As Parkinson’s disease progresses, the symptoms that are most bothersome to patients change, a survey study reports.
Specifically, hallmark motor symptoms like dyskinesia (involuntary movements) and those affecting walking, balance and speech were mentioned most by those with longer disease duration, while tremor ranked high among people at earlier stages.
Parkinson’s is characterized by a mix of motor symptoms, and non-motor symptoms like fatigue. While these symptoms are common across patients, every individual’s experience with them differs.
Understanding which symptoms most bother people with Parkinson’s is important, as it can help guide care and determine directions for future research.
Researchers with Parkinson’s UK and other institutions conducted an online survey of people affected by Parkinson’s, including patients, caregivers, and family members.
Respondents were asked a few relevant demographic questions, including age and disease duration.
Then, they were asked to give up to three answers to one broad question: “What particular aspects of your Parkinson’s would, if improved, make the biggest difference to your life?”
A total of 790 people completed the survey, giving a total of 2,443 different answers to this question.
These answers were assessed by a steering committee, which consisted of three Parkinson’s UK staff members and six people associated with the group (five Parkinson’s patients and one partner of a patient).
“Many responses were ambiguous and required extensive discussion to agree how best to categorise them,” the researchers wrote. “This was why it was so important to involve people with PD [Parkinson’s disease] in this interpretation exercise.”
Of the answers, 2,295 related to specific symptoms or medication issues: 1,358 were categorized as motor symptoms, 859 as non-motor symptoms, and 78 as issues with treatment.
Most of what remained fell outside the intended scope of the survey, such as the need for betters treatments and care, and a desire to maintain independence.
“Although these responses did not directly address the primary question, the project steering group felt that it was important that these responses be reported to highlight the urgency of research to address these issues,” the researchers wrote.
The survey revealed several notable findings. For example, respondents tended to rank motor symptoms as their primary priority in this survey, especially tremor, which was the most frequently symptom that respondents wished to see an improvement in.
Non-motor symptoms were often secondary or tertiary.
Some symptoms — specifically tremor, stiffness, and psychological health — were significantly reported more frequently among people who had a shorter disease duration (two years or less), compared to those with a longer disease duration.
Issues more important with a longer duration included difficulty walking, balance problems, speech impairment, freezing, dyskinesia, and medication “off” periods (when its benefits wear off but another dose cannot yet be taken).
Generally, motor symptoms, with the exception of tremor, were major concerns for people with longer disease duration. Tremor, the researchers noted, tends to progress more slowly than do other motor symptoms, so it may be “overtaken in importance” as the disease advances and other issues become more impactful.
Non-motor symptoms other than psychological health, covering fatigue and lack of energy, sleep and cognitive problems, and pain sensations, were frequently reported in people with both long and short disease durations.
“Where our data adds to existing knowledge is in highlighting the urgent need for better recognition, treatment and management of non-motor symptoms for people living with the condition, particularly in the very early stages,” the researchers wrote.
They also highlight the need for individualized care of people with Parkinson’s, as well as the need for ongoing symptom assessment as the disease progresses.
“We hope these data will stimulate further research to improve treatments, care and support for people with PD that addresses these important aspects of the condition,” the researchers concluded.
“We also hope that these research efforts will involve people affected by the condition, their partners and families in developing, designing and conducting these studies to ensure they are truly focused on what matters most to those living with PD,” they added.
The study’s main limitation was the simplicity of the survey, which meant little demographic and clinical data were collected. The researchers also noted that the surveyed population (the Parkinson’s UK Research Support Network) tends to be disproportionately young, white, and well-educated, so responses may not be reflective of all people with Parkinson’s.
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