bluuebunny/crossref_metadata_2025_split huggingface dataset:
Grand Duchy of Luxembourg: a case study of a national master patient index in production since five years
Authors: Vaccaroli Raffaella , Markus Frédéric , Danhardt Samuel , Zimmermann Heiko , Wisniewski Francois , Lucas Pascale , Barge Hervé 
Published: July 2020

Abstract
Background
Unequivocal identification of patients is a precondition for a safe medical journey through different information systems (ISs) and software applications that are communicating and exchanging interoperable data. A master patient index (MPI) can facilitate this task. Being a repository of patient identity traits, a MPI allows an accurate surveillance of the patients’ “medical identities”. Up to 2014, the Grand Duchy of Luxembourg did not possess a MPI. Here, we describe our experience in the establishment of a national MPI for the Grand Duchy of Luxembourg.

Methods
The different steps that were used to establish the MPI system are described. Firstly, through the identification of the suitable application and, secondly, through the implementation of the MPI to the eHealth national platform and its connection to the national health care system. In parallel to the first two phases, the identity management policies were defined and implemented.

Results
Since 2014, when the MPI was integrated to the eHealth platform, we observed a continuous increase of identity profiles. At the latest update (31 December 2018), 2.418.336 identity profiles have been counted, including almost the totality of Luxembourgish residents (95.2%) as well as all the cross-border workers that are affiliated to the Luxembourgish social security system. An analysis of the identification domains connected to the platform highlighted a yearly increase in the usage rate of the identities by external applications (currently representing 70%). The evaluation of the quality of information contained in each identity profile showed low rejection rates (0.2%), indicating a high quality and a good level of completeness in regards to the required identity traits.

Conclusions
This paper presents the current state of patient identity management in Luxembourg and discusses how this synergistically supports the functioning of the national electronic health record (EHR) known as DSP (from the French Dossier de Soins Partagé) and the Luxemburgish health care system. The here described national MPI has refined the identification of patients, leading to an improvement of their safety during their medical journey. Nevertheless, the application regularly undergoes updates to better meet the current requirements of the Luxembourgish health system.
Health professionals’ perceptions of colorectal cancer patients’ treatment burden and their supportive work to ameliorate the burden – a qualitative study
Authors: Husebø Anne Marie Lunde , Karlsen Bjørg , Husebø Sissel Eikeland 
Published: July 2020

Abstract
Background
Support is pivotal for patients in managing colorectal cancer treatment, as they might be overwhelmed by the burden of treatment. There is scarce knowledge regarding health professionals’ perceptions of colorectal cancer patients’ burdens and supportive needs. The study aims to describe health professionals’ perspectives on treatment burden among patients receiving curative surgical treatment for colorectal cancer during the hospital stay and how they support patients to ameliorate the burden.

Methods
This study has a descriptive and explorative qualitative design, using semi-structured interviews with nine health professionals recruited from a gastrointestinal-surgery ward at a university hospital in Norway. Data were analysed by using systematic text condensation.

Results
Data analysis identified the themes “capturing patients’ burdens of colorectal cancer treatment” and “health professionals’ support to ameliorate the burden”. Patients with colorectal cancer had to face burdens related to a challenging emotional situation, treatment complications and side effects, and an extensive need for information. A trusting patient-carer relationship was therefore perceived as the essence of health professionals’ support. Health professionals focused their support on safeguarding patients, motivating patients to self-manage, and involving family and peers as supporters. Patients’ journey characteristics and illness severity challenged health professionals’ supportive work.

