS) VI and MPS IVA, a pair of rare, inherited diseases that affects multiple organs and parts of the body. Independent guidelines on the treatment of these diseases were recently published, providing evidence- and expertise-driven recommendations to optimize patient management. However, while healthcare providers may have the training and knowledge to understand these guidelines, patients and their caregivers can find the technical content challenging. Hence, we aimed to develop plain language summaries (PLS) of the MPS VI and MPS IVA guidelines with patients as the primary audience.ResultsA review of the guidelines by an expert team identified six domains of information relevant to patients: The multidisciplinary team, regular tests and check-ups, disease-modifying and supportive treatments, general anesthetics, ear-nose-throat/respiratory care, and surgeries. This information was adapted into a series of infographics specific to either MPS VI or MPS IVA, designed to appeal to patients and clearly present information in a concise manner.ConclusionsThe use of patient-friendly materials, like the infographics we have developed, has the potential to better inform patients and engage them in their care. We issue a “call to arms” to the medical community for the development of similar PLS materials in rare diseases intended to inform and empower patients.

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Internet of things issues related to psychiatry

International Journal of Bipolar Disorders ◽

10.1186/s40345-020-00216-y ◽

2021 ◽

Vol 9 (1) ◽

Author(s):

Scott Monteith ◽

Tasha Glenn ◽

John Geddes ◽

Emanuel Severus ◽

Peter C. Whybrow ◽

...

Keyword(s):

Internet Of Things ◽

Cognitive Abilities ◽

Healthcare Providers ◽

Emotional Reactions ◽

The Body ◽

Psychiatric Research ◽

Main Body ◽

Personal Safety ◽

Healthcare Organizations ◽

Iot Devices

Abstract Background Internet of Things (IoT) devices for remote monitoring, diagnosis, and treatment are widely viewed as an important future direction for medicine, including for bipolar disorder and other mental illness. The number of smart, connected devices is expanding rapidly. IoT devices are being introduced in all aspects of everyday life, including devices in the home and wearables on the body. IoT devices are increasingly used in psychiatric research, and in the future may help to detect emotional reactions, mood states, stress, and cognitive abilities. This narrative review discusses some of the important fundamental issues related to the rapid growth of IoT devices. Main body Articles were searched between December 2019 and February 2020. Topics discussed include background on the growth of IoT, the security, safety and privacy issues related to IoT devices, and the new roles in the IoT economy for manufacturers, patients, and healthcare organizations. Conclusions The use of IoT devices will increase throughout psychiatry. The scale, complexity and passive nature of data collection with IoT devices presents unique challenges related to security, privacy and personal safety. While the IoT offers many potential benefits, there are risks associated with IoT devices, and from the connectivity between patients, healthcare providers, and device makers. Security, privacy and personal safety issues related to IoT devices are changing the roles of manufacturers, patients, physicians and healthcare IT organizations. Effective and safe use of IoT devices in psychiatry requires an understanding of these changes.

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Role of Mitochondria in Viral Infections

Life ◽

10.3390/life11030232 ◽

2021 ◽

Vol 11 (3) ◽

pp. 232

Author(s):

Srikanth Elesela ◽

Nicholas W. Lukacs

Keyword(s):

Viral Infections ◽

Mitochondrial Dynamics ◽

The Body ◽

Viral Diseases ◽

Multiple Organs ◽

Innate Immune Signaling ◽

Mitochondrial Functions ◽

Host Virus Interactions ◽

Virus Interactions

Viral diseases account for an increasing proportion of deaths worldwide. Viruses maneuver host cell machinery in an attempt to subvert the intracellular environment favorable for their replication. The mitochondrial network is highly susceptible to physiological and environmental insults, including viral infections. Viruses affect mitochondrial functions and impact mitochondrial metabolism, and innate immune signaling. Resurgence of host-virus interactions in recent literature emphasizes the key role of mitochondria and host metabolism on viral life processes. Mitochondrial dysfunction leads to damage of mitochondria that generate toxic compounds, importantly mitochondrial DNA, inducing systemic toxicity, leading to damage of multiple organs in the body. Mitochondrial dynamics and mitophagy are essential for the maintenance of mitochondrial quality control and homeostasis. Therefore, metabolic antagonists may be essential to gain a better understanding of viral diseases and develop effective antiviral therapeutics. This review briefly discusses how viruses exploit mitochondrial dynamics for virus proliferation and induce associated diseases.

