Parkinson’s Disease: Doctors and Patients See It Differently

Parkinson’s Disease: What Do Doctors and Patients Think?

A new study has revealed differences in perspectives on disease treatment and values between patients with Parkinson’s disease and the doctors who provide therapy for the condition [1]. This article discusses how doctors and patients perceive the treatment of Parkinson’s disease differently. Scientists conducted a large study in the USA to find out how doctors and patients view this disease and its treatment. The results helped identify where misunderstandings arise and how treatment can be improved.

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What did you study?

Researchers wanted to know:

1. What symptoms of Parkinson’s disease bother patients the most?
2. How patients and doctors evaluate treatment
3. How well do doctors understand what is important for patients
4. How can treatment be made more convenient and effective

For this, doctors and patients answered questions in special questionnaires. Doctors filled out questionnaires about their patients, and patients about their feelings and impressions of the treatment.

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What did you learn?

1. Disease Symptoms

• Doctors believe that the most unpleasant symptoms of Parkinson’s disease are tremor, slowness of movement, and muscle stiffness. They often discuss these issues with patients.
• Patients, in addition to movement disorders, often mention other difficulties—fatigue, depression, and sleep problems. However, doctors discuss these symptoms less frequently.

2. Medications

• Both doctors and patients believe that medications help, but they do not always completely eliminate symptoms.
• Patients pay more attention to how medications are taken (for example, whether they are easy to take) than doctors do.

3. Quality of Life

• Doctors know that Parkinson’s disease significantly affects patients’ lives—it interferes with work, driving, and sports activities.
• However, patients more often talk about how the disease affects their mood and communication with others.

4. Patient Support

• Doctors believe that patients are aware of support groups and helpful resources. However, patients themselves say they lack information about this.

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Why is this important?

Research has shown that doctors and patients view illness and its treatment differently. For example:

• Doctors pay more attention to movement symptoms.
• Patients often talk about their mood and the comfort of treatment.

If doctors better understand what is important for patients, it will help make treatment more effective and comfortable.

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Research Background

Clinical care for patients with Parkinson’s disease is complex, and there may be differences in the perception of treatment, disease awareness, and impact on quality of life between the patient and the doctor. A relatively small number of studies have simultaneously analyzed the treatment perspectives of patients and doctors, but there has been less interest in comparing responses between surveyed patients and their doctors.

Researchers developed a questionnaire to identify areas of differences in understanding issues between patients and doctors, which they asked doctors treating patients with Parkinson’s disease to complete. Patients received a separate questionnaire to fill out.

Research Methods

To collect demographic and health data, the questionnaire included more subjective questions about treatment regimens. For example:

• Question about the impact of Parkinson’s on the patient’s quality of life
• Question about patient satisfaction with drug treatment
• A question about what a conversation between a patient and a doctor might be like.

The questionnaire was sent to 107 doctors, of whom 70 provided responses regarding 350 different patients. Patients answered questions in 71 surveys, of which 66 were completed from both the doctor’s and the patient’s perspectives, allowing for the most direct comparison.

Research Results

Doctors who participated in the survey were neurologists specialized in movement disorders, with work experience ranging from 3 to 60 years and more than 10 Parkinson’s disease patients per month. Patients had been observed by these doctors for over a year.

Many areas were identified where patients and doctors shared the same views:

• Need for medication therapy
• Dissatisfaction with the results of therapy using available pharmacological agents

For patients, the method of administering drug therapy was important, unlike doctors. However, patients and doctors agreed that Parkinson’s disease affects the quality of life of patients.

Motor and Non-Motor Symptoms

71% doctors noted that motor symptoms are the most unpleasant and limiting for patients:

• Tremor – 77%
• Instability while walking – 55%
• Bradykinesia – 53%

Among the non-motor symptoms, doctors identified:

• Cognitive impairments – 52%
• Psychotic disorders – 38%
• Sleep disorders – 36%

However, in the overall scale of importance, non-motor symptoms accounted for only 19% for doctors, whereas 71% of doctors voted for motor symptoms. Patients, on the other hand, more often asked questions about non-motor symptoms, which were more important to them in 61% of cases.

Impact on Quality of Life

62% 58% of patients and doctors noted the negative impact of Parkinson’s disease on quality of life. Patients highlighted the following limitations in their daily activities:

• Driving a car – 41%
• Decrease in sports hobbies – 24%
• Difficulties at work or study – 24%

Doctor Awareness

Doctors noted that:

• 67% know about drug therapy
• 61% aware of national guidelines for patient management
• 33% know about patient support groups

Despite this, 72% of neurologists recommended that patients join a support group.

This study is the first to attempt to understand and analyze the attitudes towards Parkinson’s disease among patients and treating physicians. It showed that life values in the groups differ significantly. The use of the study data should address gaps and improve the quality of medical care.

What do we do?

In our clinic, we are aware of this research and strive to take its results into account. Here’s what we do:

1. Discussing not only motor symptoms with patients , but also fatigue, mood, sleep, and other important aspects
2. Considering Patients’ Opinions on Medications , to make the treatment not only effective but also convenient
3. Providing Patients with More Information about support groups and useful resources
4. Listening to every patient , to better understand how the disease affects his life
5. And we also have a cutting-edge technology to eliminate tremor and rigidity.

We are confident that understanding patients is the key to successfully treating Parkinson’s disease. If you have any questions or requests, we are always ready to help!

Source: Hermanowicz, N., Castillo-Shell, M., McMean, A., Fishman, J. and D’Souza, J., 2019. Patient and physician perceptions of disease management in Parkinson’s disease: results from a US-based multicenter survey. Neuropsychiatric Disease and Treatment, pp.1487-1495.