Conclusion
Support from health professionals includes providing patients emotional support and relevant treatment-related information and motivating patients for early post-surgical mobilisation. Health professionals should be aware of identifying colorectal cancer patients’ information needs according to the specific treatment stages, which may ameliorate the burden of colorectal cancer treatment and enable patients to self-manage.
Feasibility and desirability of scaling up Community–based Health Insurance (CBHI) in rural communities in Uganda: lessons from Kisiizi Hospital CBHI scheme
Authors: Kakama Alex A. , Namyalo Prossy K. , Basaza Robert K. 
Published: July 2020

Abstract
Background
Community-based Health Insurance (CBHI) schemes have been implemented world over as initial steps for national health insurance schemes. The CBHI concept developed out of a need for financial protection against catastrophic health expenditures to the poor after failure of other health financing mechanisms. CBHI schemes reduce out-of-pocket payments, and improve access to healthcare services in addition to raising additional revenue for the health sector. Kisiizi Hospital CBHI scheme which was incepted in 1996, has 41,500 registered members, organised in 210 community associations known as ‘Bataka’ or ‘Engozi’ societies. Members pay annual premiums and a co-payment fee before service utilisation. This study aimed at exploring the feasibility and desirability of scaling up CBHI in Rubabo County, with specific objectives of: exploring community perceptions and determining acceptability of CBHI, identifying barriers, enablers to scaling up CBHI and documenting lessons regarding CBHI expansion in a rural community.

Methods
Explorative study using qualitative methods of Key informant interviews and Focus Group Discussions (FGDs). Seventeen key informant interviews, three focus group discussions for scheme members and three for non-scheme members were conducted using a topic guide. Data was analysed using thematic approach.

Results
Scaling up Kisiizi Hospital CBHI is desirable because: it conforms to the government social protection agenda, society values, offers a comprehensive benefits package, and is a better healthcare financing alternative for many households. Scaling up Kisiizi Hospital CBHI is largely feasible because of a strong network of community associations, trusted quality healthcare services at Kisiizi Hospital, affordable insurance fees, trusted leadership and management systems. Scheme expansion faces some obstacles that include: long distances and high transport costs to Kisiizi Hospital, low levels of knowledge about health insurance, overlapping financial priorities at household level and inability of some households to pay premiums.

Conclusions
CBHI implementation requires the following considerations: conformity with society values and government priorities, a comprehensive benefits package, trusted quality of healthcare services, affordable fees, trusted leadership and management systems.
What is the right sequencing approach? Solo VS extended family analysis in consanguineous populations
Authors: Alfares Ahmed , Alsubaie Lamia , Aloraini Taghrid , Alaskar Aljoharah , Althagafi Azza , Alahmad Ahmed , Rashid Mamoon , Alswaid Abdulrahman , Alothaim Ali , Eyaid Wafaa , Ababneh Faroug , Albalwi Mohammed , Alotaibi Raniah , Almutairi Mashael , Altharawi Nouf , Alsamer Alhanouf , Abdelhakim Marwa , Kafkas Senay , Mineta Katsuhiko , Cheung Nicole , Abdallah Abdallah M. , Büchmann-Møller Stine , Fukasawa Yoshinori , Zhao Xiang , Rajan Issaac , Hoehndorf Robert , Al Mutairi Fuad , Gojobori Takashi , Alfadhel Majid 
Published: July 2020

Abstract
Background
Testing strategies is crucial for genetics clinics and testing laboratories. In this study, we tried to compare the hit rate between solo and trio and trio plus testing and between trio and sibship testing. Finally, we studied the impact of extended family analysis, mainly in complex and unsolved cases.

Methods
Three cohorts were used for this analysis: one cohort to assess the hit rate between solo, trio and trio plus testing, another cohort to examine the impact of the testing strategy of sibship genome vs trio-based analysis, and a third cohort to test the impact of an extended family analysis of up to eight family members to lower the number of candidate variants.

Results
The hit rates in solo, trio and trio plus testing were 39, 40, and 41%, respectively. The total number of candidate variants in the sibship testing strategy was 117 variants compared to 59 variants in the trio-based analysis. We noticed that the average number of coding candidate variants in trio-based analysis was 1192 variants and 26,454 noncoding variants, and this number was lowered by 50–75% after adding additional family members, with up to two coding and 66 noncoding homozygous variants only, in families with eight family members.

