Specialized Centers Research Articles

Hereditary hemorrhagic telangiectasia - pediatric review.

Hereditary hemorrhagic telangiectasia (HHT) diagnostic and management approach for pediatrics underwent significant advances over the last couple of years. In 2020, new guidelines for HHT were published that included a pediatric section thus attracting special focus into the childhood presentation. Curacao criteria are specific, but not sensitive enough in children. Genetic testing is encouraged for all family members even if asymptomatic. Standardized scoring for epistaxis is strongly encouraged, as it allows monitoring and can stratify therapeutic approaches. Early screening for pulmonary and brain visceral arteriovenous malformations (AVMs) in pediatric patients with confirmed genetic alterations of HHT should be instituted. Graded trans-esophageal echocardiogram with agitated saline contrast can be used as screening method for pulmonary AVMs. As pulmonary AVMs can develop throughout lifetime, guidelines recommend repeated screening even in asymptomatic patients at least every 5 years. Signs of stroke in childhood are more subtle than in adults. Cerebral imaging in early childhood can identify brain AVMs that may benefit from early intervention. Embolization of high-risk pulmonary and cerebral AVMs should be performed at specialized centers even at pediatric age. One or two classic HHT telangiectasia can be considered diagnostic in children. Antibiotic prophylaxis with dental procedures continues to be recommended.

The global approaches to the regulation of quantum communication

In the rapidly evolving field of quantum communication, the regulatory framework plays a crucial role in ensuring security, standardization, and international cooperation. This article examines various approaches employed by countries to regulate quantum communication. The purpose of this research is to comprehensively analyze and compare different international approaches to the regulation of quantum communication to identify key features characteristic of the current stage of development and regulation of quantum communication, as well as to develop recommendations for optimizing and improving regulatory governance in this area. The methodological basis of the study consisted of general scientific and special methods. A detailed study of various legal documents, strategies, and standards related to quantum communication was conducted using the following general scientific methods: analysis, synthesis, induction, and system analysis. Among the special legal methods used was the comparative legal method, which made it possible to identify general trends, differences, and unique approaches in the regulation of quantum communication, as well as the formal-legal method for studying legal categories and legislative techniques used in various acts in the studied area. The study systematically examines legislative measures, government policies, and industry standards to determine the relationship between technological innovation and regulatory governance in the field of quantum communication. The research revealed that the regulation of quantum communication is primarily carried out at the level of strategic documents, such as national roadmaps, which contain recommendations and guidelines for regulating quantum communication. It was found that technical standards play a vital role in the development of quantum communication, with this development occurring at both national and international levels. Special groups and centers have been established for the effective implementation, development, and regulation of quantum communication, which allows for the identification of social, legal, political, and ethical issues. The main conclusions include the need to monitor administrative barriers, identify priority sectors for the implementation of quantum communication, and recognize quantum communication as a dual-use technology. It is recommended that an international certification and tracking system be created for quantum communication devices for export and import control purposes.

SP4.3 - Pancreatoduodenectomy for malignancy with concomitant arterial resection: results from the Recurrence After Whipple’s (RAW) study

Abstract Background Most centres are reluctant to perform pancreatoduodenectomy (PD) with concomitant arterial resection (AR) in patients with a cancer affecting the pancreatic head. This is because outcomes are poor and the potential benefits of an aggressive resection are unlikely to outweigh the potential risks, particularly in a patient with an aggressive tumour and limited life expectance. AR has been shown to correlate with higher rates of morbidity, reoperation and mortality, and reduced overall survival. However, AR may be justified in selected patients in specialist centres. This study aimed to compare the outcomes of PD patients who underwent AR to those who did not. Methods Data were extracted from the Recurrence After Whipple’s (RAW) study, a multicentre retrospective cohort study of outcomes of PD performed for pancreatic head malignancy (29 centres from eight countries, n=1484). Patients who underwent AR were identified and compared to those who did not undergo AR using the chi-squared test. The following were compared: length of stay (LoS), incidence of postpancreatectomy haemorrhage (PPH), and rates of unplanned return to theatre, 30-day readmission, 90-day mortality, and five-year survival. Results Out of 1484 patients, 8.8% did not have data regarding their AR status recorded so they were excluded. Of the rest, 25 (1.8%) underwent AR. Despite the small sample size, these patients had significantly higher rates of PPH (20.0 vs 5.9%, p=0.0004) and reduced five-year survival (12.0% vs 33.1%, p=0.03). Conclusion AR should be reserved for selected PD patients in specialist units. Despite our small sample size, our multicentre study demonstrated that these patients have higher incidence of PPH and reduced long-term survival

