Invisible Disease Research Articles

Improved immunostaining of nanostructures and cells in human brain specimens through expansion-mediated protein decrowding.

Proteins are densely packed in cells and tissues, where they form complex nanostructures. Expansion microscopy (ExM) variants have been used to separate proteins from each other in preserved biospecimens, improving antibody access to epitopes. Here, we present an ExM variant, decrowding expansion pathology (dExPath), that can expand proteins away from each other in human brain pathology specimens, including formalin-fixed paraffin-embedded (FFPE) clinical specimens. Immunostaining of dExPath-expanded specimens reveals, with nanoscale precision, previously unobserved cellular structures, as well as more continuous patterns of staining. This enhanced molecular staining results in observation of previously invisible disease marker-positive cell populations in human glioma specimens, with potential implications for tumor aggressiveness. dExPath results in improved fluorescence signals even as it eliminates lipofuscin-associated autofluorescence. Thus, this form of expansion-mediated protein decrowding may, through improved epitope access for antibodies, render immunohistochemistry more powerful in clinical science and, perhaps, diagnosis.

Research on lightweight GPR road surface disease image recognition and data expansion algorithm based on YOLO and GAN

The aim of this paper is to improve the accuracy and efficiency of ground penetrating Radar (GPR) detection of internal road surface disease images. Based on the YOLOv4 target detection algorithm, this study introduces MobileNetV2 and CBAM attention mechanism, and combines the Focal loss confidence loss function to iterate the model, so as to design an efficient and lightweight GPR pavement disease image recognition algorithm, MC-YOLOv4. At the same time, in order to alleviate the problem of data scarcity in GPR, we redesign an unsupervised generative adversarial neural network based on self-attention mechanism, namely SAGAN-W. Experiments show that MC-YOLOv4 not only has faster reasoning ability, but also occupies only 23% of the memory of YOLOv5-S. After using the SAGAN data augmentation, the mAP@ .0.5 evaluation index is further improved by 2.63%, and the collapse and mode collapse that may occur in the training process of the traditional Convolutional Generative Adversarial Neural Network (DCGAN) are avoided. After introducing the Focal loss confidence loss function to participate in the training, It significantly improves the imbalance between the precision and recall of the detection model, and this scheme is verified and supported by real scenes. The experimental results show that the proposed method has significant advantages in automatic detection and data expansion of lightweight GPR pavement invisible diseases, which has a wide range of application value and research significance.

The Lived Experience of African American Persons with Cystic Fibrosis.

Background: Cystic fibrosis (CF) is a rare genetic disease affecting approximately 30,000 people in the United States (US). African American persons with CF are even rarer, comprising approximately 5% of this population. Purpose: The purpose of this study was to explore the lived experiences of African American persons with CF to identify potential disparities in health care. Methods: Descriptive phenomenology was used to explore lived experiences of African American persons with CF over age 18 recruited from CF Foundation-accredited Centers in the US, CF-specific social media, and via snowball sampling. Study data was obtained through telephone interviews that were audio-recorded, transcribed verbatim, and analyzed using Colaizzi's method of thematic analysis. Results: Six men and six women (ages 23-45) completed the study. Interviews revealed three themes: (1) Accepting a Diagnosis of CF; (2) Desiring a Normal Life while Living with an Invisible Disease; and 3) A Slippery Slope of Subtle Racism. Each theme had 2-3 subthemes. Conclusions: It is critical to explore the unique challenges faced by African American persons with CF in order to develop interventions that improve their daily lives and create better futures. Implications for Practice: Findings highlight the unique challenges faced by underrepresented groups with CF and the need to address health inequities to improve care delivery.

A phenomenological exploration of the mental health experiences of young women with diminished ovarian reserve.

