bluuebunny/crossref_metadata_2025 huggingface dataset:
A qualitative research on co-creating care pathways for Sarcoma and GIST by stimulating reflection
Authors: Petit-Steeghs Violet , Schuitmaker-Warnaar Tjerk Jan , Pruijssers Ciska A , van Oortmerssen Gerard , Broerse Jacqueline EW
Published: March 2020

Introduction

Care Pathway Management intends to enhance the quality of care by restructuring care services. As recipients of care, patients have relevant experiential knowledge on the provision of care, but they are rarely involved in Care Pathway Management due to various barriers. This study aims to acquire insights into how patients can be meaningfully involved in Care Pathway Management.

Methods

A case study was conducted to assess the implementation of patient involvement in the co-creation of the care pathways of Soft Tissue Sarcoma and Gastrointestinal Stromal Tumour at Erasmus MC Cancer Institute (the Netherlands), using the Interactive Learning and Action methodology. Within the pathways, seven patients and eight health professionals were involved. To overcome expected and encountered barriers to involving patients, reflection was stimulated on the care pathways and the development process. Qualitative data were collected via interviews, participatory observations and informal conversations. For analysis, a patient involvement evaluation framework and criteria for knowledge co-creation were used.

Results

Patients indicated specific improvements for current pathways regarding communication, the assistance of a nurse and integrated care. However, the co-creation process encountered several barriers, including limited opportunities to overcome patients’ knowledge gap on medical care services, limited time and uncertainties about responsibilities. Moreover, participatory reflection to enhance the co-creation process was constrained by power imbalances between patients and health professionals and health professionals’ restricted perceptions of their role.

Discussion

To enhance the meaningful involvement of patients in Care Pathway Management, constraints in joint reflection on the co-creation process must be overcome.
Mixed-methods study of integration of housing and medical data systems for enhanced service coordination of people with HIV
Authors: Towe Vivian L , Bogart Laura , McBain Ryan , Wagner Lisa , Stevens Clare , Fischer Shira , MacCarthy Sarah
Published: March 2020

Introduction

Housing is a determinant of HIV-related medical outcomes. Care coordination has been successfully used to treat patients with HIV and can be improved through electronic exchange of patient data, including housing data.

Methods

Primary data were collected from four sites across the U.S., each comprising partnerships between local HIV medical and housing providers. Between March 2017 and May 2018, we conducted a mixed-methods evaluation, focusing on preparatory activities, implementation of tasks related to data integration, and service coordination. Nineteen focus group discussions were conducted with providers, organizational leaders, and clients. Ten interviews were conducted with data system vendors and administrators. Site visits, logs, and progress reports provided information about data integration progress and other activities.

Results

Key activities included changes to client consent, setting up data use agreements, and planning with data system vendors. Sites selected one of three models: one-way data transmission between two systems, bidirectional transmission between two systems, and integration into one data system. Focus group discussion themes included: challenges of using existing data systems; concerns about the burden of learning a new data system; and potential benefits to providers and client, such as having more time to spend delivering client services.

Discussion

Using health information technologies to share data has widespread support, but uptake is still met with resistance from end users. The additional level of complexity differentiating this study from others is the exchange of data between service providers and care providers, but sites were able to accomplish this goal by navigating extensive barriers.
The Long-Term Impact of Parental Mental Health on Children’s Distress Trajectories in Adulthood
Authors: Kamis Christina
Published: March 2020

Using six waves of data from the Panel Study of Income Dynamics (2007-2017) and the Childhood Retrospective Circumstances Study (2014) (N = 3,240), this paper estimates how childhood experiences with parental mental health problems shape trajectories of children’s distress in adulthood. Findings indicate that those who experience poor parental mental health have consistently greater distress than their non-exposed counterparts throughout adulthood. More severe and longer exposures to parental mental health problems correspond to even greater distress in adulthood. The gender of the parent afflicted does not predict differences in adult mental health, but those individuals exposed to both maternal and paternal poor mental health have the greatest distress in adulthood. Together, results suggest that parental mental health during children’s formative years is a significant predictor of life course distress and that heterogeneity in this experience corresponds to unique mental health trajectories.
The Influence of Nursing Work Environment on Patient Safety
Authors: Mihdawi Maha , Al-Amer Rasmieh , Darwish Rima , Randall Sue , Afaneh Tareq
Published: March 2020

Background: Patient safety has been a concern over the past two decades. The value of nurses and their work environment in relation to patient safety has been acknowledged by studies and international organizations. This study aimed to examine the relationship between patient safety practices and the nursing work environment. Methods: In total, 570 registered nurses were invited from the inpatient units in public and private hospitals. Perceived patient safety was evaluated using the Overall Perceptions of Patient Safety subscale from the Hospital Survey of Patient Safety Culture (HSPSC). The nursing work environment was assessed using the Practice Environment Scale of the Nursing Work Index (PES-NWI). Findings: Of the 350 of 570 (64.6%) nurses surveyed, 35.2% (125) reported positive levels of perceived patient safety. Staffing and resource adequacy, professional communication style, and nurses’ participation in hospital quality improvement activities were associated with higher levels of perceived patient safety. Conclusion/Application to Practice: This study provided empirical results about perceived patient safety culture in relation to nursing work environment. It is paramount to focus on specific dimensions of the nursing work environment, such as staffing and resource adequacy, nurses’ participation and advancement, and communication style to improve the quality of care provided to patients. Hospitals are considered one of the most hazardous places compared with industries. Policy makers would help reduce injuries, save resources, and build a culture of safety when taking into consideration the importance of the nursing work environment in relation to patient safety.
Travel Distance Does Not Affect Outcomes in Hip Preservation Surgery: A Case for Centers of Excellence
Authors: Beck Edward C. , Nwachukwu Benedict U. , Lee Elaine K. , Chapman Reagan , Stubbs Allston J. , Gitelis Matthew , Rasio Jonathan , Nho Shane J.
Published: March 2020

