bluuebunny/crossref_metadata_2025_split huggingface dataset:
The BRIGHTLIGHT National Survey of the Impact of Specialist Teenage and Young Adult Cancer Care on Caregivers’ Information and Support Needs
Authors: Martins Ana , Alvarez-Galvez Javier , Fern Lorna A. , Vindrola-Padros Cecilia , Barber Julie A. , Gibson Faith , Whelan Jeremy S. , Taylor Rachel M. 
Published: December 2019

Background
Teenage and young adult cancer services in England are centralized in 13 principal treatment centers (TYA-PTC). These “specialist services” are designed to support caregivers as well as young people.

Objectives
To evaluate whether caregivers of young people with cancer had fewer unmet information and support needs if they had all/some care in a TYA-PTC.

Methods
Participants in a cohort study of young people with cancer nominated their main carer to complete the BRIGHTLIGHT Carer Questionnaire, completed 6 months after diagnosis. Comparisons were made according to where young people’s care was delivered: all, some, or no care in a TYA-PTC. Principal components analysis reduced the questionnaire to 5 dimensions, which were used as dependent variables in subsequent regression analysis.

Results
Four hundred seventy-six responses of 514 returned questionnaires (92%) were included in the analysis. The majority of caregivers were white, middle-aged, married/cohabiting mothers. Adjusted analysis indicated caregivers who had all/some care in a TYA-PTC had more satisfaction with support and also with services specifically provided for carers. Those who had some TYA-PTC care had greater satisfaction with information but less opportunity to be involved in decisions.

Conclusions
Caregivers of young people who had no TYA-PTC care have the most unmet information and support needs.

Implications for Practice
Nurses outside of the TYA-PTC need to be supported by the TYA-PTC in providing information/support for caregivers. When a young person is receiving care in multiple hospitals, nurses need to optimize opportunities for caregivers to be involved in decision making.
Calling an Oncological Emergency Telephone to Seek Advice
Authors: Jørgensen Lone , Jacobsen Heidi Ramlow , Pedersen Birgith , Uhrenfeldt Lisbeth 
Published: December 2019

Background
Cancer treatment is increasingly provided on an outpatient basis, which may challenge patients and caregivers coping with illness and adverse effects at home. A telephone consultation is an accepted type of healthcare provision to support patients and prevent adverse outcomes when their capacity to self-manage is inadequate. Whether this option for help sufficiently supports patients needs further investigation.

Objectives
The aim of this study was to explore patients’ and caregivers’ experience of calling an oncological emergency telephone.

Methods
The study applies a phenomenological hermeneutic approach with 12 semistructured interviews. Patients and caregivers who had called the oncological emergency telephone within the last 2 months were included. The interview texts were analyzed by content analysis.

Results
Patients and caregivers perceive the emergency telephone as a lifeline that they consider calling when the patient’s condition changes from what they understand as normal to what they perceive as abnormal. They would rather call “one time too many than one time too few” if their resources are inadequate to ensure their safety. The tone, attitude, and professional competency of healthcare providers affect patients’ experience of the call.

Conclusions
The value of calling the oncological emergency telephone depends on the healthcare providers’ professional competences and skills to establish a relationship that makes patients feeling accommodated and taken care of.

Implications for Practice
Patients’ and caregivers’ perceptions of what constitutes a good telephone consultation represent significant knowledge that contributes to a more comprehensive and practice-based understanding of what is required to advise patients and caregivers in an oncological emergency telephone.
“We're Afraid to Say Suicide”
Authors: Monteith Lindsey L. , Smith Noelle B. , Holliday Ryan , Dorsey Holliman Brooke A. , LoFaro Carl T. , Mohatt Nathaniel V. 
Published: December 2019

Abstract
Suicide is a significant public health concern for veterans residing in rural communities. Although various initiatives have been implemented to prevent suicide among veterans, efforts specific to rural veterans remain limited. To aid such efforts, we examined stigma as a potential barrier to community readiness in the implementation of a community-based suicide prevention program for rural veterans. In this qualitative study, community readiness interviews were conducted with 13 participants in a rural community. Themes included lack of awareness regarding veteran suicide, rare discussions of veteran suicide, and suicide-related stigma within the community. Results suggest that prioritizing destigmatization may be particularly important to implementing community-based suicide prevention programming in rural communities. In particular, addressing community misconceptions regarding veteran suicide, while increasing knowledge of the extent to which veteran suicide occurs locally may facilitate increased awareness and thus community readiness to prevent suicide among rural veterans.
Do Polymer Coatings Change the Aberrations of Conventional and Wavefront-guided Scleral Lenses?
Authors: Hastings Gareth D. , Zanayed Julianna Z. , Nguyen Lan Chi , Applegate Raymond A. , Marsack Jason D. 
Published: December 2019