Preferences for coordinated care for rare diseases: discrete choice experiment

BackgroundEvidence suggests that coordination of care for people affected by rare diseases is poor. In order to improve the way that care is coordinated it is necessary to understand the preferences of people affected by these conditions, and providers. The aim of this study was to examine patient, parent and carer, and health care professional preferences for different attributes of care coordination for people affected by rare diseases. We conducted a discrete choice experiment using online surveys. There were no restrictions on participants in terms of rare conditions, demographic factors other than age, or geographical location within the UK. Choice scenarios were based on the following attributes: annual cost of attending appointments; access to health records; access to clinical expertise; support of a care coordinator; access to a specialist centre; and, the existence of a documented plan for emergency care. Data were analysed using alternative-specific conditional logit regression models.ResultsValid responses were obtained from 996 individuals (528 patients, 280 carers, 188 health care professionals) between August and December 2019. All attributes significantly influenced the type of service respondents preferred. Patients, carers and health professionals’ preferences for care coordination were influenced by: the cost of attending appointments; access to health records; clinical expertise; role of care coordinators; access to specialist centres; and the existence of plan for emergency care. There were no statistically significant differences in the preferences between patients and carers. Preferences of health professionals differed to those of patients and carers. Both patients and carers selected responses which granted them a greater degree of autonomy in relation to the role of care coordinators, whereas health professionals preferred services where care coordinators had more autonomy. Health care professionals also expressed a stronger preference for a documented formal emergency plan to be in place.ConclusionsThe findings highlight that people value better coordinated care, in line with policy documents emphasising commitments to coordinated care for people affected by rare diseases. This study highlights the factors that could be included in service provision as ways of improving the coordination of care for people affected by rare diseases.

International prevalence of transthyretin amyloid cardiomyopathy in high-risk patients with heart failure and preserved or mildly reduced ejection fraction

Background Transthyretin amyloid cardiomyopathy (ATTR-CM) is an underdiagnosed cause of heart failure (HF). Methods This epidemiology study assessed the international prevalence of ATTR-CM among patients aged ≥60 years with a history of HF, left ventricular ejection fraction (LVEF) >40%, an end-diastolic interventricular septum thickness (IVST) ≥12 mm, but without diagnosed amyloidosis, history of LVEF ≤40%, cardiomyopathy of known cause, severe valvular, or coronary heart disease. ATTR-CM was determined using cardiac scintigraphy alongside exclusionary testing for light chain amyloidosis. The study was terminated early due to slow recruitment, without safety concerns. Results Overall, 56/315 (18%; 95% CI: 13.7–22.5) patients with evaluable scintigraphy had ATTR-CM, with a numerically higher prevalence in: Europe (24%) vs. other regions (9% Asia; 5% North America); at specialist vs non-specialist centres (26% vs. 11%); in males vs. females (24% vs. 10%); and in older vs. younger patients (e.g. >40% among those ≥85 years). Other risk markers (p<.05) included a history of carpal tunnel syndrome, higher N-terminal pro B-type natriuretic peptide concentration, and higher end-diastolic IVST. Conclusions ATTR-CM was diagnosed in 18% (95% CI: 13.7–22.5) of evaluable patients with HF, LVEF >40%, and risk markers for ATTR-CM, but no previous diagnosis of amyloidosis. Recruitment bias may have contributed to regional variability. NCT04424914

SPIDOL study protocol for the assessment of intrathecal ziconotide antalgic efficacy for severe refractory neuropathic pain due to spinal cord lesions

