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NIH grant 1K99NR022359-01: Leveraging Nurses to Improve Care for Postural Orthostatic Tachycardia Syndrome
Institute: {'code': 'NR', 'abbreviation': 'NINR', 'name': 'National Institute of Nursing Research', 'admin_org_id': '12500052', 'admin_funding_url': ''}. PI: Sarah Irene Leonard. Award: $133547.
Start: 2026-09-24T00:00:00.
PROJECT SUMMARY/ABSTRACT
Postural Orthostatic Tachycardia Syndrome (POTS) is a debilitating autonomic nervous system disorder
defined by a sustained heart rate increase upon standing, accompanied by orthostatic intolerance symptoms
such as lightheadedness, palpitations, presyncope/syncope, and dyspnea. POTS causes symptoms spanning
multiple body systems, frequently including chronic pain, gastrointestinal dysmotility, and respiratory problems
among others. Health-related quality of life among people with POTS is comparable to people living with heart
failure or chronic obstructive pulmonary disease, and adults with POTS face difficulty maintaining employment,
and incur significant out-of-pocket medical expenses. POTS is more common in the aftermath of the COVID-19
pandemic, leading to a substantial recent increase in its prevalence and the frequency with which it is
encountered by healthcare providers. Patients with POTS often see numerous specialists. In 2021, the
American Autonomic Society called for new multidisciplinary models, including nurses, to improve healthcare
delivery for patients with POTS. Registered nurses are ideally suited to coordinate multidisciplinary care for
complex chronic conditions, but they are underutilized in current outpatient care models indicating a need for
research to design and implement nurse-led models, consistent with NINR’s Research Lens of Advancing
Systems to Optimize Care. To ensure new models earn patients’ trust and effectively meet their needs, it is
necessary to work closely with stakeholders (people with POTS and POTS providers) throughout the process,
from understanding current problems to designing and implementing solutions. As the nation’s most trusted
profession for 23 consecutive years, nurses are well-situated to be a part of this solution. The proposed study
actively involves people with POTS and POTS providers to co-design a nurse-led intervention to improve
POTS management. Working collaboratively with people with POTS and POTS providers, we will apply a
human-centered design process model to 1) Discover and define the key problems faced by people with POTS
seeking healthcare, 2) Develop a nurse-led care coordination intervention for people with POTS,
collaboratively with patients and providers, and finally 3) Deliver and assess the feasibility and acceptability,
and explore the efficacy, of a nurse-led care coordination intervention for people with POTS. We hypothesize
that co-designed nurse-led care coordination will be feasible and acceptable and improve participants’ health-
related quality of life while reducing their healthcare system distrust. Findings will set the stage for future work
to improve POTS care and outcomes through broader intervention implementation. This work supports my
transition to independence through mentored training in autonomic disorders research, human-centered
design, and community-engaged intervention development. This training will support my goal of building a
program of research dedicated to leveraging nurses to improve healthcare for complex chronic conditions.document fetched 2026-10-04 02:44