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The Value of the Oral Medicine Specialty in the Modern Healthcare Systems

Saudi Journal of Health Systems Research ◽

10.1159/000515358 ◽

2021 ◽

pp. 1-8

Author(s):

Mohammed Bindakhil ◽

Scarlet Charmelo-Silva ◽

Alhanouf A. Bin Dakhil ◽

Ibrahim A. ALOmair

Keyword(s):

Saudi Arabia ◽

Oral Health ◽

Medical Training ◽

Positive Impact ◽

Healthcare Providers ◽

Healthcare Systems ◽

Medical Community ◽

Oral Diseases ◽

Oral Medicine ◽

Training And Education

Background: Oral medicine is a subdiscipline of dentistry that concerns itself with the oral health of patients; it focuses on providing diagnosis and management of oral and maxillofacial diseases, as well as direct dental care for those in medically complex situations. As primary healthcare providers, physicians and dentists are often the first to evaluate patients with orofacial symptoms and make diagnoses related to oral health, whether explicit or manifested through systemic diseases. However, a lack of familiarity with oral medicine among healthcare providers often leads to significant delays in the accurate diagnosis and appropriate treatment of many oral and maxillofacial disorders. It has been well established that a lack of training and education in oral health among physicians is an impediment to alleviating the situation. Summary: Several studies and scientific reports in the medical community have shown a greater professional interest in oral health and medicine, with numerous recent articles reflecting a clear rise in multiple factors: an increased interest in additional training and a rise in oral diseases. This review focuses on the need for a multidisciplinary approach in modern healthcare systems that implements the oral medicine specialty. It also serves to emphasize the role of oral medicine in medical training and education, while simultaneously discussing the prevalence of oral diseases and awareness of oral health among physicians in Saudi Arabia. Key Messages: The prevalence of oral health conditions in Saudi Arabia appears to be high yet is accompanied by a scarcity of oral medicine specialists in this part of the world. Furthermore, numerous studies have revealed that physicians from different specialties in Saudi Arabia lack training in oral health and possess an insufficient awareness of the oral medicine specialty. This paucity of oral medicine specialists in Saudi Arabia presents a key issue as the clinical services and medical education provided by such specialists in healthcare systems can have a profound positive impact on each patient’s quality of life and health outcomes, as well as the standards of physicians’ training.

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Abstract WP404: Stroke Cognitive Recovery Model

Stroke ◽

10.1161/str.48.suppl_1.wp404 ◽

2017 ◽

Vol 48 (suppl_1) ◽

Author(s):

Susan Alderman

Keyword(s):

Cognitive Deficits ◽

Cognitive Abilities ◽

Belief Systems ◽

Healthcare Providers ◽

The Body ◽

Patient Needs ◽

Coordinated Care ◽

Recovery Model ◽

Cognitive Recovery ◽

Transitional State

Background: After an acute stroke, 90% of patients have cognitive deficits; 50% remain impaired and 30% develop dementia within one year. Cognitive recovery may not occur without early and coordinated care. Many cognitive deficits, i.e. memory and neglect, are not addressed early, care is not coordinated, and depends on each institution’s guidelines. Nurses must consider all patient needs yet no holistic cognitive recovery model exists to guide them. Purpose: To create a holistic, post-stroke, patient-centered cognitive recovery model capable of guiding care. Methods: Concept synthesis is a new way of grouping or ordering information when relevant data is unclear or unknown. A concept synthesis was performed due to limitations in prior biomedical models, specifically in psychology and rehabilitation, which resulted in ill-defined terms and bias. Results: Cognitive recovery is defined as a transitional state in which a person’s cognitive abilities can be modified to approach pre-injury levels, by the interactions of personal capabilities and four encompassing Environments. Personal capabilities (acceptance, agency and congruence) are internally oriented forces which control self-care behavior. The Environments (resources or forces interacting to help/hinder recovery) are depicted as the Physical (the body), External (social support, therapists, etc.), Internal (psychiatric or emotional forces), and Created (belief systems, attitudes, etc.). Conclusions: When interactions between personal capabilities and Environments are adequate cognitive recovery will progress. Recovery should be comprehensive and nurses are uniquely qualified to ensure all aspects of the person are addressed. This model promotes collaboration among healthcare providers and guidance in identifying and addressing patient needs.

