bluuebunny/crossref_metadata_2025_split huggingface dataset:
Parents’ experiences of requests for organ and tissue donation: the value of asking
Authors: Darlington Anne-Sophie , Long-Sutehall Tracy , Randall Duncan , Wakefield Claire , Robinson Victoria , Brierley Joe 
Published: May 2019

ObjectiveA proportion of children die, making them potentially eligible to be organ/tissue donors. Not all are approached for donation, and experiences of those parents are not well understood. The objective was to investigate to what extent organ and tissue donation (OTD) is discussed as part of end-of-life care and to explore parents’ and healthcare professionals’ (HCPs) experiences.DesignA retrospective qualitative study.SettingMulticentre study with participants recruited through two neonatal intensive care units (ICUs), two paediatric ICUs, a cardiac ICU and a children’s hospice.PatientsBereaved parents, parents of a child with a long-term condition (LTC) and HCPs.InterventionsNone.Main outcomes and measuresParents’ and HCPs’ views and experiences of discussions about OTD.Results24 parents of 20 children were interviewed: 21 bereaved parents and 3 parents of a child with a LTC. Seven parents were asked about donation (13 not asked), four agreed and two donated. 41 HCPs were interviewed. Themes: complexity of donation process, OTD as a coping strategy, the importance of asking, difficulty of raising the topic,\ and parents’ assumptions about health of organs (when donation is not discussed).ConclusionsThe findings add new knowledge about parents’ assumptions about the value of their child’s organs when discussions about OTD are not raised, and that HCPs do not routinely ask, are sometimes hesitant to ask in fear of damaging relationships, and the reality of the complexity of the donation process. Given the current levels of awareness around OTD, the topic should be raised.
Functional outcomes in children with anatomically repaired transposition of the great arteries with regard to congenital ventricular septal defect and coronary pattern
Authors: Häcker Anna-Luisa , Reiner Barbara , Oberhoffer Renate , Hager Alfred , Ewert Peter , Müller Jan 
Published: May 2019

ObjectiveDespite decreasing mortality, functional impairments in children with transposition of the great arteries (TGA) are still a concern. This study analyses health-related physical fitness (HRPF), arterial stiffness and health-related quality of life (HRQoL) in children with anatomically repaired TGA regarding congenital ventricular septal defect (VSD) and coronary patterns.Patients and methods68 children with anatomically repaired TGA with or without VSD (12.9±3.7 years, 19.1% female) were investigated between August 2014 and October 2017. HRPF was assessed by five tests of the FITNESSGRAM, arterial stiffness was measured by oscillometric measurement using Mobil-O-Graph and HRQoL was analysed with a self-report questionnaire (KINDL-R). All test results were compared with a healthy reference cohort (n=2116, 49.1% female) adjusted for sex and age.ResultsChildren with anatomically repaired TGA had significantly worse HRPF (z-score: −0.58±0.81, p<0.001), increased pulse wave velocity (TGA: 4.9±0.3 m/s vs healthy: 4.8±0.3 m/s, p=0.028) and central systolic blood pressure (TGA: 105.9±5.8 mm Hg vs healthy: 103.3±5.7 mm Hg, p=0.001). No difference was found for HRQoL between the two groups (total HRQoL score: TGA: 76.5±10.2 vs healthy: 75.2±10.1, p=0.315). Neither the coronary pattern nor a congenital VSD resulted in significant differences in all functional outcomes.ConclusionChildren with anatomically repaired TGA exhibit impaired HRPF and increased arterial stiffness whereas their HRQoL is normal. The underlying coronary pattern seems to have no influence on the functional outcome, nor does an accompanied congenital VSD.
Assessing feasibility of routine identification tools for mental health disorder in neurology clinics
Authors: Bennett Sophie D , Heyman Isobel , Coughtrey Anna E , Buszewicz Marta , Byford Sarah , Dore Caroline J , Fonagy Peter , Ford Tamsin , Moss-Morris Rona , Stephenson Terence , Varadkar Sophia , Walker Erin , Shafran Roz 
Published: May 2019

