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Impact of inconsistent ethnicity recordings on estimates of inequality in child health and education data: a data linkage study of Child and Adolescent Mental Health Services in South London

Por: Wickersham · A. · Das-Munshi · J. · Ford · T. · Jewell · A. · Stewart · R. · Downs · J.
Objectives

Ethnicity data are critical for identifying inequalities, but previous studies suggest that ethnicity is not consistently recorded between different administrative datasets. With researchers increasingly leveraging cross-domain data linkages, we investigated the completeness and consistency of ethnicity data in two linked health and education datasets.

Design

Cohort study.

Setting

South London and Maudsley NHS Foundation Trust deidentified electronic health records, accessed via Clinical Record Interactive Search (CRIS) and the National Pupil Database (NPD) (2007–2013).

Participants

N=30 426 children and adolescents referred to local Child and Adolescent Mental Health Services.

Primary and secondary outcome measures

Ethnicity data were compared between CRIS and the NPD. Associations between ethnicity as recorded from each source and key educational and clinical outcomes were explored with risk ratios.

Results

Ethnicity data were available for 79.3% from the NPD, 87.0% from CRIS, 97.3% from either source and 69.0% from both sources. Among those who had ethnicity data from both, the two data sources agreed on 87.0% of aggregate ethnicity categorisations overall, but with high levels of disagreement in Mixed and Other ethnic groups. Strengths of associations between ethnicity, educational attainment and neurodevelopmental disorder varied according to which data source was used to code ethnicity. For example, as compared with White pupils, a significantly higher proportion of Asian pupils achieved expected educational attainment thresholds only if ethnicity was coded from the NPD (RR=1.46, 95% CI 1.29 to 1.64), not if ethnicity was coded from CRIS (RR=1.11, 0.98 to 1.26).

Conclusions

Data linkage has the potential to minimise missing ethnicity data, and overlap in ethnicity categorisations between CRIS and the NPD was generally high. However, choosing which data source to primarily code ethnicity from can have implications for analyses of ethnicity, mental health and educational outcomes. Users of linked data should exercise caution in combining and comparing ethnicity between different data sources.

IMPAACT: IMproving the PArticipAtion of older people in policy decision-making on common health CondiTions - a study protocol

Por: Ambagtsheer · R. C. · Hurley · C. J. · Lawless · M. · Braunack-Mayer · A. · Visvanathan · R. · Beilby · J. · Stewart · S. · Cornell · V. · Leach · M. J. · Taylor · D. · Thompson · M. · Dent · E. · Whiteway · L. · Archibald · M. · O'Rourke · H. M. · Williams · K. · Chudecka · A.
Introduction

Rapid population ageing is a demographic trend being experienced and documented worldwide. While increased health screening and assessment may help mitigate the burden of illness in older people, issues such as misdiagnosis may affect access to interventions. This study aims to elicit the values and preferences of evidence-informed older people living in the community on early screening for common health conditions (cardiovascular disease, diabetes, dementia and frailty). The study will proceed in three Phases: (1) generating recommendations of older people through a series of Citizens’ Juries; (2) obtaining feedback from a diverse range of stakeholder groups on the jury findings; and (3) co-designing a set of Knowledge Translation resources to facilitate implementation into research, policy and practice. Conditions were chosen to reflect common health conditions characterised by increasing prevalence with age, but which have been underexamined through a Citizens’ Jury methodology.

Methods and analysis

This study will be conducted in three Phases—(1) Citizens’ Juries, (2) Policy Roundtables and (3) Production of Knowledge Translation resources. First, older people aged 50+ (n=80), including those from traditionally hard-to-reach and diverse groups, will be purposively recruited to four Citizen Juries. Second, representatives from a range of key stakeholder groups, including consumers and carers, health and aged care policymakers, general practitioners, practice nurses, geriatricians, allied health practitioners, pharmaceutical companies, private health insurers and community and aged care providers (n=40) will be purposively recruited for two Policy Roundtables. Finally, two researchers and six purposively recruited consumers will co-design Knowledge Translation resources. Thematic analysis will be performed on documentation and transcripts.

Ethics and dissemination

Ethical approval has been obtained through the Torrens University Human Research Ethics Committee. Participants will give written informed consent. Findings will be disseminated through development of a policy brief and lay summary, peer-reviewed publications, conference presentations and seminars.

Patients' and caregivers' perceptions of the quality of hospital‐at‐home service: A scoping review

Abstract

Aim

This scoping review aims to provide an overview of patients and caregivers perceptions of hospital-at-home (HaH) services.

Background

HaH services provide patients with hospital-level care at home and are central to integrated healthcare systems. Despite favourable data from individual studies in the literature, in-depth analysis from patient and caregivers perspectives is lacking. This understanding is essential for the dissemination and scaling of HaH services.

Design

The scoping review was performed using the PRISMA-ScR checklist and PAGER framework for the findings report and research recommendations.

Method

Literature from PubMed, Web of Science, Ovid, CINAHL, Cochrane and Mednar databases were searched. Relevant studies published between 1st January 2005 and 31st December 2022 were identified. The conceptual model of the development of patient perceptions of quality was used for data extraction and tabulation.

Results

The review included 24 articles. Expectation attributions were identified as needs, types of service, hospitalisation experiences, family care preferences, social-demographics and coping skills. From patient's and caregiver's perspectives, HaH was safe, effective and viewed positively. Perceived concerns/barriers and enablers/facilitators were associated with individual, caregiver and system factors, but demonstrated an overall satisfaction in the HaH service.

Conclusion

HaH provides an excellent service according to patients' and caregivers' perceptions. However, gaps in care were identified such as prioritising patient-centred care, along with improved multidisciplinary continuity of care and future studies should incorporate these into their research of HaH.

Relevance to Clinical Practice

Patients' and caregivers' HaH needs should be embedded in the design, development and implementation of HaH services.

Patient and Public Contribution

Not applicable for the study design of this scoping review.

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