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Overt Lower Gastrointestinal Bleeding and Pseudotumor: A Rare Presentation of Cytomegalovirus Infection

Case Reports in Medicine ◽

10.1155/2017/9732967 ◽

2017 ◽

Vol 2017 ◽

pp. 1-4 ◽

Cited By ~ 3

Author(s):

Akanksha Agrawal ◽

Deepanshu Jain ◽

Sameer Siddique

Keyword(s):

Highly Active Antiretroviral Therapy ◽

The Body ◽

Cmv Infection ◽

Rare Presentation ◽

Multiple Organs ◽

Highly Active ◽

History Of ◽

Acquired Immunodeficiency ◽

Immunodeficiency Syndrome

Cytomegalovirus (CMV) is a ubiquitous organism which can infect multiple organs of the body. In an immunocompromised patient, it can have a myriad of gastrointestinal manifestations. We report a case of recurrent hematochezia and concomitant pseudotumor in an AIDS (acquired immunodeficiency syndrome) patient attributable to CMV infection. A 62-year-old man with a history of AIDS, noncompliant with highly active antiretroviral therapy (HAART), presented with bright red blood per rectum. Index colonoscopy showed presence of multiple ulcers, colonic stenosis, and mass-like appearing lesion. Biopsy confirmed CMV infection and ruled out malignancy. Cessation of dual antiplatelet therapy and compliance with HAART lead to clinical cessation of bleeding and endoscopic healing of ulcers with complete resolution of colon mass on follow-up colonoscopy.

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The bidirectional mistrust

Internet Research ◽

10.1108/intr-11-2016-0330 ◽

2018 ◽

Vol 28 (5) ◽

pp. 1336-1350 ◽

Cited By ~ 2

Author(s):

Annica Björkman ◽

Martin Salzmann-Erikson

Keyword(s):

Demographic Data ◽

Healthcare Providers ◽

Online Communication ◽

The Body ◽

Care Seeking ◽

Content Type ◽

Descriptive Research ◽

Body Of Knowledge ◽

Care Seeking Behavior ◽

Seeking Behavior

Purpose The purpose of this paper is to explore and describe online communication about the experiences and attitudes toward Swedish Healthcare Direct, a national telephone advice nursing (TAN) service. Design/methodology/approach A descriptive research design was adopted using a six-step netnographic method. Three Swedish forums were purposefully selected and data from the virtual discussions were collected. Findings Three themes emerged: expectancy and performativity of the nurses, absurdity in accessibility and the scrutinizing game. The most prominent finding was the scrutinizing game, which included aspects of bidirectional mistrust from both nurses and callers. Another salient finding was the attitudes that callers held toward nurses who used a technique interpreted as “passing the buck.” Research limitations/implications The use of a nethnographic method is novel in this area of research. Consequently, the body of knowledge has regarding telephone advise nursing service has significantly been broadened. A limitation in this study is that demographic data for the posters are not available. Practical implications Bidirectional distrust is an important issue that must be acknowledged by TAN services, since it might damage the service on a fundamental level. Healthcare providers, politicians, and researchers should account for the power and availability of virtual discussions when seeking consumers’ opinions and evaluating the quality of the care provided. Originality/value This analysis of the ongoing discussions that take place on the internet provides insight into callers’ perceptions of a national TAN service. The bidirectional mistrust found from both the nurses and the callers might be a threat to callers’ compliance with the advice given and their care-seeking behavior.

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Inducible expression of human C9ORF72 36x G4C2 hexanucleotide repeats is sufficient to cause RAN translation and rapid muscular atrophy in mice

10.1101/2020.09.15.297259 ◽

2020 ◽

Author(s):

F.W. Riemslagh ◽

E.C. van der Toorn ◽

R.F.M Verhagen ◽

A. Maas ◽

L.W.J. Bosman ◽

...