RationaleCentral neuropathic pain resulting from spinal cord injury is notoriously debilitating and difficult to treat with few currently available treatments. A novel molecule with intrathecal administration: Ziconotide has been approved for treatment of refractory neuropathic pain in general. It acts as a presynaptic calcium channel blocker. A pilot study has shown its potential in SCI neuropathic pain patients.ObjectiveThe aim of this study is to determine the long-term (6 months) efficacy of chronic intrathecal ziconotide for the treatment of neuropathic SCI pain.Study designMulticenter, Randomized, Comparative, Placebo controlled, Double blind clinical trial, with a crossover of random alternated periods of 6 months (placebo or ITZ) for a total of 15 months including a total of 44 patients.Study population• Patients with SCI of various etiologies exhibiting neuropathic pain refractory to non-invasive treatments.• > 18 years.InterventionIntrathecal administration of ziconotide via an implanted pump.Study outcomesPrimary study outcomeDifference in pain intensity for all patients between effective treatment and placebo periods.Secondary study outcomes1. Continuous evaluation of pain intensity.2. Percentage of patients with at least 30% of pain reduction.3. Satisfaction level of the patient pain relief.4. Declarations of serious adverse events.5. Duration and intensity of spontaneous and provoked pain.6. Quality of life.7. Patient global impression of change.8. Quantification of daily dosages of analgesic drug intake.9. Long term memory and neurocognitive effects.10. Assessment of the patient’s physical and emotional distress.Nature and extent of the burden and risks associated with participation, benefit, and group relatednessParticipation in this study is in accordance with current treatment protocols for SCI neuropathic pain in France therefore it proposes a treatment that would currently be considered regular practice even though no RCT evidence is yet available. The study gives patients the advantage of directly testing versus placebo a treatment that otherwise entails significant constraints.A Data Safety Monitoring board (DSMB) will be created for continuous safety analysis. Furthermore, patients will be followed in specialized pain centers offering the possibility of continuing their treatment after the study period.

Study of the instability of the fixed points cells temperature of working standards: establish the optimal time intervals between the comparisons

The cells of fixed freezing points of metals are an important component of the working standards of temperature of the 0th category. These standards are intended to reproduce the unit of temperature kelvin in accordance with ITS-90, which is currently the main method in the temperature range from –189 to 1084 °C. The transfer of the temperature unit is carried out by comparing the cells of the working standards of temperature with the cells of the state secondary standard of temperature. In order to develop recommendations for increasing the interval between comparisons and changing the requirements of the State Verification Scheme, one of the most important characteristics of the cells of the working standards of temperature was studied – the instability of the cell temperature in the interval between comparisons. The paper summarizes the results of the study of 26 cells of fixed points of tin, zinc and aluminum, the service life of which was from 2 to 10 years, and the interval between comparisons was from 2 to 5 years. Possible causes of instability of the reproducible temperature are described and the uncertainty of comparisons of working standard cells with secondary standard cells is calculated. The analysis of the results showed that the instability values over a long period of time do not exceed 1.02 mK for tin cells, 1.75 mK for zinc cells and 6.47 mK for aluminum cells. The most probable cause of deviation of the temperature of working standard cells from secondary standard cells is the different purity of the metals used. It is noted that the destruction of the quartz shell of the cell without mechanical action is unlikely, and the effect of pressure on the temperature of the reference point is absent. Based on the results of the comparative analysis, it was concluded that it is possible to increase the interval between comparisons for ampoules of tin and zinc to five years. Such an increase in the interval has a positive economic effect by reducing the cost of operating the state secondary temperature standard and transporting ampoules to the comparison site. For aluminum cells, an individual approach to setting the interval between comparisons is recommended based on the analysis of the results of previous comparisons. The materials published in this paper may be useful to specialists of metrological centers working with working temperature standards, as well as to all scientists studying the processes occurring in cells for measuring the solidification temperature of metals.

Oral Staphylococcus Species and MRSA Strains in Patients with Orofacial Clefts Undergoing Surgical Rehabilitation Diagnosed by MALDI-TOF MS.