ObjectiveWe aimed to test the feasibility of using an online parent-completed diagnostic assessment for detecting common mental health disorders in children attending neurology clinics. The assessment does not require intervention by a mental health professional or additional time in the clinic appointment.SettingTwo parallel and related screening studies were undertaken: Study 1: Tertiary paediatric neurology clinics. Study 2: Secondary and tertiary paediatric neurology clinics.PatientsStudy 1: 406 Young people aged 7–18 attending paediatric neurology clinics. Study 2: 225 Young people aged 3–18 attending paediatric epilepsy clinics.InterventionsParents completed online versions of the Strengths and Difficulties Questionnaire (SDQ) and Development and Well-being Assessment (DAWBA).Main outcome measuresWe investigated: the willingness of families to complete the measures, proportion identified as having mental health disorders, time taken to complete the measures and acceptability to families and clinicians.ResultsThe mean total difficulties score of those that had completed the SDQ fell in the ‘high’ and ‘very high’ ranges. 60% and 70% of the DAWBAS completed met criteria for at least one DSM-IV disorder in study 1 and 2 respectively. 98% of the parents reported that the screening methods used were acceptable.
Academic, behavioural and quality of life outcomes of slight to mild hearing loss in late childhood: a population-based study
Authors: Wang Jing , Quach Jon , Sung Valerie , Carew Peter , Edwards Ben , Grobler Anneke , Gold Lisa , Wake Melissa 
Published: May 2019

ObjectiveTo investigate the associations of hearing thresholds and slight to mild hearing loss with academic, behavioural and quality of life outcomes in children at a population level.MethodsDesign and participants:children aged 11–12 years in the population-based cross-sectional Child Health CheckPoint study within the Longitudinal Study of Australian Children.Audiometry:mean hearing threshold across 1, 2 and 4 kHz (better and worse ear); slight/mild hearing loss (threshold of 16–40 decibels hearing loss (dB HL)).Outcomes:National Assessment Program – Literacy and Numeracy, language, teacher-reported learning, parent and teacher reported behaviour and self-reported quality of life.Analysis:linear regression quantified associations of hearing threshold/loss with outcomes.ResultsOf 1483 children (mean age 11.5 years), 9.2% and 13.1% had slight/mild bilateral and unilateral hearing loss, respectively. Per SD increment in better ear threshold (5.7 dB HL), scores were worse on several academic outcomes (eg, reading 0.11 SD, 95% CI 0.05 to 0.16), parent-reported behaviour (0.06 SD, 95% CI 0.01 to 0.11) and physical (0.09 SD, 95% CI 0.04 to 0.14) and psychosocial (0.06 SD, 95% CI 0.01 to 0.11) Pediatric Quality of Life Inventory (PedsQL). Compared with normally hearing children, children with bilateral slight/mild losses scored 0.2–0.3 SDs lower in sentence repetition, teacher-reported learning and physical PedsQL but not other outcomes. Similar but attenuated patterns were seen in unilateral slight/mild losses.ConclusionsHearing thresholds and slight/mild hearing loss showed small but important associations with some child outcomes at 11–12 years. Justifying hearing screening or intervention at this age would require better understanding of its longitudinal and indirect effects, alongside effective management and appropriate early identification programmes.
Course of upper eyelid retraction in thyroid eye disease
Authors: Lee Dong Cheol , Young Stephanie M , Kim Yoon-Duck , Woo Kyung In 
Published: May 2019

AimsTo evaluate the natural course of upper eyelid retraction (UER) in patients with thyroid eye disease (TED) and factors affecting its course.MethodsRetrospective non-interventional cohort study in a single tertiary institution from March 2006 to March 2015 on patients with TED with (1) unilateral or bilateral UER within 6 months from initial presentation, and (2) no prior interventions nor surgical treatment for their UER. Main outcomes and measures were mean margin reflex distance 1 (MRD1) and factors associated with UER improvement.ResultsThere were a total of 61 patients and 81 eyes (41 unilateral and 20 bilateral UER). Mean age was 42.3±15.1 years. Mean MRD1 decreased from 6.1 mm at presentation to 4.8 mm at 12 months, and 4.4 mm at 24 months. The proportion of eyes with normalisation of lid height increased from 0% at presentation to 22.2% at 6 months, 37.0% at 12 months and 49.4% at 24 months. Mean time to normalisation of MRD1 was 18.0±12.4 months. A positive family history of TED was found to be associated with a 6.2 times lower likelihood of normalisation. Change in exophthalmometry, clinical activity score and thyroid-stimulating immunoglobulin were significantly correlated to change in MRD1 (p<0.05). There was no correlation between change in MRD1 and thyroid-stimulating hormone receptor antibodies.ConclusionAn improved knowledge of the natural history of UER in TED will allow us to better decide and evaluate the optimal management for such patients.
Expanding the retinal phenotype of RP1: from retinitis pigmentosa to a novel and singular macular dystrophy
Authors: Riera Marina , Abad-Morales Víctor , Navarro Rafael , Ruiz-Nogales Sheila , Méndez-Vendrell Pilar , Corcostegui Borja , Pomares Esther 
Published: May 2019

