bluuebunny/crossref_metadata_2025_split huggingface dataset:
Clinical information quality of digital health technologies: protocol for an international eDelphi study
Authors: Fadahunsi Kayode Philip , Wark Petra A , Mastellos Nikolaos , Gallagher Joseph , Majeed Azeem , Car Josip 
Published: May 2022

IntroductionDigital health technologies (DHTs) such as electronic health records, clinical decision support systems and electronic prescribing systems are widely used in healthcare. While adoption of DHTs can improve healthcare delivery, information quality (IQ) problems associated with DHTs can compromise quality and safety of care. The clinical information quality (CLIQ) framework for digital health is a novel approach to assessing the quality of clinical information from DHTs. This study aims to appraise the CLIQ framework by exploring clinicians’ perspectives on the relevance, definition and assessment of IQ dimensions as defined in the framework. This study will adapt the CLIQ framework to the needs of clinical information users—the clinicians. The contextualised CLIQ framework will offer a pragmatic approach to assessing clinical information from DHTs and may help to forestall IQ problems that can compromise quality and safety of care.Methods and analysisThe electronic Delphi (eDelphi) approach will be used to engage a heterogeneous group of clinicians with patient-facing and/or information governance roles recruited through purposive and snowball sampling techniques. A semi-structured online questionnaire will be used to explore clinicians’ perspectives on relevance, definition and assessment of IQ dimensions in the CLIQ framework. Survey responses on the relevance of dimensions will be summarised using descriptive statistics to inform decisions on retention of dimensions and termination of the study, based on pre-specified rules. Analysis of the free-text responses will be used to revise definition and assessment of dimensions.Ethics and disseminationEthics approval has been obtained from the Imperial College Research Governance and Integrity Team (Imperial College Research Ethics Committee (ICREC) Reference number: 20IC6396). The results of the study will be published in a peer-reviewed journal and presented at scientific conferences.
Public opinion on sharing data from health services for clinical and research purposes without explicit consent: an anonymous online survey in the UK
Authors: Jones Linda A , Nelder Jenny R , Fryer Joseph M , Alsop Philip H , Geary Michael R , Prince Mark , Cardinal Rudolf N 
Published: May 2022

ObjectivesUK National Health Service/Health and Social Care (NHS/HSC) data are variably shared between healthcare organisations for direct care, and increasingly de-identified for research. Few large-scale studies have examined public opinion on sharing, including of mental health (MH) versus physical health (PH) data. We measured data sharing preferences.Design/setting/interventions/outcomesPre-registered anonymous online survey, measuring expressed preferences, recruiting February to September 2020. Participants were randomised to one of three framing statements regarding MH versus PH data.ParticipantsOpen to all UK residents. Participants numbered 29 275; 40% had experienced an MH condition.ResultsMost (76%) supported identifiable data sharing for direct clinical care without explicit consent, but 20% opposed this. Preference for clinical/identifiable sharing decreased with geographical distance and was slightly less for MH than PH data, with small framing effects. Preference for research/de-identified data sharing without explicit consent showed the same small PH/MH and framing effects, plus greater preference for sharing structured data than de-identified free text. There was net support for research sharing to the NHS, academic institutions, and national research charities, net ambivalence about sharing to profit-making companies researching treatments, and net opposition to sharing to other companies (similar to sharing publicly). De-identified linkage to non-health data was generally supported, except to data held by private companies. We report demographic influences on preference. A majority (89%) supported a single NHS mechanism to choose uses of their data. Support for data sharing increased during COVID-19.ConclusionsSupport for healthcare data sharing for direct care without explicit consent is broad but not universal. There is net support for the sharing of de-identified data for research to the NHS, academia, and the charitable sector, but not the commercial sector. A single national NHS-hosted system for patients to control the use of their NHS data for clinical purposes and for research would have broad support.Trial registration numberISRCTN37444142.
Scalable psychological interventions for Syrian refugees in Europe and the Middle East: STRENGTHS study protocol for a prospective individual participant data meta-analysis
Authors: de Graaff Anne M , Cuijpers Pim , Acarturk Ceren , Akhtar Aemal , Alkneme Mhd Salem , Aoun May , Awwad Manar , Bawaneh Ahmad Y , Brown Felicity L , Bryant Richard , Burchert Sebastian , Carswell Kenneth , Drogendijk Annelieke , Engels Michelle , Fuhr Daniela C , Hansen Pernille , van 't Hof Edith , Giardinelli Luana , Hemmo Mahmoud , Hessling Jonas M , Ilkkursun Zeynep , Jordans Mark J D , Kiselev Nikolai , Knaevelsrud Christine , Kurt Gülsah , Martinmäki Saara , McDaid David , Morina Naser , Naser Hadeel , Park A-La , Pfaltz Monique C , Roberts Bayard , Schick Matthis , Schnyder Ulrich , Spaaij Julia , Steen Frederik , Taha Karine , Uygun Ersin , Ventevogel Peter , Whitney Claire , Witteveen Anke B , Sijbrandij Marit 
Published: May 2022

