Seeking Medical Care Research Articles

Molecular characterisation of human rabies in Tanzania and Kenya: a case series report and phylogenetic investigation

BackgroundRabies remains a major public health problem in low- and middle-income countries. However, human rabies deaths are rarely laboratory-confirmed or sequenced, especially in Africa. Five human rabies deaths from Tanzania and Kenya were investigated and the causative rabies viruses sequenced, with the aim of identifying implications for rabies control at individual, healthcare and societal levels.Case presentationThe epidemiological context and care of these cases was contrasting. Four had a clear history of being bitten by dogs, while one had an unclear biting history. Two individuals sought medical attention within a day of being bitten, whereas three sought care only after developing rabies symptoms. Despite seeking medical care, none of the cases received complete post-exposure prophylaxis: one patient received only tetanus vaccination, one did not complete the post-exposure vaccination regimen, one followed an off-label vaccination schedule, and two did not receive any post-exposure vaccinations before the onset of symptoms. These cases highlight serious gaps in health-seeking behaviour, and in health systems providing appropriate care following risky exposures, including in the accessibility and effectiveness of post-exposure prophylaxis as it is administered in the region.ConclusionsThe viral genomic and epidemiological data confirms dog-mediated rabies as the cause of each of these deaths. The phylogenetic investigation highlights the transboundary circulation of rabies within domestic dog populations, revealing distinct rabies virus clades with evidence of regional spread. These findings underscore the importance of coordinated cross-border control efforts between the two countries. Urgent action is needed to improve awareness around the need for emergency post-exposure vaccines that should be accessible in local communities and administered appropriately, as well as investment in coordinated dog vaccination to control dog-mediated rabies, the underlying cause of these deaths.Graphical

Serbia multidisciplinary approach for surveillance and risk identification – The “One Health” information for action

Abstract Issue/problem To date, Serbia has not detected locally acquired Dengue cases. Since a competent Dengue virus vector Aedes albopictus (Ae. albopictus) has been detected since 2017, imported cases have the potential to trigger local transmission. Description of the problem To ensure preparedness and timely response in the event of an epidemic signal in Serbia, we described the imported Dengue cases and analysed the geographical distribution and density of the vector. Probable and confirmed imported cases meeting the 2018 EU case definition were reported via the National Notifiable System between January 2019 and December 2023. We monitored the density and geographical spread of mosquitos, including Ae. albopictus, which were collected during May-October 2022 and 2023. Mosquito genera were determined according to morphological criteria and DNA barcoding. Results During the investigation period, physicians reported three probable and four confirmed imported Dengue cases; the mean age was 28.4 (standard deviation (SD)=11.5) years and 57% were male. Cases had travelled in Southeast Asia (n = 6) and the Caribbean (n = 1). The mean time interval from symptom onset to seeking medical care was 3.6 (SD = 2.1) days and from symptom onset to laboratory confirmation 7.4 (SD = 6.3) days. We collected 1994 Ae. albopictus mosquitoes in 308 sampling sites across 12 Serbian regions. We observed the highest number of mosquitoes in September (38%, p < 0.001) and in the Belgrade region (81%, p < 0.001). In 2022, we detected Ae. albopictus mosquitos in seven regions and in 2023 in nine. Lessons Ae. albopictus mosquitoes were widely distributed in Serbia, with the highest presence during September and in the capital region. The importation of Dengue cases from affected countries underscores the need for enhanced integrated and “real-time” surveillance linked with vector control activities.

Cardiometabolic risk assessment in transgender individuals - differential impact of sex hormones and sex chromosomes.

