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Dementia prevalence and risk factors in people with and without HIV in Malawi: A medical record review
2025
BACKGROUND Sub‐Saharan Africa (SSA) is experiencing a rapid increase in its aging population, including people living with human immunodeficiency virus (HIV) (PLHIV). The purpose of this study was to determine the prevalence of dementia among PLHIV and people without HIV (POHIV) in Malawi. METHODS We conducted a retrospective medical record review of 400 consecutive patients from a single tertiary health center (200 PLHIV from an HIV clinic and 200 POHIV from an outpatient clinic) in Lilongwe, Malawi. RESULTS The overall rate of dementia was higher in PLHIV than that in POHIV (22% vs 10%; p = 1.4e). Older age, unknown employment or unemployed, and depression were significant risk factors for dementia for PLHIV, while older age and depression were significant among POHIV. DISCUSSION Our study confirmed the increased risk of dementia in PLHIV and provides valuable groundwork for future dementia studies to accurately examine the prevalence and risk factors of dementia in SSA, including Malawi. Highlights Malawians, in SSA, face the double burden of HIV AD and related dementias. We conducted a retrospective medical record review to assess dementia prevalence and risk factors. Dementia prevalence was higher in PLHIV than in POHIV. Older age, unknown employment or unemployed, and depression were risk factors for dementia in PLHIV. Our findings, reflecting the current diagnosing and medical documenting practice in Malawi, provide valuable groundwork for future dementia research in Malawi.
Journal Article
Delayed Diagnosis of Respiratory Syncytial Virus Infections in Hospitalized Adults
2019
Despite the prevalence of respiratory syncytial virus (RSV) in adults hospitalized with acute respiratory infections, guidelines for the diagnosis and management of RSV have not been established. This analysis evaluated the role and timeliness of RSV diagnostic testing and its potential impact on clinical outcomes.
We analyzed individual patient data from hospitalized adults with confirmed RSV infections during 2 North American RSV seasons. Participating physicians reported clinical, virologic diagnosis, and outcome variables using a standardized online case form.
Across 32 US states, 132 physicians reported 379 RSV cases. Polymerase chain reaction-based diagnostics were the most common type of test ordered (94.2%) with <5% ordered specifically to diagnose RSV. Most tests (67.6%) were ordered in hospital wards or intensive care units. Overall, 47.4%, 30.9%, and 21.7% of patients had RSV diagnosed <12, 12‒24, and >24 hours after hospital admission, respectively. Later diagnosis was associated with longer hospital stays (n = 145; R = +0.191; P < .05) and greater antibiotic use.
Diagnosis of RSV infection in hospitalized adults is often delayed, which may affect clinical management and outcomes. Our findings indicate the need to improve the diagnostic strategies in this patient population.
Journal Article
Methods of Piloting an Abstraction Tool to Describe Family Engagement in the Hospital Setting: Retrospective Chart Review
by
Cahill, Jennifer
,
Gazarian, Priscilla
,
Ritchie, Christine
in
Activities of daily living
,
Case management
,
Clinical Informatics
2025
Family engagement in hospitals is crucial for improving outcomes and ensuring holistic, patient-centered care. However, there is limited understanding of how providers document family engagement in electronic medical records (EMR) and how factors such as race and health disparities influence engagement practices. The absence of standardized EMR templates complicates tracking engagement and assessing its impact on patient outcomes. Retrospective chart review (RCR) is an effective method for investigating clinical practice and how family engagement is documented, using both structured and unstructured data from patient records. Despite its potential, gaps remain in the literature regarding distinctions between the prepilot and pilot phases in RCR studies.
This article describes the prepiloting and piloting stages in the development of an abstraction tool for an RCR study, highlighting how these phases refined the tool for extracting family engagement data from the EMRs.
A cohort of 2032 medical records was selected using the Research Patient Database Registry and EMRs. Initially, a draft tool was tested during the prepilot phase to assess its stability. To optimize diversity, the sample was then stratified by race. The modified tool was subsequently piloted on a subset of the sample.
The prepilot phase tested the tool on 9 records. In the pilot phase, the tool was applied to 39 records, representing approximately 10% of the sample. After the prepiloting and piloting phases, 293 of the 405 patient records were deemed eligible for inclusion. More than three-quarters of patients had documentation of presence and communication; whereas, only about one-third had documentation of shared decision-making involving families.
The prepilot phase helped standardize the abstraction tool, align it with the EMRs, and address potential biases. The pilot phase provided insights into data availability and highlighted areas for refinement before finalizing the tool for the remaining records. Together, these phases ensured the tool's effectiveness for use in large-scale RCR studies.