Background:

Previous studies have evaluated the effect of distance to high-volume centers on outcomes after joint replacement. However, there is limited evidence on whether this distance has an effect on outcomes after undergoing hip arthroscopic surgery for femoroacetabular impingement syndrome (FAIS).

Purpose:

To determine whether increased distance from a patient’s home to his or her primary orthopaedic clinic has an influence on the ability to achieve the minimal clinically important difference (MCID) on outcome measures after surgery for FAIS.

Study Design:

Cohort study; Level of evidence, 3.

Methods:

A retrospective cohort analysis was performed on patients undergoing surgery for FAIS by a single surgeon from January 2012 through January 2017. A total of 692 patients were identified and split into 2 groups: driving distance of <50 miles from our institution (referral group) and driving distance of <50 miles from our institution (local group). Preoperative and 2-year postoperative scores on patient-reported outcome measures (PROMs), including the Hip Outcome Score Activities of Daily Living and Sport-Specific subscales, International Hip Outcome Tool–12, and modified Harris Hip Score, were assessed. Patients achieving the MCID on any included PROM were analyzed using a chi-square analysis. Logistic regression was performed to determine whether driving distance and other demographic variables of interest had an effect on achieving the MCID. Study data were analyzed using PatientIQ, a cloud-based research and analytics platform for health care.

Results:

There were 647 patients who completed 2-year follow-up and were included in the analysis. Of these patients, 116 (17.9%) were identified as being ≥50 miles from their orthopaedic provider, and 531 (82.1%) were identified as having a driving distance of <50 miles. A total of 100 patients (86.2%) in the referral group reached the MCID, and 476 patients (89.6%) in the local group reached the MCID. There was no statistically significant difference in reaching the MCID on any of the included PROMs between the 2 groups ( P = .364). The same result held when controlling for a number of factors including age, body mass index, and adjusted gross income with logistic regression.

Conclusion:

When controlling for a number of factors including age, body mass index, and adjusted gross income, distance to a high-volume hip arthroscopic surgery center did not have an effect on postoperative outcome scores or achieving the MCID 2 years after undergoing surgery for FAIS.
Clinical phenotyping: role in treatment decisions in sarcoidosis
Authors: Baughman Robert P. , Scholand Mary Beth , Rahaghi Franck F.
Published: March 2020

A variety of phenotypic categorisations have been developed for sarcoidosis. Phenotyping has been used for genetics studies and to guide treatment selection. The authors participated in a Delphi expert consensus panel to develop a proposed phenotype categorisation and treatment recommendations for pulmonary sarcoidosis patients. Panellists reached consensus that asymptomatic patients with normal pulmonary function and adenopathy alone or normal chest imaging do not require therapy, while symptomatic patients with impaired pulmonary function or infiltrates should be treated. The panel did not reach consensus on asymptomatic patients with abnormal chest imaging or reduced pulmonary function, or symptomatic patients with normal chest imaging and pulmonary function. The proposed phenotype categories and associated treatment recommendations are asymptomatic (no therapy), acute (disease duration <1–2 years, apparently self-limited, corticosteroids), chronic (antimetabolites and other second-line therapies) and advanced (biologics). Some clinical settings, such as dyspnoea/hypoxaemia at rest, severely impaired or rapidly decreasing pulmonary function tests, and severe cardiac, neurologic, ocular or renal involvement warrant immediate therapy.
Experience of a tertiary-level urology center in the clinical urological events of rare and very rare incidence. IV. Urological surprises: 2. Clinically visible giant hydronephrosis in adults: Is there a significant function?
Authors: Gadelkareem Rabea Ahmed , Abdelhafez Mohamed Farouk , Moeen Ahmed Mohamed , Shahat Ahmed Abdelhamid , Gadelmoula Mohamed Mahmoud , Osman Mahmoud Mohammed , Abdelgawad Amr Mostafa , Elgammal Mohammed Abdallah , Abdel-Moniem Ahmed Mohamed
Published: March 2020

Background

Giant hydronephrosis is rare with a controversy about the complete loss of renal functions. Our objective is to present our center’s experience with the management of cases of clinically visible giant hydronephrosis considering the potential residual functions. Our study is a retrospective case series of clinically visible giant hydronephrosis which was managed during the period July 2001–June 2016. Demographic and clinical variables were studied with specific considerations to the potential residual functions.

