Empowering Providers and Patients to Gain Control of an Underdiagnosed Disorder Often Seen with Parkinson’s Disease
With an unwavering commitment to supporting those affected by brain diseases, Lundbeck offers tools for patients and health care providers to identify symptoms of neurogenic orthostatic hypotension (nOH), a challenging and often underdiagnosed condition in patients with Parkinson’s disease.1
A patient experiences dizziness and blurred vision upon standing.2,3 If this patient has Parkinson’s disease, the provider may attribute these symptoms to her medications or mild orthostatic hypotension (OH).4 However, they may be the result of neurogenic orthostatic hypotension (nOH), a condition that causes abnormally low blood pressure after standing.5
nOH is commonly seen in patients diagnosed with Parkinson’s disease, multiple system atrophy (MSA), or pure autonomic failure.2 In fact, an estimated 18% of patients with Parkinson’s disease and 81% of patients with MSA experience nOH symptoms.6 However, nOH is often under-recognized in the clinical setting.1
Experiencing symptoms of nOH, such as feeling suddenly dizzy or lightheaded, while conducting activities of daily living could put patients at risk of serious consequences such as falling.4,7,8 Patients experiencing such symptoms may reduce their daily activities,4,7,9 and some can have reduced quality of life.4 But that does not have to happen.
As a leader in brain health with a 70+-year history of tackling the most challenging brain diseases, Lundbeck is committed to addressing the unmet need in complex disorders like Parkinson’s disease. Across the brain health space—including in Parkinson’s—Lundbeck is advancing solutions to address symptoms that patients themselves identify as most bothersome. Working alongside the patient and provider community, Lundbeck is raising awareness of conditions like nOH, including its warning signs and treatment options.
How does nOH impact patients with Parkinson’s disease?
The impact of nOH symptoms in patients with Parkinson’s disease can be substantial.4,7-9 In fact, according to one survey, 44% of surveyed patients with Parkinson’s disease agreed that their nOH symptoms were more troublesome than their motor symptoms.1
That study, published in BMC Neurology, surveyed 363 patients with Parkinson’s, MSA, or pure autonomic failure, as well as 128 caregivers.1 The most frequently reported symptoms of nOH were dizziness or lightheadedness, fatigue when standing, and difficulty walking. More than one-third of respondents reported experiencing those symptoms every time or multiple times per day upon sitting up, standing up, standing for a long period of time, or changing in position. A large majority of respondents—87% of surveyed patients and 95% of surveyed caregivers—reported that nOH symptoms had an overall negative impact on patients’ ability to perform everyday activities,1 with 40% of patients and 65% of caregivers reporting that nOH symptoms drastically changed the patient’s life.
Despite the prevalence of nOH symptoms among the respondents—and the reported impact—a formal diagnosis of OH or nOH was reported by only 36% of patients and 16% of caregivers.1
Even when the topic was broached, diagnosis was not straightforward: of patients with a formal nOH or OH diagnosis, 43% saw three or more providers before receiving a diagnosis, and half were frustrated by the process.
Why is it important for providers to recognize signs of nOH?
Raising providers’ awareness of pathophysiology and diagnostic criteria could help providers to better support their patients. That’s because providers cannot always rely on patients to share their own experiences with symptoms of nOH. In the BMC Neurology study discussed above, 60% of patients and 53% of caregivers agreed that patients often hid or minimized the symptoms, even though those symptoms caused anxiety and patients often struggled to get the symptoms under control.1 More than half did not initiate discussions with providers unless the symptoms were severe.
Even when the topic was broached, diagnosis was not straightforward: of patients with a formal nOH or OH diagnosis, 43% saw three or more providers before receiving a diagnosis, and half were frustrated by the process. However, 70% of patients felt that their symptoms improved after diagnosis.1
Management of nOH can include interventions such as adjusting Parkinson’s disease medications, increasing fluid intake, increasing salt intake, using compression garments, elevating the head of the bed, and avoiding hot environments.5 Sometimes medications also can be prescribed to address the symptoms.5
Supporting providers in understanding nOH
To support health care providers in their efforts to better understand and manage nOH, Lundbeck created nohmattershcp.com. The website contains information about how nOH affects patients and why diagnosing nOH can make a difference in a patient’s quality of life. Although determining the cause of nOH symptoms can be challenging, it is possible to distinguish between nOH and non-neurogenic forms of OH. The site offers guidance on this topic, including ways to diagnose nOH via screening questions, monitoring, and elimination of other possible causes of symptoms. The site also provides information on managing symptoms. Armed with this knowledge, health care providers can proactively ask more questions of patients during office visits to identify potential symptoms, even if the patient does not bring up the symptoms themselves.