While transgender individuals represent a significant group seeking medical care, the differential effect of sex on cardiometabolic risk metrics is incompletely understood. Therefore, the current study aimed to characterize the impact of sex hormones and chromosomes on a contemporary panel of cardiometabolic risk biomarkers and functional cardiovascular measurements. 17 transmen and 17 transwomen were studied at baseline (T0), 4 weeks (hormonal castration, T1), and 11 months following gender-affirming hormone treatment (T12). We analyzed carotid intima-media thickness (cIMT) and arterial stiffness, lipoproteins and other metabolites comprehensively by nuclear magnetic resonance spectroscopy and HDL-mediated cholesterol efflux capacity (CEC) from macrophages. T0 to T12 comparisons informed the impact of sex hormones, comparisons of genetic XX and XY individuals at T1 the impact of sex chromosomes. Vascular function was comparable at T12 and T0; systolic blood pressure increased in transmen (p=0.002). Transmen developed a pro-atherogenic lipoprotein profile, estrogen treatment in transwomen tended to result in improvements. Several metabolites indicating increased diabetes risk including plasma glucose were changed in transmen (p=0.025), with opposite changes in transwomen (p=0.002). Interestingly, at T1 apparent diabetes risk was lower in XX compared with XY individuals (p=0.002). CEC decreased in transwomen (p<0.01), while remaining unchanged in transmen. However, in both groups the strong positive association of apoA-I with cholesterol efflux observed at T0 was lost at T12. The results are consistent with increased cardiometabolic risk in transmen, while transwomen show beneficial changes early during gender-affirming hormone therapy. Sex chromosomes have less intrinsic effects. XY individuals and transmen display an increased apparent diabetes risk. Further research of cardiometabolic risk is needed for transgender individuals.

COMMUNITY INTERVENTIONS TO REDUCE MATERNAL MORTALITY IN LOW-RESOURCE AREAS

Maternal mortality, defined as the death of women during pregnancy, childbirth or in the postpartum period, continues to be a serious public health problem, especially in low-resource areas. Factors such as limited access to quality healthcare, lack of infrastructure, shortage of qualified professionals and socio-economic inequalities contribute to high mortality rates. In many of these regions, community interventions have been key to reducing maternal mortality by providing direct assistance to pregnant women, promoting health care education and strengthening the link between communities and medical services. This study seeks to analyze community interventions implemented in low-resource areas to reduce maternal mortality, evaluating their strategies, challenges and the results obtained in improving maternal survival rates. This study is a systematic review that investigates the effectiveness of maternal health interventions in low- and middle-income countries, focusing on skilled birth attendant programs, community transport, and technological innovations. The analyses were carried out in databases such as PubMed, BMC Pregnancy and Childbirth and African Journal of Reproductive Health, using data from articles published between 2015 and 2021. Community interventions to reduce maternal mortality range from health education programs, training traditional birth attendants and strengthening maternal and child support networks. One of the main approaches involves training community health agents, who work directly in communities, providing basic prenatal care, referral to medical services in cases of risk and promoting knowledge about signs of pregnancy complications. These actions are especially important in remote areas, where access to health facilities is limited. Another key aspect of these interventions is the promotion of safe practices during childbirth and the strengthening of emergency transport systems, ensuring that pregnant women at risk can be transferred to health centers equipped to deal with complications. The introduction of simple technologies, such as clean delivery kits and essential medicines, has shown promising results in reducing infections and hemorrhages, which are primary causes of maternal mortality. Awareness campaigns also play a crucial role, educating the population about the importance of prenatal care, proper nutrition and birth assistance in controlled environments. These initiatives aim not only to improve knowledge about maternal health, but also to combat cultural and social barriers that can prevent pregnant women from seeking medical care in a timely manner. It is concluded that community interventions have proven to be an effective approach to reducing maternal mortality in low-resource areas. Training health workers, implementing safe delivery practices and raising awareness about antenatal care are strategies that have contributed significantly to improving maternal health outcomes. However, for these interventions to be sustainable and scaled up, continued public policy support, adequate funding and the integration of these actions with formal health systems are essential.

Ethics in Global Plastic Surgery Missions.

Delivering ethical care in global plastic surgery is challenging due to the unique complexities of resource-limited settings. Additionally, the rise of medical tourism has highlighted the importance of informed consent and awareness of the potential risks that are associated with seeking medical care in foreign countries. This article aims to consider core medical ethics principles and apply them in the context of delivering global plastic surgery. This article examines the application of the four core medical ethics principles in a framework set forth by Beauchamp and Childress, namely autonomy, beneficence, nonmaleficence, and justice, in the context of delivering plastic surgery in international settings. A literature review was performed, where all potential global plastic surgery articles were reviewed to better understand the application of the four core medical ethics framework in this context. Increased communication between visiting surgeons and local healthcare providers; heightened education of surgeons traveling to low-to-middle-income countries regarding local medical practices, resource availability, and cultural norms before providing surgical education; and a greater emphasis on collecting and publishing data analyzing short- and long-term outcomes in low-to-middle-income countries are all likely to improve the success of international medical missions, ensuring that all patients receive medical treatment in a manner that upholds Beauchamp and Childress' four core medical ethics principles. Providing plastic and reconstructive surgery abroad can be done ethically if the four main principles of medical ethics (respect for autonomy, beneficence, nonmaleficence, and justice) are used.

