Severe Disability Research Articles

Disability and intimate partner violence experience among women in rural Samoa: A cross-sectional analysis.

Women with disabilities experience higher rates of intimate partner violence (IPV). Evidence suggests this violence often manifests in more subtle and severe forms over longer periods of time. There is limited evidence on this association in the Pacific Islands region, despite facing one of the highest global prevalences of IPV. Examine the prevalence of disability and the association between disability and types of IPV experience among women in rural Samoa as part of the EVE Project. This study analysed cross-sectional data collected with nine communities in rural Samoa between December 2022 and February 2023. Enumerators collected data with 707 women on tablets using REDCap. IPV was measured using the standardised Demographic and Health Survey (DHS) domestic violence methodology. Disability was assessed using the Washington Group questions. Logistic regression was conducted to examine the association between disability and experiences of IPV (physical, sexual, emotional and economic violence) among women. Having a disability was significantly associated with increased IPV experience among women in this study. When controlling for age and education, women with severe disability were significantly more likely to experience sexual (OR 4.31; p=0.01) and emotional (OR 2.87; p=0.02) IPV, when compared to women with no disability. Our findings point towards a greater vulnerability of women with disabilities to IPV, and particularly sexual and emotional IPV, in rural Samoa. Qualitative research in partnership with women with disabilities is essential to inform the design of measurement tools and prevention programmes that are grounded in the context-specific experiences and needs of all women with disabilities.

Towards a treatment for thyroid hormone transporter MCT8 deficiency: achievements and challenges.

Patients with an inactive thyroid hormone (TH) transporter MCT8 (Allan-Herndon-Dudley Syndrome, AHDS) display severe neurological impairments and motor disabilities indicating an indispensable function of MCT8 in facilitating TH access to the human brain. As a consequence, the CNS of AHDS patients appears to be in a TH deficient state which greatly compromises proper neural development and function. As another hallmark of this disease, patients exhibit elevated serum T3 levels leading to a hyperthyroid situation in peripheral tissues. Several treatment strategies have been developed and evaluated in preclinical mouse models as well as in patients. Here, we discuss these different therapeutic approaches to overcome MCT8 deficiency and summarize the current achievements and challenges in improving brain maturation in the absence of MCT8.

Parents and service providers’ perspectives about social inclusion of people with neurodevelopmental disabilities in Qatar: investigation of financial transactions and personal status laws

The current study aims to explore parents and service providers’ attitudes towards the social inclusion of people with neurodevelopmental disabilities into society, through exercising their rights in various financial transactions and personal status matters in the State of Qatar. Additionally, the study aims to explore any differences in the participants’ attitudes towards social inclusion based on their role, gender and the child’s disability type. Eighty-two service providers (46 Female) and sixty-five parents (40 Female) of children with Intellectual Disability or Autism Spectrum Disorder participated in this study. They completed the Attitudes towards social inclusion of people with disabilities (ASIPD) Scale. Findings showed that the participants believe that the Shari’ah (Islamic law) places a high premium on the social inclusion of the people with neurodevelopmental disabilities and predates various modern theories on the subject. In addition, the Islamic law permits the persons with mild neurodevelopmental disabilities to engage in many contracts in the realms of financial transactions and personal status. Parents and service providers have neutral to positive attitudes towards social inclusion of people with neurodevelopmental disabilities in terms of performing some financial transactions and some personal status rights like marriage and divorce according to severity of disability. Results were discussed and further recommendations were provided.

Temporal development of seizure threshold and spontaneous seizures after neonatal asphyxia and the effect of prophylactic treatment with midazolam in rats