Infertility is a reproductive disease affecting one in six individuals that renders an individual unable to conceive. One cause of infertility is diminished ovarian reserve (DOR), which reduces the quantity and/or quality of a female's oocyte pool. Although typically indicating normal ovarian aging during the late 30s and early 40s, DOR can also impact younger women, increasing their risk for psychological distress from an unexpected diagnosis of infertility. A phenomenological approach examined the mental health experiences and perceptions of infertility-related mental health care of young women with DOR. Women diagnosed with DOR by age 35 in the United States who experienced emotional distress during infertility were recruited from infertility-specific social media and via snowball sampling. Participants completed a demographic survey and semi-structured individual interview that was audio-recorded, transcribed verbatim, and analyzed using a phenomenological approach. Ten women ages 27-41 completed the study. On average, participants were 30 years of age at the time of DOR diagnosis (age range 25-35), primarily Caucasian (90%), and married (90%). Two main themes were found: (1) Young women with DOR feel like a "forgotten community" coping with an invisible disease; and (2) Not all fertility clinics are created equal. Participants perceived their diagnosis as devastating and hopeless and urged others to find a provider with ample experience treating patients with DOR. This study helped to understand how young women with DOR perceive their mental health and identified a significant need for advancing towards more holistic infertility healthcare that encompasses both physical and mental health.

June 2023 Pulmonary Case of the Month: An Invisible Disease

No abstract available. Article truncated after 150 words. History of Present Illness A 78-year-old man presented to the emergency Department on April 7 for shortness of breath and weakness over the last 2 weeks. He was in good health prior to an outside hospitalization March 29-April 3 for pneumonia and possible a non-ST-elevation myocardial infarction (elevated troponins). He had a bronchoscopy during his recent outside hospitalization without specific pathogen identified but treated with antibiotics, discharged on levofloxacin. Since his hospital discharge 4 days previously he feels weaker and increasingly short of breath. SOB even walking around in his home. He denies fever or a productive cough. Past Medical History, Family History and Social History Atrial fibrillation, s/p ablation. On Eliquis. Prior renal cell carcinoma, s/p resection, no recurrence DM Type 2 GERD OSA Essential tremor Never smoked Medications Apixaban Aspirin Atorvastatin Flecanide Insulin Levofloxacin Lisinopril Pantoprazole Tamsulosin Physical Examination General: The patient looks comfortable and is in no …

Voids prediction beneath cement concrete slabs using a FEM-ANN method

ABSTRACT The voids beneath cement concrete slabs are a major invisible disease, resulting in a rapid decrease in service performance in the composite pavement. Accurate voids prediction is essential for the extensive application and long-term service of composite pavement. This research provides a FEM-ANN (Finite Element Modelling-Artificial Neural Network) method to predict the voids beneath concrete slabs. These ANN models include the original back propagation (BP), the particle swarm optimisation (PSO) BP model, the genetic algorithm (GA) BP model, and the whale optimisation algorithm (WOA) BP model. The voids FEM model is established and validated by the measured data in the field, and the relative error of measured and simulated results is within 4%. The cross-validation results show that the WOA-BP model has the best prediction performance, with the highest score of 8, which refers to the overall score of the mean value and variance of these evaluation indices. Therefore, this FEM-ANN framework is an efficient method for estimating the voids beneath concrete slabs. Furthermore, it is discovered that the base modulus with the highest contribution degree of 20.34% is the most dominant factor in predicting the voids output. HIGHLIGHTS A FEM-ANN method is utilised to predict the voids beneath concrete slabs The WOA-BP model exhibits the best comprehensive performance of the four ANN models. W d and pavement mechanical responses have a positive effect on A v opposite to K d and pavement structure. The base modulus is the primary factor in predicting the voids output.

LBODP094 Living With An "Invisible Disease": A Qualitative Study With Patients With Hypoparathyroidism

