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Abstract Background Neurogenic orthostatic hypotension (nOH) results from impaired vasoconstriction due to dysfunction of the autonomic nervous system and is commonly associated with Parkinson disease (PD), multiple system atrophy (MSA), and pure autonomic failure. nOH can increase the risk of falls due to symptoms that include postural lightheadedness or dizziness, presyncope, and syncope. The purpose of this study was to obtain information from patients and caregivers regarding the symptoms and burden of nOH to expand on limited knowledge regarding the impact of nOH on quality of life. Methods This author-designed survey included questions regarding nOH (e.g., frequency and impact of symptoms, management) and was conducted online by Harris Poll via distribution to individuals who agreed to participate in Harris Poll online surveys or who were members of relevant disease advocacy organizations. Eligible patients were aged ≥ 18 years with PD, MSA, or pure autonomic failure and ≥ 1 of the following: orthostatic hypotension (OH), nOH, low blood pressure upon standing, or OH/nOH symptoms. Eligible caregivers cared for such patients but were not necessarily linked to any patient participant. Results Survey responses were received from 363 patients and 128 caregivers. PD was the most frequent underlying disorder (90% of patients; 88% of individuals managed by the caregivers). Despite meeting survey diagnosis criteria, a formal diagnosis of OH or nOH was reported by only 36% of patients and 16% of caregivers. The most frequent symptoms of nOH were dizziness or lightheadedness, fatigue when standing, and difficulty walking. A negative impact on patient quality of life caused by nOH symptoms was reported by 59% of patients and 75% of caregivers. Most respondents (≥87%) reported that nOH symptoms adversely affected patients’ ability to perform everyday activities (most frequently physical activity/exercise, housework, and traveling). Falls (≥1) in the previous year due to nOH symptoms were reported by 57% of patients and 80% of caregivers. Conclusions These survey results support the premise that nOH symptoms have a substantial negative impact on patient function and quality of life. The relatively low rates of formal nOH/OH diagnosis suggest the need for heightened awareness regarding the condition and its symptom burden.

Abstract Background Systems science approaches like simulation modeling can offer an opportunity for community voice to shape policies. In the episteme of many communities there are elders, leaders, and researchers who are seen as bearers of historic knowledge and can contextualize and interpret contemporary research using knowledge systems of the community. There is a need for a systematic methodology to collaborate with community Knowledge Bearers and Knowledge Interpreters. In this paper we report the results of piloting a systematic methodology for collaborating with a community Knowledge-Bearer and Knowledge-Interpreter to develop a conceptual model revealing the local-level influences and architecture of systems shaping community realities. The use case for this pilot is ‘persistent poverty’ in the United States, specifically within the inner-city African American community in Baltimore City. Methods This pilot of a participatory modeling approach was conducted over a span of 7 sessions and included the following steps, each with an associated script: Step 1: Knowledge-Bearer and Knowledge-Interpreter recruitment Step 2: Relationship building Step 3: Session introduction, Vignette development & enrichment Step 4: Vignette analysis & constructing architecture of systems map Step 5: Augmenting architecture of systems map Results Each step of the participatory modeling approach resulted in artifacts that were valuable for both the communities and the research effort. Vignette construction resulted in narratives representing a spectrum of lived experiences, trajectories, and outcomes within a community. The collaborative analysis of vignettes yielded the Architecture of Systemic Factors map, that revealed how factors inter-relate to form a system in which lived experience of poverty occurs. A literature search provided an opportunity for the community to contextualize existing research about them using realities of lived experience. Conclusion This methodology showed that a community Knowledge Bearer can function as communicators and interpreters of their community’s knowledge base, can develop coherent narratives of lived experiences within which research and knowledge is contextualized, and can collaboratively construct conceptual mappings necessary for simulation modeling. This participatory modeling approach showed that even if there already exists a vast body of research about a community, collaborating with community gives context to that research and brings together disparate findings within narratives of lived experience.