Epidemiological Profile of Children with Neurodevelopmental Disorders in a Diagnostic Center in Southern Puerto Rico, 2006-2017

Objective: This study has the purpose of developing an epidemiological profile of children with Neurodevelopmental disorders in southern Puerto Rico Methods: This is an exploratory study with a mixed design that carried out in a diagnostic center located in Ponce, Puerto Rico. The population under study were children within 0-18 years old of both sexes diagnosed with a Neurodevelopmental disorder using the DSM- 4 and DSM-5 criteria. The sample under investigation were all the children in the secondary database of children who received health services in the diagnostic center within 2016-2017. Additionally, to the data from the secondary database, a hand-writing record review was performed to obtain data related to comorbidities. Bivariate and multivariate analysis evaluated the association between each Neurodevelopmental disorder, and each disease reported in the family history of diseases. Also, bivariate and multivariate analysis assessed the association between each Neurodevelopmental disorder, and each comorbidity reported. Results and conclusions: The mean age and standard deviation of the sample were 5.2 ± 3.20, and 80.5% were males. Also, most of the children lived in Ponce, Puerto Rico. The sample size did not have normal distribution because the sample size is too smaller and not selected by probabilistic methods. Furthermore, 88.2% of the children received a previous evaluation related to the problem, and 70.5% received some treatment for the symptoms. The results revealed that the Neurodevelopmental disorders co-occurred. Also, other comorbidities co-occurred with these disorders. Mental disorders are associated with Autism, ADHD and Communication Disorders. Also, family history of Mental disorders is associated with Autism.

Communicating With Patients About Software for Enhancing Privacy in Secondary Database Research Involving Record Linkage: Delphi Study

Background There is substantial prior research on the perspectives of patients on the use of health information for research. Numerous communication barriers challenge transparency between researchers and data participants in secondary database research (eg, waiver of informed consent and knowledge gaps). Individual concerns and misconceptions challenge the trust in researchers among patients despite efforts to protect data. Technical software used to protect research data can further complicate the public's understanding of research. For example, MiNDFIRL (Minimum Necessary Disclosure For Interactive Record Linkage) is a prototype software that can be used to enhance the confidentiality of data sets by restricting disclosures of identifying information during the record linkage process. However, software, such as MiNDFIRL, which is used to protect data, must overcome the aforementioned communication barriers. One proposed solution is the creation of an interactive web-based frequently asked question (FAQ) template that can be adapted and used to communicate research issues to data subjects. Objective This study aims to improve communication with patients and transparency about how complex software, such as MiNDFIRL, is used to enhance privacy in secondary database studies to maintain the public's trust in researchers. Methods A Delphi technique with 3 rounds of the survey was used to develop the FAQ document to communicate privacy issues related to a generic secondary database study using the MiNDFIRL software. The Delphi panel consisted of 38 patients with chronic health conditions. We revised the FAQ between Delphi rounds and provided participants with a summary of the feedback. We adopted a conservative consensus threshold of less than 10% negative feedback per FAQ section. Results We developed a consensus language for 21 of the 24 FAQ sections. Participant feedback demonstrated preference differences (eg, brevity vs comprehensiveness). We adapted the final FAQ into an interactive web-based format that 94% (31/33) of the participants found helpful or very helpful. The template FAQ and MiNDFIRL source code are available on GitHub. The results indicate the following patient communication considerations: patients have diverse and varied preferences; the tone is important but challenging; and patients want information on security, identifiers, and final disposition of information. Conclusions The findings of this study provide insights into what research-related information is useful to patients and how researchers can communicate such information. These findings align with the current understanding of health literacy and its challenges. Communication is essential to transparency and ethical data use, yet it is exceedingly challenging. Developing FAQ template language to accompany a complex software may enable researchers to provide greater transparency when informed consent is not possible.