Abstract Background Hypoparathyroidism (HPT) is a rare condition in which the parathyroid glands fail to produce enough parathyroid hormone (PTH) or the PTH produced lacks biologic activity. The aim of this study was to explore the patient experience of HPT. Methods Adult patients with HPT, recruited via a medical recruitment agency and the US hypoPARAthyroidism Association, participated in web-based, semi-structured, qualitative interviews that were audio-recorded and transcribed. Thematic analysis identified key symptoms and health-related-quality-of-life (HRQOL) impacts of HPT. Results Interviews were conducted with 16 patients with self-reported HPT for ≥ 12 months (15 females; age range 26-76 years). Key HPT symptoms reported included: fatigue (n=16, 100%), cognitive dysfunction (n=15, 94%), pain (n=15, 94%), tingling (n=14, 88%), muscles twitches/spasms (n=13, 81%), muscle cramps (n=12, 75%), temperature sensitivity (n =12, 75%), muscles weakness (n=12, 75%), cardiovascular issues (n =10, 63%), and eye problems (n= 9, 56%). Patients experienced intra-day symptom variability and unpredictability depending on treatment (Tx) regime. This erratic symptom experience hindered daily planning, and interactions with family/friends, resulting in emotional distress. Patients reported that HPT had a detrimental impact on their daily lives including impacts on physical functioning (n=11, 69%), sleep (n=10, 63%), daily activities (n=16, 100%), and work (n=13, 81%) as well as on relationships and social functioning (n=16, 100%). Fifteen patients (94%) reported emotional impacts; a key issue was the patient-perceived "invisibility" of HPT, specifically patients’ disease experience was often dismissed by family/friends as HPT is rare, with "no visible" symptoms. Patients also noted the burden of HPT management (e. g., Tx regimens, potential effects from long-term medication use). The need for constant vigilance associated with symptoms monitoring and medication use could be onerous. The absence of "at-home calcium monitoring" required patients to adhere to self-imposed "medication timetables": any deviations caused emotional distress as patients feared triggering a "calcium crash". Seven patients noted that Tx effects were not sustained throughout the day, leading to a re-emergence of symptoms as the day progressed. Patients reported that symptom reduction, improved Tx longevity and at-home calcium self-monitoring were key factors that could improve wellbeing and HRQOL. Conclusions The interviews provided valuable insights on the patient lived experience of HPT. Patients’ lives were significantly disrupted by their HPT symptoms regardless of Tx regime. This disruption was exacerbated by the unpredictability of symptoms which challenged patients’ ability to live their lives. These findings highlight the need for durable effective Tx for patients with HPT. Presentation: No date and time listed

Envisioning supportive and safe learning environments: A dialogical study with LGBTQ+ adolescents living with chronic conditions or diagnoses

Abstract Background LGBTQ+ adolescents living with mental conditions are affected by stigma based on their health status, sexual orientation, and/or gender identity/expression (SOGIE), especially when navigating their learning environments. Our aim is to gain detailed insights into how LGBTQ+ adolescents living with mental conditions vision their learning environments so that they can feel safe and supported enough to freely disclose their SOGIE and health status, and hence thrive. Methods Aware of the participants’ vulnerabilities, a dialogical narrative-based approach was used to gather thick descriptions and deep insight, while applying the “seven C's”: conversation, curiosity, context, complexity, challenge, caution, and care (Frank, 2019). Recruitment was done through LGBTQ+ Denmark and via networks of networks. Two LGBTQ+ young adults living with chronic conditions held the dialogues. Mode of communication was chosen by the participants (either face-to-face, via internet or via telephone). Data analysis was conducted via the “analysis grid” (Roest et al. 2021). Results Nine dialogues lasting from 20 to 50 minutes were held with youth from 14 to 24 years old during spring 2022. According to their narratives, supportive and safe learning environments would: respect for change of names and pronouns, update learning materials, allow for flipped classrooms (hybrid teaching tested under COVID lockdowns), have separate neutral change rooms/bathrooms and create safe private spaces to take medications. They would also permit higher absenteeism rates for those living with chronic conditions or getting hormonal treatments, allow for more breaks/slower version of the pensum, and show proactive healthy curiosity and respect for “invisible diseases”, fluid SOGIEs and neurodiversity/neurodivergent profiles. Conclusions The differing participants’ narratives provide innovative ways to create safe and supportive inclusive learning environment that embrace and enhance diversity.

Too shamed to tell: the impact of shame on illness disclosure in women living with inflammatory bowel disease

Background: Living with an invisible disease of the bowel, such as inflammatory bowel disease (IBD), can evoke the psychologically difficult emotion of shame, which can in turn impact illness disclosure decisions. Aim: This Interpretative Phenomenological Analysis (IPA) study explored the link between shame and illness disclosure decisions. Findings: All 16 female participants experienced psychologically difficult emotions, with shame being predominant. This shame originated in the social stigma surrounding the specific nature of an illness of the bowel. Additionally, participants expressed their complex relationship with illness disclosure, which highlighted the influencing factor of shame. Methods: This IPA study was conducted under a humanistic, feminist theoretical framework and from a social constructivist standpoint. Conclusion: The experience of shame by women with IBD heavily influences their illness disclosure choices. The question that now requires exploration is how shame impacts illness disclosure in healthcare settings.