Results

Of more than 82,000 urological interventions, only 47 cases (0.057%) were operated upon for clinically visible giant hydronephrosis. Group 1 included 21 patients (mean age = 50.43 ± 13.71 years) who were treated initially by nephrostomy tube, and group 2 included 26 patients (mean age = 42.96 ± 15.16 years) who were treated primarily by nephrectomy. The main clinical presentation was abdominal distention (61.7%), while 13 patients (27.7%) were unaware of the swellings. The commonest underlying causes of hydronephrosis were urolithiasis (68.1%) and bilharzial ureteral strictures (23.4%). The contralateral kidney was diseased in 22 cases (46.8%) including the bilateral clinically visible hydronephrosis in 7 cases (15%). Indications of placement of a nephrostomy tube included uremia, infections, and evaluation of renal functions, where 5 cases of group 1 regained significant split function ranged 14–33%.

Conclusions

Clinically visible giant hydronephrosis is an extreme form of renal dilatation with different etiologies such as urolithiasis and bilharziasis. Initial placement of a nephrostomy tube may save significant residual functions in these kidneys.
Fast tree aggregation for consensus hierarchical clustering
Authors: Hulot Audrey , Chiquet Julien , Jaffrézic Florence , Rigaill Guillem
Published: March 2020

Background

In unsupervised learning and clustering, data integration from different sources and types is a difficult question discussed in several research areas. For instance in omics analysis, dozen of clustering methods have been developed in the past decade. When a single source of data is at play, hierarchical clustering (HC) is extremely popular, as a tree structure is highly interpretable and arguably more informative than just a partition of the data. However, applying blindly HC to multiple sources of data raises computational and interpretation issues.

Results

We propose mergeTrees, a method that aggregates a set of trees with the same leaves to create a consensus tree. In our consensus tree, a cluster at height h contains the individuals that are in the same cluster for all the trees at height h. The method is exact and proven to be $\mathcal {O}(nq\log (n))$O(nqlog(n)), n being the individuals and q being the number of trees to aggregate. Our implementation is extremely effective on simulations, allowing us to process many large trees at a time. We also rely on mergeTrees to perform the cluster analysis of two real -omics data sets, introducing a spectral variant as an efficient and robust by-product.

Conclusions

Our tree aggregation method can be used in conjunction with hierarchical clustering to perform efficient cluster analysis. This approach was found to be robust to the absence of clustering information in some of the data sets as well as an increased variability within true clusters. The method is implemented in / and available as an package named , which makes it easy to integrate in existing or new pipelines in several research areas.
Brachial pulse pressure is associated with the presence and extent of coronary artery disease in stable angina patients: a cross-sectional study
Authors: Li Jin , Peng Yangpei , Ji Kangting
Published: March 2020

Background

Previous epidemiological evidence has identified many risk factors for coronary artery disease (CAD). Pulse pressure (PP) was reported to be associated with CAD. However, more attention was paid to aortic PP than to brachial PP. This cross-sectional study aimed to investigate the direct relationship between brachial PP and the presence and extent of CAD in stable angina patients.

Methods

We recruited a total of 1118 consecutive patients with stable chest pain suspected of CAD. After screening with exclusion criteria, 654 patients were finally included in our study. Every patient underwent both blood pressure measurement and selective coronary angiography. Univariate and multivariate analysis were performed to analyze the association between PP and the presence and extent of CAD.

Results

This study revealed that brachial PP was an independent correlate of multivessel CAD. In multivariate generalized linear regression model, increasing brachial PP (per 1 mmHg) were associated with the increased number of diseased vessels (β = 0.01, SE = 0.00, P < 0.0001). Binary logistic regression analysis further confirmed this association. The risk of multivessel CAD increased significantly in patients with brachial PP ≥ 60 mmHg (OR = 1.69, 95% CI = 1.14–2.48, P = 0.0084) and as per 1 mmHg increased in brachial PP (OR = 1.02, 95% CI = 1.01–1.03, P = 0.0002), independent of age, gender, body mass index (BMI), smoking, diabetes, hypercholesterolemia and creatinine (Cr). This association was still of statistical significance in subgroup analysis of hypertension and diabetes.

Conclusion

Increasing brachial PP was significantly and independently associated with increased risk of multivessel coronary disease in stable angina patients. The association of brachial PP with CAD was more pronounced in hypertension group than in non-hypertension one.
Non-communicable diseases research output in the Eastern Mediterranean region: an overview of systematic reviews
Authors: Akkawi Alaa , Khabsa Joanne , Noubani Aya , Jamali Sarah , Sibai Abla M. , Lotfi Tamara
Published: March 2020

Background

Rates of non-communicable diseases (NCDs) are rapidly rising in the Eastern Mediterranean Region (EMR). Systematic reviews satisfy the demand from practitioners and policy makers for prompt comprehensive evidence. The aim of this study is to review trends in NCD systematic reviews research output and quality by time and place, describe design and focus, and examine gaps in knowledge produced.

Methods

Using the Montori et al. systematic reviews filter, MeSH and keywords were applied to search Medline Ovid, Cochrane Central and Epistemonikos for publications from 1996 until 2015 in the 22 countries of the EMR. The ‘Measurement Tool to Assess Systematic Reviews’, AMSTAR, was used to assess the methodological quality of the papers.