Conclusion
There was no difference in the hit rate between solo and extended family members. Trio-based analysis was a better approach than sibship testing, even in a consanguineous population. Finally, each additional family member helped to narrow down the number of variants by 50–75%. Our findings could help clinicians, researchers and testing laboratories select the most cost-effective and appropriate sequencing approach for their patients. Furthermore, using extended family analysis is a very useful tool for complex cases with novel genes.
Identification of a three-long noncoding RNA prognostic model involved competitive endogenous RNA in kidney renal clear cell carcinoma
Authors: Zhang Di , Zeng Song , Hu Xiaopeng 
Published: July 2020

Abstract
Background
Long noncoding RNA (lncRNA) is generally identified as competing endogenous RNA (ceRNA) that plays a vital role in the pathogenesis of kidney renal clear cell carcinoma (KIRC), the most common subtype of renal cell carcinoma with poor prognosis and unclear pathogenesis. This study established a novel ceRNA network and thus identified a three-lncRNA prognostic model in KIRC patients.

Methods
Differentially expressed genes (DEGs) were screened out from The Cancer Genome Atlas (TCGA) database. The lncATLAS was applied to determine the differentially expressed lncRNAs (DElncRNAs) of the cytoplasm. The miRcode, miRDB, miRTarBase, and TargetScan databases were utilized to predict the interactions of DElncRNAs, DEmiRNAs, and DEmRNAs. Cytoscape was used to construct the ceRNA network. Then, a lncRNA prognostic model (LPM) was constructed based on ceRNA-related lncRNA that was significantly related to overall survival (OS), and its predictive ability was evaluated. Moreover, an LPM-based nomogram model was constructed. The significantly different expression of genes in the LPM was validated in an independent clinical cohort (N = 21) by quantitative RT-PCR.

Results
A novel ceRNA regulatory network, including 73 lncRNAs, 8 miRNAs, and 21 mRNAs was constructed. Functional enrichment analysis indicated that integral components of membrane and PI3K–Akt signaling pathway represented the most significant GO terms and pathway, respectively. The LPM established based on three lncRNAs (MIAT, LINC00460, and LINC00443) of great prognostic value from the ceRNA network was proven to be independent of conventional clinical parameters to differentiate patients with low or high risk of poor survival, with the AUC of 1-, 5- and 10-year OS were 0.723, 0.714 and 0.826 respectively. Furthermore, the nomogram showed a better predictive value in KIRC patients than individual prognostic parameters. The expression of MIAT and LINC00460 was significantly upregulated in the KIRC samples, while the expression of LINC00443 was significantly downregulated compared with the adjacent normal samples in the clinical cohort, TCGA, and GTEx.

Conclusion
This LPM based on three-lncRNA could serve as an independent prognostic factor with a tremendous predictive ability for KIRC patients, and the identified novel ceRNA network may provide insight into the prognostic biomarkers and therapeutic targets of KIRC.
A national model of remote care for assessing and providing opioid agonist treatment during the COVID-19 pandemic: a report
Authors: Crowley Des , Delargy Ide 
Published: July 2020

Abstract
Background
Health services globally are struggling to manage the impact of COVID-19. The existing global disease burden related to opioid use is significant. Particularly challenging groups include older drug users who are more vulnerable to the effects of COVID-19. Increasing access to safe and effective opioid agonist treatment (OAT) and other harm reduction services during this pandemic is critical to reduce risk. In response to COVID-19, healthcare is increasingly being delivered by telephone and video consultation, and this report describes the development of a national model of remote care to eliminate waiting lists and increase access to OAT in Ireland.

