bluuebunny/crossref_metadata_2025_split huggingface dataset:
Participant characteristics and reasons for non-consent to health information linkage for research: experiences from the ATHENA COVID-19 study
Authors: Greaves Kim , King Amanda , Bourne Zoltan , Welsh Jennifer , Morgan Mark , Tolosa M. Ximena , Bonner Carissa , Stanton Tony , Fryer Michael , Korda Rosemary 
Published: January 2024

Abstract
Background
The linkage of primary care, hospital and other health registry data is a global goal, and a consent-based approach is often used. Understanding the attitudes of why participants take part is important, yet little is known about reasons for non-participation. The ATHENA COVID-19 feasibility study investigated: 1) health outcomes of people diagnosed with COVID-19 in Queensland, Australia through primary care health data linkage using consent, and 2) created a cohort of patients willing to be re-contacted in future to participate in clinical trials. This report describes the characteristics of participants declining to participate and reasons for non-consent.

Methods
Patients diagnosed with COVID-19 from January 1st, 2020, to December 31st, 2020, were invited to consent to having their primary healthcare data extracted from their GP into a Queensland Health database and linked to other data sets for ethically approved research. Patients were also asked to consent to future recontact for participation in clinical trials. Outcome measures were proportions of patients consenting to data extraction, permission to recontact, and reason for consent decline.

Results
Nine hundred and ninety-five participants were approached and 842(85%) reached a consent decision. 581(69%), 615(73%) and 629(75%) consented to data extraction, recontact, or both, respectively. Mean (range) age of consenters and non-consenters were 50.6(22-77) and 46.1(22-77) years, respectively. Adjusting for age, gender and remoteness, older participants were more likely to consent than younger (aOR 1.02, 95%CI 1.01 to 1.03). The least socio-economically disadvantaged were more likely to consent than the most disadvantaged (aOR 2.20, 95% 1.33 to 3.64). There was no difference in consent proportions regarding gender or living in more remote regions. The main reasons for non-consent were ‘not interested in research’ (37%), ‘concerns about privacy’ (15%), ‘not registered with a GP’ (8%) and ‘too busy/no time’ (7%). ‘No reason’ was given in 20%.

Conclusion
Younger participants and the more socio-economically deprived are more likely to non-consent to primary care data linkage. Lack of patient interest in research, time required to participate and privacy concerns, were the most common reasons cited for non-consent. Future health care data linkage studies addressing these issues may prove helpful.
Temporal topic model for clinical pathway mining from electronic medical records
Authors: Li Wei , Min Xin , Ye Panpan , Xie Weidong , Zhao Dazhe 
Published: January 2024

Abstract
Background
In recent years, the discovery of clinical pathways (CPs) from electronic medical records (EMRs) data has received increasing attention because it can directly support clinical doctors with explicit treatment knowledge, which is one of the key challenges in the development of intelligent healthcare services. However, the existing work has focused on topic probabilistic models, which usually produce treatment patterns with similar treatment activities, and such discovered treatment patterns do not take into account the temporal process of patient treatment which does not meet the needs of practical medical applications.

Methods
Based on the assumption that CPs can be derived from the data of EMRs which usually record the treatment process of patients, this paper proposes a new CPs mining method from EMRs, an extended form of the traditional topic model - the temporal topic model (TTM). The method can capture the treatment topics and the corresponding treatment timestamps for each treatment day.

Results
Experimental research conducted on a real-world dataset of patients’ hospitalization processes, and the achieved results demonstrate the applicability and usefulness of the proposed methodology for CPs mining. Compared to existing benchmarks, our model shows significant improvement and robustness.

Conclusion
Our TTM provides a more competitive way to mine potential CPs considering the temporal features of the EMR data, providing a very prospective tool to support clinical diagnostic decisions.
Only the anxious ones? Identifying characteristics of symptom checker app users: a cross-sectional survey
Authors: Wetzel Anna-Jasmin , Klemmt Malte , Müller Regina , Rieger Monika A. , Joos Stefanie , Koch Roland 
Published: January 2024