Analysis of the scientific productions about companies, accounting information and sustainability in the pandemic context (Covid-19)

The pandemic (Covid-19) decreed by the World Health Organization on March 11, 2020, originating in China in 2019, has generated drastic changes for the world society, and so far is impacting negatively, and changing the quality of life of the entire population. Humanity has been facing an invisible disease and man needs to rethink consumption patterns, as well as the negative environmental impact generated by these patterns. To this end, we aimed to analyze the scientific productions on companies, accounting information and sustainability in the context of the pandemic (Covid-19). This study is classified as a descriptive, bibliographic and qualitative research, as it sought to identify information to highlight the socioeconomic and environmental impacts generated by the pandemic (Covid-19) in organizations. In this sense, the quality of information about these impacts are indispensable issues for analyzing the sustainable development of corporate business. Other impacts were identified in relation to environmental quality such as the companies' accounting technical standards, and theoretical reflections on integrated reporting studies.

Out of the shadows, into the spotlight: Invisible zoonotic diseases in Brazil

Out of the shadows, into the spotlight: Invisible zoonotic diseases in Brazil

Patient Decision-Making About Self-Disclosure of a Type 2 Diabetes Diagnosis: A Qualitative Study.

Effective self-management of type 2 diabetes requires receiving support, which can result from disclosing the diagnosis to a support network, including coworkers, family, and friends. As a primarily invisible disease, diabetes allows people to choose whether to disclose. This study qualitatively explores the factors that influence a person's decision to disclose diabetes to others. Research coordinators recruited 22 interview participants, ranging in age from 32 to 64 years, whose medical records included a diagnosis code for type 2 diabetes. Participants received care from one of two U.S. medical centers. Semi-structured interviews lasted approximately 1 hour and were audio-recorded and professionally transcribed. Verification strategies such as memo-keeping and maintaining methodological coherence/congruence were used throughout analysis to promote rigor. In patients' descriptions of their decision-making processes regarding whether to disclose their diagnosis, six themes emerged. Three motivations prompted open disclosure: 1) to seek information, 2) to seek social support, and 3) to end the succession of diabetes, and the other three motivations prompted guarded disclosure: 4) to prepare for an emergency, 5) to maintain an image of health, and 6) to protect employment. Based on our findings, we recommend three communicative actions for clinicians as they talk to patients about a diabetes diagnosis. First, clinicians should talk about the benefits of disclosure. Second, they should directly address stereotypes in an effort to de-stigmatize diabetes. Finally, clinicians can teach the skills of disclosure. As disclosure efficacy increases, a person's likelihood to disclose also increases. Individuals can use communication as a tool to gain the knowledge and support they need for diabetes self-management and to interrupt the continuing multigenerational development of diabetes within their family.

Increasing the Prediction Accuracy for Thyroid Disease: A Step Towards Better Health for Society

A healthy life is essential for a happy society, however it is a fact that seemingly invisible diseases plague our families and people suffer. The thyroid disease falls in such a category. Thyroid disorders are long-term and with carefully handled illnesses, people with thyroid disorders may also live stable and normal lives. Thyroid diagnosis, particularly for an inexperienced clinician, is a difficult proposal. Many researchers have established various methods for the diagnosis of the disease and several models for disease prediction have been developed. As with several other domains, machine learning approaches to modelling health care problems is gaining popularity. This study aims at providing solutions towards such a thyroid disease prediction. Dimension reduction techniques are applied, and reduced dimension data input to classifiers. Also, data augmentation is applied so as to be able to generate sufficient data for deep neural network model. Classifier prediction is compared to other similar researches. Real life dataset for thyroid disease has been used, and experiments conducted in distributed environment. Our proposed two stage approach gives a maximum accuracy of 99.95% which is very good as compared to existing techniques. We have shown that dimension reduction and data augmentation can be used very efficiently for achieving high accuracy of disease prediction.

Stigma experiences of patients living with gastroparesis.