A - 129 Healthcare Disparity between Dominant English Versus Spanish-Speaking Deep Brain Stimulation Candidates with Parkinson’s Disease

Abstract Objective The existence of healthcare disparities is well documented, although data regarding mental health disparities in pre-surgical deep brain stimulation surgery (DBS) patients with Parkinson’s disease (PD) remains emergent. In this study, we compare mood, apathy, and quality of life (QoL) in dominant English and Spanish-speaking PD-DBS candidates. We hypothesized that presurgical PD-DBS Spanish-speakers would have greater disease burden and lower mood and QoL compared to native English-speakers. Method Demographic and disease specific characteristics including disease duration and severity (Unified Parkinsons Disease Rating Scale (MDS-UPDRS)), mood (Beck Depression Inventory-II (BDI-II), Starkstein Apathy Scale (SAS)), and QoL (Parkinson’s Disease Questionnaire-39 (PDQ-39)) were compared. Data were analyzed using independent t-tests and chi-square tests to identify group differences based on language dominance (English (n = 20), Spanish (n = 20)). Results Spanish-speakers had higher disease burden (MDS-UPDRS “on”: p = 0.018; “off”: p = 0.023), but no other statistical significance in demographic or clinical motor characteristics. There were significant group differences in mood (BDI-II: p = 0.046), PDQ-39 Total and subdomain scores (Total: p = 0.017; ADL: p = 0.005; Mobility: p = 0.007; Emotional Wellbeing: p = 0.029; and Bodily Discomfort: p = 0.007) with Spanish-speakers reporting poorer QoL. No significant group differences were found regarding apathy. Conclusion(s) Spanish-speakers demonstrated greater disease burden and endorsed significantly lower QoL and depression symptoms compared to English speakers. These data add to our understanding of healthcare disparities among presurgical PD-DBS candidates and suggest that underrepresented groups, such as dominant Spanish-speakers, may have less access to early intervention, missed PD symptomology, and/or cultural apprehension about seeking medical care, thus increasing disease burden and impacting QoL over time.

Internalized Sexual Stigma, Sexual Orientation Disclosure, and Patient Experience Among Gay Men and Lesbian Women in Taiwan: A Cross-Sectional Survey.

Purpose: Previous research has found that stigma, discrimination, and depression are associated with the sexual minority population's medical experiences. However, there is still a lack of relevant research results in Taiwan. This study investigated the health-seeking experiences and influencing factors of gay men and lesbian women in Taiwan. Methods: We recruited gay men and lesbian women through lesbian, gay, bisexual, and transgender (LGBT)-friendly websites and associations between November 2019 and June 2020. Surveys included the demographics, medical visiting experiences, Measure of Internalized Stigma, Patient Health Questionnaire-9, and Daily Heterosexist Experiences Questionnaire. Results: There were 270 participants, including 188 gay men and 82 lesbian women. Most respondents refused to disclose their sexual orientation to health care providers; some feared seeking medical care and preferred seeking LGBT-friendly health care services. Compared with lesbian women, gay men had higher levels of internalized sexual stigma, victimization, concealing sexual orientation, and experiences of medical staff denying services. Discrimination, depressive severity, and internalized sexual stigma affected the medical visit experience. Conclusion: In Taiwan, the health care experiences of gay men and lesbian women are affected by discrimination, internalized sexual stigma, and severe depression, while facing challenges of fear of seeking medical care or reluctance to disclose their sexual orientation.

¿No Hay Racismo?: application of the levels of racism framework to Latinx perspectives on barriers to health and wellbeing