PurposeThis study aimed to identify the underlying genetic cause(s) of inherited retinal dystrophy (IRD) in 12 families of Kuwaiti origin affected by macular dystrophy and four Spanish patients affected by retinitis pigmentosa (RP).MethodsClinical diagnoses were based on standard ophthalmic evaluations (best-corrected visual acuity, retinography, fundus autofluorescence imaging, optical coherence tomography, electroretinography and visual field tests). Panel-based whole exome sequencing was used to simultaneously analyse 224 IRD genes in one affected member of each family. The putative causative variants were confirmed by Sanger sequencing and cosegregation analyses. Haplotype analysis was performed using single nucleotide polymorphisms.ResultsA homozygous missense mutation c.606C>A (p.Asp202Glu) in RP1 was found to be the molecular cause of IRD in all 12 families from Kuwait. These patients exhibited comparable symptoms, including progressive decline in visual acuity since adolescence. Fundus autofluorescence images revealed bilateral macular retinal pigment epithelium disturbances, with neither perimacular flecks nor peripheral alterations. A shared haplotype spanning at least 1.1 Mb was identified in all families, suggesting a founder effect. Furthermore, RP1 variants involving nonsense and/or frameshifting mutations (three of them novel) were identified in three Spanish autosomal-recessive RP families and one dominant RP pedigree.ConclusionThis study describes, for the first time, a macular dystrophy phenotype caused by an RP1 mutation; establishing a new genotype-phenotype correlation in this gene, expanding its mutation spectrum and further highlighting the clinical heterogeneity associated with IRD.
Clinical and biochemical analysis of the ageing tear film
Authors: Mann Aisling , Campbell Darren , Mirza Zeba , Hunt Olivia , Wolffsohn James Stuart , Tighe Brian J 
Published: May 2019

BackgroundTear film stability is important for healthy visual function, and yet little is known of the ageing mechanisms. The aim of this study was to investigate parallels between biochemical changes and clinical physical parameters, which occur in the tear film of two subject populations differing in age by over 30 years.MethodsTwo distinct age groups were chosen: 11 ‘younger’ (23.7±2.1 years) and 19 ‘older’ (63.0±4.0 years) subjects. A series of clinical tests were performed to access tear volume, tear film stability and general ocular health. Tear protein analyses from extracted Schirmer strips were conducted with the Agilent 2100 Bioanalyzer.ResultsClinical investigations highlighted significant differences between the age groups. For example: McMonnies scores (p=0.009) and bulbar redness (p=0.038) were higher for the older group, whereas tear meniscus height was larger (p=0.018) in the younger group. Similarly, relative plasma-derived albumin levels were higher (17.1%±12.4%) in the tears of the older, compared with the younger (5.0%±9.6%) group. A protein peak at ∼23 kDa was observed in 53% of the older group samples but in only 36% of the samples of the younger subjects (p=0.122).ConclusionsDistinct differences in tear film composition between the two age groups were observed. Parallels in terms of clinical symptoms which reflected a biochemical response (and vice versa) were found, but specific correlations between clinical measurements and biomarkers for individual subjects were not observed.
Illness perceptions in people newly diagnosed with glaucoma and ocular hypertension
Authors: McDonald Leanne , Boodhna Trishal , Ajtony Csilla , Turnbull Paula , Bourne Rupert R A , Crabb David P 
Published: May 2019