Stigmatization toward chronic digestive diseases is well documented. Patients perceive others hold negative stereotypes toward their disease and may internalize these beliefs as true. Because of this, stigmatization is associated with poor outcomes across disease-related and psychosocial domains. No study to date evaluates stigmatization toward patients living with gastroparesis (GP), a poorly understood disease affecting gastric motility. We aimed to gain deep understanding of stigma in patients living with gastroparesis. Patients with GP were recruited from two university-based gastroenterology practices as well as patient advocacy support groups. Participants underwent a semi-structured qualitative interview about their experiences with stigma related to their GP diagnosis, which were audio-recorded and transcribed to text for analysis using a grounded theory approach. Major themes with representative quotations were documented. Twenty-three patients participated. The majority were White, female, with idiopathic GP under the care of a gastroenterologist. All patients reported stigma related to GP. Seven major themes were found: stigma from healthcare providers, stigma within interpersonal relationships, GP as an invisible disease, blame, unsolicited suggestions on how to manage disease, disclosure, and stigma resistance. This is the first study to describe stigma experiences in patients with GP. The results suggest patients experience considerable stigmatization toward their condition from multiple sources. Patients also demonstrated resistance to negative beliefs, which can serve as a protective factor for the negative effects of disease stigma. Clinicians should be aware of stigma in GP patients, including their own potential internal biases and behaviors.

Oral-3D: Reconstructing the 3D Structure of Oral Cavity from Panoramic X-ray

Panoramic X-ray (PX) provides a 2D picture of the patient's mouth in a panoramic view to help dentists observe the invisible disease inside the gum. However, it provides limited 2D information compared with cone-beam computed tomography (CBCT), another dental imaging method that generates a 3D picture of the oral cavity but with more radiation dose and a higher price. Consequently, it is of great interest to reconstruct the 3D structure from a 2D X-ray image, which can greatly explore the application of X-ray imaging in dental surgeries. In this paper, we propose a framework, named Oral-3D, to reconstruct the 3D oral cavity from a single PX image and prior information of the dental arch. Specifically, we first train a generative model to learn the cross-dimension transformation from 2D to 3D. Then we restore the shape of the oral cavity with a deformation module with the dental arch curve, which can be obtained simply by taking a photo of the patient's mouth. To be noted, Oral-3D can restore both the density of bony tissues and the curved mandible surface. Experimental results show that Oral-3D can efficiently and effectively reconstruct the 3D oral structure and show critical information in clinical applications, e.g., tooth pulling and dental implants. To the best of our knowledge, we are the first to explore this domain transformation problem between these two imaging methods.

Relationship of Psychosocial Factors towards Medication Adherence among Hypertension Patients in A Tertiary Hospital

INTRODUCTION: Hypertension is one of the invisible diseases causing heart failure and stroke, and responsible for death. This study aimed to determine the level of medication adherence and psychosocial factors among patients with hypertension, relationship between socio demographic and medication adherence, and relationship between psychosocial factors and medication adherence among patients with hypertension. MATERIALS AND METHODS: A cross-sectional descriptive study was performed at the Primary Health Clinic and Medical Clinic in one of the tertiary hospitals. There were 123 patients with hypertension who volunteered to participate using a validated adapted and modified questionnaire to assess the compliance and psychosocial factors. The data collected was analysed using IBM SPSS Statistics version 23. RESULTS: A hundred and twenty respondents were adherents to medication (97.6%) while respondents with non-adherence to medication were 3 (2.4%) with a mean adherence score of 42.2764 with SD ± 2.67134. Some of the psychosocial variables had good understanding, good emotional state, positive attitude, higher motivation, higher perception of severity, lower perception of susceptibility and less barrier to compliance. Emotional state was the only thing reported for the psychosocial factors as being statistically significant. The level of emotional state was found statistically significant differences with scores p=0.008 (p< 0.05). CONCLUSION: The level of medication adherence was good which reflected the patients’ compliance towards medication taking. This study showed a good medication adherence and compliance among hypertension patients.