Birth asphyxia (BA) and subsequent hypoxic-ischemic encephalopathy (HIE) is one of the most serious birth complications affecting full-term infants and can result in severe disabilities including mental retardation, cerebral palsy, and epilepsy. Animal models of BA and HIE are important to characterize the functional and behavioral correlates of injury , explore cellular and molecular mechanisms, and assess the potential of novel therapeutic strategies. Here we used a non-invasive, physiologically validated rat model of BA and acute neonatal seizures that mimics many features of BA and HIE in human infants to study (i) the temporal development of epilepsy with spontaneous recurrent seizures (SRS) in the weeks and months after the initial brain injury, (ii) alterations in seizure threshold and hippocampal EEG that may precede the onset of SRS, and (iii) the effect of prophylactic treatment with midazolam. For this purpose, a total of 89 rat pups underwent asphyxia or sham asphyxia at postnatal day 11 and were examined over 8–10.5 months. In vehicle-treated animals, the incidence of electroclinical SRS progressively increased from 0 % at 2.5 months to 50 % at 6.5 months, 75 % at 8.5 months, and > 80 % at 10.5 months after asphyxia. Unexpectedly, post-asphyxial rats did not differ from sham-exposed rats in seizure threshold or interictal epileptiform discharges in the EEG. Treatment with midazolam (1 mg/kg i.p.) after asphyxia, which suppressed acute symptomatic neonatal seizures in about 60 % of the rat pups, significantly reduced the incidence of SRS regardless of its effect on neonatal seizures. This antiepileptogenic effect of midazolam adds to the recently reported prophylactic effects of this drug on BA-induced neuroinflammation, brain damage, behavioral alterations, and cognitive impairment in the rat asphyxia model of HIE.

Self-esteem among People Living with Physical Disability Visting Rehabilitation Centers of Kathamandu, Nepal: An Observational Study

Introduction: Self-esteem is a comprehensive personal evaluation of an individual's worth that involves a person's perception of self, it functions as a defense mechanism that individuals possess to safeguard themselves from psychological harm. This study aims to assess the prevalence of self-esteem and its associated factors among people living with physical disability. Methods: A cross-sectional study was conducted among people living with a physical disability residing inside Kathmandu Valley from August to November 2022 after acquiring ethical approval from institutional review committee of CiST College (Reference number: IRC/161/078/079). A total of 215 samples were taken for the study. A face-to-face interview technique was applied for data collection consisting of the Rosenberg self-esteem scale. Bivariate analysis applying a Chi-squared test and multivariable logistic regression was carried out to identify the factors associated with self-esteem at 95% CI and 5% level of significance (p-value <0.05).Results: It was observed that 71 (33.02%) participants had lower levels of self-esteem. Education, family type, the severity of disability, and family affection were the factors associated with self-esteem in bivariate analysis. In multivariable analysis, informal education (aOR: 3.932; 95% CI 1.129-13.696), poor family relationships were twice (aOR: 2.237; 95% CI 1.029-5.507), perceived severity of disability (aOR: 3.129; 95% CI 1.341-7.300) to be associated with lower self-esteem.Conclusions: The findings reveal that a significant portion of participants, approximately one-third, experience lower levels of self-esteem. Furthermore, factors such as education, family type, severity of disability, and family affection emerged as significant influencers of self-esteem.

Alfacalcidol-Induced Kidney Injury in Patients with Severe Motor and Intellectual Disabilities.

Patients with severe motor and intellectual disabilities (SMID) often experience insufficient physical activity, leading to osteoporosis. The active form of vitamin D is commonly prescribed for the prevention or treatment of osteoporosis. We observed four cases of kidney injury believed to be associated with the administration of 1α-OH vitamin D (alfacalcidol) preparations. This study employed a case series design to investigate change in kidney function in SMID patients following administration or discontinuation of alfacalcidol. We retrospectively analyzed data of 23 SMID patients (sex: 10 males, 13 females; age range: 27 to 74 y), and assessed kidney function, serum calcium, and albumin levels. Data was grouped into A: 16 cases collected both before starting alfacalcidol administration and during alfacalcidol administration; and into B: 11 cases collected during alfacalcidol administration and after discontinuation of alfacalcidol administration. Of the 23 patients, four were assigned into both group A and group B. Of the 16 cases in group A, six showed ≥30% decreased kidney function. Of the 11 cases in group B, the median values of modified Cr-eGFR were 43.0 and 65.1 mL/min/1.73 m2, respectively (p=0.008), indicating a significant improvement in kidney function. It is essential for practitioners to understand that osteoporosis may ordinarily occur in SMID patients due to reduced bone stimulation. Thus caution must be exercised when administering active vitamin D preparations to this population, as they carry a risk of kidney organ damage despite having no direct effect on bone health.