Background/aimsTo determine whether self-reported illness perceptions in newly diagnosed patients with primary open-angle glaucoma (POAG) and ocular hypertension (OHT) are more negative compared with peers who have lived with their diagnosis for more than 2 years.MethodsA cross-sectional study of 58 newly diagnosed patients with POAG and OHT recruited at their first clinic visit. Electronic patient records were used to identify similar patients (n=58, related by age and severity of visual field loss) who had their diagnosis for >2 years. All participants completed the Brief Illness Perception Questionnaire (BIPQ), EQ5D general health measure and Type D Personality Scale (DS14).ResultsAverage BIPQ scores were similar for people newly diagnosed with POAG and POAG diagnosed >2 years and were no different to newly diagnosed OHT and OHT diagnosed >2 years POAG (p=0.46). An analysis correcting for personality type (DS14) and general health (EQ5D) indicated newly diagnosed patients with POAG to have marginally better illness perceptions on individual BIPQ items quantifying impact on life in general, experience of symptoms and ‘understanding’ of their condition (all p<0.01). In contrast, patients with POAG with a diagnosis >2 years understood better their condition to be long-term (p<0.01).ConclusionsSome illness perceptions differed between newly diagnosed people and patients living with their diagnosis for >2 years. Illness perception for people with manifest glaucoma and at risk of glaucoma (OHT) were similar; the latter might benefit from an intervention at diagnosis that highlights the better prognosis for OHT compared with POAG.
Incidence trends of conjunctival malignant melanoma in Canada
Authors: Ghazawi Feras M , Darwich Rami , Le Michelle , Jfri Abdulhadi , Rahme Elham , Burnier Julia Valdemarin , Sasseville Denis , Burnier Jr Miguel N , Litvinov Ivan V 
Published: May 2019

BackgroundMelanoma is the most common primary malignancy of the eye in adults. While the epidemiology of uveal melanoma has recently been described in Canada, little is known about the epidemiology and geographic distribution of patients with conjunctival melanoma (CM) in Canada.MethodsWe conducted a population-based study of CM incidence across all Canadian provinces and territories during 1992–2010 using two independent population-based registries.Results190 patients were diagnosed with CM in Canada from 1992 to 2010. 55.3 % of these patients were men. The mean annual incidence rate of CM in Canada was 0.32 cases per million individuals (0.35 and 0.29 cases per million individuals for men and women, respectively). The incidence rates for Canadian provinces demonstrated that the eastern provinces of Nova Scotia and New Brunswick had higher age-adjusted incidence rates than the national average, with rates of 0.52 and 0.47 cases per million individuals per year, respectively.ConclusionsThis analysis demonstrates novel variations in CM incidence rates between different Canadian provinces. These results taken together with the data reported from the USA confirm the North-to-South geographic gradient of increasing CM incidence. This research highlights that the epidemiology of CM in North America is comparable to that of cutaneous malignant melanoma in contrast to the trends for uveal melanoma distribution.
Eplerenone for the treatment of chronic central serous chorioretinopathy: 3-year clinical experience
Authors: Petkovsek Daniel S , Cherfan Daniel G , Conti Felipe F , Hom Grant L , Ehlers Justin P , Babiuch Amy S , Rachitskaya Aleksandra V , Kaiser Peter K , Schachat Andrew P , Srivastava Sunil K , Sharma Sumit , Singh Rishi P 
Published: May 2019

Background/aimsThe efficacy of mineralocorticoid receptor antagonist eplerenone to treat chronic central serous chorioretinopathy (CSCR) has been established. However, previous studies have been limited by small cohort size and short follow-up duration. This study aims to report 3-year clinical outcomes of patients treated with eplerenone for chronic CSCR.MethodsInstitutional review board-approved retrospective chart analysis at a single institution from 2012 to 2018. Baseline best-corrected visual acuity and anatomical measurements related to degree of subretinal fluid (SRF) were collected at eplerenone initiation. Follow-up data were collected at the closest date to 12, 24 and 36 months.ResultsData were obtained for 100 eyes of 83 patients at 1-year (mean 11.18 ± 4.00 months), 49 eyes at 2-year (24.01 ± 3.33 months) and 33 eyes at 3-year (mean 35.5 ± 7.89 months) follow-up visits. The rate of complete SRF resolution was 31%, 28% and 33%, respectively. At final follow-up, logarithm of the minimum angle of resolution visual acuity change from baseline was +0.10 ± 0.24 (p = 0.130). Average change from baseline at final follow-up for central subfield thickness was −97 ± 140.6 µm (p < 0.001), cube volume was –1.07 ± 1.71 mm3 (p < 0.001), macular thickness –28. 5 ± 47.5 µm (p < 0.001), maximum SRF height was −95.6 ± 160.5 µm (p < 0.001) and maximum SRF diameter was −1169.0 ± 1638.7 µm (p = 0.008).ConclusionAnatomical improvement occurs primarily within the first year of eplerenone treatment for chronic CSCR.
Association of urinary metal profiles with serum uric acid: a cross-sectional study of traffic policemen in Wuhan, China
Authors: Dai Xiayun , Deng Qifei , Guo Dongmei , Ni Lei , Li Jichao , Chen Zhenlong , Zhang Ling , Xu Tian , Song Weili , Luo Yongbin , Hu Ling , Hu Caiying , Yi Guilin , Pan Zhiwei 
Published: May 2019