This study investigated the occurrence and dynamics of oral Staphylococcus species in patients with orofacial clefts undergoing surgical rehabilitation treatment. Patients (n = 59) were statistically stratified and analyzed (age, gender, types of orofacial clefts, surgical history, and types of previous surgical rehabilitation). Salivary samples were obtained between hospitalization and the return to the specialized medical center. Microbiological diagnosis was performed by classical methods, and MALDI-TOF MS. MRSA strains (SCCmec type II, III, and IV) were characterized by the Decision Tree method. A total of 33 (55.9%) patients showed oral staphylococcal colonization in one, two, or three sampling steps. A high prevalence has been reported for S. aureus (including HA-, MRSA and CA-MRSA), followed by S. saprophyticus, S. epidermidis, S. sciuri, S. haemolyticus, S. lentus, S. arlettae, and S. warneri. The dynamics of oral colonization throughout surgical treatment and medical follow-up may be influenced by (i) imbalances in staphylococcal maintenance, (ii) efficiency of surgical asepsis or break of the aseptic chain, (iii) staphylococcal neocolonization in newly rehabilitated anatomical oral sites, and (iv) total or partial maintenance of staphylococcal species. The highly frequent clinical periodicity in specialized medical and dental centers may contribute to the acquisition of MRSA in these patients.

Predictive factors of right heart catheterization to diagnose pulmonary arterial hypertension using least absolute shrinkage selection operator (LASSO) regression

Objective This study involved an analysis of a real world, international survey where physicians provided cross-sectional, retrospective data for patients with pulmonary arterial hypertension (PAH) to determine predictive factors of right heart catheterization (RHC) to confirm their PAH diagnosis. Methods Data were sourced from the Adelphi PAH Disease Specific Programme (DSP) in the United States (US), France, Germany, Italy, Spain, United Kingdom, and Japan, between March and August 2022. Results Overall, 75% (n = 395) of patients with PAH (n = 529) underwent RHC at diagnosis; this varied by country, ranging from 64% in the US to 92% in France. RHC was more likely to be performed in patients with a higher New York Heart Association Functional Class, with key PAH symptoms (dyspnea, palpitations, and cyanosis), and diagnosed at PH specialist centers. Conclusion By understanding the factors associated with RHC utilization at PAH diagnosis, more targeted approaches for improving the diagnosis for patients with suspected PAH may be pursued.

Impact of the COVID-19 Pandemic on Home Mechanical Ventilation in Germany: A Descriptive Observational Study

Introduction: Over the last decade, the number of patients receiving home mechanical ventilation (HMV) has increased significantly, which has led to a limited availability of specialist centres, not least due to the scarcity of healthcare professionals. This situation was exacerbated by the COVID-19 pandemic. It is therefore assumed that the repurposing of resources has led to an aggravated change in the healthcare structure in HMV. Methods: This descriptive observational study analysed the Operation and Procedure Classification Codes for patients receiving HMV from 2008 to 2022. The data were provided by the Federal Statistical Office of Germany. Data were additionally analysed with respect to geographical distribution and ventilation status. Results: A total of 737,770 datasets were analysed (mean age in 2020: 66.5 years). There was a steady increase in HMV initiations (+6%) and controls (+9%) per year before the pandemic (2008–2019). Patient admissions during the pandemic revealed a 28% decrease, with the largest decrease in invasive ventilation (IV) follow-up visits (2019: 3,053; 2020: 2,199; −39%), while the number of IV initiations remained stable. There was a 19% decrease in the number of non-IV initiations in 2020 (16,919 vs. 14,227) and a 32% decrease in the number of follow-ups (45,812 vs. 34,813) in comparison with 2019. Conclusion: The pandemic has led to a significant decline of inpatient admissions for patients receiving HMV. This decline was most pronounced in the first year of the pandemic. Control visits in particular did not reach the pre-pandemic level. This is an indication of the ongoing change in the healthcare landscape as a result of the pandemic.

