Survey Describes How Patients Think, Talk About OFF Periods in Parkinson

OFF periods, where medications stop working in Parkinson disease (PD) and symptoms return, are common, although the experiences of individual patients vary. Survey data published earlier this year, including free-text responses, provides insight into what patients think about these episodes, which are known to degrade quality of life.

Participants were drawn from a subset of the Fox Insight study, which included patients with self-reported PD who were taking 1 or more medications for the disease. Those who were invited to continue with the survey answered “yes” to the following question: “We refer to the periods during which symptoms are better controlled as ON, and periods during which symptoms return as OFF. Based on this definition of OFF, do you experience OFF periods?”

If they answered yes, patients were asked how they talk about those periods; how they describe the experience of being in those OFF periods; triggers that might precipitate an OFF period; and information about self-management strategies.

Depending on the question, answer choices included both multiple-choice and free-text responses. Descriptive statistics summarized multiple-choice responses, and free-text responses were classified into themes through iterative discussion by 3 movement disorders specialists.

A total of 2110 participants (52.4% male) completed the survey. Respondents reported spending about 25% of their waking hours in the OFF state, and their answers indicate that the issues that arise in OFF periods are complex.

Motor symptoms included tremor (n = 1038, 49.2%), followed by gait changes (n = 535, 25.4%) and rigidity (n = 430, 20.4%).

Nonmotor symptoms included pain and other sensory issues, affecting about 25%. There was also a sense of lower mood, lower cognition, and feeling unwell.

Stress was the most common trigger (n = 920, 61.4%) out of 1498 specific triggers for OFF symptoms, the authors reported, followed by anxiety/depression (n = 476, 31.8%) and tiredness/fatigue (n = 351, 23.4%).

Out of 1416 answers to questions about coping strategies, the most common was exercise (n = 678, 47.9%), followed by taking a break (n = 504, 35.6%), and meditation (n = 276, 19.5%).

Patients did not frequently mention the use of non-levodopa medications to cope with OFF periods; when they did, the most common were cannabinoids, both CBD and THC, by 3.4%. Another 1.3% took anti-anxiety medications.

These findings could be used to develop new strategies for helping patients manage OFF periods, the authors noted. For instance, the most commonly reported coping technique was exercise, a method that is supported by other research, but the lack of discussions with providers about exercise is commonly cited by patients as an obstacle.

Reference

Mantri S, Lepore M, Edison B, et al. The experience of OFF periods in Parkinson’s disease: Descriptions, triggers, and alleviating factors. J Patient Cent Res Rev. Published online July 19, 2021. doi:10.17294/2330-0698.1836