Background The purpose of this study is to increase understanding of the forms of systemic racism experienced by Latinx communities in North Carolina during the COVID-19 pandemic as identified by Latinx community health workers (CHWs) and community-based organization (CBO) leaders.MethodsWe held three focus groups in July 2022 (N = 16) with CHWs and CBO leaders in Spanish to discuss policy and community interventions that improved access to resources during the COVID-19 pandemic; policy or community interventions needed to improve care of Latinx communities; and lessons learned to improve the health of Latinx communities in the future. We performed directed and summative qualitative content analysis of the data in the original language using the Levels of Racism Framework by Dr. Camara Jones to identify examples of implicitly and explicitly discussed forms of systemic racism.ResultsLatinx CHWs and CBO leaders implicitly discussed numerous examples of all levels of racism when seeking and receiving health services, such as lack of resources for undocumented individuals and negative interactions with non-Latinx individuals, but did not explicitly name racism. Themes related to institutionalized racism included: differential access to resources due to language barriers; uninsured or undocumented status; exclusionary policies not accounting for cultural or socioeconomic differences; lack of action despite need; and difficulties obtaining sustainable funding. Themes related to personally-mediated racism included: lack of cultural awareness or humility; fear-inciting misinformation targeting Latinx populations; and negative interactions with non-Latinx individuals, organizations, or institutions. Themes related to internalized racism included: fear of seeking information or medical care; resignation or hopelessness; and competition among Latinx CBOs. Similarly, CHWs and CBO leaders discussed several interventions with systems-level impact without explicitly mentioning policy or policy change.ConclusionOur research demonstrates community-identified examples of racism and confirms that Latinx populations often do not name racism explicitly. Such language gaps limit the ability of CHWs and CBOs to highlight injustices and limit the ability of communities to advocate for themselves. Although generally COVID-19 focused, themes identified represent long-standing, systemic barriers affecting Latinx communities. It is therefore critical that public and private policymakers consider these language gaps and engage with Latinx communities to develop community-informed anti-racist policies to sustainably reduce forms of racism experienced by this unique population.

Psychological Distress and Associated Factors among Technical Intern Trainees in Japan: A Cross-Sectional Study.

Japan is experiencing significant demographic shifts due to an aging and declining population. In 1993, the Japanese Government introduced the Technical Intern Training Program (TITP) to accept foreign national workers. While the number of technical intern trainees under this program has constantly increased, many of them face challenges in their daily lives, such as stress, health insecurities and limited access to healthcare. Therefore, we conducted a cross-sectional study to assess the mental well-being of technical intern trainees, focusing on psychological distress and its related factors. This study included 304 technical intern trainees from 12 prefectures in Japan, and was conducted from August 2021 to October 2021. We used self-administered questionnaires in the participants' native languages to assess their sociodemographic conditions, health-related conditions such as health insecurities and healthcare-seeking behaviors, and psychological distress. The K6 Kessler Psychological Distress Scale was applied to evaluate the levels of psychological distress. Among the participants, 26.3% had moderate psychological distress and 2.3% had severe psychological distress. In addition, about 15% of the participants reported health insecurities and did not see a doctor despite wanting to. The multivariate model of logistic regression revealed significant associations between psychological distress and female gender (AOR 2.62, 95% CI 1.12-6.12), nationality other than Vietnamese (AOR 4.85, 95% CI 2.60-9.07), tough financial conditions (AOR 2.23, 95% CI 1.18-4.19), experiencing health insecurity (AOR 2.21, 95% CI 1.04-4.66) and the health behavior of refraining from seeking medical care (AOR 3.06, 95% CI 1.49-6.30). The top reasons for refraining from seeking medical care were the participants' limited knowledge about the healthcare system in Japan and their worries about medical bills. These findings highlight the necessity to extend mental health support services, including counseling services, and share information about Japan's healthcare system to supply medical services to the targeted technical intern trainee population.

Variations in Unmet Health Care Needs by Perceptions of Social Media Health Mis- and Disinformation, Frequency of Social Media Use, Medical Trust, and Medical Care Discrimination: Cross-Sectional Study.