SIGNIFICANCE
The findings of this study indicate that patients could simultaneously be offered the individualized optical correction of wavefront-guided (WFG) lenses and the superior comfort afforded by polymer coatings. This could be helpful to patients with ectasia suffering ocular dryness or dependent on scleral lenses for lengthy periods of wear.

PURPOSE
Wavefront-guided scleral lenses target lower- and higher-order aberrations of individual eyes using submicrometer-level contours in the anterior lens surface. Hydrophilic polyethylene glycol (PEG) polymer coatings applied to lens surfaces improve comfort and wettability. This study aimed to quantify aberration changes (e.g., masking) when applying polymer coatings to WFG and conventional scleral lenses.

METHODS
Two control lenses (remained uncoated) and 14 experimental lenses (two repeated builds of seven aberration designs: one spherical, two coma, four full WFG [second- to fifth-order aberrations]) were manufactured, and aberrations were measured (mean of three) by two operators before and after coating. Root mean square (RMS) and visual image quality (logVSX) differences were calculated for 6-mm diameters.

RESULTS
Median RMS aberration change due to coating was 0.012 μm (range, 0.008 to 0.057 μm). Maximum logVSX change due to coating was 0.073, predicting an approximately one letter change in acuity. Instrument sensitivity was 0.002 μm. Acute instrument and operator variabilities (standard deviations of individual [second- to fifth-order Zernikes] were all <0.027 μm). Longitudinal variability (control lenses) was low: all less than 0.017 μm. Although RMS of differences between repeated builds of all lenses was less than 0.25 D and not statistically significant, relatively, manufacture constituted the major variability, and RMS difference between repeated builds was at least four times greater than the effect of coating (median, 0.167 μm; range, 0.088 to 0.312 μm).

CONCLUSIONS
Application of polymer coatings caused measurable changes in aberrations of WFG and conventional scleral lenses; however, these were clinically and statistically insignificant and within variability of repeated lens manufacture. In their current states, WFG lenses and polymer coatings could be used simultaneously.
A Review of the Use of Confidence Intervals for Bland-Altman Limits of Agreement in Optometry and Vision Science
Authors: Carkeet Andrew 
Published: December 2019

SIGNIFICANCE
Confidence intervals are still seldom reported for Bland-Altman 95% limits of agreement. When they are reported, 50% of articles use approximate methods and 50% use exact methods.

PURPOSE
Bland-Altman limits of agreement can be unreliable estimates, especially for small sample sizes. However, authors seldom use confidence intervals for limits of agreement. This article reviews their use in Optometry and Vision Science.

METHODS
A keyword search for “Bland,” “Altman,” “Bland-Altman,” “LoA,” and “limits of agreement” was conducted on the Optometry and Vision Science website within a time range from January 2016 to December 2018.

RESULTS
Fifty articles were reported or were judged to use Bland-Altman analysis; sample sizes ranged from 3 to 2072. Eight of these article reported confidence limits for limits of agreement, four of which used exact methods and four used Bland and Altman's approximate method.

CONCLUSIONS
Use of confidence intervals for limits of agreement has increased in Optometry and Vision Science but is far from universal. To assist researchers in calculating exact confidence limits for Bland-Altman limits of agreement, spreadsheets are included for performing the calculations and generating Bland-Altman plots with the confidence intervals included.
Pain in dementia
Authors: Achterberg Wilco , Lautenbacher Stefan , Husebo Bettina , Erdal Ane , Herr Keela 
Published: December 2019

