Daniel M. Keller, PhD

June 21, 2016

BERLIN — Almost all patients with Parkinson's disease experience nonmotor symptoms related to their disease that cause significant distress and reduced quality of life, but at least half of these patients do not report them to their healthcare providers for a variety of reasons, a study shows. Impediments to reporting these symptoms appear to be related more to the symptom than to the specific patient.

"The major barriers that we found are just accepting symptoms as part of everyday life and really assuming that nothing can be done about it, not believing that there are any effective treatments, and not understanding that nonmotor symptoms are actually related to Parkinson's disease in any way," health psychologist Catherine Hurt, PhD, from the School of Health Sciences at City University London, United Kingdom, told Medscape Medical News here at the 20th International Congress of Parkinson's Disease and Movement Disorders.

The study involved 358 patients with idiopathic Parkinson's disease. About half were male, the mean age of the entire cohort was 66.3 years (range, 51 - 83 years), the mean Personal Activities of Daily Living score was 2.3 (range, 1-5), and patients had a mean disease duration of 5.9 years (range 1-33 years).

Patients completed a Non-motor Symptom Questionnaire and a questionnaire about barriers to seeking help for nonmotor symptoms.

Nonmotor Symptoms Frequent

The most common symptom was urinary urgency, experienced by 65% of patients. The most frequently unreported symptom, in 52% of patients, was lower libido.

Other frequent nonmotor symptoms experienced by patients were nocturia (reported by more than 200 patients), nausea, constipation, unexplained pain, insomnia, and restless legs (each more than 150 patients), as well as urinary dribbling, swallowing difficulties, incomplete bowel emptying, difficult sex, vivid dreams, and acting out dreams (each more than 100 patients).

Some of the greatest concordance between the experience of nonmotor symptoms and not declaring them occurred for lower libido, higher libido, and difficult sex. If nausea, constipation, bowel incontinence, urinary urgency, nocturia, unexplained pain, insomnia, daytime sleepiness, vivid dreams, acting out dreams, or restless legs occurred, patients were fairly apt to report them.

From a series of Generalized Estimating Equations, several barriers emerged that were associated with nonreporting of individual symptoms. One interesting one was a patient's fear that his/her medication would be changed because of the symptom. When individual patient factors were added to the equations as an interaction term, there was no significant association with any of the barriers.

Table. Barriers to Reporting Nonmotor Symptoms in Parkinson's

Barrier Unreported Symptoms P
Acceptance Difficulty having sex, lower libido, unexplained pain, urinary urgency, nocturia, incomplete bowel emptying, constipation <.01
Believing no available treatment Difficulty having sex, restless legs, unexplained pain, urinary urgency <.01
Embarrassment Difficulty having sex <.01
Change in medication Unexplained pain <.01
Making a fuss Unexplained pain <.01
Believing symptoms unrelated to Parkinson's disease Unexplained pain, urinary urgency <.01

The next phase of the program will be to develop an online-based intervention program to be made available possibly through existing websites that patients with Parkinson's disease use in their own homes. Intervention strategies include standardizing information, providing information regarding treatment efficacy for certain symptoms, and improving communication skills. Dr Hurt said the researchers also plan to investigate whether a patient's age affects one's reporting nonmotor symptoms.

Per Odin, MD, PhD, from the Klinikum Bremerhaven, Germany, who led a poster tour including this study, commented to Medscape Medical News that it is also his experience that nonmotor symptoms are common in patients with Parkinson's disease and are commonly unreported.

Using the Non-motor Symptom Questionnaire in practice, he said, "You realize that you would probably have missed many of the nonmotor symptoms if you had not done it. It's interesting to see the reasons why we are missing it. With that knowledge, we can also maybe get better answers what the individual patient has."

Dr Odin said there has been discussion whether the Non-motor Symptom Questionnaire should be used earlier in the disease, "because it reminds the patient that he can get into a lot of trouble later on."

Furthermore, nonmotor symptoms are very common in early disease and are important for quality of life.

"You want to find the nonmotor symptoms early to be able to treat them effectively early, and thereby contribute to better quality of life," he said. He cited depression as being almost as common early in the disease as later on, and noted that it can greatly affect quality of life.

The study was funded by Parkinson's UK. Dr Hurt and Dr Odin have disclosed no relevant financial relationships.

20th International Congress of Parkinson's Disease and Movement Disorders: Abstract 387. Presented June 20, 2016.

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