IntroductionThe World Health Organization’s (WHO) scalable psychological interventions, such as Problem Management Plus (PM+) and Step-by-Step (SbS) are designed to be cost-effective non-specialist delivered interventions to reduce symptoms of common mental disorders, such as anxiety, depression and post-traumatic stress disorder (PTSD). The STRENGTHS consortium aims to evaluate the effectiveness, cost-effectiveness and implementation of the individual format of PM+ and its group version (gPM+), as well as of the digital SbS intervention among Syrian refugees in seven countries in Europe and the Middle East. This is a study protocol for a prospective individual participant data (IPD) meta-analysis to evaluate (1) overall effectiveness and cost-effectiveness and (2) treatment moderators of PM+, gPM+ and SbS with Syrian refugees.Methods and analysisFive pilot randomised controlled trials (RCTs) and seven fully powered RCTs conducted within STRENGTHS will be combined into one IPD meta-analytic dataset. The RCTs include Syrian refugees of 18 years and above with elevated psychological distress (Kessler Psychological Distress Scale (K10>15)) and impaired daily functioning (WHO Disability Assessment Schedule 2.0 (WHODAS 2.0>16)). Participants are randomised into the intervention or care as usual control group, and complete follow-up assessments at 1-week, 3-month and 12-month follow-up. Primary outcomes are symptoms of depression and anxiety (25-item Hopkins Symptom Checklist). Secondary outcomes include daily functioning (WHODAS 2.0), PTSD symptoms (PTSD Checklist for DSM-5) and self-identified problems (PSYCHLOPS). We will conduct a one-stage IPD meta-analysis using linear mixed models. Quality of evidence will be assessed using the GRADE approach, and the economic evaluation approach will be assessed using the CHEC-list.Ethics and disseminationLocal ethical approval has been obtained for each RCT. This IPD meta-analysis does not require ethical approval. The results of this study will be published in international peer-reviewed journals.
Impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey
Authors: Vyas Jui , Muirhead Nina , Singh Ravinder , Ephgrave Rachel , Finlay Andrew Y 
Published: May 2022

ObjectivesThe aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).DesignA patient-partner, multinational, subject-initiated, cross-sectional online survey.SettingInternational survey using ME/CFS charities, support groups and social media.ParticipantsParticipants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey. Participants with ME/CFS had a mean age of 45.8 years (range 18–81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18–87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS.InterventionsEuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.ResultsThe mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best). People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety. For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL. Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.ConclusionsTo the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.
Development of a tool to evaluate medication management guidance provided to carers of people living with dementia at hospital discharge: a mixed methods study
Authors: Sawan Mouna J , Gench Melissa , Bond Christine , Jeon Yun-Hee , Hilmer Sarah N , Chen Timothy F , Gnjidic Danijela 
Published: May 2022

ObjectiveMedication management guidance for carers of people with dementia at hospital discharge is important to prevent medication-related harm during transitions of care. This study aimed to develop a tool to evaluate medication management guidance provided to carers of people with dementia at hospital discharge.DesignThe tool was developed using mixed methods involving two stages. Stage 1 involved item generation and content validation. Items were based on a previous qualitative study and systematic review. Content validation involved experts and consumers with knowledge or experience of medication management guidance in the acute care setting, and rating each item on importance and relevance. Stage 2 involved conducting cognitive interviews with carers of people with dementia to pretest the tool.SettingFor stage 1, experts and consumers from Australia, USA and New Zealand were included. For stage 2, carers of people with dementia were recruited across Australia.Participants18 experts and consumers participated in round 1 of content validation, and 13 experts and consumers completed round 2. Five carers of people with dementia participated in cognitive interviews.ResultsThe final tool contained 30 items capturing information across five domains: (1) provision of medication management guidance at hospital discharge; (2) carer understanding of medication management guidance provided at discharge; (3) carer engagement in discussing the safe use of medications at discharge; (4) carer preparedness to conduct medication management activities after discharge; and (5) co-ordination of medication management guidance after discharge.ConclusionsWe developed the first tool to assess medication management guidance provided for carers of people with dementia at hospital discharge. The tool may be useful to inform future research strategies to improve the delivery of medication management guidance at discharge.
Impact of vaping introduction on cigarette smoking in six jurisdictions with varied regulatory approaches to vaping: an interrupted time series analysis
Authors: Wu Daphne C , Essue Beverley M , Jha Prabhat 
Published: May 2022

