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This protocol presents a comprehensive proposal for the establishment of the Saudi Cerebral Palsy Register (SCPR), a crucial project for investigating and addressing the prevalence, etiology, and management of cerebral palsy (CP) in Saudi Arabia. The SCPR will not only provide a robust database for ongoing research and analysis but will also serve as a platform for investigating the causes of CP, implementing preventative strategies, and improving the quality of care and outcomes for people with CP and their families in Saudi Arabia. Detailed case definitions, inclusion/exclusion criteria, and data collection protocols are discussed to ensure the integrity and comparability of the data. The plan also outlines strategic funding, institutional and government endorsement, sustainability considerations, potential challenges and proposed solutions, and expected outcomes and impact. These include creating research and educational opportunities, fostering regional and international collaborations, and significantly contributing to CP prevention strategies. Overcoming anticipated obstacles, such as stigma, institutional policies, and collaborations, and securing both necessary funding and endorsements are highlighted as critical for the success of the SCPR. The project is not only aligned with promote prevention of health risks, a target of Vision 2030 in Saudi Arabia, but is also expected to have a substantial impact on the health and quality of life of people with CP and their families in Saudi Arabia, serving as inspiration for similar efforts worldwide.
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Paralisia Cerebral , Sistema de Registros , Humanos , Paralisia Cerebral/prevenção & controle , Paralisia Cerebral/epidemiologia , Arábia Saudita/epidemiologia , PrevalênciaRESUMO
Introduction: Little work has been done on out-of-hospital cardiac arrest (OHCA) in Saudi Arabia. Our goal is to report the characteristics of OHCA patients and predictors of bystander cardiopulmonary resuscitation (CPR). Materials and methods: This cross-sectional study utilized data from the Saudi Red Crescent Authority (SRCA), a governmental emergency medical service (EMS). A standardized data collection form based on the "Utstein-style" guidelines was developed. Data were retrieved from the electronic patient care reports that SRCA providers fill out for every case. OHCA cases that were attended by SRCA in Riyadh province between June 1st, 2020 and May 31st, 2021 were included. Multivariate regression analysis was performed to assess independent predictors of bystander CPR. Results: A total of 1,023 OHCA cases were included. The mean age was 57.2 (±22.6). 95.7% (979/1,023) of cases were adults and 65.2% (667/1,023) were males. Home was the most common location of OHCA [784/1,011 (77.5%)]. The initial recorded rhythm was shockable in 131/742 (17.7%). The EMS mean response time was 15.9â min (±11.1). Bystander CPR was performed in 130/1,023 (12.7%) and was more commonly performed in children as compared to adults [12/44 (27.3%) vs. 118/979 (12.1%), p = 0.003]. Independent predictors of bystander CPR were being a child (OR = 3.26, 95% CI [1.21-8.82], p = 0.02) and having OHCA in a healthcare institution (OR = 6.35, 95% CI [2.15-18.72], p = 0.001). Conclusion: Our study reported the characteristics of OHCA cases in Saudi Arabia using EMS data. We observed young age at presentation, low rates of bystander CPR, and long response time. These characteristics are distinctly different from other countries and call for urgent attention to OHCA care in Saudi Arabia. Lastly, being a child and having OHCA in a healthcare institution were found to be independent predictors of bystander CPR.
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Background: Road traffic injuries are a leading cause of death in Saudi Arabia. Studies have examined the impact of the COVID-19 pandemic on traffic injuries treated in healthcare institutions, but its impact on patients seeking emergency medical transport for traffic injuries remains unclear. Objective: This study aimed to determine changes in traffic injuries' distribution and outcomes among patients seeking emergency medical transport before, during, and after the COVID-19 restrictions were imposed in Saudi Arabia. Methods: This is a nationwide retrospective study of all injuries reported to the Saudi Red Crescent Authority (SRCA) between January 1st, 2020, and May 31st, 2021. The cases in the study were categorized based on the following three time periods: (1) Pre-restriction (January 1 to March 23, 2020), (2) restriction (March 24 to June 21, 2020), and (3) post-restriction (June 22, 2020, to May 31, 2021). Results: A total of 142,763 cases of traffic-related injuries were recorded at the SRCA during the study period: pre-restriction, 27,811 (19.5%); restriction, 14,414 (10.1%); post-restriction, 100,538 (70.4%). Males accounted for most cases throughout the study period, but a significant increase in the number of females was observed in the post-restriction period compared with the first two timeframes (12.2% vs. 3.4% and 3.4%, respectively; P < 0.01). During the restriction period, the rate of mortality was the highest, and rollover crashes were significantly higher (18.2% vs. 14.0% and 14.6%; P < 0.01). Overall, pedestrians were almost three times more likely to die following injuries than occupants or drivers (OR = 2.7). Conclusions: Further prevention programs to reduce traffic injuries are needed to improve traffic safety and improve population health.