‘Hypertension multiple’: Patients’ experiential knowledge concept of symptoms and care required, and its implications for public health

Abstract Patients' conceptualisations of their disease do not always correspond to the biomedical definitions. Patients make sense of conditions by drawing on embodied experiences, beliefs circulating in their environments and information gathered from a variety of sources. Discrepancy between biomedical and patients' conceptualisations is problematic as it can affect treatment adherence, access to care, patient-provider communication and quality of patient experience. This is particularly the case for hypertension, an ‘invisible disease' that gives rise to various lay conceptions and practices. We examine how the disease is made ‘real' for Filipino hypertensive patients and the role their embodied experiences play in apprehending the chronicity of hypertension and in shaping care-related practices. Drawing from interview and focus group data from hypertensive patients in low-income communities in the Philippines, and on Annemarie Mol's notion of ‘multiplicity', the ‘symptom' plays a key role in the ways in which participants self-manage ‘hypertension'. Hypertension is a ‘multiple' condition that is understood and enacted differently by people who rely on their own experiential knowledge and ‘symptoms' to define its nature and act accordingly to maintain health. Their ‘symptoms' may or may not correspond with the biomedical view of hypertension, leading to a non-chronic view of hypertension that informs the decision (not) to take maintenance medications regularly. These findings have consequences for health communications and primary care. Failing to account for this ‘multiplicity' can also negatively impact experiences of care if patients feel that their embodied experiences are dismissed as less legitimate than biomedical indicators of the disease. Clinicians and public health officials must emphasize educational efforts that aim to address divergent views of noncommunicable diseases while respecting, listening to, and accounting for patients' experiential knowledge.

Bringing monogenic disease screening to the clinic.

The Healthy Nevada Project shows that otherwise invisible disease risk can be revealed through DNA-based screening. Identifying these monogenic risks could be the first step toward a new population health-screening program.

Environmental accommodations for university students affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses. This situation is especially difficult for students with lesser-known, invisible diseases like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex disease affecting up to 2.5 million Americans which often begins in late adolescence or young adulthood. Educate occupational therapists (OTs) about ME/CFS and steps they can take to assist students. This work is based on a review of the scientific literature and our collective professional/ personal experiences. ME/CFS' effects on multiple organ systems combined with the unusual symptom of post-exertional malaise frequently and substantially decrease function. Currently, no effective disease-modifying treatments have been established. Nevertheless, OTs can help student maximize their participation in university life by identifying potential obstacles, formulating practical solutions and negotiating with their institutions to implement reasonable, environmental accommodations. Through understanding this disease, being aware of possible support options, and recommending them as appropriate, OTs are in unique position to greatly improve these students' lives.

Chronic musculoskeletal pain experiences in marginalized populations: a mixed methods study protocol to understand the influence of geopolitical, historical, and societal factors

Background: Chronic musculoskeletal pain (CMP), an invisible disease, is due to complex biological and psychological processing. A CMP epidemic occurs concurrently during historically high global population movement. Nationalistic geopolitical rhetoric arises, in part, in response to perceptions of increased immigration rates and healthcare policies. Limited evidence exists about the impact of the current geopolitical climate on the CMP experience amongst migrant populations. Strategies to improve inequitable CMP management in marginalized populations may include improving the clinical conversation. Effective communication is a critical part of pain management and successful interactions between patients and their healthcare providers. Aims: The primary aims are to 1) develop subgroups of self-reported pain experiences in people who have CMP and experience marginalization and 2) interpret the pain experience of marginalized populations with CMP in the context of geopolitical, historical, and societal influences. Methods: A mixed methods sequential explanatory design study will be used. The first quantitative phase will be a survey, to be completed in three languages, with questions related to pain status, patient beliefs, and perspectives on healthcare. Latent class analysis will be used to generate experience-based subgroups. Focus groups will provide nuanced descriptions of the patient experience. Discussion: Results from this study will inform the understanding of the influence of geopolitical, historical, and societal influences on CMP in people who experience marginalization. This understanding will be used to develop a framework to educate clinicians on the broader factors in the CMP experience and to consider steps that can mitigate inequitable CMP outcomes in marginalized populations.HighlightsMarginalized patient populations may have different experiences in CMP.Societal and historical policies may influence clinical conversations and outcomes.CMP management may be impacted by the contemporary geopolitical environment.A mixed-method protocol is established to interpret patients’ CMP experiences in people who may experience marginalization.