Data on medication adherence in adults with neurological disorders: The NeuroGerAd study

www.nature.com/scientificdata OPEN Data Descriptor Data on medication adherence in adults with neurological disorders: The NeuroGerAd study Tino Prell 1,2 ✉, Aline Schönenberg1,2, Sarah Mendorf1, Hannah M. Mühlhammer1, Julian Grosskreutz1 & Ulrike Teschner1 Nonadherence to medication is a common issue that goes along with increased morbidity and mortality and immense health care costs. To improve medication adherence and outcome in ill people, their reasons of not taking their prescribed medication must be known. Here a dataset is presented based on the longitudinal observational NeuroGerAd study in adults with neurological disorders (N = 910). The dataset contains demographic background variables as well as measures of adherence, medication changes after hospital discharge, comprehensive geriatric assessments, personality, patient-physician relationship, and health-related quality of life. As such, the dataset offers unique opportunities to enable a plethora of analyses on personal, social, and institutional factors influencing medication adherence. Background & Summary Adherence is described as the extent to which patients are able or willing to follow agreed recommendations with the medical staff. This includes recommendations on medication, diet, and/or lifestyle changes1,2. Adherence plays a particularly important role in chronic illnesses because medication is necessary to be taken continuously as recommended. Its relevance increases for people in older age, as they often have complex therapy regimens due to different diseases3. In addition, the relevance of this age group is increasing, as the number of people in older age is rising due to demographic changes4. However, many people cannot or do not want to take medications as prescribed2. This medication nonadherence leads to adverse drug events, increased length of stay and hospitals readmissions, lower quality of life (QoL), higher costs, and general poorer health outcomes1,5–7. Causes for nonadherence are manifold8. Furthermore, causes and predictors of nonadherence have been analyzed more frequently for internal diseases such as chronic obstructive pulmonary disease, bronchial asthma, arterial hypertension, etc., and less information are available for neurological diseases in elderly patients9. This paper presents a new dataset that provides unique opportunities to investigate adherence in elderly people with neurological disorders derived from the NeuroGerAd study10. The study included a comprehensive geriatric assessment at baseline during hospital stay and two follow-up telephone interviews at 1 and 12 months after hospital discharge. The comprehensive clinical characterization at baseline allowed the determination of patterns and mechanisms of nonadherence. Two follow-up interviews were performed to explore prevalence and reasons of medication changes in the year after hospital discharge. The dataset can be reused for several health-service-research topics, e.g., patterns of depression, mobility, and nonadherence in elderly hospitalized people, or gap between inpatient and outpatient care in Germany. Methods In this observational longitudinal study, data were collected from people who were treated as inpatient at the Department of Neurology, Jena University Hospital, Jena, Germany between February 2019 and March 2020. Procedures included a comprehensive baseline assessment during hospital stay and 2 follow-up interviews at 1 and 12 months after hospital discharge. Baseline assessments included demographical data, clinical data, self-report adherence, prescribed medication, mobility, depression, cognition, health care utilization, communication, personality, and health-related QoL. Follow-up interviews asked for changes of medication after discharge, reasons thereof, specific kind of change, and health-related QoL. 1 Department of Neurology, Jena University Hospital, Jena, Germany. 2Department of Geriatrics, Halle University Hospital, Halle, Germany. ✉e-mail: Scientific Data | (2022) 9:734 | https://doi.org/10.1038/s41597-022-01847-9 1 www.nature.com/scientificdata/ www.nature.com/scientificdata Setting and participants. This observational and cohort study was registered in the German Clinical Trials Register DRKS00016774 (registered February 19, 2019), and the study protocol was published prior10. The study was approved by the local ethics committee (approval number 5290-10/17) of Jena University Hospital. All patients provided written informed consent. Hospitalized elderly patients with neurological disorders received baseline assessment between February 19, 2019 and March 13, 2020; the first telephone follow-up took place between March 19, 2019 and April 13, 2020; and the second telephone follow-up took place between February 19, 2020 and March 14, 2020. A total of 2,021 patients aged 60 years and older were admitted to the Department of Neurology during the baseline data collection phase; however, 113 were missed for timely reasons, thus, assessments were impossible before their discharge. Of the remaining 1,908 patients that were screened for initial eligibility, 997 were excluded because of a score of <19 points in The Montreal Cognitive Assessment (MoCa) (n = 623) or delirium (n = 27), and because they declined to participate (n = 44), or were hindered to participate due to other medical reasons, such as inability to speak, unconsciousness, or severe dyspnea (n = 259). With the onset of corona virus disease-2019 (COVID-19) pandemic and decreased in the number of patients hospitalized for non-COVID19-related reasons in January 2021, 136 patients aged between 55 and 60 were included when multimorbidity was present. This was done to gain higher sample size. In total, 995 patients were deemed eligible, of whom 910 patients completed the baseline study. In the first follow-up, 727 (79.9%) participants were interviewed by telephone (8 declined to participate and 175 were unreachable). In the second follow-up after 12 months from 910 participants, 673 (74%) participants were interviewed (27 declined and 210 were unreachable). Outcome: The primary outcome was nonadherence according to the Stendal Adherence with Medication Score (SAMS). This study aimed to determine the predictors of nonadherence in patients with neurological disorders taking personal, environmental, and procedural factors into consideration. Assessments. Several variables were obtained via medical records, self-report, and face-to-face investigation by trained study staff. Questionnaires and assessments are detailed in the Table 1. The full survey form can be found in the dataset repository. Cognition testing was done using the MoCa after explaining the study and obtaining written informed consent from all participants. The following variables were recorded from medical records: age, gender, main neurological diagnosis, and medication regime at admission and discharge. The following variables were recorded via self-report in (...truncated)