Effectiveness of Transforaminal Epidural Steroid Injection and Lumbar Traction in Lumbar Radiculopathy Due to Intervertebral Disc Herniation: A Comparative Study

Background: Lumbar radiculopathy, commonly caused by intervertebral disc herniation, leads to severe pain and disability. Various non-surgical treatments, including Transforaminal Epidural Steroid Injection (TESI) and lumbar traction, are employed to alleviate pain and improve functionality. Objective: The study aimed to compare the effectiveness of TESI and lumbar traction in managing lumbar radiculopathy. Methods: This study was designed as a prospective, randomized, comparative trial conducted over 12 months at a tertiary care center, involving 100 patients diagnosed with lumbar radiculopathy due to intervertebral disc herniation (IDH). Eligible patients, aged 18 to 65 years with MRI-confirmed disc herniation causing radiculopathy, were randomly assigned to either the TESI group (n=50) or the lumbar traction group (n=50). Exclusion criteria included patients with prior lumbar surgery, spinal infections, or tumors. The TESI group received a single transforaminal epidural steroid injection under fluoroscopic guidance, while the lumbar traction group underwent mechanical traction therapy for 30 minutes per session, three times a week for six weeks. Outcome measures included pain intensity, assessed using the Visual Analog Scale (VAS) at baseline, two weeks, and six months post-intervention, functional outcome using the Oswestry Disability Index (ODI) at the same time points, and patient satisfaction using a five-point Likert scale at six months. Statistical analyses were conducted using SPSS software, with significance set at p-values <0.05. Results: The results of this study demonstrated that both the TESI and lumbar traction groups experienced significant improvements in pain and functional outcomes; however, the TESI group showed more pronounced results. In terms of pain reduction, the TESI group’s mean VAS score decreased from 7.5 at baseline to 3.2 at two weeks and 2.8 at six months, while the lumbar traction group saw a decrease from 7.6 to 5.1 at two ........

A Five-year Study of Spinal Disorders among Patients Presenting to the National Trauma Center of Nepal: An Observational Study

Introduction: Spinal cord injuries result in severe neurological impairments and disabilities. With an estimated 15.4 million cases globally in 2021, spinal cord injuries are more common in low- and middle-income countries, yet research in these areas is limited. This study aimed to find the pattern of spinal injuries and outcomes associated with spine injuries over a five-year duration at a tertiary trauma care center. Methods: This observational cross-section study was conducted at the National Trauma Center, Kathmandu from 2075 to 2080 B.S. with ethical clearance from the Nepal Health Research Council (Reference number: 968). Total-population sampling was used. A structured proforma was employed as the primary data collection tool. Data was analyzed using SPSS. Results: Of the 20843 patients, 2070 (9.93%) had spinal injuries. The median age was 43 (IQR 32-56) years, with 1391 (67.20%) male patients. The median hospital stay was 12 (IQR 7-20) days. Falls accounted for 1221 (58.99%) cases, and road traffic accidents for 195 (9.42%). Spinal fractures were present in 1076 (51.98%) patients with 456 (42.38%) in lumbar vertebra. There were 225 (10.87%) cases of subluxation with 214 (95.11%) in cervical level. Conclusions: The study provides insights into the patterns and outcomes of spinal injuries over five years of time. The mortality rate and cases of patients leaving against medical advice highlight areas for improvement in patient care and follow-up.

Machine learning for predictive AAC: Improving speech and gesture-based communication systems

Augmentative and alternative communication (AAC) systems play a crucial role in supporting individuals with severe communication disabilities by providing accessible means of expression and engagement. However, many conventional AAC devices rely on manual input or basic predictive functions, which can limit communication efficiency and responsiveness. The application of machine learning (ML) to AAC offers new opportunities to enhance these systems, enabling them to provide faster, more accurate, and contextually relevant communication assistance. Advances in ML, particularly in predictive text, speech recognition, and gesture interpretation, allow AAC systems to adapt more intuitively to user needs, predicting intent based on usage patterns and multimodal data, such as voice and gestures. Current research highlights the potential of ML to address key gaps in AAC technology by creating more responsive, personalized systems that align with individual user behaviours. This study proposes a novel ML framework designed to integrate these capabilities, promising improvements in communication speed, user autonomy, and accuracy. By addressing the challenges and limitations of traditional AAC devices, this research aims to advance accessible communication solutions that empower users and improve quality of life.