Results

Our search yielded 2439 papers for abstract and title screening, and 89 papers for full text screening. A total of 39 (43.8%) studies included meta-analysis. Most of the papers were judged as being of low AMSTAR quality (83.2%), and only one paper was judged as being of high AMSTAR quality. Whilst annual number of papers increased over the years, the growth was mainly attributed to an increase in low-quality publications approaching in 2015 over four times the number of medium-quality publications. Reviews were significantly more likely to be characterized by higher AMSTAR scores (±SD) when meta-analysis was performed compared to when meta-analysis was not performed (3.4 ± 1.5 vs 2.6 ± 2.0; p-value = 0.034); and when critical appraisal of the included studies was conducted (4.3 ± 2.3 vs 2.5 ± 1.5; p-value = 0.004). Most of the reviews focused on cancer and diabetes as an outcome (25.8% and 24.7%, respectively), and on smoking, dietary habits and physical activity as exposures (15.7%, 12.4%, 9.0%, respectively). There was a blatant deficit in reviews examining associations between behaviors and physiologic factors, notably metabolic conditions.

Conclusions

Systematic reviews research in the EMR region are overwhelmingly of low quality, with gaps in the literature for studies on cardiovascular disease and on associations between behavioral factors and intermediary physiologic parameters. This study raises awareness of the need for high-quality evidence guided by locally driven research agenda responsive to emerging needs in countries of the EMR.
Assessing the effect of genetic markers on drug immunogenicity from a mechanistic model-based approach
Authors:   on behalf of the ABIRISK Consortium, Duhazé Julianne , Caubet Miguel , Hässler Signe , Bachelet Delphine , Allez Matthieu , Deisenhammer Florian , Fogdell-Hahn Anna , Gleizes Aude , Hacein-Bey-Abina Salima , Mariette Xavier , Pallardy Marc , Broët Philippe
Published: March 2020

Background

With the growth in use of biotherapic drugs in various medical fields, the occurrence of anti-drug antibodies represents nowadays a serious issue. This immune response against a drug can be due either to pre-existing antibodies or to the novel production of antibodies from B-cell clones by a fraction of the exposed subjects. Identifying genetic markers associated with the immunogenicity of biotherapeutic drugs may provide new opportunities for risk stratification before the introduction of the drug. However, real-world investigations should take into account that the population under study is a mixture of pre-immune, immune-reactive and immune-tolerant subjects.

Method

In this work, we propose a novel test for assessing the effect of genetic markers on drug immunogenicity taking into account that the population under study is a mixed one. This test statistic is derived from a novel two-part semiparametric improper survival model which relies on immunological mechanistic considerations.

Results

Simulation results show the good behavior of the proposed statistic as compared to a two-part logrank test. In a study on drug immunogenicity, our results highlighted findings that would have been discarded when considering classical tests.

Conclusion

We propose a novel test that can be used for analyzing drug immunogenicity and is easy to implement with standard softwares. This test is also applicable for situations where one wants to test the equality of improper survival distributions of semi-continuous outcomes between two or more independent groups.
Use of adenosine deaminase (ADA) to diagnose suspected peritoneal tuberculosis in Rwanda: a cross-sectional study
Authors: Ntwari Jules , Dusabejambo Vincent , Page Cameron
Published: March 2020

Background

Peritoneal tuberculosis is the most common cause of low albumin gradient ascites in developing countries, but it can be easily confused with other causes of ascites. Peritoneal tuberculosis requires early recognition of symptoms and signs in order to make a quick diagnosis for appropriate treatment. Measurement of adenosine deaminase (ADA) level > 39 in ascites fluid is an established test to diagnose peritoneal tuberculosis. Many low-income countries do not currently test for adenosine deaminase in ascites fluid, including Rwanda.

Method

Cross-sectional, descriptive study conducted through the Internal Medicine Department of three university teaching hospitals in Rwanda. Participants were patients older than 16 years presenting to tertiary referral hospitals with ascites of unknown cause.

Results

Of 103 ascites fluid samples collected, 52 of them (50.5%) had an elevated ADA, consistent with a presumptive diagnosis of peritoneal TB. Among those 52 subjects diagnosed with peritoneal TB, 39 out of 52 (75%) did not receive anti-TB medications. Among the 17 subjects who were treated with anti-TB medications, 4 of 17 (23.6%) did not have peritoneal TB based on ADA level. Samples with low-albumin gradient ascites were more likely to have high ADA ≥39 IU/L (p = 0.039).

Conclusion

Our findings suggest that 3out of 4 patients with PTB in Rwanda are not getting TB treatment and 1 in 4 patients who are taking TB medications do not need it. Even if the true number of Rwandans who are being undertreated and overtreated is less than our study suggests, these results should prompt a larger study of peritoneal tuberculosis. Adding adenosine deaminase (ADA) to the diagnostic tools available to clinicians could help achieve the goal of correctly putting every Rwandan with tuberculosis on treatment, while avoiding unnecessary tuberculosis medications in those who do not have the disease.
High levels of viral repression, malnutrition and second-line ART use in adolescents living with HIV: a mixed methods study from Myanmar
Authors: Murray Jillian , Whitehouse Katherine , Ousley Janet , Bermudez Elkin , Soe Theint Thida , Hilbig Adelene , Soe Kyi Pyar , Mon Phyu Ei , Tun Kyaw Tint , Ei Win Le Shwe Sin , Cyr Joanne , Deglise Carole , Ciglenecki Iza
Published: March 2020

Background

Adolescents living with HIV/AIDS (ALHIV) are a particularly vulnerable but often overlooked group in the HIV response despite additional disease management challenges.