Desirable clinical settings in general dentistry: moving towards the improvement of the educational program

BackgroundThe main task of dental schools is to prepare professional dentists with a high social responsibility. This study provided some practical suggestions from experts regarding desirable clinical settings, in order to establish an infrastructure for practical studies in Endodontics, Periodontics, Oral and Maxillofacial Surgery, Restorative Dentistry, Pediatric Dentistry, Oral and Maxillofacial Medicine, Prosthodontics, Oral Health, and Social Dentistry.MethodsThis research was conducted using a modified Delphi technique in two rounds. The first round involved qualitative content analysis. Participants in interviews were selected purposeful and maximum diversity across the country. To determine the validity and reliability of the data, the four axes proposed by Lichon and Guba were utilized. The second round involved a researcher-made questionnaire, which consisted of 55 questions. This questionnaire was distributed to all dental schools across the country. The validity of the questionnaire were evaluated and by experts and then reviewed. The reliability of the tool was determined to be 0.96 using the alpha coefficient method.ResultsThe final codes from the interviews of the first round were divided into two categories: settings and educational programs. The final results of research were placed into 2 section: educational settings and instructors, and educational infrastructures. 70% participants agreed to use the college’s clinical morning sessions. More than 80% agreed to start up a main clinic with the proposed structure and professors. The use of the hospitalization area also had an agreement of more than 80%. Additionally, community areas such as health service centers, welfare centers, special patient centers, factories, schools, etc. obtained an agreement of over 70%.ConclusionsThe results of this study are presented in the form of suggestions for improving the general dentistry program in relation to educational setting, educators, and educational infrastructures. The common agreement among participants regarding educational settings and their diversity, educational programs, and desired instructors reviewed in the research shows the necessity of reviewing and changing their educational programs in Endodontics, Periodontics, Oral and Maxillofacial Surgery, Restorative Dentistry, Pediatric Dentistry, Oral and Maxillofacial Medicine, Prosthodontics, Oral Health, and Social Dentistry.

Sharing Our World: Impact of Group Motor Skill Learning on Joint Attention in Children with Autism Spectrum Disorder.

Impaired joint attention is a common feature of autism spectrum disorder (ASD), affecting social interaction and communication. We explored if group basketball learning could enhance joint attention in autistic children, and how this relates to brain changes, particularly white matter development integrity. Forty-nine autistic children, aged 4-12 years, were recruited from special education centers. The experimental group underwent a 12-week basketball motor skill learning, while the control group received standard care. Eye-tracking and brain scans were conducted. The 12-week basketball motor skill learning improved joint attention in the experimental group, evidenced by better eye tracking metrics and enhanced white matter integrity. Moreover, reduced time to first fixation correlated positively with decreased mean diffusivity of the left superior corona radiata and left superior fronto-occipital fasciculus in the experimental group. Basketball-based motor skill intervention effectively improved joint attention in autistic children. Improved white matter fiber integrity related to sensory perception, spatial and early attention function may underlie this effect. These findings highlight the potential of group motor skill learning within clinical rehabilitation for treating ASD.

Designing a resilience-based intervention program for children with cancer and their families: a study protocol.

Advances in pediatric oncology have significantly increased survival rates, yet have introduced challenges in managing long-term treatment side effects. This study process introduces an interdisciplinary clinical intervention program rooted in the family resilience framework, aimed at improving well-being across the cancer trajectory for children and their families, especially those in Canadian communities far from specialized oncology centers with limited access to resources. Employing an intervention mapping approach, this program collaboratively involves patients, families, professionals, and researchers. It aims to identify vulnerability factors, establish a logic model of change, and devise comprehensive strategies that include professional interventions alongside self-management tools. These strategies, tailored to address biopsychosocial and spiritual challenges, are adapted to the unique contexts of communities distant from specialized cancer treatment centers. A mixed-methods approach will evaluate program effectiveness. Anticipated outcomes include the empowerment of families with self-management tools and professional support, designed to mitigate biopsychosocial and spiritual complications. By addressing the specific needs and limitations of these communities, the program strives to improve the overall health and well-being of both undergoing treatment and survivorship phases. By focusing on comprehensive care that includes both professional interventions and self-management, this initiative marks a significant shift toward a holistic, family-centered approach in pediatric oncology care for remote communities. It underlines the necessity of accessible interventions that confront immediate and long-term challenges, aiming to elevate the standard of care by emphasizing resilience, professional support, and family empowerment in underserved areas.