AbstractBackgroundSymptom checker applications (SCAs) may help laypeople classify their symptoms and receive recommendations on medically appropriate actions. Further research is necessary to estimate the influence of user characteristics, attitudes and (e)health-related competencies.ObjectiveThe objective of this study is to identify meaningful predictors for SCA use considering user characteristics.MethodsAn explorative cross-sectional survey was conducted to investigate German citizens’ demographics, eHealth literacy, hypochondria, self-efficacy, and affinity for technology using German language–validated questionnaires. A total of 869 participants were eligible for inclusion in the study. Asn = 67 SCA users were assessed and matched 1:1 with non-users, a sample ofn = 134 participants were assessed in the main analysis. A four-step analysis was conducted involving explorative predictor selection, model comparisons, and parameter estimates for selected predictors, including sensitivity and post hoc analyses.ResultsHypochondria and self-efficacy were identified as meaningful predictors of SCA use. Hypochondria showed a consistent and significant effect across all analyses OR: 1.24–1.26 (95% CI: 1.1–1.4). Self-efficacy OR: 0.64–0.93 (95% CI: 0.3–1.4) showed inconsistent and nonsignificant results, leaving its role in SCA use unclear. Over half of the SCA users in our sample met the classification for hypochondria (cut-off on the WI of 5).ConclusionsHypochondria has emerged as a significant predictor of SCA use with a consistently stable effect, yet according to the literature, individuals with this trait may be less likely to benefit from SCA despite their greater likelihood of using it. These users could be further unsettled by risk-averse triage and unlikely but serious diagnosis suggestions.Trial RegistrationThe study was registered in the German Clinical Trials Register (DRKS) DRKS00022465, DERR1-https://doi.org/10.2196/34026.
Rehabilitation in primary care for an ageing population: a secondary analysis from a scoping review of rehabilitation delivery models
Authors: Seijas Vanessa , Maritz Roxanne , Mishra Satish , Bernard Renaldo M , Fernandes Patricia , Lorenz Viola , Machado Barbara , Posada Ana María , Lugo-Agudelo Luz Helena , Bickenbach Jerome , Sabariego Carla 
Published: January 2024

Abstract
Background
The world population is ageing rapidly. Rehabilitation is one of the most effective health strategies for improving the health and functioning of older persons. An understanding of the current provision of rehabilitation services in primary care (PC) is needed to optimise access to rehabilitation for an ageing population. The objectives of this scoping review are a) to describe how rehabilitation services are currently offered in PC to older persons, and b) to explore age-related differences in the type of rehabilitation services provided.

Methods
We conducted a secondary analysis of a scoping review examining rehabilitation models for older persons, with a focus on PC. Medline and Embase (2015–2022) were searched to identify studies published in English on rehabilitation services for people aged 50 + . Two authors independently screened records and extracted data using the World Health Organization (WHO)’s operational framework, the Primary Health Care Systems (PRIMASYS) approach and the WHO paper on rehabilitation in PC. Data synthesis included quantitative and qualitative analysis.

Results
We synthesised data from 96 studies, 88.6% conducted in high-income countries (HICs), with 31,956 participants and identified five models for delivering rehabilitation to older persons in PC: community, home, telerehabilitation, outpatient and eldercare. Nurses, physiotherapists, and occupational therapists were the most common providers, with task-shifting reported in 15.6% of studies. The most common interventions were assessment of functioning, rehabilitation coordination, therapeutic exercise, psychological interventions, and self-management education. Environmental adaptations and assistive technology were rarely reported.

Conclusions
We described how rehabilitation services are currently provided in PC and explored age-related differences in the type of rehabilitation services received. PC can play a key role in assessing functioning and coordinating the rehabilitation process and is also well-placed to deliver rehabilitation interventions. By understanding models of rehabilitation service delivery in PC, stakeholders can work towards developing more comprehensive and accessible services that meet the diverse needs of an ageing population. Our findings, which highlight the role of rehabilitation in healthy ageing, are a valuable resource for informing policy, practice and future research in the context of the United Nations Decade of Healthy Ageing, the Rehab2030 initiative and the recently adopted WHA resolution on strengthening rehabilitation in health systems, but the conclusions can only be applied to HICs and more studies are needed that reflect the reality in low- and middle-income countries.
Healthcare provider perspectives on integrating a comprehensive spine care model in an academic health system: a cross-sectional survey
Authors: Burton Wren , Salsbury Stacie A. , Goertz Christine M. 
Published: January 2024

Abstract
Background
Healthcare systems (HCS) are challenged in adopting and sustaining comprehensive approaches to spine care that require coordination and collaboration among multiple service units. The integration of clinicians who provide first line, evidence-based, non-pharmacological therapies further complicates adoption of these care pathways. This cross-sectional study explored clinician perceptions about the integration of guideline-concordant care and optimal spine care workforce requirements within an academic HCS.

Methods
Spine care clinicians from Duke University Health System (DUHS) completed a 26-item online survey via Qualtrics on barriers and facilitators to delivering guideline concordant care for low back pain patients. Data analysis included descriptive statistics and qualitative content analysis.

Results
A total of 27 clinicians (57% response) responded to one or more items on the questionnaire, with 23 completing the majority of questions. Respondents reported that guidelines were implementable within DUHS, but no spine care guideline was used consistently across provider types. Guideline access and integration with electronic records were barriers to use. Respondents (81%) agreed most patients would benefit from non-pharmacological therapies such as physical therapy or chiropractic before receiving specialty referrals. Providers perceived spine patients expected diagnostic imaging (81%) and medication (70%) over non-pharmacological therapies. Providers agreed that receiving imaging (63%) and opioids (59%) benchmarks could be helpful but might not change their ordering practice, even if nudged by best practice advisories. Participants felt that an optimal spine care workforce would require more chiropractors and primary care providers and fewer neurosurgeons and orthopedists. In qualitative responses, respondents emphasized the following barriers to guideline-concordant care implementation: patient expectations, provider confidence with referral pathways, timely access, and the appropriate role of spine surgery.