Communicating With Patients About Software for Enhancing Privacy in Secondary Database Research Involving Record Linkage: Delphi Study (Preprint)

BACKGROUND There is substantial prior research on the perspectives of patients on the use of health information for research. Numerous communication barriers challenge transparency between researchers and data participants in secondary database research (eg, waiver of informed consent and knowledge gaps). Individual concerns and misconceptions challenge the trust in researchers among patients despite efforts to protect data. Technical software used to protect research data can further complicate the public's understanding of research. For example, MiNDFIRL (Minimum Necessary Disclosure For Interactive Record Linkage) is a prototype software that can be used to enhance the confidentiality of data sets by restricting disclosures of identifying information during the record linkage process. However, software, such as MiNDFIRL, which is used to protect data, must overcome the aforementioned communication barriers. One proposed solution is the creation of an interactive web-based frequently asked question (FAQ) template that can be adapted and used to communicate research issues to data subjects. OBJECTIVE This study aims to improve communication with patients and transparency about how complex software, such as MiNDFIRL, is used to enhance privacy in secondary database studies to maintain the public's trust in researchers. METHODS A Delphi technique with 3 rounds of the survey was used to develop the FAQ document to communicate privacy issues related to a generic secondary database study using the MiNDFIRL software. The Delphi panel consisted of 38 patients with chronic health conditions. We revised the FAQ between Delphi rounds and provided participants with a summary of the feedback. We adopted a conservative consensus threshold of less than 10% negative feedback per FAQ section. RESULTS We developed a consensus language for 21 of the 24 FAQ sections. Participant feedback demonstrated preference differences (eg, brevity vs comprehensiveness). We adapted the final FAQ into an interactive web-based format that 94% (31/33) of the participants found helpful or very helpful. The template FAQ and MiNDFIRL source code are available on GitHub. The results indicate the following patient communication considerations: patients have diverse and varied preferences; the tone is important but challenging; and patients want information on security, identifiers, and final disposition of information. CONCLUSIONS The findings of this study provide insights into what research-related information is useful to patients and how researchers can communicate such information. These findings align with the current understanding of health literacy and its challenges. Communication is essential to transparency and ethical data use, yet it is exceedingly challenging. Developing FAQ template language to accompany a complex software may enable researchers to provide greater transparency when informed consent is not possible.

The Socioeconomic Vulnerability of Coastal Communities to Abrasion In Samas, Bantul Regency, Indonesia

This research was conducted in Srigading and Gadingsari Villages, Samas District, Bantul Regency, the Special Region of Yogyakarta. Both of these villages were selected as the study area because of their high vulnerability to coastal erosion. This research aimed to analyse the physical, social, and economic vulnerability and the capacity of communities in both villages to deal with erosion in Samas Coast using primary and secondary database. According to the results of the physical and socioeconomic scenarios, Srigading has a high vulnerability level, whereas Gadingsari has a low vulnerability level. Meanwhile, the equal scenario results in the same spatial distribution of vulnerability as the aforementioned scenarios. This research also finds that the capacity, which was based on knowledge of coastal erosion and its risk reduction measures, is categorized as medium. This capacity level is shaped by the constantly improved preparedness as communities experience coastal erosions directly.

Epidemiological characterization and risk evaluation associated with the presence of Megninia spp. in posture farms

ABSTRACT: This study was accomplished with the aim to evaluate and to characterize the risks for the presence of Megninia spp. in poultry farms from Minas Gerais, using for that Correspondence Analysis (CA). A secondary database was used and adapted for this study, with information from 402 chicken houses of 42 laying hens commercial properties. Variables used to compose the correspondence model were selected through tests of Qui-square being considered the significant result of P≤0,05. A risk index was built to the presence of Megninia spp. starting from variables considered as risk factors for the presence of those ectoparasites. The CA graph produced for the epidemiological characterization of the presence of Megninia spp. presented an accumulated qui-square value of 58,55%. There was an association of the risk index with the age ranges of the poultry, among the presence Megninia spp. and the use of mineral oil and acaricide in the ration and; finally, an association between the ruddy ground-dove (Columbina talpacoti) presence and the absence of mites of the Megninia genus. The results supply knowledge on the epidemiology of Megninia spp. In addition, these information can contribute in the decision, reducing the risks of possible infestations in poultry farms and the negative effects of that parasitism.

