Nathan Y Chu, Aila Jamali, Yazid N Al Hamarneh, Kaitlyn E Watson, Ross T Tsuyuki, Penelope S Smyth
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引用次数: 0
Abstract
Background and objectives: There has been interest in using patient-reported outcome measures (PROMs) to capture and systematically assess patients' perceptions of their multiple sclerosis (MS) experience and feed this information back to the clinician, but PROMs are not routinely used in MS outpatient clinics. We explored the perspectives of providers caring for persons with MS (PwMS) on the integration of PROMs into clinical practice.
Methods: This was a qualitative substudy of a separate randomized controlled trial (ClinicalTrials.gov: NCT0497954) examining the effect of PROM use on depression and anxiety levels in PwMS. We conducted semistructured interviews with 10 providers caring for participants enrolled in the study and explored their experiences using PROMs with PwMS. Thematic analysis through a mixed inductive and deductive approach was performed using verbatim interview transcriptions.
Results: Seven neurologists, 2 specialty MS nurse practitioners, and 1 MS registered nurse were interviewed. Providers expressed several facilitating factors with PROM usage, including engaging with patient-specific symptoms, initiating patient goal setting, and improving visit efficiency and patient satisfaction. However, providers also expressed barriers such as clinical workflow disruptions and technological barriers, skepticism toward the validity of results, and moral/ethical obligations to information gained from PROMs. Future opportunities elicited were the introduction of previsit PROMs and direct integration of PROMs into the electronic health record.
Discussion: From an MS provider's perspective, PROMs offer useful information but barriers continue to exist. PROMs have promise as an adjunct tool in the care of PwMS to optimize their functioning and experiences as health care system users, and these results may inform future strategic implementation of routine PROMs in MS clinics.
Trial registration information: This trial was registered on July 28, 2021, at the NIH United States National Library of Medicine, ClinicalTrials.gov. Clinical Trial ID: NCT04979546.
期刊介绍:
Neurology® Genetics is an online open access journal publishing peer-reviewed reports in the field of neurogenetics. The journal publishes original articles in all areas of neurogenetics including rare and common genetic variations, genotype-phenotype correlations, outlier phenotypes as a result of mutations in known disease genes, and genetic variations with a putative link to diseases. Articles include studies reporting on genetic disease risk, pharmacogenomics, and results of gene-based clinical trials (viral, ASO, etc.). Genetically engineered model systems are not a primary focus of Neurology® Genetics, but studies using model systems for treatment trials, including well-powered studies reporting negative results, are welcome.