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Comparing routine inpatient data and death records as a means of identifying children and young people with life-limiting conditions.

ABSTRACT: BACKGROUND:Recent estimates of the number of children and young people with life-limiting conditions derived from routine inpatient data are higher than earlier estimates using death record data. AIM:To compare routine inpatient data and death records as means of identifying life-limiting conditions in children and young people. DESIGN:Two national cohorts of children and young people with a life-limiting condition (primary cohort from England with a comparator cohort from Scotland) were identified using linked routinely collected healthcare and administrative data. PARTICIPANTS:A total of 37,563 children and young people with a life-limiting condition in England who died between 1 April 2001 and 30 March 2015 and 2249 children and young people with a life-limiting condition in Scotland who died between 1 April 2003 and 30 March 2014. RESULTS:In England, 16,642 (57%) non-neonatal cohort members had a life-limiting condition recorded as the underlying cause of death; 3364 (12%) had a life-limiting condition-related condition recorded as the underlying cause and 3435 (12%) had life-limiting conditions recorded only among contributing causes. In all, 5651 (19%) non-neonates and 3443 (41%) neonates had no indication of a life-limiting condition recorded in their death records. Similar results were seen in Scotland (overall, 16% had no indication of life-limiting conditions). In both cohorts, the recording of life-limiting condition was highest among those with haematology or oncology diagnoses and lowest for genitourinary and gastrointestinal diagnoses. CONCLUSION:Using death record data alone to identify children and young people with life-limiting condition - and therefore those who would require palliative care services - would underestimate the numbers. This underestimation varies by age, deprivation, ethnicity and diagnostic group.

SUBMITTER: Jarvis S

PROVIDER: S-EPMC5788076 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

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Comparing routine inpatient data and death records as a means of identifying children and young people with life-limiting conditions.

Jarvis Stuart S Fraser Lorna K LK

Palliative medicine 20170829 2

<h4>Background</h4>Recent estimates of the number of children and young people with life-limiting conditions derived from routine inpatient data are higher than earlier estimates using death record data.<h4>Aim</h4>To compare routine inpatient data and death records as means of identifying life-limiting conditions in children and young people.<h4>Design</h4>Two national cohorts of children and young people with a life-limiting condition (primary cohort from England with a comparator cohort from ...[more]

PMID: 28849716

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Project description:BackgroundElectronic health records (EHRs) are increasingly implemented internationally, whereas digital sharing of EHRs with service users (SUs) is a relatively new practice. Studies of patient-accessible EHRs (PAEHRs)-often referred to as open notes-have revealed promising results within general medicine settings. However, studies carried out in mental health care (MHC) settings highlight several ethical and practical challenges that require further exploration.ObjectiveThis scoping review aims to map available evidence on PAEHRs in MHC. We seek to relate findings with research from other health contexts, to compare different stakeholders' perspectives, expectations, actual experiences with PAEHRs, and identify potential research gaps.MethodsA systematic scoping review was performed using 6 electronic databases. Studies that focused on the digital sharing of clinical notes or EHRs with people affected by mental health conditions up to September 2021 were included. The Mixed Methods Appraisal Tool was used to assess the quality of the studies. The PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) Extension for Scoping Reviews guided narrative synthesis and reporting of findings.ResultsOf the 1034 papers screened, 31 were included in this review. The studies used mostly qualitative methods or surveys and were predominantly published after 2018 in the United States. PAEHRs were examined in outpatient (n=29) and inpatient settings (n=11), and a third of all research was conducted in Veterans Affairs Mental Health. Narrative synthesis allowed the integration of findings according to the different stakeholders. First, SUs reported mainly positive experiences with PAEHRs, such as increased trust in their clinician, health literacy, and empowerment. Negative experiences were related to inaccurate notes, disrespectful language use, or uncovering of undiscussed diagnoses. Second, for health care professionals, concerns outweigh the benefits of sharing EHRs, including an increased clinical burden owing to more documentation efforts and possible harm triggered by reading the notes. Third, care partners gained a better understanding of their family members' mental problems and were able to better support them when they had access to their EHR. Finally, policy stakeholders and experts addressed ethical challenges and recommended the development of guidelines and trainings to better prepare both clinicians and SUs on how to write and read notes.ConclusionsPAEHRs in MHC may strengthen user involvement, patients' autonomy, and shift medical treatment to a coproduced process. Acceptance issues among health care professionals align with the findings from general health settings. However, the corpus of evidence on digital sharing of EHRs with people affected by mental health conditions is limited. Above all, further research is needed to examine the clinical effectiveness, efficiency, and implementation of this sociotechnical intervention.