Journal Article
Accessing medical records for research in South African public hospitals: a reflective narrative
by
Maneli, Zinhle Khadija
,
Komane, Boitumelo
,
Boikanyo, Emelda
in
Access control
,
Access to Information
,
Bureaucrats
2025
Background
Access to medical data is important for health system research in South Africa. Researchers must obtain authorization from gatekeepers to enter hospitals and access medical records. They engage with street-level bureaucrats to retrieve specific records and extract necessary data. This paper reflects on our experiences accessing patient records in a nationally representative sample of 60 public hospitals in South Africa.
Methods
We chose narrative inquiry to deeply explore researchers' experiences accessing medical records in South African public hospitals. This qualitative method focuses on individuals' stories and personal experiences, providing rich, detailed insights into complex, context-dependent phenomena. Field reports documented our reflections and experiences during each hospital visit. Additionally, we conducted debriefing sessions to further explore these experiences. The themes that emerged from the field reports and debriefing sessions prompted us to delve deeper into the research process. To explore these themes, we conducted a focus group discussion (FGD) with all researchers. The FGD transcript and field reports were analyzed using MAXQDA. We adopted Gibbs's reflective model, incorporating structured debriefing steps, to present our findings.
Results
Our reflections highlight the challenges encountered during the ethical review process, engagements with numerous gatekeepers, and street-level bureaucracy. The ethics review process experienced significant delays. Obtaining permission from various gatekeepers was arduous and complex, often presenting logistical challenges. We had both positive and negative experiences with the street-level bureaucrats, including hospital staff responsible for creating, curating, and safeguarding medical records. Some exhibited resistance that appeared to stem from their frustrations with superiors. Public hospital records were mostly poorly curated.
Conclusion
Ethical review is essential for guiding complex research like access to abortion. However, an overcautious approach might impede needed research with vulnerable populations. Researchers need to be up to date with local processes and have sufficient resources to gain gatekeepers’ permission to access public hospitals. Understanding street-level bureaucracy is imperative for researchers who need to interact with various hospital personnel to access medical records. The state of record-keeping in South African public hospitals may reflect the overall state of the health system, including examples of excellence and mediocrity.
Journal Article
Clinician documentation of patient centered care in the electronic health record
by
Gibson, Bryan
,
Zhang, Yue
,
Patterson, Olga V.
in
Care and treatment
,
Computational linguistics
,
Contextual information
2022
Background
In this study we sought to explore the possibility of using patient centered care (PCC) documentation as a measure of the delivery of PCC in a health system.
Methods
We first selected 6 VA medical centers based on their scores for a measure of support for self-management subscale from a national patient satisfaction survey (the Survey for Healthcare Experience-Patients). We accessed clinical notes related to either smoking cessation or weight management consults. We then annotated this dataset of notes for documentation of PCC concepts including: patient goals, provider support for goal progress, social context, shared decision making, mention of caregivers, and use of the patient's voice. We examined the association of documentation of PCC with patients’ perception of support for self-management with regression analyses.
Results
Two health centers had < 50 notes related to either tobacco cessation or weight management consults and were removed from further analysis. The resulting dataset includes 477 notes related to 311 patients total from 4 medical centers. For a majority of patients (201 out of 311; 64.8%) at least one PCC concept was present in their clinical notes. The most common PCC concepts documented were patient goals (patients n = 126; 63% clinical notes n = 302; 63%), patient voice (patients n = 165, 82%; clinical notes n = 323, 68%), social context (patients n = 105, 52%; clinical notes n = 181, 38%), and provider support for goal progress (patients n = 124, 62%; clinical notes n = 191, 40%). Documentation of goals for weight loss notes was greater at health centers with higher satisfaction scores compared to low. No such relationship was found for notes related to tobacco cessation.
Conclusion
Providers document PCC concepts in their clinical notes. In this pilot study we explored the feasibility of using this data as a means to measure the degree to which care in a health center is patient centered. Practice Implications: clinical EHR notes are a rich source of information about PCC that could potentially be used to assess PCC over time and across systems with scalable technologies such as natural language processing.
Journal Article
Using the Electronic Health Record to Characterize the Hepatitis C Virus Care Cascade
by
Isaacs-Soriano, Kimberly A.
,
Roetzheim, Richard G.
,
Reich, Richard R.
in
Adult
,
Blood diseases
,
Cancer
2022
Objectives
Chronic hepatitis C virus (HCV) infection is one of the main causes of hepatocellular carcinoma. Before initiating a multilevel HCV screening intervention, we sought to (1) describe concordance between the electronic health record (EHR) data warehouse and manual medical record review in recording aspects of HCV testing and treatment and (2) estimate the percentage of patients with chronic HCV infection who initiated and completed HCV treatment using manual medical record review.