ObjectiveWe sought to quantify the impact of vaping introduction on cigarette smoking across settings with varied regulatory approaches to vaping.DesignInterrupted time series analysis, adjusted for cigarette tax levels.SettingFour Canadian provinces, UK and Australia.ParticipantsEntire population of smokers in each country.InterventionsThe year that vaping was widely introduced in each country.Primary and secondary outcome measuresThe primary outcome is cigarette consumption per adult, and the secondary outcome is smoking prevalence among young adults.ResultsBased on allowable nicotine levels, restrictions on e-cigarette advertising, sales and access, and taxation, the least to most restrictive jurisdictions were, in order, Alberta, Ontario, Quebec and British Columbia (all in Canada), UK and Australia. In most, but not all, settings where higher nicotine content was permitted in vaping products (66 mg/mL), vaping introduction led to a reduction in cigarette consumption per capita (Ontario: p=0.037, Quebec: p=0.007) or in smoking prevalence among young adults (Alberta men, p=0.027; Quebec men, p=0.008; Quebec women, p=0.008). In the UK, where the maximum permitted nicotine content in vaping products was 20 mg/mL, vaping introduction slowed the declining trend in cigarette smoking among men aged 16–24 years (p=0.031) and 25–34 years (p=0.002) but not in cigarette consumption per adult. In Australia, where nicotine was not permitted in e-cigarettes, e-cigarette introduction slowed the declining trend in cigarette consumption per capita and in smoking prevalence among men aged 18–24 years (cigarette consumption: p=0.015, prevalence: p=0.044).ConclusionIn environments that enable substitution of cigarettes with e-cigarettes, e-cigarette introduction reduces overall cigarette consumption. Thus, to reduce cigarette smoking, policies that encourage adults to substitute cigarette smoking with vaping should be considered.
‘Children eat all things here’: a qualitative study of mothers’ perceptions and cultural beliefs about underweight and overweight children and adolescents in selected communities in two Nigerian states
Authors: Adeomi Adeleye Abiodun , Fatusi Adesegun , Klipstein-Grobusch Kerstin 
Published: May 2022

IntroductionThe perception of mothers about causes of underweight and overweight among children or adolescents and associated cultural beliefs may influence nutritional status. However, data from qualitative studies on this subject and regarding age 6–19 are scarce in Nigeria.ObjectiveThis study aimed to explore mothers’ perceptions and cultural beliefs about underweight and overweight children and adolescents in selected communities in a northern and a southern Nigerian state.DesignThis was a qualitative study using focus group discussions (FGD). Eight FGD sessions were held. The interviews were transcribed verbatim, and the transcripts were coded and analysed using NVivo V.11, and direct quotations representing the themes generated from the perspectives were cited as appropriate.SettingThe study was carried out in eight randomly selected rural and urban communities in Gombe and Osun states of Nigeria.ParticipantsSeventy-six mothers of children and adolescents aged 6–19 years.ResultsThe mothers identified concepts, causes and community experience of underweight and overweight children and adolescents, however, some gaps and misconceptions were observed. These included perspectives that suggest a limited understanding of the concepts of mild and moderate malnutrition and stunting and citing of ‘witches and wizards’ as causes of malnutrition. The mothers observed that being underweight was more prevalent in rural communities of Osun and Gombe states, while overweight was more prevalent in urban communities in Osun state. The majority of the women reported no known food taboo or restrictions, and no cultural beliefs relating to the nutrition of children and adolescents.ConclusionGaps and misconceptions exist in the perceptions of mothers on underweight and overweight children and adolescents. Food taboos, food restrictions and other cultural beliefs were not reported by majority of the mothers. Educational programmes for mothers on child/adolescent nutrition should target identified gaps and misconceptions.
Who is at the centre of what? A scoping review of the conceptualisation of ‘centredness’ in healthcare
Authors: Sturgiss Elizabeth Ann , Peart Annette , Richard Lauralie , Ball Lauren , Hunik Liesbeth , Chai Tze Lin , Lau Steven , Vadasz Danny , Russell Grant , Stewart Moira 
Published: May 2022

