bluuebunny/crossref_metadata_2025_split huggingface dataset:
Direct and mediated effects of treatment context on low back pain outcome: a prospective cohort study
Authors: Bishop Felicity , Al-Abbadey Miznah , Roberts Lisa , MacPherson Hugh , Stuart Beth , Carnes Dawn , Fawkes Carol , Yardley Lucy , Bradbury Katherine 
Published: May 2021

ObjectivesContextual components of treatment previously associated with patient outcomes include the environment, therapeutic relationship and expectancies. Questions remain about which components are most important, how they influence outcomes and comparative effects across treatment approaches. We aimed to identify significant and strong contextual predictors of patient outcomes, test for psychological mediators and compare effects across three treatment approaches.DesignProspective cohort study with patient-reported and practitioner-reported questionnaire data (online or paper) collected at first consultation, 2 weeks and 3 months.SettingPhysiotherapy, osteopathy and acupuncture clinics throughout the UK.Participants166 practitioners (65 physiotherapists, 46 osteopaths, 55 acupuncturists) were recruited via their professional organisations. Practitioners recruited 960 adult patients seeking treatment for low back pain (LBP).Primary and secondary outcomesThe primary outcome was back-related disability. Secondary outcomes were pain and well-being. Contextual components measured were: therapeutic alliance; patient satisfaction with appointment systems, access, facilities; patients’ treatment beliefs including outcome expectancies; practitioners’ attitudes to LBP and practitioners’ patient-specific outcome expectancies. The hypothesised mediators measured were: patient self-efficacy for pain management; patient perceptions of LBP and psychosocial distress.ResultsAfter controlling for baseline and potential confounders, statistically significant predictors of reduced back-related disability were: all three dimensions of stronger therapeutic alliance (goal, task and bond); higher patient satisfaction with appointment systems; reduced patient-perceived treatment credibility and increased practitioner-rated outcome expectancies. Therapeutic alliance over task (ηp2=0.10, 95% CI 0.07 to 0.14) and practitioner-rated outcome expectancies (ηp2=0.08, 95% CI 0.05 to 0.11) demonstrated the largest effect sizes. Patients’ self-efficacy, LBP perceptions and psychosocial distress partially mediated these relationships. There were no interactions with treatment approach.ConclusionsEnhancing contextual components in musculoskeletal healthcare could improve patient outcomes. Interventions should focus on helping practitioners and patients forge effective therapeutic alliances with strong affective bonds and agreement on treatment goals and how to achieve them.
COVID-19 health and social care access for autistic people: European policy review
Authors: Oakley Bethany , Tillmann Julian , Ruigrok Amber , Baranger Aurélie , Takow Christian , Charman Tony , Jones Emily , Cusack James , Doherty Mary , Violland Pierre , Wroczyńska Agnieszka , Simonoff Emily , Buitelaar Jan K , Gallagher Louise , Murphy Declan G M 
Published: May 2021

BackgroundThe global COVID-19 pandemic has had an unprecedented impact on European health and social care systems, with demands on testing, hospital and intensive care capacity exceeding available resources in many regions. This has led to concerns that some vulnerable groups, including autistic people, may be excluded from services.MethodsWe reviewed policies from 15 European member states, published in March–July 2020, pertaining to (1) access to COVID-19 tests; (2) provisions for treatment, hospitalisation and intensive care units (ICUs); and (3) changes to standard health and social care. In parallel, we analysed survey data on the lived experiences of 1301 autistic people and caregivers.ResultsAutistic people experienced significant barriers when accessing COVID-19 services. First, despite being at elevated risk of severe illness due to co-occurring health conditions, there was a lack of accessibility of COVID-19 testing. Second, many COVID-19 outpatient and inpatient treatment services were reported to be inaccessible, predominantly resulting from individual differences in communication needs. Third, ICU triage protocols in many European countries (directly or indirectly) resulted in discriminatory exclusion from lifesaving treatments. Finally, interruptions to standard health and social care left over 70% of autistic people without everyday support.ConclusionsThe COVID-19 pandemic has further exacerbated existing healthcare inequalities for autistic people, probably contributing to disproportionate increases in morbidity and mortality, mental health and behavioural difficulties, and reduced quality of life. An urgent need exists for policies and guidelines on accessibility of COVID-19 services to be updated to prevent the widespread exclusion of autistic people from services, which represents a violation of international human rights law.
Injury Prevention and long-term Outcomes following Trauma—the IPOT project: a protocol for prospective nationwide registry-based studies in Norway
Authors: Stenehjem Jo Steinson , Røise Olav , Nordseth Trond , Clausen Thomas , Natvig Bård , O Skurtveit Svetlana , Eken Torsten , Kristiansen Thomas , Gran Jon Michael , Rosseland Leiv Arne 
Published: May 2021