Methods
We examined the medical records for 177 patients (100 randomly selected patients born during 1945-1965 without evidence of HCV testing and 77 adult patients of any birth cohort who had completed HCV testing) with a primary care or relevant specialist visit at an academic health care system in Tampa, Florida, from 2015 through 2018. We used the Cohen κ coefficient to examine the degree of concordance between the searchable data warehouse and the medical record review abstractions. Descriptive statistics characterized referral to and receipt of treatment among patients with chronic HCV infection from medical record review.
Results
We found generally good concordance between the data warehouse abstraction and medical record review for HCV testing data (κ ranged from 0.66 to 0.87). However, the data warehouse failed to capture data on HCV treatment variables. According to medical record review, 28 patients had chronic HCV infection; 16 patients were prescribed treatment, 14 initiated treatment, and 9 achieved and had a reported posttreatment undetected HCV viral load.
Conclusions
Using data warehouse data provides generally reliable HCV testing information. However, without the use of natural language processing and purposeful EHR design, manual medical record reviews will likely be required to characterize treatment initiation and completion.
Journal Article
Anthrax outbreaks in the humans - livestock and wildlife interface areas of Northern Tanzania: a retrospective record review 2006–2016
by
Mwakapeje, Elibariki Reuben
,
Skjerve, Eystein
,
Nonga, Hezron Emmanuel
in
Analysis
,
Animals
,
Anthrax
2018
Background
Anthrax outbreaks in Tanzania have been reported from the human, livestock and wildlife sectors over several years, and is among the notifiable diseases. Despite frequent anthrax outbreaks, there is no comprehensive dataset indicating the magnitude and distribution of the disease in susceptible species. This study is a retrospective review of anthrax outbreaks from the human, livestock, and wildlife surveillance systems from 2006 to 2016. The objectives were to identify hotspot districts, describe anthrax epidemiology in the hotspot areas, evaluate the efficiency of the anthrax response systems and identify potential areas for further observational studies.
Methods
We prepared a spreadsheet template for a retrospective comprehensive record review at different surveillance levels in Tanzania. We captured data elements including demographic characteristics of different species, the name of health facility, and date of anthrax diagnosis. Also, we collected data on the date of specimen collection, species screened, type of laboratory test, laboratory results and the outcome recorded at the end of treatment in humans. After establishing the database, we produced maps in Quantum GIS software and transferred cleaned data to Stata software for supportive statistical analysis.
Results
Anthrax reported incidences over 4 years in humans were much higher in the Arusha region (7.88/100,000) followed by Kilimanjaro region (6.64/100,000) than other regions of Tanzania Mainland. The health facility based review from hotspot districts in parts of Arusha and Kilimanjaro regions from 2006 to 2016, identified 330 human anthrax cases from the selected health facilities in the two regions. Out of 161 livestock and 57 wildlife specimen tested, 103 and 18 respectively, were positive for anthrax.
Conclusion
This study revealed that there is gross under-reporting in the existing surveillance systems which is an obstacle for estimating a true burden of anthrax in the hotspot districts. Repeated occurrences of anthrax in livestock, wildlife and humans in the same locations at the same time calls for the need to strengthen links and promote inter–disciplinary and multi-sectoral collaboration to enhance prevention and control measures under a One Health approach.
Journal Article
Accuracy assessment of patient safety incident (PSI) codes and present-on-admission (POA) indicators: a cross-sectional analysis using the Patient Safety Incidents Inquiry (PSII) in Korea
2024
Background
Among the various methods used, administrative data collected for claims and billing purposes, such as diagnosis codes and present-on-admission (POA) indicators, can easily be employed to assess patient safety status. However, it is crucial that administrative data be accurate to generate valid estimates of adverse event (AE) occurrence. Thus, we aimed to evaluate the accuracy of diagnosis codes and POA indicators in patients with confirmed AEs in the hospital admission setting.
Methods
We analysed the diagnosis codes of 1,032 confirmed AE cases and 6,754 non-AE cases from the 2019 Patient Safety Incidents Inquiry, which was designed as a cross-sectional study, to determine their alignment with the Korean Patient Safety Incidents (PSIs) Code Classification System. The unit of analysis was the individual case rather than the patient, because two or more AEs may occur in one patient. We examined whether the primary and secondary diagnostic codes had PSIs codes matching the AE type and checked each PSI code for whether the POA indicator had an ‘N’ tag. We reviewed the presence of PSI codes in patients without identified AEs and calculated the correlation between the AE incidence rate and PSI code and POA indicator accuracy across 15 hospitals.