Keyword(s):

Mouse Model ◽

Muscular Atrophy ◽

Time Frame ◽

Repeat Expansion ◽

The Body ◽

Specific Expression ◽

Multiple Organs ◽

Als Patients ◽

Flanking Regions ◽

Ran Translation

AbstractThe hexanucleotide G4C2 repeat expansion in the first intron of the C9ORF72 gene explains the majority of frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS) cases. Numerous studies have indicated the toxicity of dipeptide repeats (DPRs) which are produced via repeat-associated non-AUG (RAN) translation from the repeat expansion and accumulate in the brain of C9FTD/ALS patients. Mouse models expressing the human C9ORF72 repeat and/or DPRs show variable pathological, functional and behavioral characteristics of FTD and ALS. Here, we report a new Tet-on inducible mouse model that expresses 36x pure G4C2 repeats with 100bp upstream and downstream human flanking regions. Brain specific expression causes the formation of sporadic sense DPRs aggregates upon 6 months dox induction but no apparent neurodegeneration. Expression in the rest of the body evokes abundant sense DPRs in multiple organs, leading to weight loss, neuromuscular junction disruption, myopathy and a locomotor phenotype within the time frame of four weeks. We did not observe any RNA foci or pTDP-43 pathology. Accumulation of DPRs and the myopathy phenotype could be prevented when 36x G4C2 repeat expression was stopped after 1 week. After 2 weeks of expression, the phenotype could not be reversed, even though DPR levels were reduced. In conclusion, expression of 36x pure G4C2 repeats including 100bp human flanking regions is sufficient for RAN translation of sense DPRs and evokes a functional locomotor phenotype. Our inducible mouse model highlights the importance of early diagnosis and treatment for C9FTD/ALS patients.Summary statementOnly 36 C9ORF72 repeats are sufficient for RAN translation in a new mouse model for ALS and FTD. Reducing toxic dipeptides can prevent but not reverse the phenotype.

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Arrhythmiarizikó és cardialis szövődmények áramütéses balesetet követően

Orvosi Hetilap ◽

10.1556/650.2020.31897 ◽

2020 ◽

Vol 161 (47) ◽

pp. 1979-1988

Author(s):

Dávid Pilecky ◽

Enikő Kovács ◽

Endre Zima

Keyword(s):

Emergency Department ◽

Low Voltage ◽

Electrical Current ◽

Developed Countries ◽

The Body ◽

Cardiac Complications ◽

Special Focus ◽

Severe Injuries ◽

Multiple Organs ◽

Severe Burns

Összefoglaló. Az áramütés súlyos esetben hirtelen halállal vagy több szervrendszer kiterjedt károsodásával járhat. A magasfeszültségű áramütés (>1000 V) általában súlyosabb égési sérülésekkel és magasabb kórházi mortalitással jár, mint az alacsonyfeszültségű, de a sérülések súlyosságát a feszültségen kívül a test ellenállása, az áramexpozíció ideje, az áram fajtája, erőssége és útja is befolyásolja. A kritikus állapotú vagy súlyos égési sérüléseket szenvedett betegek sürgősségi ellátása komplex és multidiszciplináris szemléletet igényel. A súlyos szövődményekkel járó áramütéses balesetek ugyanakkor a fejlett országokban ritkák: az áramütés következtében sürgősségi osztályon jelentkező betegek döntő többsége panaszmentesen vagy minor panaszokkal kerül felvételre. A ritmuszavarok az áramütéses balesetek messze leggyakoribb cardialis szövődményei, és rendszerint közvetlenül az áramütés után jelentkeznek. Az elektromos áram kamrafibrillációt vagy asystoliát is kiválthat, mely a baleset helyszínén ellátás nélkül halálhoz vezethet. Bár sok helyen elterjedt gyakorlat az áramütést szenvedett betegek rutinszerű monitorozása, a klinikailag releváns arrhythmiák összességében ritkák, és a felvételi EKG alapján diagnosztizálhatók, ezért EKG-monitorozás csak meghatározott rizikófaktorok esetén szükséges. Jelen munkánk célja összefoglalni az áramütést szenvedett betegek optimális sürgősségi ellátásával kapcsolatos legfontosabb szempontokat, különös tekintettel az áramütéses balesetet követően fellépő cardialis szövődményekre és arrhythmiákra, valamint az EKG-monitorozás indikációira. Orv Hetil. 2020; 161(47): 1979–1988. Summary. Electrical accidents (EA) may cause sudden death or severe injuries of multiple organs. High voltage injuries (>1000 V) are associated with more severe burn injuries and higher in-hospital mortality than low voltage injuries, however, the severity of complications depends on several other factors like resistance of the body, duration of current exposition, intensity, type and pathway of current. Critically ill patients with severe burns and/or other injuries require a multidisciplinary intensive treatment. However, such complications are rare in the developed countries: most patients present in the emergency department with no or minor symptoms and do not require hospital admission. Arrhythmias are the most frequent cardiac complications after EA. Electrical current may cause ventricular fibrillation or asystolia which can lead to death on the scene. In patients presenting in the emergency department, clinically relevant arrhythmias are rare and can be diagnosed by a 12-lead ECG, therefore a systematic monitoring may not be indicated. Aim of our work is to review the most frequent complications after an electrical accident with special focus on cardiac complications and arrhythmias. The other aim of the manuscript is to summarize the most important aspects of emergency treatment and indication for ECG monitoring after electrical accident. Orv Hetil. 2020; 161(47): 1979–1988.