Methods

All ALHIV (10–19 years), on ART for ≥6 months, presenting to care at a Médecins Sans Frontières (MSF) clinic in Myanmar from January–April 2016 were eligible for the quantitative study component (clinical history, medical examination, laboratory investigation). A subset of these respondents were invited to participate in qualitative interviews. Interviews and focus groups were also conducted with other key informants (care givers, clinicians).

Results

Of 177 ALHIV, 56% (100) were aged 9–13 years and 77 (44%) were 14–19. 49% (86) had been orphaned by one parent, and 19% (33) by both. 59% (104) were severely underweight (BMI < 16). 47% presented with advanced HIV (WHO stage III/IV). 93% were virally supressed (< 250 copies/mL). 38 (21%) of ALHIV were on a second-line ART after first-line virological failure. Qualitative interviewing highlighted factors limiting adherence and the central role that HIV counsellors play for both ALHIV patients and caregivers.

Conclusions

Our study shows good clinical, immunological, and virological outcomes for a cohort of Myanmar adolescents living with HIV, despite a majority being severely underweight, presenting with Stage III or IV illness, and the prevalence of comorbid infections (TB). Many treatment and adherence challenges were articulated in qualitative interviewing but emphasized the importance of actively engaging adolescents in their treatment. Comprehensive HIV care for this population must include routine viral load testing and social support programs.
Influenza in the school-aged population in Mexico: burden of disease and cost-effectiveness of vaccination in children
Authors: Falcón-Lezama Jorge Abelardo , Saucedo-Martínez Rodrigo , Betancourt-Cravioto Miguel , Alfaro-Cortes Myrna María , Bahena-González Roberto Isaac , Tapia-Conyer Roberto
Published: March 2020

Background

The current national influenza vaccination schedule in Mexico does not recommend vaccination in the school-aged population (5–11 years). Currently, there are limited data from middle-income countries analysing the cost-effectiveness of influenza vaccination in this population. We explored the clinical effects and economic benefits of expanding the current national influenza vaccination schedule in Mexico to include the school-aged population.

Methods

A static 1-year model incorporating herd effect was used to assess the cost-effectiveness of expanding the current national influenza vaccination schedule of Mexico to include the school-aged population. We performed a cross-sectional epidemiological study using influenza records (2009–2018), death records (2010–2015), and discharge and hospitalisation records (2010–2016), from the databases of Mexico’s Influenza Surveillance System (SISVEFLU), the National Mortality Epidemiological and Statistical System (SEED), and the Automated Hospital Discharge System (SAEH), respectively. Cost estimates for influenza cases were based on 7 scenarios using data analysed from SISVEFLU; assumptions for clinical management of cases were defined according to Mexico’s national clinical guidelines. The primary health outcome for this study was the number of influenza cases avoided. A sensitivity analysis was performed using conservative and optimistic parameters (vaccination coverage: 30% / 70%, Vaccine effectiveness: 19% / 68%).

Results

It was estimated that expanding the influenza immunisation programme to cover school-aged population in Mexico over the 2018–2019 influenza season would result in 671,461 cases of influenza avoided (50% coverage and 50% effectiveness assumed). Associated with this were 262,800 fewer outpatient consultations; 154,100 fewer emergency room consultations; 97,600 fewer hospitalisations, and 15 fewer deaths. Analysis of cases avoided by age-group showed that 55.4% of them were in the school-aged population, and the decrease in outpatient consultations was largest in this population. There was an overall decrease in the economic burden for the Mexican health care system of 111.9 million US dollars; the immunization programme was determined to be cost-saving in the base, conservative and optimistic scenarios.

Conclusions

Vaccinating school-aged population in Mexico would be cost-effective; expansion of the current national vaccination schedule to this age group is supported.
Two novel mutations in ADAMTS13 in a Chinese boy with congenital thrombocytopenic purpura: a case report
Authors: Hou Ling , Du Yue
Published: March 2020

Background

Mutations in the ADAMTS13 gene family have been reported to cause congenital thrombotic thrombocytopenic purpura (cTTP), a rare disease characterized by thrombocytopenia and hemolytic anemia. Nearly 150 causative mutations in ADAMTS13 have been identified; however, only a few of them were detected in Chinese patients.

Case presentation

A 5-year-old Chinese boy presented with history of thrombocytopenic purpura, hemolytic anemia, and renal injury since the neonatal period. Gene analysis revealed two novel mutations in ADAMTS13: a missense mutation 332G > A (p:Gly111Glu) in exon4 and a nonsense mutation 3121C > T (p:Gln1041stop) in exon 24. Genetic analysis of his parents confirmed the heterozygous nature of the mutations.