AbstractThe ageing revolution is changing the composition of our society with more people becoming very old with higher risks for developing both pain and dementia. Pain is normally signaled by verbal communication, which becomes more and more deteriorated in people with dementia. Thus, these individuals unnecessarily suffer from manageable but unrecognized pain. Pain assessment in patients with dementia is a challenging endeavor, with scientific advancements quickly developing. Pain assessment tools and protocols (mainly observational scales) have been incorporated into national and international guidelines of pain assessment in aged individuals. To effectively assess pain, interdisciplinary collaboration (nurses, physicians, psychologists, computer scientists, and engineers) is essential. Pain management in this vulnerable population is also preferably done in an interdisciplinary setting. Nonpharmacological management programs have been predominantly tested in younger populations without dementia. However, many of them are relatively safe, have proven their efficacy, and therefore deserve a first place in pain management programs. Paracetamol is a relatively safe and effective first-choice analgesic. There are many safety issues regarding nonsteroidal anti-inflammatory drugs, opioids, and adjuvant analgesics in dementia patients. It is therefore recommended to monitor both pain and potential side effects regularly. More research is necessary to provide better guidance for pain management in dementia.
Investigation of factors associated with spontaneous preterm birth in pregnant women living with HIV
Authors: Albert Arianne Y.K. , Elwood Chelsea , Wagner Emily C. , Pakzad Zahra , Chaworth-Musters Tessa , Berg Kyra , Van Schalkwyk Julie , Maan Evelyn J. , Azampanah Arezou , McClymont Elisabeth , Alimenti Ariane , Forbes John C. , Money Deborah M. 
Published: December 2019

Objective:
To investigate factors contributing to preterm birth (PTB), including cART use and clinical and social determinants of health, in women living with HIV (WLWH) from British Columbia, Canada.

Design:
Retrospective observational cohort.

Methods:
We investigated the effect of cART use and other clinical and demographic factors on spontaneous PTB (sPTB) rates (<37 weeks gestational age) among 631 singleton pregnancies between 1997 and 2018. Exposure to cART was modelled in comparison to no exposure, exposure in the first trimester, and between regimens. Differences in sPTB risk were estimated using time-dependent Cox's proportional hazards models.

Results:
Overall, the sPTB rate was 16%. Cumulative cART use was associated with lower risk of PTB (Wald test P = 0.02; hazard ratio = 0.98, 95% CI = 0.96–0.99) and specific cART regimens were not associated with increased risk of sPTB. Exposure in the first trimester was not associated with sPTB and for each week of cART exposure, the risk of sPTB decreased by 2%. In a multivariable model, HIV viral load and substance use remained associated with risk of sPTB, but not cART exposure.

Conclusion:
The sPTB rate among pregnant WLWH was more than three times higher than in the general population. However, sPTB was not related specifically to use of cART; in fact, cART appeared to reduce the risk of sPTB. Uncontrolled HIV replication and substance use were associated with increased risk of sPTB among pregnant WLWH. This emphasizes the important role of prenatal care, access to cART, and smoking cessation and harm reduction to reduce the risk of sPTB in WLWH.
Impact of the 12 January 2010 earthquake on HIV case reporting in Haiti
Authors: Delcher Chris , Bae Jungjun , Rich Shannan N. , Klann Emily M. , Puttkammer Nancy , Joseph Nadjy 
Published: December 2019

Objective:
To evaluate the impact of the 12 January 2010 earthquake on HIV cases from Haiti's national HIV surveillance system and assess the characteristics of people living with HIV 1-year before and after the earthquake.

Design:
An interrupted time-series design and cross-sectional analysis.

Methods:
We used autoregressive integrated moving average structures to model abrupt changes to the monthly, incident HIV case counts from HIV care clinics as reported to the Haitian Active Longitudinal Tracking of HIV System (French acronym SALVH) by clinical networks (n = 3) and earthquake instrumental intensity zones (n = 4). Preearthquake and postearthquake differences in patient-level characteristics including clinical values were examined using the χ2 test, t tests, Wilcoxon rank-sum test.

Results:
In the month immediately following the earthquake, all three clinical networks experienced statistically significant declines in cases reported: iSanté (−31.4%), Groupe Haïtien d’Etude du Sarcome de Kaposi et des Infections Opportunistes (−29.9%) and Zamni Lasante (−32.2%). Zone 8 (the most severe) was the only area with a statistically significant decline (−45.5%). Of the three clinical networks, only iSanté returned to preearthquake reporting levels by the end of our study period. Patient-level characteristics did not change dramatically after the earthquake.