IntroductionTraumatic injuries constitute a major cause of mortality and morbidity. Still, the public health burden of trauma in Norway has not been characterised using nationwide registry data. More knowledge is warranted on trauma risk factors and the long-term outcomes following trauma. The Injury Prevention and long-term Outcomes following Trauma project will establish a comprehensive research database. The Norwegian National Trauma Registry (NTR) will be merged with several data sources to pursue the following three main research topics: (1) the public health burden of trauma to society (eg, excess mortality and disability-adjusted life-years (DALYs)), (2) trauma aetiology (eg, socioeconomic factors, comorbidity and drug use) and (3) trauma survivorship (eg, survival, drug use, use of welfare benefits, work ability, education and income).Methods and analysisThe NTR (n≈27 000 trauma patients, 2015–2018) will be coupled with the data from Statistics Norway, the Norwegian Patient Registry, the Cause of Death Registry, the Registry of Primary Health Care and the Norwegian Prescription Database. To quantify the public health burden, DALYs will be calculated from the NTR. To address trauma aetiology, we will conduct nested case–control studies with 10 trauma-free controls (drawn from the National Population Register) matched to each trauma case on birth year, sex and index date. Conditional logistic regression models will be used to estimate trauma risk according to relevant exposures. To address trauma survivorship, we will use cohort and matched cohort designs and time-to-event analyses to examine various post-trauma outcomes.Ethics and disseminationThe project is approved by the Regional Committee for Medical Research Ethics. The project’s data protection impact assessment is approved by the data protection officer. Results will be disseminated to patients, in peer-reviewed journals, at conferences and in the media.
Prospective bladder cancer infrastructure for experimental and observational research on bladder cancer: study protocol for the ‘trials within cohorts’ study ProBCI
Authors: Richters Anke , Meijer Richard P , Mehra Niven , Boormans Joost L , van der Heijden Antoine G , van der Heijden Michiel S , Kiemeney Lambertus A , Aben Katja K 
Published: May 2021

IntroductionA better understanding of the molecular profile of bladder tumours, the identification of novel therapeutic targets, and introduction of new drugs and has renewed research interest in the field of bladder cancer. We describe the design and setup of a Dutch Prospective Bladder Cancer Infrastructure (ProBCI) as a means to stimulate and accelerate clinically meaningful experimental and observational research.Methods and analysisProBCI entails an open cohort of patients with bladder cancer in which the trials within cohorts (TwiCs) design can be embedded. Physicians in participating hospitals prospectively recruit invasive (≥T1) patients with bladder cancer on primary diagnosis for inclusion into the study. Extensive clinical data are collected and updated every 4 months, along with patient-reported outcomes and biomaterials. Informed consent includes participation in TwiCs studies and renewed contact for future studies. Consent for participation in questionnaires and molecular analyses that may yield incidental findings is optional.Ethics and disseminationThe Dutch ProBCI is a unique effort to construct a nation-wide cohort of patients with bladder cancer including clinical data, patient-reported outcomes and biomaterial, to facilitate observational and experimental research. Data and materials are available for other research groups on request throughwww.probci.nl. Ethics approval was obtained from METC Utrecht (reference: NL70207.041.19).Trial registration numberNCT04503577.
Implementation of different HIV self-testing models with implications for HIV testing services during the COVID-19 pandemic: study protocol for secondary data analysis of the STAR Initiative in South Africa
Authors: Majam Mohammed , Conserve Donaldson F , Zishiri Vincent , Haile Zelalem T , Tembo Angela , Phiri Jane , Hatzold Karin , Johnson Cheryl C , Venter Francois 
Published: May 2021

IntroductionHIV self-testing (HIVST) presents a convenient, private approach that removes barriers to providing HIV testing services. The Self-Testing Africa (STAR) Initiative aims to scale up HIVST among priority and undertested populations. HIVST has the potential to help maintain testing services during the social distancing restrictions implemented to prevent the spread of COVID-19. This project evaluates linkage to confirmatory testing and treatment for HIV-positive clients for the STAR South Africa site.Methods and analysisThis secondary data analysis protocol aims to evaluate different HIVST distribution models from a prospective study implemented during November 2017 and December 2020 by Ezintsha, a subdivision of Wits Reproductive Health and HIV Institute. Routinely collected distribution and self-reported HIVST outcomes data will be deidentified and analysed. The main outcomes of interest are linkage to care and treatment among HIVST users who report a reactive HIVST result. Additionally, we plan to determine sociodemographic factors associated with linkage to care and treatment among HIVST users. Descriptive statistics will be used to describe the variables of interest, and modified Poisson regression with robust variance estimation will be performed to identify factors associated with linkage to care and treatment among HIVST users who report a reactive HIVST result. Risk ratios and 95% CIs for the risk ratios will be reported.Ethics and disseminationThe study protocol has been approved by the University of Witwatersrand Human Research Ethics Committee. The dissemination plan for the study findings will include presentations to local and international health authorities, international conferences and publications in open access journals.
Exploration of the impact of the COVID-19 pandemic on people with dementia and carers from black and minority ethnic groups
Authors: West Emily , Nair Pushpa , Barrado-Martin Yolanda , Walters Kate R , Kupeli Nuriye , Sampson Elizabeth L , Davies Nathan 
Published: May 2021