Conclusion

We report two novel mutations in ADAMTS13 (332G > A, 3121C > T) in a Chinese boy. These two mutations may lead to early onset of cTTP and severe symptoms.
MicroRNAs associated to single drug components of R-CHOP identifies diffuse large B-cell lymphoma patients with poor outcome and adds prognostic value to the international prognostic index
Authors: Due Hanne , Brøndum Rasmus Froberg , Young Ken H. , Bøgsted Martin , Dybkær Karen
Published: March 2020

Background

Treatment resistance is a major clinical challenge of diffuse large B-cell lymphoma (DLBCL) where approximately 40% of the patients have refractory disease or relapse. Since DLBCL is characterized by great clinical and molecular heterogeneity, the purpose of the present study was to investigate whether miRNAs associated to single drug components of R-CHOP can improve robustness of individual markers and serve as a prognostic classifier.

Methods

Fifteen DLBCL cell lines were tested for sensitivity towards single drug compounds of the standard treatment R-CHOP: rituximab (R), cyclophosphamide (C), doxorubicin (H), and vincristine (O). For each drug, cell lines were ranked using the area under the dose-response curve and grouped as either sensitive, intermediate or resistant. Baseline miRNA expression data were obtained for each cell line in untreated condition, and differential miRNA expression analysis between sensitive and resistant cell lines identified 43 miRNAs associated to growth response after exposure towards single drugs of R-CHOP. Using the Affymetrix HG-U133 platform, expression levels of miRNA precursors were assessed in 701 diagnostic DLBCL biopsies, and miRNA-panel classifiers predicting disease progression were build using multiple Cox regression or random survival forest. Classifiers were validated and ranked by repeated cross-validation.

Results

Prognostic accuracies were assessed by Brier Scores and time-varying area under the ROC curves, which revealed better performance of multivariate Cox models compared to random survival forest models. The Cox model including miR-146a, miR-155, miR-21, miR-34a, and miR-23a~miR-27a~miR-24-2 cluster performed the best and successfully stratified GCB-DLBCL patients into high- and low-risk of disease progression. In addition, combination of the Cox miRNA-panel and IPI substantially increased prognostic performance in GCB classified patients.

Conclusion

As a proof of concept, we found that expression data of drug associated miRNAs display prognostic utility and adding these to IPI improves prognostic stratification of GCB-DLBCL patients treated with R-CHOP.
The impact of socioeconomic factors on the healthcare costs of people living with HIV in Turkey
Authors: Özdemir Hülya Özkan , Tosun Selma , Kabadurmuş Fatma Nur Karaman , Özdemir Durmuş
Published: March 2020

Background

This study addresses an important field within HIV research, the impact of socioeconomic factors on the healthcare costs of people living with HIV/AIDS (PLHIV). We aimed to understand how different socioeconomic factors could create diverse healthcare costs for PLHIV in Turkey.

Methods

Data were collected between January 2017 and December 2017. HIV-positive people attending the clinic who had been referred to the national ART programme from January 1992 until December 2017 were surveyed. The questionnaire collected socioeconomic data. The cost data for the same patients was taken from the electronic database Probel Hospital Information Management System (PHIMS) for the same period. The PHIMS data include costs for medication (highly active antiretroviral therapy or HAART), laboratory, pathology, radiology, polyclinic, examination and consultation, hospitalisation, surgery and intervention, blood and blood products, supplies and other costs. Data were analysed using STATA 14.2 to estimate the generalised linear model (GLM).

Results

The findings of our GLM indicate that age, gender, marital and parental status, time since diagnosis, employment, wealth status, illicit drug use and CD4 cell count are the factors significantly related to the healthcare cost of patients. We found that compared with people who have AIDS (CD4 cells < 200 cells/mm3), people who have a normal range of CD4 cells (≥ 500 cells/mm3) have $1046 less in expenditures on average. Compared to younger people (19–39 years), older people (≥ 55) have $1934 higher expenditures on average. Costs are $644 higher on average for married people and $401 higher on average for people who have children. Healthcare costs are $518 and $651 higher on average for patients who are addicted to drugs and who use psychiatric drug(s), respectively. Compared to people who were recently diagnosed with HIV, people who were diagnosed ≥10 years ago have $743 lower expenditures on average.

Conclusion

Our results suggest that in addition to immunological status, socioeconomic factors play a substantial role in the healthcare costs of PLHIV. The key factors influencing the healthcare costs of PLHIV are also critical for public policy makers, healthcare workers, health ministries and employment community programs.
Pneumocystis jirovecii colonization and its association with pulmonary diseases: a multicenter study based on a modified loop-mediated isothermal amplification assay
Authors: Xue Ting , Ma Zhuang , Liu Fan , Du Weiqin , He Li , Wang Jinyan , An Chunli
Published: March 2020

Background

Pneumocystis jirovecii (P. jirovecii) is an opportunistic fungal pathogen and the role of its colonization in pulmonary diseases has become a popular focus in recent years. The aim of this study was to develop a modified loop-mediated isothermal amplification (LAMP) assay for detection of Pneumocystis jirovecii (P. jirovecii) DNA amongst non-HIV patients with various pulmonary diseases and use it to examine the prevalence and assess the association of P. jirovecii colonization with clinical characteristics of these diseases.