Conclusion:
Despite case reporting declines, especially in clinics near the earthquake epicenter, SALVH remained intact with less impact than expected. This national system is a critical component of Haiti's strategic health information system initiative and plays a central role to HIV monitoring and evaluation efforts.
Transmitted HIV drug resistance among individuals with newly diagnosed HIV infection: a multicenter observational study
Authors: Ye Jingrong , Hao Mingqiang , Xing Hui , Zhang Fujie , Wu Hao , Lv Wei , Jiang Tianjun , Wang Yuncong , Wang Juan , Feng Yi , Xin Ruolei , Zeng Ji , Zhao Shuai , Hao Yinxiao , Chen Jing , Ruan Yuhua , Li Xue , Shao Yiming , Lu Hongyan 
Published: December 2019

Objectives:
Fifteen years after the roll-out of antiretroviral treatment (ART) in China, there is limited information available on transmitted HIV drug resistance (TDR). This study aimed to characterize the epidemiology of TDR in China.

Design:
We conducted a prospective cross-sectional observational study.

Methods:
We analyzed the demographic, clinical, and virological data of individuals with newly diagnosed HIV infection using data from the Beijing HIV laboratory network collected between 2001 and 2017. We did population-based sequencing of the pol gene on plasma specimens and identified TDR mutations using the WHO list for surveillance of TDR mutations.

Results:
Data on TDR were available for 91% of the 10 115 individuals with newly diagnosed HIV infection tested, of whom 19.2% were from rural areas. The overall prevalence of TDR was 4.1% [95% confidence interval (CI): 3.7–4.5%], with a declining trend over the period 2001–2017. In the multivariable analysis, the risk of TDR differed significantly according to sex [odds ratio (OR) for women vs. men: 0.41, 95% CI: 0.22–0.69, P = 0.002]; infection type (OR for CRF07_BC vs. CRF01_AE: 0.24, 95% CI: 0.16–0.36, P < 0.001); and sampling period (OR for 2009–2012 vs. 2001–2008: 0.57, 95% CI: 0.41–0.79; P = 0.01), and was significantly higher among individuals from Hebei province than in those from Beijing (OR: 1.43, 95% CI: 1.05–1.96; P = 0.02).

Conclusion:
In China, the prevalence of TDR among individuals with newly diagnosed HIV infection is relatively low. Trends in TDR should be assessed in other countries with a high TDR burden.
Challenges of scale-up to dolutegravir-based regimens in sub-Saharan Africa
Authors: Salou Mounerou , Butel Christelle , Comlan Adjo S. , Konou Abla A. , Tegueni Kokou , Ehlan Amivi , Lack Fiali , Dossim Sika , Ayouba Ahidjo , Delaporte Eric , Dagnra Anoumou Y. , Peeters Martine 
Published: December 2019

Objective:
Evaluate the potential effectiveness of the implementation of dolutegravir (DTG)-based regimens in patients on failing current antiretroviral treatment (ART) given the high levels of nucleoside reverse transcriptase inhibitor (NRTI) resistance in Togo.

Design:
Patients on ART attending health facilities for routine follow-up visits and for whom HIV viral load test was performed were consecutively included.

Methods:
Protease, reverse transcriptase and integrase fragments were sequenced and analyzed for presence of drug resistance mutations for patients with viral load more than 1000 copies/ml.

Results:
Among 1681 patients, 320 (19.04%) had viral load more than 1000 copies/ml and 200 were tested for drug resistance mutations. Reverse transcriptase gene was successfully sequenced for 181/200 (90.5%) patients; 140/181 (77.4%) were resistant to NRTIs and non-NRTIs, 4/181 (2.2%) to NRTIs only and 18/181 (9.9%) to non-NRTIs only. Many viral strains accumulated mutations predicting resistance to NRTIs recommended in first and second-line DTG-based ART regimens. ART switch to a DTG-based regimen after viral load testing (viral load >1000 copies/ml) or blind switch without prior viral load testing to a new DTG-based first line, estimated 31% and 47.6% of patients to be potentially on functional DTG monotherapy respectively.