CPMP rescue of a neonate with severe molybdenum cofactor deficiency after serendipitous early diagnosis, and characterisation of a novel MOCS1 variant

We report the first, and so far, only index patient with neonatal onset MoCD type A who was diagnosed and treated early enough with cPMP to avoid severe brain injury and disability. The child presented with hypoglycemia at the age of 10 h and was diagnosed because of the incidental finding of severely decreased L-cystine in plasma. Due to a high level of awareness and excellent co-operation between metabolic laboratory and clinical services, cPMP substitution could be initiated before severe encephalopathy set in, and the child subsequently had a normal motor development. The child has been continued on daily substitution with cPMP until today (age 7 years) and has shown a satisfying long-term developmental outcome. Long-term follow-up, however, revealed significant communication difficulties and cognitive abilities in the range of mild to moderate learning disability. The severity of the metabolic disease was confirmed by the extent of biochemical abnormalities and further functional characterisation of the underlying genetic variants. This case provides further evidence that cPMP substitution does significantly alter the disease course when applied early enough. Postnatal treatment in this case was not sufficient to enable an entirely normal cognitive development, despite sustained complete normalization of the biochemical abnormalities.

Disease burden among patients with Arginase 1 deficiency and their caregivers: A multinational, cross-sectional survey.

Arginase 1 deficiency (ARG1-D) is an ultrarare, metabolic disease which may cause spastic paraplegia, cognitive deficiency, seizures, and ultimately severe disability. The aim of this study was to assess disease burden in ARG1-D by performing a cross-sectional survey of patients with ARG1-D and their caregivers in four European countries (France, Portugal, Spain, and the United Kingdom). Patients were enrolled at participating clinics and data were collected using a web-based questionnaire. The findings indicate that there is a significant share of patients who experience severe cognitive and mobility impairment but also that there is a considerable variance in symptom severity among patients. Disease management was mostly in line with treatment guidelines and self-reported adherence to treatment was reported to be high among a majority although following diet restrictions was perceived as difficult. However, despite this, since a large share of patients experienced severe cognitive and mobility impairment an unmet need among this patient population is suggested. The introduction of disease-modifying therapies and early identification and diagnosis may help alleviate the disease burden associated with ARG1-D in the future.

Post-operative Mortality Trends for Complicated Appendicitis: Adults with and without Disabilities

Abstract Background Even for the same complicated appendicitis, the prognosis may vary if appropriate post-operative care and follow-up are not provided. We aimed to investigate the 10-year trend of complicated appendicitis mortality among disabilities and non-disabilities peoples in Korea, recognizing potential disparities in post-surgical outcomes and the importance of adequate post-operative care. Methods Patients with complicated appendicitis were classified by severity using DRG codes. Causes of death were categorized into infectious, respiratory, cardiovascular, and digestive diseases using ICD-10 data. Age-adjusted mortality rates were calculated annually from 2008 to 2017 based on disability presence, severity, and type. Factors associated complicated appendicitis mortality were analyzed using multivariate logistic regression models. Results The mortality of complicated appendicitis was 10.2 times (40.8% vs. 413.9%) higher in people with disabilities, especially those with severe disabilities. This difference was more evident in patients with a severe disability (aOR=2.12, 95% CI:1.58-2.86), intellectual or psychological disability (aOR=2.95, 95% CI:1.49-5.85) and internal organ problems (aOR=2.05, 95% CI:1.28-3.28). Conclusions Our findings suggest that insufficient post-operative care among disabled peoples, especially those with severe disabilities, internal organ problems, and intellectual or psychological disabilities, may impact outcomes. This is exacerbated by poor healthcare facilities and limited disability awareness among healthcare workers. Additionally, further research is required to uncover unexplained mortality causes. Funding: This research was supported by the National Research Foundation of Korea (NRF) grant funded by the Ministry of Education (No. 2022R1I1A3070074) and by a grant of Patient-Centered Clinical Research Coordinating Center (PACEN) funded by the Ministry of Health & Welfare, Republic of Korea (grant number: HC23C0165). Key messages • Complicated appendicitis mortality rates show a stark 10.2-fold disparity between people with and without disabilities. • Severe disabilities, intellectual or psychological disabilities, and internal organ problems heighten the risk, emphasizing the importance of disability-inclusive healthcare practices.