Unmet need for health care is defined as choosing to postpone or completely avoid necessary medical treatment despite having a need for it, which can worsen current conditions or contribute to new health problems. The emerging infodemic can be a barrier that prevents people from accessing quality health information, contributing to lower levels of seeking medical care when needed. We evaluated the association between perceptions of health mis- and disinformation on social media and unmet need for health care. In addition, we evaluated mechanisms for this relationship, including frequency of social media use, medical trust, and medical care discrimination. Data from 3964 active adult social media users responding to the 2022 Health Information National Trends Survey 6 (HINTS 6), a nationally representative survey, were analyzed. The outcome was unmet need for medical care, defined as delaying or not getting the necessary medical care. The predictor variables were perception of social media health mis- and disinformation, frequency of social media use, level of trust in the health care system, and perceived racial and ethnic discrimination when receiving health care. Multivariable logistic regression models indicated that perception of substantial social media health mis- and disinformation (odds ratio [OR] 1.40, 95% CI 1.07-1.82), daily use of social media (OR 1.34, 95% CI 1.01-1.79), low medical trust (OR 1.46, 95% CI 1.06-2.01), and perceived discrimination (OR 2.24, 95% CI 1.44-3.50) were significantly associated with a higher likelihood of unmet need for medical care. Unmet need among adults who did not use social media daily and who did not perceive substantial mis- and disinformation (24%; 95% CI 19%-30%) was lower compared to daily social media users who perceived substantial mis- and disinformation (38%; 95% CI 32%-43%). Adults who perceived substantial mis- and disinformation and had low trust in health care had the highest probability of reporting unmet need (43%; 95% CI 38%-49%) compared to the other three groups. Adults who perceived substantial mis- and disinformation and experienced medical care discrimination had a statistically significant higher probability of reporting unmet need (51%; 95% CI 40%-62%) compared to adults who did not experience medical care discrimination and did not perceive substantial mis- and disinformation (29%; 95% CI 26%-32%). Unmet need for medical care was higher among individuals who perceived a substantial degree of social media mis- and disinformation, especially among those who used social media daily, did not trust the health care system, and experienced racial or ethnic discrimination when receiving health care. To counter the negative effects of social media mis- and disinformation on unmet need for health care, public health messaging must focus on daily social media users as well as improving trust and reducing structural racism in the health care system.

Soulful Rhythm, Dancing Bodies: Spirituality, Pain Tolerance, and the Risk of Lower Extremity Musculoskeletal Injuries Among Classical Kathak Dancers of India

Background: Dance and dancers reflect happiness, sadness, passion, anger, and all other emotions as every single dancing movement carries a significant signal that goes beyond words. Kathak, an Indian classical dance form, requires a divine balance between the soul and the physical body. This balance allows for a high pain tolerance of the dancers, but the spiritual nature of this dance form also generates ignorance and disinterest in their health seeking behavior towards injuries. Objectives: This comprehensive narrative review is aimed at exploring and examining the prevalence of lower extremity musculoskeletal injuries among Kathak dancers and proposes management strategies for their prevention and treatment. Methods: This review is based on a search of relevant articles, research papers, books and book chapters conducted across a wide array of online sources, utilizing the search engines like PubMed, Medline, CrossRef; etc. Considering the inclusion criterion, the review process included three stages: initial assessment of papers through title and abstract review, a detailed examination of relevant items, and systematic compilation of pertinent information into a categorized table under topical headings. Results: The review finds that the majority of injuries were reported in the foot and ankle region of dancers practicing Kathak. Conclusion: There is a need to develop supplementary exercise training programs and also spread awareness among dancers regarding their physical health and seeking medical care in time to delay/prevent lower extremity injuries.

Determinants of medical care-seeking behavior for musculoskeletal conditions during US: Marine Corps training: A thematic analysis.

Musculoskeletal injuries (MSK-I) are a well-documented problem in military populations and a leading contributor to disability across military services. However, only a portion of Service members who sustain MSK-I report it to medical providers. Although several studies have identified barriers to seeking medical care in military populations, less is known about what motivates Service members to seek care for MSK-I. To describe determinants of medical care-seeking behavior for MSK-I and/or musculoskeletal pain (MSK-P) in recently-enlisted Marines during military training. Qualitative Study. School of Infantry-West (SOI-W), US Marine Corps Base XXX, XXX. 1,097 US Marines entering Infantry Training Battalion or Marine Combat Training at SOI-W. Participants completed written surveys at entry to (baseline) and graduation from SOI-W. Closed-ended question responses were used to calculate MSK-I/MSK-P and care-seeking frequencies. Open-ended responses describing determinants of care-seeking behavior were analyzed using inductive thematic analysis. Ten percent of participants self-reported sustaining MSK-I during basic training, while 14% self-reported sustaining MSK-I in SOI-W training. A greater proportion reported seeking medical care for their MSK-I/MSK-P during basic training compared to SOI-W training. The thematic analysis resulted in three main themes that describe drivers and barriers for seeking medical care: 1) Self-perceived need for medical care; 2) Prioritizing military training; and 3) Training-specific influences. Understanding determinants of care-seeking behavior is valuable when designing intervention strategies to promote early MSK-I treatment. Our findings add to previous research to elucidate reasons underlying the decisions about care-seeking for MSK-I/MSK-P. Interventions, including educational strategies and direct approaches, like embedding medical providers within units, to minimize barriers to seeking medical care in the military may reduce the burden of MSK-I/MSK-P on Service members throughout their military careers.