Project description:PurposeThe purpose of this tutorial is to provide visual scientists with various approaches for comparing two or more groups of data using parametric statistical tests, which require that the distribution of data within each group is normal (Gaussian). Non-parametric tests are used for inference when the sample data are not normally distributed or the sample is too small to assess its true distribution.MethodsMethods are reviewed using retinal thickness, as measured by optical coherence tomography (OCT), as an example for comparing two or more group means. The following parametric statistical approaches are presented for different situations: two-sample t-test, Analysis of Variance (ANOVA), paired t-test, and the analysis of repeated measures data using a linear mixed-effects model approach.ResultsAnalyzing differences between means using various approaches is demonstrated, and follow-up procedures to analyze pairwise differences between means when there are more than two comparison groups are discussed. The assumption of equal variance between groups and methods to test for equal variances are examined. Examples of repeated measures analysis for right and left eyes on subjects, across spatial segments within the same eye (e.g. quadrants of each retina), and over time are given.ConclusionsThis tutorial outlines parametric inference tests for comparing means of two or more groups and discusses how to interpret the output from statistical software packages. Critical assumptions made by the tests and ways of checking these assumptions are discussed. Efficient study designs increase the likelihood of detecting differences between groups if such differences exist. Situations commonly encountered by vision scientists involve repeated measures from the same subject over time, measurements on both right and left eyes from the same subject, and measurements from different locations within the same eye. Repeated measurements are usually correlated, and the statistical analysis needs to account for the correlation. Doing this the right way helps to ensure rigor so that the results can be repeated and validated.

Project description:This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality.ConclusionChildren with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this.What is known• Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care.What is new• Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.

Project description:BackgroundMusculoskeletal (MSK) conditions are a common presentation in primary care. This study sought to determine the prevalence of MSK conditions in primary care in Ontario and to validate the extent to which health administrative date billing codes accurately represent MSK diagnoses.MethodsDe-identified electronic medical records (EMR) from the DELPHI database in southwestern Ontario, which contains 2493 patients (55.6% female, mean age 50.3 years (SD = 22.2)) and 21,964 encounters (July 1, 2006-June 30, 2010) were used for the analyses. Outcomes included: validation measures of agreement between International Classification of Diseases (ICD-9) diagnostic codes (health administrative data) and International Classification of Primary Care (ICPC) diagnoses defined as the reference standard, time to first ICD-9 code, prevalence, and healthcare utilization.ResultsThere were 2940 true positive MSK encounters with primary care practitioners for 998 patients. Performance of the ICD-9 diagnostic codes included sensitivity = 76.5%, specificity = 95.2%, PPV = 94.6%, and NPV = 78.7%, compared to the ICPC reference standard. The majority of 998 patients were coded with both an ICPC and ICD-9 MSK code at their first or second encounter (67.4%). However, 23.5% of patients with the ICPC reference standard MSK were never coded with ICD-9. Four-year prevalence of MSK was 52.3% and varied by age (4.5% 0-17 years, 20.1% 18-44, 42.7% 45-64, and 32.7% 65+). Patients at MSK encounters had a higher number of: investigations (17.9% compared to 9.1%, p < .0001); referrals (17.6% compared to 14.3%, p < .0001); and prescriptions for opioids (17.2% compared to 5.3%, p < .0001).ConclusionsThis study determined the prevalence of musculoskeletal conditions in primary care in Ontario using a reference standard definition. The study highlighted the value of using primary care ICPC codes to validate a definition for musculoskeletal conditions. Health administrative data can be used to ascertain the presence of musculoskeletal conditions; however, ICD-9 codes may underrepresent the prevalence of MSK conditions.

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Comparing routine inpatient data and death records as a means of identifying children and young people with life-limiting conditions.

Publications

Comparing routine inpatient data and death records as a means of identifying children and young people with life-limiting conditions.

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