Pediatric Chronic Intestinal Failure: Something Moving?

Pediatric chronic intestinal failure (PIF) is a rare and heterogeneous condition characterized by the inability of the patient's intestine to adequately absorb the required fluids and/or nutrients for growth and homeostasis. As a result, patients will become dependent on home parenteral nutrition (HPN). A MEDLINE search was performed in May 2024 with keywords "intestinal failure", "parenteral nutrition" and "pediatric". Different underlying conditions which may result in PIF include short bowel syndrome, intestinal neuromuscular motility disorders and congenital enteropathies. Most common complications associated with HPN are catheter-related bloodstream infections, catheter-related thrombosis, intestinal failure-associated liver disease, small intestinal bacterial overgrowth, metabolic bone disease and renal impairment. Treatment for children with PIF has markedly improved with a great reduction in morbidity and mortality. Centralization of care in specialist centers and international collaboration between centers is paramount to further improve care for this vulnerable patient group. A recently promising medical therapy has become available for children with short bowel syndrome which includes glucagon-like peptide 2, a naturally occurring hormone which is known to delay gastric emptying and induce epithelial proliferation. Despite advances in curative and supportive treatment, further research is necessary to improve nutritional, pharmacological and surgical care and prevention of complications associated with parenteral nutrition use.

Disclosure and transparency of sustainability information in Spanish social enterprises: An empirical study of audited special employment centers

AbstractThe research analyzes how certain factors such as activity sector, size, and economic‐financial performance can influence the level of disclosure and transparency of sustainability information in special employment centers. This publication is based on an empirical study applying a quantitative methodology in 194 social economy enterprises with data from 2020. The results confirm that companies that disclose sustainability information do so based on GRI standards and in all areas of sustainability. Belonging to certain activity sectors and size influence the disclosure of sustainability information. Also, the results show that assets, operating income, liquidity and economic profitability have an influence. This research contributes to improving the disclosure and transparency of sustainability information in social economy enterprises and provides indicators on management in sustainability aspects, useful for the analysis of subsidy management.

Building Clinical Care Capacity for Patients With Special Pathogens in Advance of the Next Outbreak.

In response to the growing number of outbreaks of emerging infectious diseases, the US Administration for Strategic Preparedness and Response (ASPR) has embarked on a plan to improve and expand special pathogen patient care capabilities. To achieve this, ASPR is developing a coordinated network of Regional Emerging Special Pathogen Treatment Centers (RESPTCs) to serve as state-of-the-art facilities staffed by a highly trained workforce to care for and manage special pathogen patients across the lifespan. The RESPTC network represents the operational arm of a broader US National Special Pathogen System of care to prevent and prepare for the next infectious disease outbreak. RESPTCs are strategically located in every region across the country and form a network linking local and regional healthcare partners to enhance national preparedness through training in best practices for detection, isolation, and treatment of individuals suspected of or known to be infected with a special pathogen. This local, regional, and national network is also designed to lead a coordinated response that includes the dissemination of accurate and trustworthy information to responders and the public. The overarching goal of the RESPTCs is to serve as a valuable resource for clinical care, training, and material support to meet current and future major infectious diseases challenges. In this case study, 2 new RESPTCs, MedStar Washington Hospital Center and the University of North Carolina, describe their experiences related to designing a biocontainment unit, creating clinical teams, building staff resiliency, receiving mentoring from regional RESPTC partners, and developing opportunities for innovation.

P.503: The importance of a Brazilian specialized transplant center in a high-complexity university hospital: An 11 years overview of the outcomes.

P.503: The importance of a Brazilian specialized transplant center in a high-complexity university hospital: An 11 years overview of the outcomes.