Methods

We modified the previously reported LAMP assay for P. jirovecii by adding real-time detection. This method was used to detect P. jirovecii colonization in pulmonary samples collected from 403 non-HIV patients with various pulmonary diseases enrolled from 5 hospitals in China. We determined the prevalence of P. jirovecii colonization in 7 types of pulmonary diseases and assessed the association of P. jirovecii colonization with clinical characteristics of these diseases.

Results

The modified LAMP assay showed no cross-reactivity with other common pulmonary microbes and was 1000 times more sensitive than that of conventional PCR. Using the modified LAMP assay, we detected P. jirovecii colonization in 281 (69.7%) of the 403 patients enrolled. P. jirovecii colonization was more common in interstitial lung diseases than in chronic obstructive pulmonary disease (COPD) (84.6% vs 64.5%, P < 0.05). Patients with acute exacerbation of COPD had a higher prevalence of P. jirovecii colonization compared to patients with stabilized COPD (67.4% vs 43.3%, P < 0.05). P. jirovecii colonization was associated with decreased pulmonary function, increased levels of 1,3-β-D-glucan and C-reactive protein, and decreased levels of CD4+ T-cell counts (P < 0.05 for each). Approximately 70% of P. jirovecii colonized patients had confections with other fungi or bacteria.

Conclusions

We developed a modified LAMP assay for detecting P. jirovecii. Our multi-center study of 403 patients supports that P. jirovecii colonization is a risk factor for the development of pulmonary diseases and highlights the need to further study the pathogenesis and transmission of P. jirovecii colonization in pulmonary diseases.
Side effect concerns and their impact on women’s uptake of modern family planning methods in rural Ghana: a mixed methods study
Authors: Schrumpf Leah A. , Stephens Maya J. , Nsarko Nathaniel E. , Akosah Eric , Baumgartner Joy Noel , Ohemeng-Dapaah Seth , Watt Melissa H.
Published: March 2020

Background

Despite availability of modern contraceptive methods and documented unmet need for family planning in Ghana, many women still report forgoing modern contraceptive use due to anticipated side effects. The goal of this study was to examine the use of modern family planning, in particular hormonal methods, in one district in rural Ghana, and to understand the role that side effects play in women’s decisions to start or continue use.

Methods

This exploratory mixed-methods study included 281 surveys and 33 in-depth interviews of women 18–49 years old in the Amansie West District of Ghana between May and July 2018. The survey assessed contraceptive use and potential predictors of use. In-depth interviews examined the context around uptake and continuation of contraceptive use, with a particular focus on the role of perceived and experienced side effects.

Results

The prevalence of unmet need for modern family planning among sexually active women who wanted to avoid pregnancy (n = 135) was 68.9%. No factors were found to be significantly different in comparing those with a met need and unmet for modern family planning. Qualitative interviews revealed significant concerns about side effects stemming from previous method experiences and/or rumors regarding short-term impacts and perceived long-term consequences of family planning use. Side effects mentioned include menstrual changes (heavier bleeding, amenorrhea or oligomenorrhea), infertility and childbirth complications.

Conclusion

As programs have improved women’s ability to access modern family planning, it is paramount to address patient-level barriers to uptake, in particular information about side effects and misconceptions about long-term use. Unintended pregnancies can be reduced through comprehensive counseling about contraceptive options including accurate information about side effects, and the development of new contraceptive technologies that meet women’s needs in low-income countries.
Role of limonin in anticancer effects of Evodia rutaecarpa on ovarian cancer cells
Authors: Bae Jae Ryul , Park Wook Ha , Suh Dong Hoon , No Jae Hong , Kim Yong Beom , Kim Kidong
Published: March 2020

Background

Ovarian cancer therapy generally involves systemic chemotherapy with anticancer drugs; however, chemotherapy with a platinum-based drug has often been shown to cause adverse reactions and drug resistance in ovarian cancer patients. Evodia rutaecarpa (ER) reportedly shows anticancer activity against various types of cancer cells. However, the effects of ER have not yet been fully uncovered in ovarian cancer.

Methods

In the present study, we investigated the anticancer effects of an ER extract and its components against the ovarian cancer cell lines SKOV-33, A2780, RMUG-S and a cisplatin-resistant SKOV-3 cell line (CisR SKOV-3). Cell viability and colony formation assays along with subcellular fractionation analysis, immunoblotting, and immunofluorescence staining were performed.

Results

ER treatment led to a significant reduction in the viability of SKOV-3 cells. Moreover, limonin, a compound found in ER, reduced the viability of both serous-type (SKOV-3 and A2780) and mucinous-type (RMUG-S) ovarian cancer cells by inducing apoptosis via activation of the p53 signaling pathway. Furthermore, limonin reversed the drug resistance through activation of apoptosis in CisR SKOV-3.

Conclusion

Taken together, our findings suggest that limonin contributes to the anti-ovarian cancer effects of ER by inducing apoptosis via activation of the p53 signaling pathway.
Perceptions and attitudes towards dementia among university students in Malaysia
Authors: Griffiths Alys Wyn , Cheong Wing Loong , Saw Pui San , Parveen Sahdia
Published: March 2020

Background

One of the major challenges worldwide is the stigma associated with dementia. There is limited dementia awareness within Malaysian communities, including levels of confusion regarding the differences between dementia and the usual ageing progress, which can lead to delays in support seeking. The need for additional training and education for healthcare professionals has been highlighted. The present study aimed to evaluate the benefits of a one-hour dementia education session (Dementia Detectives workshop) for pharmacy and medicine undergraduate students at a Malaysian university.