Factors Influencing Quality of Life in the Disabled: Focus on Household Members Mental Health

Abstract Background Household members of the disabled experience various difficulties such as social isolation and the burden of caregiving. These difficulties can lead to mental health problems, which in turn affect the quality of life(QoL) of the disabled. Research on the QoL of the disabled is ongoing, but there are few studies addressing the mental health of household members. We aimed to investigate the impact of household members’ mental health on the QoL of the disabled. Methods We used data from the 2021 Disability and Life Dynamics Panel(nationwide survey). On the base of Patrick’s model of disability health promotion, we analyzed the impact of household members’ mental health on the QoL of the disabled by using correlation analysis and multiple regression analysis adjusted for gender, age, income level, employment status, education level, activities of daily living, participation in social activities, type and severity of disability, presence of multiple disabilities, and health status. Results The level of depression(r=-.316, p<.0001) and self-esteem(r=.248, p<.0001) of household members were found to be significantly correlated with the QoL of the disabled. The level of depression of household members had a significant negative impact on the QoL of the disabled(β=-.153, p<.0001), while self-esteem had a significant positive impact(β=.144, p<.0001). It was found that the level of depression had a greater impact on QoL than self-esteem. Conclusions Lower levels of depression and higher levels of self-esteem of household members are associated with higher QoL for the disabled. Improving the mental health of household members is crucial in improving the QoL of the disabled, enabling them to interact more positively with society. Additionally, as 27% of household members experience depressive issues, enhancing their mental health positively impacts on the overall well-being of families with disabilities. Efforts to enhance household members’ mental health are crucial. Key messages • Household members’ mental health significantly influences the quality of life of the disabled. • To improve the quality of life of the disabled, strengthening programs for promoting the mental health of household members and policy improvements are necessary.

Key Factors Influencing Quality of Life in the Disabled Based on Multifaceted Life Satisfaction

Abstract Background Healthy life of the disabled is considered a global social issue, and enhancing the quality of life (QoL) of the disabled is an important task. The disabled have lower multifaceted life satisfaction due to various daily restrictions, which negatively affects their QoL. Research on the QoL of the disabled is ongoing, but there are few comprehensive studies addressing multifaceted life satisfaction. To enhance the QoL of the disabled, it is essential to understand their multifaceted life satisfaction and investigate key factors influencing their QoL. Methods We used data from the 2021 Disability and Life Dynamics Panel (nationwide survey). On the base of Patrick’s model of disability health promotion, we analyzed the impact of multifaceted life satisfaction of the disabled on their QoL by using multiple regression analysis adjusted for gender, age, education level, daily living activities, type and severity of disability, and presence of multiple disabilities. Results The satisfaction with social relationships(β=.535, p<.0001), income(β=.146, p<.0001), housing environment(β=.132, p<.0001), occupation(β=.130, p<.0001), and health(β=.111, p<.0001) was found to have a significant positive impact on the QoL of the disabled. Particularly, satisfaction with social relationships exerted the greatest impact on their QoL. Conclusions Not only health satisfaction, but also social relations, income, housing environment, occupation had a substantial impact on the QoL of the disabled. These findings can support the government in prioritizing health policy development for the disabled and contribute to improving the QoL for the disabled through a comprehensive and integrated approach. The government should develop health policies to enhance social connections and support networks for the disabled, while also considering aspects for improving income, housing environment, occupation, and health. Key messages • Not only health satisfaction, but also social relations, income, housing environment, occupation had a substantial impact on the QoL of the disabled. • The government should prioritize developing health policies aimed at enhancing social relations for the disabled, while also considering income, housing environment, occupation, and health.