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Importance: The treatment plans of patients with cancer involve multiple modalities that oncologists need to explain to patients. One such modality is chemotherapy, in which information about the goals, duration, and expected complications of therapy are considered fundamental to achieving optimal patient understanding. Therefore, effective communication between patients and their treating physicians is important to ensure patient adherence to treatment and achieve better outcomes. Objective: To investigate the concordance in the understanding of chemotherapy treatment plans between patients and their treating oncologists and to identify the potential factors associated with concordance. Design, Setting, and Participants: A cross-sectional study was conducted among adult patients (aged >18 years) with cancer who consented to receive chemotherapy between October 4, 2017, and November 8, 2018. The study also included the treating oncologists of patients receiving chemotherapy. An interview-based structured questionnaire was administered in both inpatient and outpatient settings at the Princess Noorah Oncology Center in Jeddah, Saudi Arabia. The demographic data of patients and physicians were obtained from the ARIA Oncology Information System, a chemotherapy-prescribing software database used at the center. Patients who had a personal history of cancer or were unwilling to be involved in the decision-making process were excluded. Data were analyzed from November 15 to December 20, 2018. Exposures: Patients' comprehension and concordance with their treating physicians regarding the aspects of the intended treatment plan. Main Outcomes and Measures: The main outcomes measured were the patient-physician concordance level in the understanding of treatment plans and the identification of patient-related and physician-related factors associated with the level of concordance. Results: A total of 151 adult patients (77 men [51.0%] and 74 women [49.0%]) were interviewed. Of those, 144 patients (75.5%) were younger than 60 years, and 52 patients (34.4%) had a college or advanced degree. A total of 20 treating oncologists were interviewed, of whom 14 (70.0%) were men and 6 (30.0%) were women. Arabic was the primary language of 19 oncologists (95.0%), and 19 oncologists (95.0%) had medical practice experience outside of Saudi Arabia. Only 20 patients (13.7%) had full concordance with their physicians regarding the aspects of their treatment plans. The remaining 131 patients (86.2%) had discordance with 1 or more aspect of their treatment plans. The most common aspect of discordance was the planned duration of the chemotherapy regimen, with 104 patients (68.4%) having full discordance. Full patient-physician concordance was more likely among patients with college or advanced degrees (χ21 = 17.73; P < .001) and patients with a family history of cancer (χ21 = 15.88; P < .001). In addition, older physicians (>40 years) compared with younger physicians (aged 30-40 years) were more likely to achieve higher rates of full patient-physician concordance, whereas older patients (>60 years) were associated with only partial concordance compared with patients younger than 60 years (χ21 = 5.84; P = .008), with an AR of 2.7. Conclusions and Relevance: Most patients showed suboptimal understanding of aspects of their chemotherapy treatment plans. More effort and time should be dedicated to enhancing the understanding of chemotherapy plans among patients with lower educational levels. In addition, self-report surveys that evaluate patients' understanding of their chemotherapy treatment plans should be developed and added to the informed consent process to objectively assess how much a patient understands and to develop a stepwise patient education program that targets patients with the lowest levels of understanding.
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Antineoplásicos/uso terapêutico , Neoplasias/tratamento farmacológico , Oncologistas , Educação de Pacientes como Assunto , Conhecimento do Paciente sobre a Medicação , Adolescente , Adulto , Estudos Transversais , Duração da Terapia , Escolaridade , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Arábia Saudita , Adulto JovemRESUMO
Familial hemophagocytic lymphohistiocytosis (HLH) is a fatal autosomal recessive disorder resulting in an exaggerated and ineffective immune response. Genetic defects in familial HLH can lead to the impaired function of the secretory lysosome-dependent exocytosis pathway. We report an STXBP2 homozygous missense mutation c.1139A>G, p.(Gln380Arg) consistent with a genetic diagnosis of familial hemophagocytic lymphohistiocytosis type 5 associated with chronic diarrhea in a seven-year-old girl. She was diagnosed with HLH and achieved remission by the HLH-2004 protocol and allogeneic matched bone marrow transplantation (BMT) from her sibling. However, six years later, she had a relapse of HLH, which required a second BMT. Ever since then, she continued to have persistent chronic watery diarrhea and failure to thrive. Patients with familial HLH type 5 due to STXBP2 gene mutation can manifest as either with or without chronic diarrhea. This unusual relationship directs toward a specific gene mutation of STXBP2 as the cause of chronic diarrhea in familial HLH. The prevalence of familial HLH in Saudi Arabia is underestimated. Due to the high rate of consanguinity and the local customs of marrying within the same community, clinicians should consider familial HLH as a cause of persistent, unexplained, chronic diarrhea among the pediatric age group.