IntroductionDespite community efforts to support and enable older and vulnerable people during the COVID-19 pandemic, many people with dementia and their family carers are still finding it difficult to adjust their daily living in light of the disruption that the pandemic has caused. There may be needs specific to black, Asian and minority ethnic (BAME) populations in these circumstances that remain thus far unexplored.ObjectiveThe aim of the study was to explore the effects of the COVID-19 pandemic on people living with dementia and their family carers of BAME backgrounds, in relation to their experiences of community dementia care and the impact on their daily lives.Design15 participants (persons with dementia and carers) were recruited for semistructured qualitative interviews. Respondents were of South Asian and Afro-Caribbean backgrounds. We used thematic analysis to analyse our data from a constructivist perspective, which emphasises the importance of multiple perspectives, contexts and values.ResultsThere were a number of ways that the COVID-19 pandemic has impacted BAME persons with dementia and carers with regard to their experiences of dementia community care and the impact on their everyday lives. In particular we identified eight key themes, with subthemes: fear and anxiety, food and eating (encompassing food shopping and eating patterns), isolation and identity, community and social relationships, adapting to COVID-19, social isolation and support structures, and medical interactions. Fear and anxiety formed an overarching theme that encompassed all others.DiscussionThis paper covers unique and underexplored topics in a COVID-19-vulnerable group. There is limited work with these groups in the UK and this is especially true in COVID-19. The results showed that such impacts were far-reaching and affected not only day-to-day concerns, but also care decisions with long-ranging consequences, and existential interests around fear, faith, death and identity.
Single-centre retrospective analysis of the best timing for the QTc interval length assessment in neonates
Authors: Marcellino Alessia , Luchetti Jessica , Raponi Massimo , Falsaperla Raffaele , Pirone Carmelo , Fares Maria Katia , Ventriglia Flavia , Lubrano Riccardo 
Published: May 2021

ObjectiveTo evaluate the best timing for ECG screening in order to diagnose long QT syndrome and lower, at the same time, the false positives.DesignWe retrospectively evaluated the corrected QT (QTc) interval in the clinical reports of the ECG screening performed, as per internal protocol.SettingAn outpatient setting in our Unit of Neonatology and Pediatrics, Santa Maria Goretti Hospital in Latina, Italy.PatientsWe enrolled 3467 healthy neonates between 14 and 30 days of life.InterventionsThe newborns with abnormal QTc interval were invited to subsequent revaluation every 21 days, until normalisation or necessity to refer to a tertiary paediatric cardiology centre.Main outcome measuresDifference in QTc according to patients’ characteristics and number of false positives at second ECG evaluation.ResultsAt first evaluation, 249 (7.2%) newborns had prolonged QTc. We did not find any significant difference in the QTc length according to gestational age (p=0.40) and birth weight (p=0.81). As expected, girls had longer QTc than boys (p=0.01). Only 11 out of 240 (4.6%) and 1 out of 238 infants (0.4%) had persistently prolonged QTc at second and third ECG evaluation, respectively. The QTc decreased significantly at second (p<0.0001) and third evaluation (p=0.0035).ConclusionsIn our study, we showed that a single screening performed in healthy infants after 60 days of life could reduce the risk of false positives, with a beneficial impact on public national health system and the chance to start early therapy in case of long QT syndrome.
Daily life participation in childhood chronic disease: a qualitative study on the child’s and parent’s perspective
Authors: Nap-van der Vlist Merel M , Berkelbach van der Sprenkel Emma E , Nijhof Linde N , Grootenhuis Martha A , van der Ent Cornelis K , Swart Joost F , van Royen-Kerkhof Annet , van Grotel Martine , van de Putte Elise M , Nijhof Sanne L , Kars Marijke C 
Published: May 2021

