Patients, families differ on views of Parkinson’s: Symptom survey
Symptom significance changes with disease progression
People with Parkinson’s disease see movement-related symptoms like walking, balance, and tremor as the most bothersome aspects of their disease, while family members are more concerned about physical impacts like mobility and psychosocial aspects like interpersonal interactions and independence, according to a large-scale international survey.
At later stages of the disease, there was less prioritization of tremors and more focus on mobility, involuntary muscle movements, freezing of gait, and speech or communication symptoms, the researchers found.
“We conclude important differences exist between family and patient perspectives of what matters, and change over time with longer duration of disease,” the researchers wrote in the study, “Understanding what aspects of Parkinson’s disease matter most to patients and families,” published in Scientific Reports. “Understanding what matters to people with Parkinson’s and their family is essential to derive relevant clinical outcome measures and guide clinical care,” they added.
Parkinson’s disease can cause a wide array of symptoms, including classic motor symptoms like resting tremors, rigidity, postural instability, and bradykinesia (slowness of movement). Patients may also experience issues with coordination, speaking/communication, and freezing.
Diverse nonmotor symptoms can range from depression and anxiety to sleeping problems and cognitive changes, such as issues with memory, language, and thinking. As Parkinson’s disease progresses, symptoms tend to worsen over time.
Symptom survey identifies 200 factors
The researchers gathered data from a qualitative content analysis of an online survey done by Parkinson’s UK involving 677 Parkinson’s patients and 103 family members. A family member was defined as a spouse, partner, or child of the patient.
The survey posed two open-ended questions to participants regarding Parkinson’s disease: identify up to three areas of improvement that would significantly impact their lives, and explain the reasons for selecting those areas.
After analyzing the responses, researchers identified 200 distinct factors that patients and their families deemed essential to the Parkinson’s disease experience.
Patients consistently identified movement-related symptoms as the most concerning throughout all stages of the disease. Within this category, tremor prioritization evolved as the condition progressed. Tremors were the most distressing symptom for 45.2% of patients diagnosed within the past two years, but this number dropped to only 11% for patients living with the disease for more than two decades.
The most commonly mentioned movement symptoms were difficulties with walking and balance and slow movements.
“Getting around is my biggest problem and it impacts my whole life, from getting around the house to getting out and about and socializing,” one person with Parkinson’s said.
In later stages, patients were more concerned with involuntary muscle movements and freezing of gait.
Nearly 50% of Parkinson’s patients cited mobility impacts, including limited ability to exercise and engage in sports and threats to safety.
Patients also reported bothersome symptoms such as fatigue, mood changes, pain, changes to thinking and speech difficulties, with 27.4% noting these affected their relationship with others. Approximately 23% reported decreased interest in pleasurable activities and social life. The frequency of reported impact increased over time in these areas.
“By the time I have formed words, others have moved on and I often do not get a chance to speak,” one patient said.
Nearly half (45.5%) of Parkinson’s patients cited the overall “increased work of living,” reporting it takes longer to do things that were previously automatic. Personal coping (38.4%) and personal self-concept (31.5%) were also noted as significant.
Some common ground
While family members shared many of patients’ top concerns, some differences emerged between the two groups.
Family members expressed substantially more concerns about safety that increased with time, growing from 20% when patients were in the early stages to 50% after more than 11 years. The biggest differences between the concerns of patients and family members were observed at 11-20 years after diagnosis.
Psychosocial impacts were also more commonly reported by family (80.9%) than Parkinson’s patients (65.7%). In the two- to five-year period after diagnosis, families reported significantly more concerns about personality changes.
Family members were also more likely to cite mood changes, low motivation or apathy, and anxiety at higher rates than patients.
While both groups noted challenges in interpersonal interactions, these were reported significantly more often at nearly all stages of disease by family than by patients “There is an urgent need to assure that outcome measures for clinical trials align with … the needs of the patient community,” the researchers wrote. “Data are also needed to understand whether what is important to the individual with [Parkinson’s] corresponds with what is important to their loved ones, who are also deeply affected by disease processes.”
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