Patterns of care and outcomes for hepatocellular carcinoma and pancreatic cancer based on rurality of patient’s residence in a rural midwestern state

BackgroundAlthough advancements in surgical planning and multidisciplinary care have improved the survival of patients with hepatopancreatic cancers in recent years, the impact of the rurality of patient residence on care received and survival is not well known. We aimed to assess the association between the rurality of a patient’s residence and cancer-specific survival outcomes among patients with hepatocellular carcinoma (HCC) and pancreatic cancer (PC) in Iowa, hypothesizing that patients in rural areas would experience lower survival. MethodsAdult patients diagnosed with HCC or PC between 2010 and 2020 were identified using the Iowa Cancer Registry. Chi-square tests were used to compare categorical variables by rural/urban status. Logistic regression was used to examine factors associated with receiving surgery. Multivariable-adjusted Cox proportional hazards regression was used to determine associations with cancer-specific mortality. ResultsOf 1877 patients with HCC, 58%, 27%, and 16% resided in metropolitan, micropolitan, and rural areas, respectively. Approximately 70% of patients in rural areas traveled ≥50 miles for definitive care. Additionally, those residing in rural areas had the highest proportion of patients receiving definitive care at non-Commission on Cancer (CoC) centers (12.6% metro vs 14% micro vs 22.2% rural, P < .001). In a multivariable-adjusted analysis of patients with stage I to III disease, definitive care at a non-CoC center was independently associated with lower odds of surgery (odds ratio [OR] = 0.23; 95% CI, 0.12–0.45; P < .0001) and higher mortality risk (OR = 1.39; 95% CI, 1.07–1.79; P = .01), though rural residence was not. For PC, 5465 patients were diagnosed, and 51%, 28%, and 20% resided in metropolitan, micropolitan, and rural areas, respectively. Similar to HCC, although rural residence was neither associated with odds of surgery nor with mortality risk, receiving definitive care at non-CoC accredited centers was associated with significantly lower odds of receiving surgery (OR = 0.17; 95% CI, 0.11–0.26; P < .0001) and higher mortality risk (OR = 1.48; 95% CI, 1.23–1.77; P < .0001). ConclusionRural residents with hepatopancreatic cancer have the highest proportion of patients receiving definitive care at non-CoC centers, which is associated with lower odds of receiving surgery and higher odds of mortality. This highlights the importance of standardizing complex cancer care and the need to foster collaboration between specialized and non-specialized centers.

Prevalence of Physical Abuse Among Adolescent with Hearing Impairment

The current study was conducted to explore the level of physical abuse faced by adolescents with hearing impairment. A correlation research design was used. The population for this study comprised the students of (grades 5th-10th) age range (12-18) studying in special education schools and centers of the Gujranwala division. A sample of 350 adolescents with hearing impairment (male 186, female 164) was selected using stratified random sampling for this study. ICAST-1 scale was developed by ISPCAN (2015) for physical abuse and was used for data collection 19 items were selected for physical abuse and validated their content validity by experts. The scale was translated into Urdu and validated by the Urdu language experts. Data was analyzed by reporting frequencies and levels of physical abuse. The findings of this study indicate that almost 90% of the adolescents with hearing impairment were facing moderate levels of physical abuse. The majority face moderate physical abuse in the form of being put in time out, shaken aggressively, pinched to cause pain, locked up or restricted movement, kicking, crushed fingers, and threats with a knife/to hurt or kill you as punishment. We need to reconsider the myth of using punishment to improve children's learning and behavior.

Cystic fibrosis foundation position paper: Redefining the cystic fibrosis care team.

Interdisciplinary teams care for people with cystic fibrosis (pwCF) at specialized treatment centers. These teams have laid the foundation for the cystic fibrosis (CF) care model responsible for gains in health outcomes and quality of life within the CF community. However, the landscape of CF care is transforming, invigorated by new technologies, accessibility of cystic fibrosis transmembrane conductance regulator (CFTR) therapies, and increased utilization of telemedicine. In light of these advances, it is appropriate to re-evaluate the CF care team structure. This position paper offers guidance for the structure of a CF care center designed to meet the evolving needs of the CF community. Fundamental to the proposed center structure is recognition of pwCF and their families as integral members of their care teams, underpinning the necessity for shared decision making, awareness of social determinants of health, and active partnership between all healthcare professionals involved in the care of pwCF.