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The Physics of Ultrasound

10.2310/anes.18278 ◽

2018 ◽

Author(s):

Gerry van Rensburg ◽

Andrew Smith ◽

Ben O’Brien

Keyword(s):

Continuous Wave ◽

Imaging Modality ◽

Doppler Frequency ◽

Daily Practice ◽

The Body ◽

Ultrasound Images ◽

Plain Language ◽

Color Flow ◽

Continuous Wave Doppler ◽

Physical Principles

Clinical ultrasound has attained significant importance for the practising anesthesiologist. Its applications reach far and wide in anatomic and physiologic diagnosis, and it is a powerful adjunct for guiding interventional procedures. This article describes the physical principles that allow for the generation of ultrasound, its transmission and reflection from within the body, and generation of the ultrasound images used in daily practice. We not only review definitions of important technical terms but also provide synonyms in plain language, as jargon often presents a barrier to grasping basic and fundamental principles. Furthermore, we review the mathematical and physical principles that facilitate the generation of Doppler modes, such as pulsed wave, continuous wave, color flow. Clinically safe practice requires that all data be interpreted in the light of the technology’s shortcomings; we additionally review the common pitfalls and artifacts encountered in the use of this imaging modality. This review contains 16 figures, 1 table, and 5 references. Keywords: attenuation, continuous wave Doppler, Doppler, frequency, imaging artefacts, physics, pulsed-wave Doppler, ultrasound

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Trastuzumab deruxtecan in previously treated HER2-positive metastatic breast cancer: Plain language summary of the DESTINY-Breast01 study

Future Oncology ◽

10.2217/fon-2021-0427 ◽

2021 ◽

Author(s):

Shanu Modi

Keyword(s):

Breast Cancer ◽

Adverse Events ◽

Metastatic Breast ◽

Common Adverse Event ◽

The Body ◽

Plain Language ◽

Her2 Positive ◽

Serious Adverse Events ◽

Her2 Positive Breast Cancer ◽

Positive Breast Cancer

This is a summary of the article discussing the results of the DESTINY-Breast01 study originally published in the New England Journal of Medicine. The DESTINY-Breast01 study is a clinical study in participants with a type of breast cancer called HER2-positive breast cancer. The participants in the study received a treatment called trastuzumab deruxtecan, also known as T-DXd. The purpose of this summary is to help you understand the results of the DESTINY-Breast01 study. T-DXd is currently available as a treatment for adults with HER2-positive breast cancer that cannot be removed by surgery, also called unresectable, or that has spread, also called metastatic. In the DESTINY-Breast01 study, all the participants had HER2-positive breast cancer that was metastatic or unresectable. All participants were required to have had previous treatment for their HER2-positive breast cancer with another treatment, called trastuzumab emtansine or T-DM1. All the participants received T-DXd every 3 weeks. Part 1 was done to learn how T-DXd acted in the body, and to choose a dose to give to all the participants in Part 2. In Part 2, 184 participants received T-DXd at 5.4 mg/kg and the results showed that T-DXd reduced tumor growth. Up to 60.9% of the participants had their tumors shrink or disappear, with a treatment response that lasted for nearly 15 months on average. The participants lived with their cancer for around 16 months before it got worse. During the study, 183 out of 184 participants had side effects, known as adverse events. The most common adverse event was nausea. There were 42 participants (22.8%) who had serious adverse events, including lung toxicity. These results suggest that T-DXd could be a treatment option for people with metastatic HER2-positive breast cancer who have already been treated with T-DM1. Additional studies will provide more information and results about T-DXd. ClinicalTrials.gov NCT number: NCT03248492 To read the full Plain Language Summary of this article, click on the View Article button above and download the PDF. Link to original article here .

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