Results
Ninety (8.7%) of the AE cases had PSI codes with an ‘N’ tag on the POA indicator compared to 294 (4.4%) of the non-AE cases. Infection- (20.4%) and surgery/procedure-related AEs (13.6%) had relatively higher instances of correctly tagged PSI codes. We did not identify any PSI codes for diagnosis-related incidents. While we noted significant differences in AE incidence rates, PSI code accuracy, and POA indicator accuracy among the hospitals, the correlations between these variables were not statistically significant.
Conclusion
Currently, PSI codes and POA indicators in South Korea appear to have low validity. To use administrative data in medical quality improvement activities such as monitoring patient safety levels, improving the accuracy of administrative data should be a priority. Possible strategies include targeted education on PSI codes and POA indicators and introduction of new evaluation indicators regarding the accuracy of administrative data.
Journal Article
Quality of patient record keeping: an indicator of the quality of care?
by
Zegers, Marieke
,
de Bruijne, Martine C
,
van der Wal, Gerrit
in
Adverse event
,
College admissions
,
Departments
2011
BackgroundPatient record review of hospitalised patients is by far the most applied method to assess adverse events (AEs) in hospitals. The diligence with which information is recorded may influence the visibility of AEs. On the other hand, poor quality of the information in patient records may be a cause or a consequence of poor quality of care and may thus be associated with higher rates of AEs. The objective of this study was to assess the relation between the quality of patient records and the occurrence of AEs.MethodsIn this study, 7926 hospital admissions of 21 Dutch hospitals were analysed with a structured record review method. The occurrence of AEs, the presence of patient information and the quality of the present information (completeness, readability and adequacy) were assessed. Their association was analysed using multilevel logistic regression analyses.ResultsThe absence of record components was associated with lower rates of AEs, suggesting that missing record components lead to an underassessment of AEs in record-review studies. In contrast, poor quality of the information present in patient records was associated with higher rates of AEs, implying that the quality of the present patient information is a predictor of the quality of care.ConclusionsEvidence-based standards and a (electronic) format for record keeping are necessary for standardisation of recording patient information. This will improve the completeness, readability, accessibility, accuracy and exchange of patient information between healthcare providers and institutions. Better registration of patient information will benefit the quality of the healthcare process and will reduce the risk of AEs.
Journal Article
Real-world treatment sequencing and survival in previously treated advanced renal cell carcinoma patients receiving nivolumab monotherapy: a UK retrospective cohort study
by
McKenna, S.
,
Griffiths, R.
,
Carroll, R.
in
Aged
,
Antineoplastic Combined Chemotherapy Protocols - therapeutic use
,
Apoptosis
2022
Background
The CheckMate 025 trial established nivolumab monotherapy as one of the standards of care in previously treated advanced or metastatic renal cell carcinoma (aRCC). However, supporting real-world data is lacking. This study investigated characteristics, treatment sequences and clinical outcomes of patients who received nivolumab monotherapy for previously treated aRCC in the UK.
Methods
This was a retrospective cohort study of aRCC patients treated with nivolumab at second line or later (2L +) at 4 UK oncology centres. Eligible patients commenced nivolumab (index date) between 01 March 2016 and 30 June 2018 (index period). Study data were extracted from medical records using an electronic case report form. Data cut-off (end of follow-up) was 31 May 2019.
Results
In total, 151 patients were included with median follow-up of 15.2 months. Mean age was 66.9 years, male preponderance (72.2%), and mostly Eastern Cooperative Oncology Group performance status grade 0–1 (71.5%). Amongst 112 patients with a known International Metastatic RCC Database Consortium score, distribution between favourable, intermediate, and poor risk categories was 20.5%, 53.6%, and 25.9% respectively.
The majority of patients (
n
= 109; 72.2%) received nivolumab at 2L, and these patients had a median overall survival (OS) of 23.0 months [95% confidence interval: 17.2, not reached]. All patients who received nivolumab at 2L had received TKIs at 1L. Amongst the 42 patients (27.8%) who received nivolumab in third line or later (3L +) the median OS was 12.4 months [95% CI: 8.8, 23.2]. The most common reasons for nivolumab discontinuation were disease progression (2L: 61.2%; 3L: 68.8%) and adverse events (2L: 34.7%; 3L: 28.1%).
Conclusion
This study provides real-world evidence on the characteristics, treatment sequences, and outcomes of aRCC patients who received 2L + nivolumab monotherapy in the UK. Nivolumab-specific survival outcomes were similar to those achieved in the CheckMate 025 trial.
Journal Article