Purpose and findings
The purpose of this initiative is to provide easy access to OAT by developing a model of remote assessment and ongoing care and eliminate existing national waiting lists. The Irish College of General Practitioners in conjunction with the National Health Service Executive office for Social Inclusion agreed a set of protocols to enable a system of remote consultation but still delivering OAT locally to people who use drugs.
This model was targeted at OAT services with existing waiting lists due to a shortage of specialist medical staff. The model involves an initial telephone assessment with COVID-risk triage, a single-patient visit to local services to provide a point of care drug screen and complete necessary documentation and remote video assessment and ongoing management by a GP addiction specialist. A secure national electronic health link system allows for the safe and timely delivery of scripts to a designated local community pharmacy.

Conclusion
The development of a remote model of healthcare delivery allows for the reduction in transmission risks associated with COVID-19, increases access to OAT, reduces waiting times and minimises barriers to services. An evaluation of this model is ongoing and will be reported once completed. Fast adaptation of OAT delivery is critical to ensure access to and continuity of service delivery and minimise risk to our staff, patients and community. Innovative models of remote healthcare delivery adapted during the COVID-19 crisis may inform and have important benefits to our health system into the future.
Functional dependence and the mental dimension of quality of life in Hemodialysis patients: the PROHEMO study
Authors: Gutiérrez-Peredo Gabriel Brayan , Martins Márcia Tereza Silva , da Silva Fernanda Albuquerque , Lopes Marcelo Barreto , Lopes Gildete Barreto , Lopes Antonio Alberto 
Published: July 2020

Abstract
Background
Functional dependence is highly prevalent in maintenance hemodialysis (MHD) settings. Also, poor health-related quality of life (HRQoL) and high levels of depressive symptoms have been reported by MHD patients. We investigated associations between functional status and mental aspects of quality of life in Brazilian MHD patients.

Methods
Cross sectional study of 235 patients enrolled in two of the four participating MHD clinics of the Prospective Study of the Prognosis of Chronic Hemodialysis Patients (PROHEMO) in Salvador, BA, Brazil. Data were collected from September 2016 to August 2017. The Katz’s questionnaire was used for basic activities of daily living (ADL) and the Lawton-Brody’s questionnaire for instrumental activities of daily living (IADL). ADL and IADL scores were combined to create 3 functional status groups: highly dependent (n = 47), moderately dependent (n = 109) and independent (n = 82). The validated Brazilian version of the Kidney Disease Quality of Life Short Form (KDQOL-SF) was used for scores of two distinct HRQoL measures, i.e., the mental component summary (MCS) and the 5-item mental health inventory (MHI-5). We used linear regression to estimate differences in scores with adjustment for possible confounders: months of dialysis, age, gender, other sociodemographic variables, body mass index, type of vascular access, dialysis dose by Kt/V, laboratory variables (albumin, blood hemoglobin, calcium, phosphorus, urea, creatinine and parathyroid hormone) and nine comorbid conditions.

Results
Mean age was 51.2 ± 12.4 yr (median age = 51.0 yr), 59.1% were male, 93.2% were non-White. The prevalence of self-reported functional status differed by age: 54.4% for age < 45 yr, 67.8% for age 45–60 yr and 73.9% for age ≥ 60 yr. Using functionally independent as reference, lower scores were observed for highly dependent patients in MCS (difference: -4.69, 95% CI: -8.09, -0.29) and MHI-5 (difference: -5.97, 95% CI: -8.09, -1.29) patients. These differences changed slightly with extensive adjustments for covariates.

Conclusions
Our results call attention to a high prevalence of functional dependence in younger and older MHD patients. The results suggest that the lower self-reported mental quality of life in functionally dependent MHD patients cannot be explained by differences in age and comorbidities.
Radiotherapy in the Caribbean: a spotlight on the human resource and equipment challenges among CARICOM nations
Authors: Alleyne-Mike Kellie , Sylvester Pearse , Henderson-Suite Vladimir , Mohoyodeen Thana 
Published: July 2020

Abstract
Background
There is limited data on access to radiotherapy services for CARICOM nations.