Nationwide trends in the suicide mortality among the disabled in Korea from 2006 to 2017

Abstract Aims The disabled are one of the priority populations at risk of suicide, but there has been no study of the factors influencing suicide mortality among the disabled in South Korea. Methods To analyze age-standardized suicide mortality (ICD-10 Codes, X60-84) for each year according to the presence, severity and type of disability, we linked three population datasets (National Health Insurance Claims Database, Disability Registry, and Deaths by Cause). Our dataset covers the entire population of South Korea, extended over a 12-year period from 2006 to 2017. The analyses were stratified by sex, and hazard ratios for suicide were determined by multivariate logistic regression after adjustment for socio-demographic and clinical variables. Results The suicide rate among the disabled was 2.24 times higher than among the non-disabled in 2017. The highest suicide rates were observed among intellectual or mental disabled, and severe disabled. In the disabled group, suicide rates were higher among those with medical benefits, older age (over 70 years), and depressive disorders in both male and female. Conclusions Although the disabled people’s suicide is often seen as an individual problem, it actually affects their families, communities and society. Therefore, government must strive to emphasize the broad view of the disabled population - not just the health of individuals, and track suicide trends and identifying risk and protective factors for suicidal behavior. From this information, suicide prevention strategies for the disabled people should be evaluated to identify the most effective interventions. Financial support: This research was supported by the Basic Science Research Program through the National Research Foundation of Korea funded by the Ministry of Education (No. 2022R1I1A3070074, and 2022R1I1A1A01068449), and a grant of Patient-Centered Clinical Research Coordinating Center funded by the Ministry of Health & Welfare, Republic of Korea (No. HC23C016500). Key messages • The suicide rate among the disabled was 2.24 times higher than among the non-disabled in 2017. • In the disabled group, suicide rates were higher among those with medical benefits, older age (over 70 years), and depressive disorders in both male and female.

Implantable cardioverter defibrillators among elderly survivors of out-of-hospital cardiac arrest

Abstract Background Survivors of out-of-hospital cardiac arrest (OHCA) with a shockable rhythm are at increased risk of cardiac arrest, and clinical practice guidelines recommend placement of an implantable cardioverter defibrillator (ICD) in the absence of a reversible cause and an expected meaningful survival of at least one year. Contemporary data on the prevalence of secondary prevention ICD placement among OHCA survivors remain limited. Purpose Examine patterns of secondary prevention ICD implantation in survivors of OHCA due to a shockable rhythm in a large national registry. Methods Using 2013-2019 data from the Cardiac Arrest Registry to Enhance Survival (CARES) linked to Medicare files, we identified 3,226 patients aged >65 years who survived to discharge following OHCA due to an initial shockable rhythm from January 1, 2013 to December 31, 2019. Patients with severe neurological disability, prior history of cancer, and those discharged to hospice were excluded. We calculated cumulative prevalence of ICD implantation at discharge, 90 days, and 6 months post cardiac arrest. Multivariable hierarchical regression models with random hospital effects were used to determine the adjusted association of patient characteristics with ICD implantation and quantify the extent of variation in ICD implantation across sites, using a median odds ratio (OR) and 95% confidence interval (CI). Results Patients’ mean age was 72.2 years; 23.5% were women, 10% were Black and 4% Hispanic. Among 3,226 OHCA patients, 997 (30.9%) received an ICD before discharge; 1,266 (39.2%) received an ICD within 90 days of cardiac arrest, and 1,287 (39.9%) received an ICD by 6 months. After adjusting for differences in demographics and co-morbidities, the odds of receiving an ICD at discharge were significantly lower in patients aged 85 years and older, women, patients with prior history of stroke or diabetes, patients who presented with acute myocardial infarction (P<0.05 for all). There was no significant difference in ICD implantation by race and ethnicity (P=0.94) (Table 1). Even after adjusting for patient demographics, co-morbidities, and presentation with acute myocardial infarction, there was large variation in hospital rate of ICD implantation at discharge, with a median odds ratio of 1.65 (95% CI 1.41-1.86). Conclusion Fewer than 1 in 3 patients with OHCA due to a shockable rhythm are discharged with a secondary prevention ICD. Although implantation of ICD was associated with patient variables, there was no difference in ICD implantation by race and ethnicity. There was large variation across hospitals in ICD implantation even after adjusting for patient variables highlighting an opportunity for improving post-arrest management of cardiac arrest survivors.