Conclusions
Spine care clinicians had positive support for current tenets of guideline-concordant spine care for low back pain patients. However, significant barriers to implementation were identified, including mixed opinions about integration of non-pharmacological therapies, referral pathways, and best practices for imaging and opioid use.
Exploring effective implementation pathways to become an excellent chief financial officer in public hospital: a qualitative comparative analysis (QCA) from China
Authors: Wang Hongzhi , Li Junjun , Xiang Xin 
Published: January 2024

Abstract
Background
Hospital chief financial officer (CFO) contributes to improving health system performance. However, how to become an excellent hospital CFO has rarely been considered from a holistic perspective. This paper aims to identify competencies required by hospital CFO to fulfil the position’s responsibilities and explore effective implementation pathways to generate high performance and improve healthcare service.

Methods
We conducted 61 semi-structured interviews with individuals in key leadership positions in China’s hospitals and researchers focusing on healthcare system management to identify core competencies necessary for hospital CFO. Interviews were analysed through a multi-stage review process and modified via expert vetting using a national panel of 23 professors. Subsequently, interviews were conducted with 32 hospital CFOs from 14 provinces throughout September 2021 to May 2022. We scored the performance of 32 hospital CFOs in various aspects of competency and used the fuzzy-set qualitative comparative analysis to explore the competency configurations of excellent CFOs.

Results
We identify seven core competencies necessary for a hospital CFO to fulfil management practices, including personal morality, resource management, strategy management, learning ability, negotiating skill, leadership skill, and financial management. The findings indicate that a single competency factor is not a necessary condition to become an excellent hospital CFO. The results of qualitative comparative analysis then make it possible to propose four configurational paths, namely, supportive, interpersonal, all-around development, and technical, to become an excellent hospital CFO and achieve effective managerial performance.

Conclusions
The responsibilities of hospital CFOs are complex and varied, hence, a better understanding of competencies required by CFO is essential to implement their responsibilities effectively. The identification in this study of the four effective implementation pathways to becoming an excellent hospital CFO enriches the literature on hospital management and provides implications for China’s hospitals and their CFOs.
Geospatial analysis of Plasmodium falciparum serological indicators: school versus community sampling in a low-transmission malaria setting
Authors: Jaramillo-Underwood Alicia , Herman Camelia , Jean Samuel E. , Nace Doug , Elder E. Scott , Robinson Keri , Knipes Alaine , Worrell Caitlin M. , Fox LeAnne M. , Desir Luccene , Fayette Carl , Javel Alain , Monestime Franck , Mace Kimberly E. , Udhayakumar Venkatachalam , Won Kimberly Y. , Chang Michelle A. , Lemoine Jean F. , Rogier Eric 
Published: January 2024

Abstract
Background
Due to low numbers of active infections and persons presenting to health facilities for malaria treatment, case-based surveillance is inefficient for understanding the remaining disease burden in low malaria transmission settings. Serological data through the detection of IgG antibodies from previous malaria parasite exposure can fill this gap by providing a nuanced picture of where sustained transmission remains. Study enrollment at sites of gathering provides a potential approach to spatially estimate malaria exposure and could preclude the need for more intensive community-based sampling.

Methods
This study compared spatial estimates of malaria exposure from cross-sectional school- and community-based sampling in Haiti. A total of 52,405 blood samples were collected from 2012 to 2017. Multiplex bead assays (MBAs) tested IgG against P. falciparum liver stage antigen-1 (LSA-1), apical membrane antigen 1 (AMA1), and merozoite surface protein 1 (MSP1). Predictive geospatial models of seropositivity adjusted for environmental covariates, and results were compared using correlations by coordinate points and communes across Haiti.

Results
Consistent directional associations were observed between seroprevalence and environmental covariates for elevation (negative), air temperature (negative), and travel time to urban centers (positive). Spearman’s rank correlation for predicted seroprevalence at coordinate points was lowest for LSA-1 (ρ = 0.10, 95% CI: 0.09–0.11), but improved for AMA1 (ρ = 0.36, 95% CI: 0.35–0.37) and MSP1 (ρ = 0.48, 95% CI: 0.47–0.49).