ObjectivesSerum uric acid (SUA) is both a strong antioxidant and one of the key risk factors of cardiovascular diseases (CVDs). We aimed to investigate the associations of urinary metal profile with SUA in traffic policemen in Wuhan, China.DesignA cross-sectional study was carried out in traffic policemen.SettingA seriously polluted Chinese city.ParticipantsA total of 186 traffic policemen were recruited in this study. About 56 of them worked in the logistics department and the other 130 maintained traffic order or dealt with traffic accidents on the roads. All these subjects had worked as a policeman for at least 1 year.Main outcome measuresSUA.ResultsThe significantly negative association of lead with SUA was consistent between single-metal and multiple-metal models (p=0.004 and p=0.020, respectively). Vanadium, chromium and tin were reversely associated with SUA levels in the single-metal models after false discovery rate (FDR) adjustment (allP_FDR< 0.05). One IQR increase in vanadium, chromium, tin and lead was associated with 26.9 µmol/L (95% CI −44.6 to −9.2; p=0.003), 27.4 µmol/L (95% CI −46.1 to −8.8; p=0.004), 11.2 µmol/L (95% CI −18.9 to −3.4; p=0.005) and 16.4 µmol/L (95% CI −27.6 to −5.2; p=0.004) decrease in SUA, respectively. Significant interaction between smoking and vanadium on decreased SUV was found (pfor interaction= 0.007 and p_FDR= 0.028).ConclusionsUrinary vanadium, chromium, tin and lead were negatively associated with SUA. Vanadium and cigarette smoking jointly affected SUA levels. Further studies are needed to replicate these findings and to investigate the potential mechanisms.
Clinical and Cost-effectiveness of a Comprehensive geriatric assessment and management for Canadian elders with Cancer—the 5C study: a study protocol for a randomised controlled phase III trial
Authors: Puts Martine T E , Hsu Tina , Mariano Caroline , Monette Johanne , Brennenstuhl Sarah , Pitters Eric , Ray Jack , Wan-Chow-Wah Doreen , Kozlowski Natascha , Krzyzanowska Monika , Amir Eitan , Elser Christine , Jang Raymond , Prica Anca , Krahn Murray , Beland Francois , Bergman Simon , Koneru Rama , Lemonde Manon , Szumacher Ewa , Zidulka Joan , Fung Shek , Li Anson , Emmenegger Urban , Mehta Rajin , Flemming Kendra , Breunis Henriette , Alibhai Shabbir M H 
Published: May 2019

IntroductionGeriatric assessment and management is recommended for older adults with cancer referred for chemotherapy but no randomised controlled trial has been completed of this intervention in the oncology setting.Trial designA two-group parallel single blind multi-centre randomised trial with a companion trial-based economic evaluation from both payer and societal perspectives with process evaluation.ParticipantsA total of 350 participants aged 70+, diagnosed with a solid tumour, lymphoma or myeloma, referred for first/second line chemotherapy, who speak English/French, have an Eastern Collaborative Oncology Group Performance Status 0–2 will be recruited. All participants will be followed for 12 months.InterventionGeriatric assessment and management for 6 months. The control group will receive usual oncologic care. All participants will receive a monthly healthy ageing booklet for 6 months.ObjectiveTo study the clinical and cost-effectiveness of geriatric assessment and management in optimising outcomes compared with usual oncology care.RandomisationParticipants will be allocated to one of the two arms in a 1:1 ratio. The randomisation will be stratified by centre and treatment intent (palliative vs other).OutcomeQuality of life.Secondary outcomes(1) Cost-effectiveness, (2) functional status, (3) number of geriatric issues successfully addressed, (4) grades3–5 treatment toxicity, (5) healthcare use, (6) satisfaction, (7) cancer treatment plan modification and (8) overall survival.Planned analysisFor the primary outcome we will use a pattern mixture model using an intent-to-treat approach (at 3, 6 and12 months). We will conduct a cost-utility analysis alongside this clinical trial. For secondary outcomes 2–4, we will use a variety of methods.Ethics and disseminationOur study has been approved by all required REBs. We will disseminate our findings to stakeholders locally, nationally and internationally and by publishing the findings.Trial registration numberNCT03154671.