Strategic technology partnering capabilities

Purpose – Strategic technology partnering (STP) is considered to be significant for the access to novel technologies that are unknown to organisations. However, the performance heterogeneities within organisations can be explained by STP capabilities. Hence, the purpose of this paper is threefold: first, to provide a classificatory framework by categorising the various STP capabilities; second, to draw conclusions from the analysis of the empirical findings; and third, to guide further publications and identify future research needs. Design/methodology/approach – The present paper adopts a systematic literature review (SLR) methodology. In this research, the extant empirical research on STP capabilities will first be classified and integrated within a classificatory framework. Lastly, the review insights will provide methodological suggestions along with theoretical themes for future research that have not been yet explored. Findings – The study findings show that there is a strong need for a clear and unified terminology for the distinctive capabilities of STP and research has mainly highlighted certain common capabilities while other essential ones lack analysis. The SLR further reveals that most research has been quantitative in nature relying on secondary database research. Originality/value – This SLR provides a thorough overview of prior research on STP capabilities investigating 65 articles published in highly ranked peer-reviewed journals, spanning a 22-year period from 1992 to 2014. In sum, his review structures extant STP capabilities literature into a proposed classificatory framework referred to as “CLONT-framework” and highlights its critical importance in strategic management and innovation research from a theoretical, empirical, and practical point of view.

P039: What are the frequencies of interventions performed by paramedics during seizure calls?

Introduction: Paramedics frequently attend out-of-hospital seizure patients. They administer oxygen, check blood glucose levels and if within scope of practice, start IVs and administer benzodiazepines. Little is know about how frequently these procedures are performed. The objective of this study was to determine the frequency of procedures performed by paramedics (Advanced Care (ACP), Primary Care IV (PCP-IV) and Primary Care non-IV (PCP)) attending seizure patients in a regional paramedic base hospital program. Methods: Retrospective analysis of a secondary database of ambulance call reports (ACRs) (January 01-December 31, 2014). All 2854 ACRs with paramedic determined primary / final problem codes of “seizure” were identified from total calls performed by 8 municipal paramedic services (MPSs), covering an urban and rural population of 1.4 million. MPSs used iMedic electronic ACRs. A 10% sample, generated using a random number table, was analyzed. ACRs were manually searched and data extracted onto spreadsheets. Findings were summarized using descriptive statistics. Results: 285 calls were analyzed; (adult 72.7%, paediatric (age <18) 27.3%). Paramedics witnessed seizures in 8.1% of all calls they attended; (paediatric 7.8%). The blood sugar was checked in 87.9% of adult calls; (ACP 88.7%, PCP-IV 89%, PCP 77.8%) and in 70.5% of paediatric calls; (ACP 72.0%, PCP-IV 63.3%, PCP 70.5%). Oxygen was administered in 80.7% of adult calls; (ACP 85.9%, PCP-IV 78.0%, PCP 80.7%) and 83.3% of paediatric calls; (ACP 92.0%, PCP-IV 80.1%, PCP 82.4%). IVs were started by paramedics (if in scope of practice) in 28.0% of adult calls; (ACP 47.9%, PCP-IV 16.1%) and 6.6% of paediatric calls; (ACP 8.0%, PCP-IV 5.6%) Midazolam was administered in 10.4% of ACP attended calls and in 91.0% of the calls were they witnessed seizures. Transport occurred in 93.2% of adult calls and 100% of paediatric calls. Conclusion: ACPs were more likely to perform procedures on seizure patients than PCPs or PC-IVs. Children were much less likely to have procedures performed on them - blood sugar checks, and IV starts - but more likely receive oxygen and be transported. These findings have training implications.