Conclusions
In settings approaching P. falciparum elimination, case-based prevalence data does not provide a resolution of ongoing malaria transmission in the population. Immunogenic antigen targets (e.g., AMA1, MSP1) that give higher population rates of seropositivity provide moderate correlation to gold standard community sampling designs and are a feasible approach to discern foci of residual P. falciparum transmission in an area.
The quality of care delivered to residents in long-term care in Australia: an indicator-based review of resident records (CareTrack Aged study)
Authors: Hibbert Peter D. , Molloy Charlotte J. , Cameron Ian D. , Gray Leonard C. , Reed Richard L. , Wiles Louise K. , Westbrook Johanna , Arnolda Gaston , Bilton Rebecca , Ash Ruby , Georgiou Andrew , Kitson Alison , Hughes Clifford F. , Gordon Susan J. , Mitchell Rebecca J. , Rapport Frances , Estabrooks Carole , Alexander Gregory L. , Vincent Charles , Edwards Adrian , Carson-Stevens Andrew , Wagner Cordula , McCormack Brendan , Braithwaite Jeffrey 
Published: January 2024

Abstract
Background
This study estimated the prevalence of evidence-based care received by a population-based sample of Australian residents in long-term care (LTC) aged ≥ 65 years in 2021, measured by adherence to clinical practice guideline (CPG) recommendations.

Methods
Sixteen conditions/processes of care amendable to estimating evidence-based care at a population level were identified from prevalence data and CPGs. Candidate recommendations (n = 5609) were extracted from 139 CPGs which were converted to indicators. National experts in each condition rated the indicators via the RAND-UCLA Delphi process. For the 16 conditions, 236 evidence-based care indicators were ratified.
A multi-stage sampling of LTC facilities and residents was undertaken. Trained aged-care nurses then undertook manual structured record reviews of care delivered between 1 March and 31 May 2021 (our record review period) to assess adherence with the indicators.

Results
Care received by 294 residents with 27,585 care encounters in 25 LTC facilities was evaluated. Residents received care for one to thirteen separate clinical conditions/processes of care (median = 10, mean = 9.7). Adherence to evidence-based care indicators was estimated at 53.2% (95% CI: 48.6, 57.7) ranging from a high of 81.3% (95% CI: 75.6, 86.3) for Bladder and Bowel to a low of 12.2% (95% CI: 1.6, 36.8) for Depression. Six conditions (skin integrity, end-of-life care, infection, sleep, medication, and depression) had less than 50% adherence with indicators.

Conclusions
This is the first study of adherence to evidence-based care for people in LTC using multiple conditions and a standardised method. Vulnerable older people are not receiving evidence-based care for many physical problems, nor care to support their mental health nor for end-of-life care. The six conditions in which adherence with indicators was less than 50% could be the focus of improvement efforts.
MPZL2—a common autosomal recessive deafness gene related to moderate sensorineural hearing loss in the Chinese population
Authors: Zhang Lang , Yang Jin-Yuan , Wang Qiu-Quan , Gao Xue , Wang Guo-Jian , Han Ming-Yu , Kang Dong-Yang , Han Dong-Yi , Huang Sha-Sha , Yuan Yong-Yi 
Published: January 2024

Abstract
Background
Mutations in MPZL2, the characteristic genetic etiology of autosomal recessive deafness loci 111 (DFNB111), cause non-syndromic and moderate sensorineural hearing loss.

Methods
In this study, we analyzed the phenotype and genotype of eight pedigrees consisting of 10 hearing loss patients with bi-allelic pathogenic or likely pathogenic variants in MPZL2. These patients were identified from a 3272 Chinese patient cohort who underwent genetic testing.

Results
Apart from symmetrical and moderate sensorineural hearing loss, the MPZL2-related phenotype was characterized by progressive hearing loss with variation in the onset age (congenital defect to onset at the young adult stage). We determined that in the Chinese population, the genetic load of MPZL2 defects was 0.24% (8/3272) in patients diagnosed with hearing loss and 7.02% (8/114) in patients diagnosed with hereditary moderate sensorineural hearing loss caused by STRC, OTOA, OTOG, OTOGL, TECTA, MPZL2 and others. Three known MPZL2 variants (c.220C > T (p.Gln74*), c.68delC (p.Pro23Leufs*2), c.463delG (p.Ala155Leufs*10)) and a novel start loss variant (c.3G > T (p.Met1?)) were identified. MPZL2 c.220C > T was identified as the hotspot variant in the Chinese population and even in East Asia compared with c.72delA (p.Ile24Metfs*22) in European and West Asia through allele frequency.

Conclusions
We concluded that apart from moderate HL, progressive HL is another character of MPZL2-related HL. No specified variant was verified for the progression of HL, the penetrance and expressivity cannot be determined yet. A novel MPZL2 variant at the start codon was identified, enriching the variant spectrum of MPZL2. The hotspot variants of MPZL2 vary in different ethnicities. This study provides valuable data for the diagnosis, prognosis evaluation and genetic counseling of patients with moderate sensorineural hearing loss related to MPZL2.