ObjectivesWe aimed to identify the core elements of centredness in healthcare literature. Our overall research question is: How has centredness been represented within the health literature published between 1990 and 2019?MethodsA scoping review across five databases (Medline (Ovid), PsycINFO, CINAHL, Embase (Ovid) and Scopus; August 2019) to identify all peer-reviewed literature published since 1990 that focused on the concept of centredness in any healthcare discipline or setting. Screening occurred in duplicate by a multidisciplinary, multinational team. The team met regularly to iteratively develop and refine a coding template that was used in analysis and discuss the interpretations of centredness reported in the literature.ResultsA total of 23 006 title and abstracts, and 499 full-text articles were screened. A total of 159 articles were included in the review. Most articles were from the USA, and nursing was the disciplinary perspective most represented. We identified nine elements of centredness: Sharing power; Sharing responsibility; Therapeutic relationship/bond/alliance; Patient as a person; Biopsychosocial; Provider as a person; Co-ordinated care; Access; Continuity of care. There was little variation in the concept of centredness no matter the preceding word (eg, patient-/person-/client-), healthcare setting or disciplinary lens. Improving health outcomes was the most common justification for pursuing centredness as a concept, and respect was the predominant driving value of the research efforts. The patient perspective was rarely included in the papers (15% of papers).ConclusionsCentredness is consistently conceptualised, regardless of the preceding word, disciplinary lens or nation of origin. Further research should focus on centring the patient perspective and prioritise research that considers more diverse cultural perspectives.
BioFACTS: biomarkers of rhabdomyolysis in the diagnosis of acute compartment syndrome – protocol for a prospective multinational, multicentre study involving patients with tibial fractures
Authors: Nilsson Abraham , Ibounig Thomas , Lyth Johan , Alkner Björn , von Walden Ferdinand , Fornander Lotta , Rämö Lasse , Schmidt Andrew , Schilcher Jörg 
Published: May 2022

IntroductionThe ischaemic pain of acute compartment syndrome (ACS) can be difficult to discriminate from the pain linked to an associated fracture. Lacking objective measures, the decision to perform fasciotomy is based on clinical findings and performed at a low level of suspicion. Biomarkers of muscle cell damage may help to identify and monitor patients at risk, similar to current routines for patients with acute myocardial infarction. This study will test the hypothesis that biomarkers of muscle cell damage can predict ACS in patients with tibial fractures.Methods and analysisPatients aged 15–65 years who have suffered a tibial fracture will be included. Plasma (P)-myoglobin and P-creatine phosphokinase will be analysed at 6-hourly intervals after admission to the hospital (for 48 hours) and—if applicable—after surgical fixation or fasciotomy (for 24 hours). In addition, if ACS is suspected at any other point in time, blood samples will be collected at 6-hourly intervals. An independent expert panel will assess the study data and will classify those patients who had undergone fasciotomy into those with ACS and those without ACS. All primary comparisons will be performed between fracture patients with and without ACS. The area under the receiver operator characteristics curves will be used to identify the success of the biomarkers in discriminating between fracture patients who develop ACS and those who do not. Logistic regression analyses will be used to assess the discriminative abilities of the biomarkers to predict ACS corrected for prespecified covariates.Ethics and disseminationThe study has been approved by the Regional Ethical Review Boards in Linköping (2017/514-31) and Helsinki/Uusimaa (HUS/2500/2000). The BioFACTS study will be reported in accordance with the Strengthening the Reporting of Observational Studies in Epidemiology recommendations.Trial registration numberNCT04674592.
Time to detection of anaemia and its predictors among women of reproductive-age living with HIV/AIDS initiating ART at public hospitals, Southwest Ethiopia: a multicentre retrospective follow-up study
Authors: Belay Alemayehu Sayih , Genie Yalemtsehay Dagnaw , Kebede Belete Fenta , Kassie Aychew , Molla Abebaw 
Published: May 2022

ObjectiveTo assess the time to development of anaemia and its predictors among women of reproductive-age receiving antiretroviral therapy (ART) in public hospitals, Southwest Ethiopia.DesignHospital-based retrospective follow-up studySettingMizan-Tepi University Teaching Hospital, and Gebretsadik Shawo General Hospital Southwest Ethiopia.ParticipantsA total of 389 records of women living with HIV/AIDS at public hospitals were reviewed using a systematic sampling method. The data were entered using Epi-Data Manager V.4.2 and exported to STATA V.14 for data analysis. A Cox-regression model was used and variables with a p-value of <0.05% and 95% confidence level in multivariable analysis were declared as statistically significant predictors for anaemia.Primary outcomeTime to development of anaemia and its predictors among women of reproductive-age on ART in public hospitals.ResultsOf 370 records of women of reproductive-age, 203 (54.86%, 95% CI (49.77% to 59.96%)) were anaemic with an incidence rate of 12.07 per 100 person months of observation, and the overall median survival time of 60 months. The total of 2.97%, and 80.26% of women were developed anaemia within the first 6 months and the last 6 months period of follow-up, respectively. Moreover, non-employed women, women with advanced WHO stage, women with baseline opportunistic infections and women who were on ART for long-duration were significantly associated with anaemia among women living with HIV/AIDS.ConclusionIn this study, the incidence rate of anaemia was significantly high. The development of anaemia among women on ART was also increased with increased follow-up time. The risk of anaemia is increased in women living with HIV/AIDS due to advanced baseline WHO staging, presence of OIs at baseline, an increased duration on ART and low occupational status. Therefore, early identification and treatment of opportunistic infections and other coinfections are required to decrease the incidence of anaemia among women living with HIV/AIDS.