Patients With Neurological Diseases Like Parkinson's Disease May Also be Suffering From a Secondary Condition They Didn't Know Existed, New Survey Shows

CHARLOTTE, N.C., Feb. 9, 2012 (GLOBE NEWSWIRE) -- Patients with neurological diseases, such as Parkinson's disease and multiple system atrophy (MSA), may be experiencing symptoms associated with the rare condition, neurogenic orthostatic hypotension (also known as Neurogenic OH or NOH). A new survey of these patients and their caregivers revealed that 92 percent of patients have experienced at least one symptom of Neurogenic OH, but only 24 percent have ever heard of the condition.¹ Potentially contributing to low awareness, about two-thirds of these patients indicated that they attribute these, and any new, symptoms to their primary condition, rather than a secondary condition like Neurogenic OH.¹ Additionally, patients surveyed estimate they spend as many as 8 hours per week, that's 17 days per year, managing these symptoms, many of which have a tremendous impact on their emotional well-being and ability to continue doing the things they enjoy most.¹

Chelsea Therapeutics and the Alliance for NOH Awareness are reporting the results of the survey, which was conducted by Kelton Research for Chelsea. The Alliance is a committee of patient advocates and medical experts dedicated to helping provide a voice for patients with or at risk for Neurogenic OH and their caregivers. Neurogenic OH is a condition that can affect people with existing neurologic diseases, such as Parkinson's, MSA, pure autonomic failure (PAF), non-diabetic autonomic neuropathy and dopamine beta hydroxylase deficiency.^{2, 3} Neurogenic OH symptoms include dizziness, lightheadedness, lack of concentration, vision problems, weakness, head/neck discomfort and fatigue caused by a sudden drop in blood pressure when standing up from a sitting or lying position.^{2, 4, 5}

 "Many people with these types of serious neurological diseases tend to assume all of their symptoms are tied to that one condition," says Stephen Greer, MD, FACC, Arkansas Cardiology. "Symptomatic Neurogenic OH affects more than three quarters of people with MSA and almost 20-30 percent of people with Parkinson's disease. Familiarizing themselves with related conditions, like Neurogenic OH, and keeping open lines of communications with their doctor about their symptoms could help patients improve their day-to-day life."

If patients and caregivers had to select the symptoms that are hardest for them to manage – physically and emotionally – most consider difficulty standing, frequent or unexplained falls, fainting and fatigue among the most difficult.¹ For many patients these symptoms do not just come and go. On average, patients experience their symptoms three times per day.¹ For patients who experience symptoms of Neurogenic OH, nearly all (96 percent) believe their life has changed in some way.¹ Many admit they find it difficult to get around (59 percent), are unable to do the things they want to do (55 percent), are forced to rely on others (52 percent), and have trouble being productive (52 percent).¹

Additional Survey Highlights

Caregivers fear they are not recognizing all of their loved ones' symptoms

Although caregivers estimate they spend nearly a full day every week (average of 22 hours) caring for a patient, many indicate they fear they are not doing enough to care for their loved ones.¹ For example, 78 percent of caregivers worry that they do not catch every symptom that is being experienced and, like the patients they care for, 70 percent would assume any new symptoms were attributed to their loved one's primary condition rather than an indication of a secondary condition.¹ Although a majority (91 percent) of caregivers believe they are well–informed about other conditions their loved ones may be susceptible to, only 22 percent have ever heard of Neurogenic OH.¹

Doctors are testing for NOH, but limited patient and caregiver awareness may impact communications  

Typically, doctors test for Neurogenic OH by taking a patient's blood pressure while sitting or lying down and then checking it again after they have been standing for one to three minutes to determine if there has been a significant drop in blood pressure upon standing.⁴ The survey results suggest that doctors are testing for Neurogenic OH by taking the standing blood pressure of close to half of patients surveyed, but the low awareness of the condition among patients indicates a need for more frequent and better doctor-patient communication.¹ A majority (87 percent) of patients admit they'd want to learn more about Neurogenic OH and would seek out the information from their physicians first.¹

In advanced recognition of MSA (March 2012) and Parkinson's Disease Awareness Months (April 2012), the Alliance for NOH Awareness encourages patients and their caregivers to seek information about Neurogenic OH and visit www.SignsofNOH.com, a Web site that provides comprehensive information about the condition.

About the Survey

This national survey was conducted by Kelton Research between October 24th and November 7th, 2011 via email invitation and an online survey. The survey reached 178 patients with Parkinson's disease, multiple system atrophy (MSA), pure autonomic failure (PAF), dopamine beta hydroxylase deficiency, or non-diabetic autonomic neuropathy and 180 caregivers of patients with these conditions. Results of any sample are subject to sampling variation. The magnitude of the variation is measurable and is affected by the number of interviews and the level of the percentages expressing the results. In this particular study, the chances are 95 in 100 that a survey result does not vary, plus or minus, by more than 7.3 percentage points (patients) and 7.3 percentage points (caregivers) from the result that would be obtained if interviews had been conducted with all persons in the universe represented by the sample.

About the Alliance for NOH Awareness

The mission of the Alliance for NOH Awareness is to raise awareness for neurogenic orthostatic hypotension (also known as Neurogenic OH or NOH), a condition associated with a sudden, potentially dangerous, fall in blood pressure when standing from a sitting or lying position. Through the creation of this Alliance, Chelsea Therapeutics hopes to bring together a wide variety of stakeholders with condition expertise, including health care practitioners, patient advocates and caregivers to support those affected by or at risk for Neurogenic OH. For more information on the signs of Neurogenic OH and about the Alliance, including list of members, visit www.SignsofNOH.com.

About Chelsea Therapeutics

Chelsea Therapeutics CHTP is a biopharmaceutical development company that acquires and develops innovative products for the treatment of a variety of human diseases, including central nervous system, rheumatoid arthritis, psoriasis and other inflammatory diseases. Founded in 2004 around its library of unique anti-inflammatory and autoimmune technology, Chelsea has further expanded its product development portfolio with early- and late-stage candidates that leverage the company's development expertise and accelerate the company's drug commercialization efforts. For more information about the company, visit www.chelseatherapeutics.com.

Videos accompanying this release are available at http://www.globenewswire.com/newsroom/news.html?d=245339

The Neurogenic Orthostatic Hypotension Fact Sheet is available at http://media.globenewswire.com/cache/5954/file/12487.pdf

¹ An online survey of 178 Americans suffering from Parkinson's Disease, Shy Drager Syndrome (MSA), Pure Autonomic Failure (PAF), Dopamine Beta Hydroxylase Deficiency or Non-Diabetic Autonomic Neuropathy, and 180 caregivers of patients with these conditions.

² The Consensus Committee of the American Autonomic Society and the American Academy of Neurology. Consensus statement on the definition of orthostatic hypotension, pure autonomic failure, and multiple system atrophy. Neurology. 1996;46(5):1470.

³ Bradley JG, Davis KA. Orthostatic hypotension. Am Fam Physician. 2003;68(12):2393-2398. 

⁴ Mayo Clinic. Orthostatic hypotension (postural hypotension). http://www.mayoclinic.com/health/orthostatic-hypotension/DS00997/METHOD=print. Accessed August 2, 2011.

⁵ Freeman R. Neurogenic orthostatic hypotension. N Engl J Med. 2008;358(6):615-624.