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Is it time to use real-world data from primary care in Alzheimer's disease?

ABSTRACT: BACKGROUND:The analysis of real-world data in clinical research is rising, but its use to study dementia subtypes has been hardly addressed. We hypothesized that real-world data might be a powerful tool to update AD epidemiology at a lower cost than face-to-face studies, to estimate the prevalence and incidence rates of AD in Catalonia (Southern Europe), and to assess the adequacy of real-world data routinely collected in primary care settings for epidemiological research on AD. METHODS:We obtained data from the System for the Development of Research in Primary Care (SIDIAP) database, which contains anonymized information of >?80% of the Catalan population. We estimated crude and standardized incidence rates and prevalences (95% confidence intervals (CI)) of AD in people aged at least 65?years living in Catalonia in 2016. RESULTS:Age- and sex-standardized prevalence and incidence rate of AD were 3.1% (95%CI 2.7-3.6) and 4.2 per 1000 person-years (95%CI 3.8-4.6), respectively. Prevalence and incidence were higher in women and in the oldest people. CONCLUSIONS:Our incidence and prevalence estimations were slightly lower than the recent face-to-face studies conducted in Spain and higher than other analyses of electronic health data from other European populations. Real-world data routinely collected in primary care settings could be a powerful tool to study the epidemiology of AD.

SUBMITTER: Ponjoan A

PROVIDER: S-EPMC7236302 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Is it time to use real-world data from primary care in Alzheimer's disease?

Ponjoan Anna A Garre-Olmo Josep J Blanch Jordi J Fages Ester E Alves-Cabratosa Lia L Martí-Lluch Ruth R Comas-Cufí Marc M Parramon Dídac D Garcia-Gil María M Ramos Rafel R

Alzheimer's research & therapy 20200518 1

<h4>Background</h4>The analysis of real-world data in clinical research is rising, but its use to study dementia subtypes has been hardly addressed. We hypothesized that real-world data might be a powerful tool to update AD epidemiology at a lower cost than face-to-face studies, to estimate the prevalence and incidence rates of AD in Catalonia (Southern Europe), and to assess the adequacy of real-world data routinely collected in primary care settings for epidemiological research on AD.<h4>Metho ...[more]

PMID: 32423489

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Project description:BackgroundThe importance of real-world evidence is widely recognized in observational oncology studies. However, the lack of interoperable data quality standards in the fragmented health information technology landscape represents an important challenge. Therefore, adopting validated systematic methods for evaluating data quality is important for oncology outcomes research leveraging real-world data (RWD).ObjectiveThis study aims to implement real-world time to treatment discontinuation (rwTTD) for a systemic anticancer therapy (SACT) as a new use case for the Use Case Specific Relevance and Quality Assessment, a framework linking data quality and relevance in fit-for-purpose RWD assessment.MethodsTo define the rwTTD use case, we mapped the operational definition of rwTTD to RWD elements commonly available from oncology electronic health record-derived data sets. We identified 20 tasks to check the completeness and plausibility of data elements concerning SACT use, line of therapy (LOT), death date, and length of follow-up. Using descriptive statistics, we illustrated how to implement the Use Case Specific Relevance and Quality Assessment on 2 oncology databases (Data sets A and B) to estimate the rwTTD of an SACT drug (target SACT) for patients with advanced head and neck cancer diagnosed on or after January 1, 2015.ResultsA total of 1200 (24.96%) of 4808 patients in Data set A and 237 (5.92%) of 4003 patients in Data set B received the target SACT, suggesting better relevance of the former in estimating the rwTTD of the target SACT. The 2 data sets differed with regard to the terminology used for SACT drugs, LOT format, and target SACT LOT distribution over time. Data set B appeared to have less complete SACT records, longer lags in incorporating the latest data, and incomplete mortality data, suggesting a lack of fitness for estimating rwTTD.ConclusionsThe fit-for-purpose data quality assessment demonstrated substantial variability in the quality of the 2 real-world data sets. The data quality specifications applied for rwTTD estimation can be expanded to support a broad spectrum of oncology use cases.

Project description:BackgroundDepression is prevalent in primary care (PC) practices and poses a considerable public health burden in the United States. Despite nearly four decades of efforts to improve depression care quality in PC practices, a gap remains between desired treatment outcomes and the reality of how depression care is delivered.ObjectiveThis article presents a real-world PC practice model of depression care, elucidating the processes and their influencing conditions.DesignGrounded theory methodology was used for the data collection and analysis to develop a depression care model. Data were collected from 70 individual interviews (60 to 70 min each), three focus group interviews (n = 24, 2 h each), two surveys per clinician, and investigators' field notes on practice environments. Interviews were audiotaped and transcribed for analysis. Surveys and field notes complemented interview data.ParticipantsSeventy primary care clinicians from 52 PC offices in the Midwest: 28 general internists, 28 family physicians, and 14 nurse practitioners.Key resultsA depression care model was developed that illustrates how real-world conditions infuse complexity into each step of the depression care process. Depression care in PC settings is mediated through clinicians' interactions with patients, practice, and the local community. A clinician's interactional familiarity ("familiarity capital") was a powerful facilitator for depression care. For the recognition of depression, three previously reported processes and three conditions were confirmed. For the management of depression, 13 processes and 11 conditions were identified. Empowering the patient was a parallel process to the management of depression.ConclusionsThe clinician's ability to develop and utilize interactional relationships and resources needed to recognize and treat a person with depression is key to depression care in primary care settings. The interactional context of depression care makes empowering the patient central to depression care delivery.

Project description:BackgroundLife expectancy is significantly shorter for patients with chronic obstructive pulmonary disease (COPD) than the general population. Concurrent diseases are known to infer an increased mortality risk in those with COPD, but the effects of pharmacological treatments on survival are less established. This study aimed to examine any associations between commonly used drugs, comorbidities and mortality in Swedish real-world primary care COPD patients.MethodsPatients with physician-diagnosed COPD from a large primary care population were observed retrospectively, utilizing primary care records and mandatory Swedish national registers. The time to all-cause death was assessed in a stepwise multiple Cox proportional hazards regression model including demography, socioeconomic factors, exacerbations, comorbidities and medication.ResultsDuring the observation period (1999-2009) 5776 (32.5%) of 17,745 included COPD patients died. Heart failure (hazard ratio [HR]: 1.88, 95% confidence interval [CI]: 1.74-2.04), stroke (HR: 1.52, 95% CI: 1.40-1.64) and myocardial infarction (HR: 1.40, 95% CI: 1.24-1.58) were associated with an increased risk of death. Use of inhaled corticosteroids (ICS; HR: 0.79, 95% CI: 0.66-0.94), beta-blockers (HR: 0.86, 95% CI: 0.76-0.97) and acetylsalicylic acid (ASA; HR: 0.87, 95% CI: 0.77-0.98) was dose-dependently associated with a decreased risk of death, whereas use of long-acting muscarinic antagonists (LAMA; HR: 1.33, 95% CI: 1.14-1.55) and N-acetylcysteine (NAC; HR: 1.26, 95% CI: 1.08-1.48) were dose-dependently associated with an increased risk of death in COPD patients.ConclusionThis large, retrospective, observational study of Swedish real-world primary care COPD patients indicates that coexisting heart failure, stroke and myocardial infarction were the strongest predictors of death, underscoring the importance of timely recognition and treatment of comorbidities. A decreased risk of death associated with the use of ICS, beta-blockers and ASA, and an increased risk associated with the use of LAMA and NAC, was also found.

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Is it time to use real-world data from primary care in Alzheimer's disease?

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Is it time to use real-world data from primary care in Alzheimer's disease?

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