Methods

Participants attended the workshop and completed pre- (Time 1) and post-workshop (Time 2) questionnaires consisting of validated measures exploring attitudes towards dementia and older people more broadly.

Results

A total of 97 students were recruited. Attitudes towards people with dementia showed significant positive changes between Time 1 and Time 2, whereas no differences were found for attitudes towards older people.

Conclusions

As medical and pharmacy students develop theoretical knowledge, practical skills and professional attitudes during their undergraduate studies, it is important for students to also learn about the humanistic side of diseases and conditions through workshops such as the one presented here. Further research should now be conducted to consider how Dementia Detectives can be delivered to non-healthcare students and what the barriers and facilitators to wider delivery are.
The contribution of electronic health records to risk management through accreditation of residential aged care homes in Australia
Authors: Yu Ping , Jiang Tao , Hailey David , Ma Jun , Qian Siyu
Published: March 2020

Background

The Australian government has implemented a compulsory aged care accreditation system to guide and monitor the risk management approach in registered residential aged care (RAC) homes. This research assessed the contribution of electronic health records (EHR) to risk management in RAC homes in relation to the extent that aged care accreditation fulfils its role.

Methods

A convenience sample of 5560 aged care accreditation reports published from 2011 to 2018 was manually downloaded from the Accreditation Agency web site. A mixed-method approach of text data mining and manual content analysis was used to identify any significant differences in failure to meet accreditation outcomes among the RAC homes. This took account of whether EHR or paper records were used, year of accreditation, and size and location of the homes.

Results

It appears that aged care accreditation was focused on structure and process, with limited attention to outcome. There was a big variation between homes in their use of measurement indicators to assess accreditation outcomes. No difference was found in outcomes between RAC homes using EHR and those using paper records. Only 3% of the RAC homes were found to have failed some accreditation outcomes. Failure in monitoring mechanism was the key factor for failing many accreditation outcomes. The top five failed outcomes were Human Resource Management, Clinical Care, Information Systems, Medication Management and Behavioural Management.

Conclusions

Sub-optimal outcomes have limited the effectiveness of accreditation in driving and monitoring risk management for care recipient safety in RAC homes. Although EHR is an important structure and process component for RAC services, it made a limited contribution to risk management for accreditation in Australian RAC homes. Either EHR was not effective, or the accreditation process was not robust enough to recognize its influence. Aged care accreditation in Australia needs to develop further outcome-based measures that are supported by robust data infrastructure and clear guidance.
Analyzing the situation of older family caregivers with a focus on health-related quality of life and pain: a cross-sectional cohort study
Authors: Fagerström Cecilia , Elmståhl Sölve , Wranker Lena Sandin
Published: March 2020

Background

For a significant proportion of the older population, increasing age is associated with health problems and worsening health. Older family caregivers are largely responsible for care of next-of-kin living at home, which impacts their own physical and mental health both positively and negatively. However, evidence is insufficient regarding the health situation of older caregivers. The aim of this study was to investigate health-related quality of life (HRQoL) and pain, and their associations, among caregivers aged ≥60 years.

Methods

The participants (n = 3444) were recruited from the Swedish National Study on Aging and Care-Blekinge and Good Aging in Skåne during 2001–2004. Participants aged ≥60 years were selected randomly and underwent cognitive tests, with demographic information obtained through questionnaires. The response rate was 60%. A predefined research protocol was used. HRQoL was measured with the Short-Form Health Survey, dimension mental health. Logistic regression models were used to investigate the associations between HRQoL and pain as well as control factors.

Results

Family caregiving was reported by 395 (11.5%) of the participants, and 56.7% of the caregivers reported pain. Family caregivers reported lower pain intensity on the Visual Analogue Scale and were younger, on median, than non-caregivers. Irrespective of caregiver status, pain was associated with mental HRQoL. Concerns about personal health and financial status had the strongest associations with mental HRQOL in both groups, but the levels were higher among caregivers.

Conclusion

Pain was one factor associated with low HRQoL regardless of family caregiver status and remained important when controlling for factors related to advanced age. This finding remained among family caregivers, though they reported lower pain intensity. Factors other than pain were shown to be important to mental HRQoL and should also be taken into consideration when discussing actions for family caregivers to maintain and improve health and HRQoL.

Trial registration number

Not applicable.
Correction to: Risk of lymphoma subtypes by occupational exposure in southern Italy
Authors: Ferri Giovanni Maria , Specchia Giorgina , Mazza Patrizio , Ingravallo Giuseppe , Intranuovo Graziana , Guastadisegno Chiara Monica , Congedo Maria Luisa , Lagioia Gianfranco , Loparco Maria Cristina , Giordano Annamaria , Perrone Tommasina , Gaudio Francesco , Spinosa Caterina , Minoia Carla , D’Onghia Lucia , Strusi Michela , Corrado Vincenzo , Cavone Domenica , Vimercati Luigi , Schiavulli Nunzia , Cocco Pierluigi
Published: March 2020

After publication of our article [1] we have been notified us that one of the author names have been incorrectly spelled.