Methods
This was a descriptive mixed-methods observational study which used data collected via survey from staff working in Radiation Oncology in 14 CARICOM countries. Benchmark recommendations from the International Atomic Energy Agency were compared to existing numbers. The Directory of Radiotherapy Centers, World Bank, and Global Cancer Observatory databases were all accessed to provide information on radiotherapy machines in the region, population statistics, and cancer incidence data respectively. Both population and cancer incidence-based analyses were undertaken to facilitate an exhaustive review.

Results
Radiotherapy machines were present in only 50% of the countries. Brachytherapy services were performed in only six countries (42.9%).
There were a total of 15 external beam machines, 22 radiation oncologists, 22 medical physicists, and 60 radiation therapists across all nations.
Utilizing patient-based data, the requirement for machines, radiation oncologists, medical physicists, and radiation therapists was 40, 66, 44, and 106, respectively. Only four (28.6%) countries had sufficient radiation oncologists. Five (35.7%) countries had enough medical physicists and radiation therapists.
Utilizing population-based data, the necessary number of machines, radiation oncologists, and medical physicists was 105, 186, and 96 respectively. Only one county (7.1%) had an adequate number of radiation oncologists. The number of medical physicists was sufficient in just three countries (21.4%). There were no International Atomic Energy Agency population guidelines for assessing radiation therapists.
A lower economic index was associated with a larger patient/population to machine ratio. Consequentially, Haiti had the most significant challenge with staffing and equipment requirements, when compared to all other countries, regardless of the evaluative criteria. Depending on the mode of assessment, Haiti’s individual needs accounted for 37.5% (patient-based) to 59.0% (population-based) of required machines, 40.1% (patient-based) to 59.7% (population-based) of needed radiation oncologists, 38.6% (patient-based) to 58.3% (population-based) of medical physicists, and 42.5% (patient-based) of radiation therapists.

Conclusion
There are severe deficiencies in radiotherapy services among CARICOM nations. Regardless of the method of comparative analysis, the current allocation of equipment and staffing scarcely meets 50% of regional requirements.
Immunohistochemical analysis of sensory corpuscles in human transplants of the anterior cruciate ligament
Authors: Rebmann D. , Mayr H. O. , Schmal H. , Hernandez Latorre S. , Bernstein A. 
Published: July 2020

Abstract
Background
Sensory nerve endings in ligaments play an important role for the proprioceptive function. Clinical trials show that the sense of body position does not fully recover in the knee joint after reconstructive surgery of the ruptured anterior cruciate ligament. The aim of this study is to identify sensory corpuscles in autogenous and allogenous transplants of the ligament and to compare their quantity between the used allografts and autografts.

Methods
Thirty-three patients were included in this study. Three patellar tendon allografts, 14 patellar tendon autografts and 12 semitendinosus autografts were harvested during revision surgery after traumatic rerupture of the graft. The control consisted of 4 healthy anterior cruciate ligaments after fresh rupture. After haematoxylin staining, immunohistochemical analysis was performed using antibodies against S100, p75 and PGP9.5. Microscopical examination was carried out, and the number of mechanoreceptors was counted. Statistical analysis was performed using the Mann-Whitney U test.

Results
Two types of mechanoreceptors were identified in each graft: Ruffini corpuscles and free nerve endings. The number of Ruffini corpuscles per square centimeter was the highest in the control. Comparing the grafts, the highest number of receptors could be detected in the semitendinosus autograft. The amount of free nerve endings was higher in the semitendinosus and patellar tendon autografts than in the control; the allografts showed the lowest number of receptors. With increasing time after reconstruction, the number of both types of receptors showed a decrease in the semitendinosus graft, whereas it increased in the patellar tendon graft and allograft. The number of mechanoreceptors in the semitendinosus and patellar tendon graft decreased over time after graft-failure, whereas it increased slightly in the allograft.

Conclusion
This study was the first to identify mechanoreceptors in human transplants of the anterior cruciate ligament. The partial increase in the number of receptors over time after reconstruction could indicate a reinnervation of the grafts.