For patients, nohmatters.com offers explanations about the condition and its effects, a symptom checker, tips for managing the condition, advice for how to talk to a health care provider about it, connections to a directory of appropriate specialists, and stories from people living with nOH.
Brain Health Pioneers
The nohmattershcp.com and nohmatters.com websites help providers and patients to understand that nOH doesn’t have to be a part of living with Parkinson’s disease or MSA. This patient-centric commitment is a hallmark of Lundbeck’s research and advocacy programs. Established in Denmark in 1915, Lundbeck is the only global biopharmaceutical company focused solely on the brain. While others have abandoned the central nervous system space because of the risk and high failure rate, Lundbeck maintains an unwavering commitment to support people impacted by brain diseases. Lundbeck is dedicated to advancing innovative therapies that put patient-defined needs at the center, and patients recognize that authentic commitment: U.S. patient groups ranked the company #1 in corporate reputation for five consecutive years.
At the leading edge of brain science, Lundbeck has research facilities in Denmark, California, and Washington, and today is developing a number of new medicines for the treatment of brain diseases. Research programs are exploring antibody therapies as disease-modifying treatments for Alzheimer’s disease, Parkinson’s disease, and migraine; non-opioid treatment for pain; treatment for agitation in Alzheimer’s disease; and additional innovative treatments for psychiatric and neurological conditions. Lundbeck also collaborates with pioneering organizations like IBM’s Watson Health to accelerate understanding of the underlying biology of brain diseases, and the Gladstone Institutes to study and identify therapeutic candidates for neurological diseases.
A long-time pioneer in brain health, Lundbeck is a trusted partner to the Parkinson’s disease community. To learn more about nOH and Lundbeck’s efforts to raise awareness of this condition, visit nohmattershcp.com.
1. Claassen DO, Adler CH, Hewitt LA, Gibbons C. Characterization of the symptoms of neurogenic orthostatic hypotension and their impact from a survey of patients and caregivers. BMC Neurol. 2018;18(1):125. doi:10.1186/s12883-018-1129-x
2. Metzler M, Duerr S, Granata R, et al. Neurogenic orthostatic hypotension: pathophysiology, evaluation, and management. J Neurol. 2013;260:2212-2219.
3. Shibao C, Lipsitz LA, Biaggioni I, on behalf of the American Society of Hypertension Writing Group. Evaluation and treatment of orthostatic hypotension. J Am Soc Hypertens. 2013;7(4):317–324. doi:10.1016/j.jash.2013.04.006
4. Low PA. Neurogenic orthostatic hypotension: pathophysiology and diagnosis. Am J Manag Care. 2015;21(13 Suppl):s248-57
5. Gibbons CH, Schmidt P, Biaggioni I, et al. The recommendations of a consensus panel for the screening, diagnosis, and treatment of neurogenic orthostatic hypotension and associated supine hypertension. J Neurol. 2017; 264(8): 1567–1582. doi:10.1007/s00415-016-8375-x
6. Ha AD, Brown CH, York MK, Jankovic J. The prevalence of symptomatic orthostatic hypotension in patients with Parkinson’s disease and atypical parkinsonism. Parkinsonism Relat Disord. 2011;17(8):625-8. doi:10.1016/j.parkreldis.2011.05.020
7. Freeman R, Wieling W, Axelrod FB, et al. Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Clin Auton Res. 2011;21(2):69-72.
8. Rascol O, Perez-Lloret S, Damier P, et al. Falls in ambulatory non-demented patients with Parkinson's disease. J Neural Transm (Vienna). 2015;122(10):1447-1455.
9. Palma JA, Kaufmann H. Epidemioloigy, diagnosis, and management of neurogenic orthostatic hypotension. Mov Disord Clin Pract. 2017;4(3):298-308.
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