Conclusion:
Overall, our results predict that, at the scale of sub-Saharan Africa a significant proportion of patients could be on functional monotherapy. To achieve the third 90 of UNAIDS objectives, implementation of DTG-based regimens should be accompanied with an accelerated scaling up of access to viral load. Studies designed to quantify the implications of use of suboptimal DTG-based regimens are also needed.
Diffuse Alveolar Hemorrhage
Authors: Quintana Jhon H. , Aragón Cristian C. , Santos Víctor-Alfonso , de las Salas Alejandra , Tafúr Raúl-Alejandro , Aguirre-Valencia David , Cañas Carlos A. , Tobón Gabriel J. 
Published: December 2019

Background/Objective
Diffuse alveolar hemorrhage (DAH) is an uncommon but potentially fatal complication in patients with systemic lupus erythematosus (SLE). Its prognosis and factors associated with mortality are not completely clear, although invasive mechanical ventilation (IMV), use of cyclophosphamide, a high Acute Physiology and Chronic Health Evaluation II score, and infections are associated with high mortality rates. We investigated clinical and immunologic characteristics and factors associated with mortality in a cohort of Latin American patients with SLE who developed DAH.

Methods
A medical records review study was conducted of patients with SLE who were admitted to the intensive care unit (ICU) with DAH between 2011 and 2018. Clinical, laboratory, and treatment variables were compared between survivors and nonsurvivors.

Results
A total of 17 patients with SLE presented with DAH during the study period, of whom 11 (64.70%) were women. The median age was 28 (19–38.5) years. The Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) on admission to the ICU was 15.94 ± 10.07. All patients received pulse methylprednisolone and therapeutic plasma exchange, and 13 (76. %) also received cyclophosphamide. During the hospital stay, 5 patients (29.41%) died. A high SLEDAI on admission, low albumin, and days of IMV and inotropic/vasoactive support were statistically significant in comparing nonsurvivors with survivors. Other scales of disease severity commonly used in the ICU, however, were not significantly associated with a fatal outcome.

Conclusions
Hypoalbuminemia, longer duration of IMV or inotropic/vasoactive treatment, and a high SLEDAI are potential prognostic factors for mortality in patients with SLE and DAH admitted to the ICU.
Assessment of Endothelial Dysfunction in Acute and Convalescent Phases of Kawasaki Disease Using Automated Edge Detection Software
Authors: Routhu Santhosh Kumar , Singhal Manphool , Jindal Ankur Kumar , Kumar Vivek , Yadav Ashok Kumar , Singh Surjit 
Published: December 2019

Objective
The aim of this study was to assess endothelial dysfunction in acute and convalescent phases of Kawasaki disease (KD) using automated edge detection software.

Methods
This was a case-control study to assess the flow-mediated dilatation (FMD) of brachial artery (BA) in patients with KD during acute phase and at least 3 months after diagnosis. A 10-MHz multifrequency linear array probe attached to a high-resolution ultrasound machine (PHILIPS Medical System-IU22) was used to acquire the images. Automated edge detection software was used to assess BA diameter.

Results
A total of 16 children with KD and 16 healthy children were enrolled in the study. Mean ± SD maximum BA diameter was found to be significantly low during the acute stage of KD (2.56 ± 0.36 mm) as compared with the convalescence phase (2.93 mm ± 0.31) and in healthy controls (2.95 mm ± 0.56). The mean ± SD percentage change in the FMD was found to be significantly low in the acute phase of KD (12.32 ± 6.2) as compared with the convalescence phase of KD (17.99 ± 8.13) and healthy controls (26.88 ± 12.76). The mean ± SD percentage change in the FMD was also found to be significantly low in the convalescence phase of KD as compared with healthy controls.

Conclusions
The FMD of the BA is significantly reduced in patients during the acute and convalescence phase of KD as compared with normal healthy children. The endothelial dysfunction was present even in patients who had no obvious coronary artery abnormalities during the acute stage.
A North American History of Cannabis Use in the Treatment of Epilepsy
Authors: Carter Alexandra 
Published: December 2019

Summary:
Cannabis has been used for millennia in religious ceremonies, for recreation and for its medicinal qualities. There are multiple accounts detailing the specific ailments cannabis has been used to treat, many of which have included epilepsy. Racial discrimination and political stigmatization led to prohibition, which limited both patients' and researchers' access to the drug through the 20th century. Recently, academic interest has been renewed in cannabis, especially regarding the modulation of cortical excitability via the human endocannabinoid system. Modern research has produced several promising studies regarding the treatment of epileptic encephalopathies. Legalization of marijuana in Canada has potentially allowed for further trials, but it is by no means an end to the controversy surrounding the treatment of epilepsy with cannabinoids.