Factors That Influence Health Care-Seeking Behavior and Health Information Disclosure Among U.S. Air Force Pilots.

The reality of pilot health care avoidance behavior is often common knowledge to both pilots and aeromedical physicians, but the underlying factors leading to this behavior are less understood. In the current study, we conducted a qualitative assessment of a sample of U.S. Air Force (USAF) pilots to gather firsthand perceptions of the factors that encourage and discourage disclosure during aeromedical screening and use of mental and physical health care services, as well as recommendations to improve the USAF aeromedical health care system. We conducted interviews with 21 USAF pilots on their perceptions of seeking medical care to identify factors that uniquely discourage or encourage disclosure and health care utilization to understand factors that aid the aeromedical provider/aviator relationship and to elicit interventions that could be prospectively researched. This work was reviewed by the Air Force Research Laboratory Institutional Review Board at Wright-Patterson Air Force Base and designated as exempt research, FWR20220103E. The most reported factors that discourage military pilot health care disclosure and health care utilization overall were medical revocation, stigma, and lack of trust in providers. Unit-embedded services, ease of access, and severity of condition were the most reported factors encouraging disclosure and utilization. Factor descriptions and exemplary quotes from pilots and pilot recommendations to encourage health care utilization and disclosure are provided. Results from firsthand interviews with pilots provide valuable information for flight surgeons to focus on building trust with their pilots to reduce health care avoidance.

Factors affecting the duration of initial medical care seeking among older rural patients diagnosed with rheumatoid arthritis: a retrospective cohort study

BackgroundEarly diagnosis and treatment of rheumatoid arthritis (RA) are essential to prevent progressive joint destruction and improve the quality of life (QOL) of patients. This study aimed to identify the factors associated with the duration from symptom onset to seeking initial medical care among older rural patients diagnosed with RA.MethodsThis retrospective cohort study was conducted in Unnan City, Japan, using electronic patient records. Data from patients aged > 65 years, who were admitted to the Unnan City Hospital between April 2016 and March 2021, were analyzed. The primary outcome was the duration from symptom onset to the initial visit to the medical institution. Demographic factors, laboratory data, and data on symptoms were collected and analyzed using statistical tests and regression models.ResultsIn total, 221 participants were included in this study. The longer duration from symptom onset to medical care usage was significantly associated with age (adjusted odds ratio [OR]: 1.09, 95% confidence interval [CI]: 1.03–1.15), isolated conditions (adjusted OR: 4.45, 95% CI: 1.85–10.70), and wrist symptoms (adjusted OR: 3.22, 95% CI: 1.44–7.17). Higher education level and alcohol consumption were also associated with the duration from symptom onset to medical care usage.ConclusionsOlder age, isolated conditions, and specific joint symptoms were significant factors influencing delays in seeking medical care among older rural patients with RA. Interventions to improve health literacy, increase social support, and raise awareness of RA symptoms are essential for expediting diagnosis and improving patient QOL. Further research is needed to explore additional psychosocial factors and beliefs that affect health-seeking behaviors in patients with RA.

Characterizing Families of Pediatric Patients with Rare Diseases and Their Diagnostic Odysseys: A Comprehensive Survey Analysis from a Single Tertiary Center in Korea

Purpose: Rare diseases necessitate consistent access to specialized health services. In Korea, despite the growing socioeconomic burden, insufficient comprehensive research is available on patients with rare diseases and their families, particularly concerning factors influencing the length of time to diagnosis. The aim of this study was to thoroughly characterize rare pediatric diseases and explore factors impacting the diagnostic odyssey. Methods: The study enrolled patients under 15 years old seeking medical care at the Seoul National University Children’s Hospital Rare Disease Center between January 2022 and December 2023. Participating patients were required to have been diagnosed with one of the 1,248 rare diseases recognized in Korea. A 33-question survey was developed to assess clinical features of the patients, characteristics of their primary caregivers, and their perceptions of ongoing medical care. Results: The study included 101 patients and their families. Regarding perceived cognitive and motor functions, most families indicated moderate or severe limitations (cognitive, 62.4%; motor, 57.4%). Over half of the families (53.5%) reported discontinuing employment to provide patient care. Neurological symptoms represented the most common initial chief concern, with dermatologic symptoms and laboratory test abnormalities also noted. Three factors were associated with time to diagnosis: the number of hospitals visited, whether the districts of residence and diagnosis aligned, and the age at symptom onset.Conclusion: The comprehensive characterization of patients with rare diseases and their families in Korea, along with the identification of factors impacting the diagnostic odyssey, provides key insights for the development of a tailored support system.