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INTRODUCTION: World Health Organization advocates that 3-5% of the population should donate blood yearly. However, the donors in Saudi Arabia (SA) in 2011 represented 1.46% of the population. This study aimed to assess knowledge, attitude and practice concerning voluntary blood donation among health professions students in Saudi Arabia and to determine the associated factors. METHODS: This is a cross sectional study on 598 students. Chi-square and Fisher tests were used to analyze the significant association of blood donation and influencing factors. RESULTS: Majority of respondents (360; 60.2%) showed sufficient knowledge regrading blood donation. A total of 593 participants (99.2%) believed that blood donation is important for the community. Around 180 (30.1%) of the respondents have donated blood before. Out of the participants, 422 students (70.6%) reported that they did not take any courses concerning blood donation in their colleges. However, 502 (83.9%) showed a high willingness to donate blood if their colleges organize a blood donation camp within campus. There was a significant association between knowledge level, current academic level and gender with practice of blood donation. CONCLUSION: Saudi health professions colleges' role in promoting blood donation was notably missed. Students showed high willingness to donate blood if a blood camp was organized within the campus. The implementation of encouragement campaigns and educational sessions within the campus will have a great effect on blood donation.
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OBJECTIVES: To examine the association of exposure to sociodemographic, environmental, and lifestyle risk factors during adolescence with the development of multiple sclerosis (MS). METHODS: We conducted a case-control study between October 2017 and January 2018 at King Fahd General Hospital (KFH) in Madinah, Saudi Arabia. Data were collected by direct physician-subject interviews. We utilized a questionnaire modified from the environmental risk factors in multiple sclerosis questionnaire (EnvIMS-Q). Chi-square tests were used to examine associations of selected risk factors with the development of MS, a p-value of less than 0.05 was considered significant. RESULTS: A total of 80 cases and 160 controls were enrolled into the study. Smoking during adolescence significantly increased the risk of MS, with an adjusted odds ratio (AOR) of 4.165, and a 95% confidence interval (CI) of 1.449-11.974. Large body size, assessed using a figure rating scale, also increased the risk of MS (AOR=8.970, 95% CI=1.032-77.983), as well as a history of measles infection (AOR=3.758, 95% CI=1.455-9.706). Furthermore, exposure to sunlight during the weekend for more than 4 hours/day decreased the risk of MS (AOR=0.063, 95% CI=0.006-0.654), so did the consumption of fish for more than once per week (AOR=0.206, 95% CI=0.055-0.773). Conclusion: The risk of developing MS is significantly increased by exposure during adolescence to smoking, a history of measles infection, and large body size (obesity).
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Esclerose Múltipla/etiologia , Adolescente , Adulto , Estudos de Casos e Controles , Distribuição de Qui-Quadrado , Criança , Meio Ambiente , Feminino , Humanos , Estilo de Vida , Masculino , Sarampo/complicações , Pessoa de Meia-Idade , Esclerose Múltipla/epidemiologia , Obesidade Infantil/complicações , Fatores de Risco , Arábia Saudita/epidemiologia , Fumar/efeitos adversos , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto JovemRESUMO
Systemic primary carnitine deficiency (SPCD) is an autosomal recessive inborn error of fatty acid metabolism caused by a defect in the transporter responsible for moving carnitine across plasma membrane. The clinical features of SPCD vary widely based on the age of onset and organs involved. During infancy, patients might show episodes of hypoketotic hypoglycemia, hepatomegaly, elevated transaminases, and hyperammonemia. Skeletal myopathy, elevated creatine kinase, and cardiomyopathy are the main manifestations in children with SPCD, while in adults, the disorder is usually manifested as cardiomyopathy, arrhythmias, or fatigability. Here, we report a 5-year-old boy with SPCD that presented as dilated cardiomyopathy with atypical features, such as anemia, respiratory distress, and proximal muscle weakness. This report supports considering carnitine deficiency treatment in the work-up of unexplained pediatric dilated cardiomyopathy.