4.C. Scientific session: Navigating through complex challenges of responding to outbreaks of multidrug-resistant organisms

Abstract Antimicrobial resistance is one of the top ten global public health threats according to the WHO, contributing to millions of deaths each year. While outbreaks of multidrug-resistant organisms (MDROs) are well studied in hospital and nursing home settings, knowledge gaps exist concerning the complex challenges of outbreaks of MDROs among vulnerable patient populations, such as patients with intellectual disabilities or elderly patients living longer at home with multiple comorbidities. The coordination of such outbreaks requires a multidisciplinary approach as these patients often receive care throughout different healthcare settings, including long-term care and home-based nursing care. We delve into the complexities of coordinating an MDRO outbreak response involving healthcare professionals from various healthcare settings. The challenges inherent to the coordination of multidisciplinary involvement and the use of innovative strategies for outbreak preparedness and surveillance, will be thoroughly examined based on scientific evidence and practice based experiences. Workshop objectives • To exchange experiences on managing cross-institutional outbreaks of MDROs • To foster deeper understanding of the complexities of multidisciplinary involvement during MDRO outbreaks among vulnerable patient populations The workshop structure: - A brief introduction will be provided on the generic challenges in providing long-term care to vulnerable patient populations carrying MDROs. We will subsequently illustrate potential challenges faced during a cross-institutional MDRO outbreak among these patients through a realistic scenario (5 min): A patient with severe intellectual and physical disabilities living in both a long-term care facility as well as with family at home, unexpectedly turns out to be carrying an MDRO after recent hospital admission. As the patient receives nursing care from both from family members and nursing staff in different healthcare settings, a cross-institutional MDRO outbreak has occurred requiring a coordinated response. - Hereafter, individual presenters will address evidence- and experience-based challenges faced in MDRO outbreak responses within the specific healthcare settings covered in the previously presented scenario. We will navigate through the scenario together with the participants, discussing practical and ethical dilemmas, and explore ways for containing the MDRO outbreak while maintaining effective and compassionate healthcare delivery. In addition, we will discuss the use of public health innovations, such as social network analysis as a basis for the development of a stress test exercise to improve preparedness for MDRO outbreaks, and the role of wastewater surveillance in MDRO outbreaks. Discussions will be facilitated by (online) voting tools to invite participants to exchange experiences (40 min). We conclude with an exciting quiz to summarize the key messages of this workshop (10 min). Key messages • Healthcare setting, knowledge, proportionality and well-being of vulnerable patients populations are important to acknowledge during cross-institutional MDRO outbreaks. • Novel stress test exercise and wastewater surveillance are potential methods to improve preparedness and surveillance, respectively, during cross-institutional MDRO outbreak responses.

Relationship Between Gross Motor Function and Nutritional Status of Children with Cerebral Palsy-A cross-sectional study in a Tertiary Care Hospital of Bangladesh

Background: Cerebral Palsy (CP) is one of the most common causes of chronic disability in children. Childhood malnutrition is a major public health issue in low- and middle-income countries. The gross motor function of children with CP can easily be assessed by the tool Gross Motor Function Classification System- Expanded &Revised (GMFCS-E&R). This study aimed to determine the relationship between GMFCS and nutritional status in children with cerebral palsy. Method: This cross-sectional observational study was conducted in the Department of Pediatric Neurology, IPNA, BSMMU from October 2019 to August 2020. All the patients aged 2-12 years were diagnosed as CP by clinical criteria and classified by GMFCS. Nutritional status (weight for age, height for age, weight for height, BMI) is assessed and classified according to the World Health Organization growth charts. Then linear and multinomial logistic regression methods to determine the associations between GMFCS and nutritional status. The correlation between motor function and nutritional status was assessed. Results: Among the 50 children 68% were male and 32% were female. The mean age of the CP children was 4.90±3.05 years. Most patients (66.0%) came from poor families followed by 24% from the middle class. Functionally majority of patients were in GMFCS level IV (28.0% ) and level V (20.0%). Maximum patients in spastic quadriplegia 42%, spastic hemiplegia 16%. The level of GMFCS was associated with nutritional status, as determined by anthropometry. Moderate and severe underweight significantly related with GMFC level IV and V. Moderate and severe stunted was significantly related with IV and V GMFC level. Moderate wasted was significantly related to GMFC levels III and IV. Mild malnutrition was significantly with GMFC level II and III. Severe malnutrition is significantly related to GMFC level IV and V. Conclusion: This study showed majority of cerebral palsy cases had severe functional gross motor disability and also severe grade of malnutrition. A significant association between severe grade of malnutrition and severe grade of motor disability was found. J Bangladesh Coll Phys Surg 2024; 42: 342-349