Trends in anaphylaxis management during COVID-19

BackgroundAnaphylaxis is an acute, potentially life-threatening systemic hypersensitivity reaction that commonly occurs in the community setting and is best managed with epinephrine. ObjectiveThe purpose of this study was to examine the effects of the COVID-19 pandemic on trends in acute at home anaphylactic events including Emergency Room (ER) visits and treatment for anaphylaxis. MethodsWe used data from two sources: survey data from the Food Allergy Research & Education (FARE) Patient Registry; and electronic medical records of patients who presented to Tampa General Hospital ER with a diagnosis of anaphylaxis. We collected data from events during the Covid epidemic and before and after vaccine availability. Data was analyzed using descriptive statistics. Results190 FARE survey responses were completed. Sixty-three patients reported that the COVID-19 pandemic changed how they responded to the allergic reaction. Of these 63 patients, 71% avoided seeking medical care outside the home, 30% used self-medication more quickly than usual, and 14% delayed the use of medication. Only 87 events (46%) were treated with epinephrine. 4358 presented to TGH ER from April 1, 2018, to March 31, 2022, with an ICD-10 diagnosis code of anaphylaxis or allergic reaction. Only 718 received epinephrine in the ER. 867 patients presented 1 year prior to March 1, 2020 (before vaccine availability) and 1,833 patients presented 1 year after April 1, 2021 (after vaccine availability). ConclusionsOnly 16% of patients received epinephrine by survey and ER data capture. After COVID vaccine availability there were more ER visits for anaphylaxis among patients seen in a tertiary care teaching hospital.

Parental perception of neonatal care in urban slums of Jammu city

Background: India is undergoing rapid urbanization and many rural residents relocate to urban regions in search of employment, better living conditions and access to education and health care facilities. Neonatal morbidity and mortality are attributed to misperceptions in the community about newborn care. In many parts of urban slums in India, care seeking from multiple providers and use of traditional/home remedies hampered appropriate and timely medical care seeking. Aim was to study awareness, knowledge and practice of newborn care among postnatal mothers in Urban slums of Jammu city. Methods: This observational study was conducted in Urban slums of Jammu city. A total of 100 mothers of newborns residing in urban slums participated in the study after taking Informed Consent from them. A self-structured proforma was used to collect data. Results: Most of the deliveries were conducted in hospital (82%) and 18% were home deliveries. Regarding newborn care practices 88 % had wrapped the newborn with clean cloth immediately after birth. 58% of newborns were given first bath within 2-7 days. 39% of mothers-initiated breast feeding within 6-24 hours. Majority (68%) newborns were fed with colostrum. Regarding cord cutting procedures among home deliveries, it was observed that clean blade was used in 15 newborns while in 3 cases aseptic practice for cord cutting was not followed. Conclusions: Good newborn practices like promotion of warmth, cord care, hygiene and early breastfeeding should be the main focus of community-based health workers. The present study concluded that some unhealthy neonatal care practices were still found to be prevalent which can be mitigated by increasing awareness among parents through IEC activities.

Machine learning identifies factors most associated with seeking medical care for migraine: Results of the OVERCOME (US) study.

