Survey results: Rallying 2015

Diverse Hands Holding The Word Symptoms492 people with Parkinson’s (PwPs) completed our 2015 Rallying to the Challenge survey which explored which aspects of Parkinson's are most important to individual PwPs with regards to quality of life and how these aspects can be measured.

Although many of the top 10 most reported symptoms that affect quality of life appear to be classic movement symptoms of Parkinson’s, interestingly, the results also show a significant impact of non-movement symptoms for many PwPs. 92% of respondents reported at least one non-movement symptom in their top five and 45% of respondents reported a non-movement symptom as the symptom which most affects their quality of life.

407 respondents shared their top 5 symptoms which most impact on their quality of life (in order of importance). Lack of energy was the most reported symptom, with a massive 45% of respondents identifying it in their top 5 symptoms that most impact their quality of life. Balance and falling (31%), slowness of movement (30%), tremor (28%), stiffness and rigidity (23%), speech issues (21%), pain (21%), urinary urgency (18%), memory issues (17%) and difficulty sleeping (16%) conclude the top 10 most reported symptoms that impact quality of life. No one person reported the same top 5 symptoms.

The results from the survey found that the majority of all respondents (83%) are interested in recording information about their Parkinson’s to monitor well-being, however currently only 36% of all respondents are currently doing so.

In the table below are the top 10 most reported movement and non-movement symptoms with the percentage of respondents that reported them to affect their quality of life.

 

Movement Symptoms:

Non-movement Symptoms:

Symptom

Percentage

Symptom

Percentage

Balance

31%

Lack of energy 45%
Slowness of movement

30%

Pain 21%

Tremor

28%

Urinary urgency 18%

Stiffness & Rigidity

23%

Memory issues 16%

Speech issues

21%

Difficulty sleeping 16%

Difficulties walking

16%

Anxiety 13%

Freezing

13%

Constipation 13%

Dystonia

12%

Depression 10%

Difficulty swallowing

5%

Incontinence 9%

Lack of dexterity & fine motor movement

5% Erectile dysfunction

6%

 

You can read about the survey in more detail in an article published in the Journal of Parkinson’s Disease.