Long-term disability following childhood injury: an imperative to monitor and address the continuum of trauma care

Abstract Background While injuries remain a leading cause of childhood death, increasing proportions of children survive life-threatening injuries. However, robust epidemiological data on their risks of long-term disability are scant, undermining comprehensive injury control efforts. This population-based prospective cohort study investigated the functional status and health-related quality of life of seriously injured Australian children over a 5-year period. Methods Patients aged <18 years hospitalised for major trauma (Injury Severity Score >12) in the State of Victoria over a 12-month period were followed-up at 6, 12, 24, 36, 48 and 60-months post-injury. Primary outcomes were assessed using the PedsQL, King’s Outcome Scale for Childhood Head Injury and the Glasgow Outcome Scale-Extended. Multivariable regression models investigated factors associated with outcomes. Results Of the 186 participants, 71% were retained to 60 months post-injury. At five years post-injury, only 39% had fully recovered while 39% experienced moderate to severe disability. Despite gains in functional status across the five years, psychosocial recovery lagged improvements in physical health. Factors associated with adverse outcomes included older age at injury, female sex, socio-economic disadvantage, remote/regional (versus urban) residence, pre-existing comorbidities, and injuries deemed compensable, intentional, or involving head trauma. Implications The high risks of long-term disability following serious childhood injury highlight the need for robust injury control efforts that monitor and address the inequitable burden of childhood injury, including the social determinants influencing the occurrence as well as sequelae following injury.

Functional capacity by cardiopulmonary exercise testing is not related to health status in obstructive hypertrophic cardiomyopathy

Abstract Background In obstructive hypertrophic cardiomyopathy (HCM), the primary goal of therapy is to improve patient quality of life by decreasing symptom burden. Increasingly, cardiopulmonary exercise testing (CPET), with peak oxygen consumption (pVO2) and ventilator efficacy (VE/VCO2), is used to assess efficacy of novel therapies in clinical studies and selectively in clinical practice to determine treatments. However, the relationship of CPET variables to symptom burden in HCM is not well established. Therefore, we examined the relationship between CPET variables and health status measured by Kansas City Cardiomyopathy Questionnaire (KCCQ) and NYHA functional classification in a cohort of obstructive HCM patients. Methods Consecutive patients with HCM and resting left ventricular outflow tract (LVOT) obstruction (≥50 mmHg) underwent CPET between October 2022 to January 2024. Patients with a peak RER <1.0 were excluded (n=4). To investigate distribution of patient reported health status (KCCQ) and NYHA functional classification, patients were stratified into groups for pVO2 (<14, 14-20, and >20 mL/kg/min) to reflect moderate to severe, mild to moderate, and little to no functional limitation, respectively. Results Of 58 patients, clinical evaluation was at 59 ± 13 years of age, 55% male, with LVOT gradient of 83 ± 28 mmHg at rest with 84% NYHA class II or III and 76% with KCCQ overall summary (OS) <75. Both pVO2 and VE/VCO2 had significant but weak correlation with NYHA class and KCCQ scores (Table 1), with the strongest correlation observed with pVO2 and KCCQ-OS (R2= 0.13, p=0.004). In contrast, % predicted pVO2 was not significantly correlated with NYHA or KCCQ. Notably, despite 14 patients being classified as having little to no limitations by pVO2, 29% of these patients had mild to moderate disability and 29% had moderate to severe disability by KCCQ-OS (Figure 1). Conclusion In patients with symptomatic obstructive HCM, objective measures of exercise performance, including pVO2 and VE/VCO2, correlate poorly with measurements of health status. These data suggest that CPET results should not be considered a surrogate marker of heart failure symptom burden in obstructive HCM.