Utilize machine learning models to identify factors associated with seeking medical care for migraine. Migraine is a leading cause of disability worldwide, yet many people with migraine do not seek medical care. The web-based survey, ObserVational survey of the Epidemiology, tReatment and Care Of MigrainE (US), annually recruited demographically representative samples of the US adult population (2018-2020). Respondents with active migraine were identified via a validated diagnostic questionnaire and/or a self-reported medical diagnosis of migraine, and were then asked if they had consulted a healthcare professional for their headaches in the previous 12 months (i.e., "seeking care"). This included in-person/telephone/or e-visit at Primary Care, Specialty Care, or Emergency/Urgent Care locations. Supervised machine learning (Random Forest) and Least Absolute Shrinkage and Selection Operator (LASSO) algorithms identified 13/54 sociodemographic and clinical factors most associated with seeking medical care for migraine. Random Forest models complex relationships (including interactions) between predictor variables and a response. LASSO is also an efficient feature selection algorithm. Linear models were used to determine the multivariable association of those factors with seeking care. Among 61,826 persons with migraine, the mean age was 41.7 years (±14.8) and 31,529/61,826 (51.0%) sought medical care for migraine in the previous 12 months. Of those seeking care for migraine, 23,106/31,529 (73.3%) were female, 21,320/31,529 (67.6%) were White, and 28,030/31,529 (88.9%) had health insurance. Severe interictal burden (assessed via the Migraine Interictal Burden Scale-4, MIBS-4) occurred in 52.8% (16,657/31,529) of those seeking care and in 23.1% (6991/30,297) of those not seeking care; similar patterns were observed for severe migraine-related disability (assessed via the Migraine Disability Assessment Scale, MIDAS) (36.7% [11,561/31,529] vs. 14.6% [4434/30,297]) and severe ictal cutaneous allodynia (assessed via the Allodynia Symptom Checklist, ASC-12) (21.0% [6614/31,529] vs. 7.4% [2230/30,297]). Severe interictal burden (vs. none, OR 2.64, 95% CI [2.5, 2.8]); severe migraine-related disability (vs. little/none, OR 2.2, 95% CI [2.0, 2.3]); and severe ictal allodynia (vs. none, OR 1.7, 95% CI [1.6, 1.8]) were strongly associated with seeking care for migraine. Seeking medical care for migraine is associated with higher interictal burden, disability, and allodynia. These findings could support interventions to promote care-seeking among people with migraine, encourage assessment of these factors during consultation, and prioritize these domains in selecting treatments and measuring their benefits.

Exploring the Health-Related Quality of Life and the Lived Experience of Adolescents Following Invasive Meningococcal Disease.

Data on the health-related quality of life (HRQoL) for invasive meningococcal disease (IMD) survivors, particularly among adolescents and young adults (AYAs), are limited. This study aimed to investigate the in-depth experiences and impacts of IMD on AYAs. Participants were recruited from two Australian states, Victoria and South Australia. We conducted qualitative, semi-structured interviews with 30 patients diagnosed with IMD between 2016 and 2021. The interview transcripts were analyzed thematically. Of the participants, 53% were aged 15-19 years old, and 47% were aged 20-24. The majority (70%) were female. Seven themes relating to the participants' experience of IMD were identified: (1) underestimation of the initial symptoms and then rapid escalation of symptoms; (2) reliance on social support for emergency care access; (3) the symptoms prompting seeking medical care varied, with some key symptoms missed; (4) challenges in early medical diagnosis; (5) traumatic and life-changing experience; (6) a lingering impact on HRQoL; and (7) gaps in the continuity of care post-discharge. The themes raised by AYA IMD survivors identify multiple areas that can be addressed during their acute illness and recovery. Increasing awareness of meningococcal symptoms for AYAs may help reduce the time between the first symptoms and the first antibiotic dose, although this remains a challenging area for improvement. After the acute illness, conducting HRQoL assessments and providing multidisciplinary support will assist those who require more intensive and ongoing assistance during their recovery.

Dengue Treatment-Seeking Behavior: A Qualitative Study With Costa Rican Residents.

Treatment-seeking behavior (TSB) in relation to dengue infection is a critical aspect of public health, and understanding the factors that influence it is crucial for effective disease management. This research delves into key determinants of dengue TSB by examining the perceptions and behaviors of individuals in Costa Rica, in relation to the Health Belief Model (HBM). This study utilized naturalistic inquiry and incorporated a qualitative research design involving nine students organized into four teams, with at least one student on each team with high Spanish fluency. In total, we initiated 102 semi-structured field interviews with Costa Rican residents in four communities. The interviews were recorded, transcribed verbatim, and coded in several cycles using MAXQDA 2022©. Thematic analysis was used to identify patterns and themes using an inductive approach. We found that several HBM themes influenced dengue TSB among participants. Self-treatment was the most common initial step in managing dengue. Perceived inaccessibility of health care services and perceived ineffective treatment options discouraged medical care-seeking. Ultimately, the prevalence of self-treatment practices suggests a need for interventions that emphasize the importance of timely professional medical attention, while addressing real barriers and perceptions of existing health care services as inaccessible and ineffective. These findings provide a key perspective on dengue TSB, guiding future public health strategies aimed at optimizing health-seeking behaviors and mitigating the negative impacts of dengue on population health.