ObjectiveTo understand how a child with a stable chronic disease and his/her parents shape his/her daily life participation, we assessed: (1) the parents’ goals regarding the child’s daily life participation, (2) parental strategies regarding the child’s participation and () how children and their parents interrelate when their goals regarding participation are not aligned.MethodsThis was a qualitative study design using a general inductive approach. Families of children 8–19 years with a stable chronic disease (cystic fibrosis, autoimmune disease or postcancer treatment) were recruited from the PROactive study. Simultaneous in-depth interviews were conducted separately with the child and parent(s). Analyses included constant comparison, coding and categorisation.ResultsThirty-one of the 57 invited families (54%) participated. We found that parents predominantly focus on securing their child’s well-being, using participation as a means to achieve well-being. Moreover, parents used different strategies to either support participation consistent with the child’s healthy peers or support participation with a focus on physical well-being. The degree of friction between parents and their child was based on the level of agreement on who takes the lead regarding the child’s participation.ConclusionsInterestingly, parents described participation as primarily a means to achieve the child’s well-being, whereas children described participation as more of a goal in itself. Understanding the child’s and parent’s perspective can help children, parents and healthcare professionals start a dialogue on participation and establish mutual goals. This may help parents and children find ways to interrelate while allowing the child to develop his/her autonomy.
How does the effectiveness of strategies to improve healthcare provider practices in low-income and middle-income countries change after implementation? Secondary analysis of a systematic review
Authors: Arsenault Catherine , Rowe Samantha Y , Ross-Degnan Dennis , Peters David H , Roder-DeWan Sanam , Kruk Margaret E , Rowe Alexander K 
Published: May 2021

BackgroundA recent systematic review evaluated the effectiveness of strategies to improve healthcare provider (HCP) performance in low-income and middle-income countries. The review identified strategies with varying effects, including in-service training, supervision and group problem-solving. However, whether their effectiveness changed over time remained unclear. In particular, understanding whether effects decay over time is crucial to improve sustainability.MethodsWe conducted a secondary analysis of data from the aforementioned review to explore associations between time and effectiveness. We calculated effect sizes (defined as percentage-point (%-point) changes) for HCP practice outcomes (eg, percentage of patients correctly treated) at each follow-up time point after the strategy was implemented. We estimated the association between time and effectiveness using random-intercept linear regression models with time-specific effect sizes clustered within studies and adjusted for baseline performance.ResultsThe primary analysis included 37 studies, and a sensitivity analysis included 77 additional studies. For training, every additional month of follow-up was associated with a 0.19 %-point decrease in effectiveness (95% CI: –0.36 to –0.03). For training combined with supervision, every additional month was associated with a 0.40 %-point decrease in effectiveness (95% CI: –0.68 to –0.12). Time trend results for supervision were inconclusive. For group problem-solving alone, time was positively associated with effectiveness, with a 0.50 %-point increase in effect per month (95% CI: 0.37 to 0.64). Group problem-solving combined with training was associated with large improvements, and its effect was not associated with time.ConclusionsTime trends in the effectiveness of different strategies to improve HCP practices vary among strategies. Programmes relying solely on in-service training might need periodical refresher training or, better still, consider combining training with group problem-solving. Although more high-quality research is needed, these results, which are important for decision-makers as they choose which strategies to use, underscore the utility of studies with multiple post-implementation measurements so sustainability of the impact on HCP practices can be assessed.
Life-limiting fetal conditions and pregnancy continuation: parental decision-making processes
Authors: Denney-Koelsch Erin , Cote-Arsenault Denise 
Published: May 2021

ObjectivesWhen parents are facing a life-limiting fetal condition (LLFC), decision making about prenatal and neonatal care is very stressful. To participate in successful shared decision making, interdisciplinary care teams need to understand factors that parents consider and the process by which they make decisions about care of their baby.MethodsThis study reports on findings about parental decision making from a larger longitudinal, naturalistic study of parents’ experiences of continuing pregnancy with an LLFC. Mothers and fathers over 18 were interviewed in person, on phone or via video, twice during pregnancy and twice after birth and death. Transcripts were professionally transcribed and verified. Data were analysed with iterative coding and theme identification, using within-case and cross-case comparison.ResultsThirty parents (16 mothers, 13 fathers, 1 lesbian partner) from multiple US states and a range of racial/ethnic backgrounds were interviewed. Parents’ experience with decision making was difficult, stressful and time-sensitive. They described a three-phase process: (1) identifying the decision to be made, (2) conducting a risk–benefit analysis to weigh objective medical information and subjective factors (values and spirituality, impact on self, partner, baby and the other children) and (3) making a decision. Parents considered diagnostic and prognostic certainty, likelihood of a good outcome and avoidance of suffering and regrets.ConclusionFor shared-decision making, healthcare providers must discuss objective medical information as well as recognise parents’ subjective values and priorities. This study expands on the literature on parental decision making around the numerous types of decisions after LLFC, informing obstetrics, neonatology and palliative care.