People with Parkinson's Disease: What Symptoms Do They Most Want to Improve and How Does This Change with Disease Duration?

Abstract

Background: Parkinson's disease (PD) is a neurodegenerative condition with a diverse and complex pattern of motor and non-motor symptoms which change over time with disease duration.

Objective: The aims of the present study were to discover what symptoms matter most to people with the condition and to examine how these priorities change with disease duration.

Methods: A simple free-text online survey (using SmartSurvey) was developed by Parkinson's UK, which asked participants to identify up to three aspects of the condition they would most like to see improvement in.

Results: 790 people participated reporting 2,295 issues related to PD which were grouped into 24 broad symptom domains. Of these, 1,358 (59.1%) were categorised as motor symptoms, 859 (37.4%) as non-motor issues and 78 (3.4%) as medication problems. This study reveals how certain features of PD become more or less important to patients as the condition progresses. Non-motor symptoms were highly cited from the very earliest stages of PD. Problems with walking, balance and falls, speech problems, freezing and dyskinesia become increasingly important as the condition progresses whereas tremor, stiffness and psychological health become decreasingly important as the condition progresses.

Conclusions: The data suggest that the priorities of people affected by PD for improving life are personal and change with duration of the condition. These findings have implications for developing person-centred management and care, as well as for directing future research to improve quality of life.

Keywords: Parkinson’s disease; patient priorities; progression; quality of life; symptoms.

Fig. 3

Symptoms of Parkinson’s disease that were reported as a priority for improvement less frequently with disease duration. Percentages show the respondents with a duration of < 2 years (n = 134), 2–5 years (n = 313), 6–10 years (n = 209) and 11 + years (n = 126) reporting (a) tremor, (b) stiffness, and (c) psychological health within their 3 priority areas. Statistical significant between duration groups (Dunn’s multiple comparisons tests) are presented as asterisks: ^*p < 0.05; ^**p < 0.01; ^***p < 0.001; ^****p < 0.0001. Responses from bereaved partners, family members or friends have been excluded as no duration data is available.

Fig. 4

Symptoms or side effects of Parkinson’s disease that were reported as a priority for improvement more frequently with disease duration. Percentages show the respondents with a duration of <2 years (n = 134), 2–5 years (n = 313), 6–10 years (n = 209) and 11 + years (n = 126) reporting (a) balance and falls, (b) walking, (c) speech, (d) freezing, (e) dyskinesia, and (f) medication wearing-off within their 3 priority areas. Statistical significant between duration groups (Dunn’s multiple comparisons tests) are presented as asterisks: ^*p < 0.05; ^**p < 0.01; ^***p < 0.001; ^****p < 0.0001. Responses from bereaved partners, family members or friends have been excluded as no duration data is available.

Fig. 1

Symptoms or side effects reported in response to the question “what aspect of Parkinson’s do you most wish to see improvement in?” presented by priority. Percentages show the relative frequency of symptoms or side effects reported within primary responses (n = 848), secondary responses (n = 779), and tertiary responses (n = 668).

Fig. 2

Top 10 most frequently reported symptoms or side effects respondents wished to see an improvement in by disease duration. The area of the boxes show the relative frequency of the 10 most reported symptoms or side effects respondents diagnosed for (a) <2 years (n = 409), (b) 2–5 years (n = 648), (c) 5–10 years (n = 327) and (d) 11 + years (n = 86), wished to see an improvement in, where n is the total number of categorizable, symptoms or side effects reported. Responses from bereaved partners, family members or friends have been excluded as no duration data is available.