Younger Parkinson’s patients show strong interest in clinical trial participation and high comfort with digital research technology.

Parkinson’s disease (PD), a lifelong and progressive neurological condition, affects about one million people in the United States alone. Primary PD symptoms involve motor impairments, like slowness of movement, gait problems, rigidity, and tremors, as well as significant “invisible” non-motor symptoms, cognitive problems, anxiety, depression, sleep disorders, and digestive problems, which can be disabling. Within PD’s wide range of symptoms, each patient experiences a unique subset of symptoms and disease progression. And with no cure or therapy available to stop or slow the progression of the disease, clinical research remains an important pathway to prevention and treatment.

To better understand the sentiment of patients with PD toward both their specific symptoms and their attitudes about clinical trials, SubjectWell fielded a survey from November 2 to 5, 2021, to 217 patients with PD. Our findings from the survey, especially around patient comfort with technology, are particularly relevant as the number of decentralized and hybrid clinical trials continue to rise.

Respondents are more likely to participate in a trial focusing on the treatment of Parkinson’s motor symptoms.

Considering the uniqueness of the PD patient journey, we explored how the clinical trial’s focus could impact patient interest. Respondents were asked if they would be more likely to participate in a trial for (1) the treatment of PD, (2) the treatment of motor symptoms caused by PD (e.g., slowness of movement, gait problems, rigidity, tremors), or (3) the treatment of non-motor symptoms caused by PD (e.g., cognitive problems, anxiety, depression, sleep disorders, digestive problems).

Respondents’ likelihood of participating in a clinical trial for the treatment of PD:

66% are likely to participate in a trial for non-motor symptoms caused by Parkinson’s

69% are likely to participate in a trial for Parkinson’s

77% are likely to participate in a trial for motor symptoms caused by Parkinson’s

 

Respondents’ age dramatically impacted their interest in PD clinical trial participation.

Younger respondents were more likely to report high interest in trial participation. Of those 59 and younger, 91% responded with a high likelihood of participation in a trial for PD, significantly higher than all older age groups.

Respondents’ likelihood of participating in a clinical trial for the treatment of PD:

  • Age 59 and younger
  • Age 60–69
  • Age 70–79
  • Age 80 and older
91%
74%
65%
46%

91% Age 59 and younger vs 74% Age 60–69 vs 65% Age 70–79 vs 46% Age 80 and older

 

Motivations for clinical trial participation are similar across age groups.

When we looked at the motivators for clinical trial participation, we found similar responses across age groups. The 80 and older respondent group was the exception, rating all motivators much lower than younger respondents.

The following reasons for clinical trial participation were rated highest:

84% of respondents are motivated to help others who live with their condition and to advance medicine

81% of respondents are motivated to obtain better treatment

78% of respondents are motivated by a doctor’s recommendation

 

Overall, Parkinson’s patients are comfortable using digital technology.

Respondents were asked about their comfort level completing a variety of digital tasks on a smartphone or digital tablet as part of a daily electronic diary. A majority of respondents (72%) rated highly their comfort level with digital tasks.

The following digital tasks were rated with a high comfort level by patients:

78% of respondents are very comfortable wearing an activity tracker like a Fitbit, Apple Watch, or other wearable device to track their health

76% of respondents are very comfortable texting or emailing a study coordinator with a question

71% of respondents are very comfortable completing a digital questionnaire

71% of respondents are very comfortable recording their voice

 

However, respondents in older age groups have significantly lower comfort levels with using digital technology.

The survey found that as the respondents’ ages increased, their comfort level across all digital tasks decreased. This trend was most dramatically shown among the youngest and oldest age groups regarding comfort with completing a digital questionnaire and setting a digital alarm.

Percent of respondents who rated completing a digital questionnaire as very comfortable:

  • Age 59 and younger
  • Age 60–69
  • Age 70–79
  • Age 80 and older
97%
75%
71%
31%

97% Age 59 and younger vs 75% Age 60–69 vs 71% Age 70–79 vs 31% Age 80 and older

 

Percent of respondents that rated setting a digital alarm as very comfortable:

  • Age 59 and younger
  • Age 60–69
  • Age 70–79
  • Age 80 and older
91%
69%
66%
39%

91% Age 59 and younger vs 69% Age 60–69 vs 66% Age 70–79 vs 39% Age 80 and older

Considering possible hand tremor symptoms among PD patients, we followed up by asking respondents if their hand tremors caused trouble when using a touchscreen on a smartphone or tablet in the past month. Only 40% of respondents stated that hand tremors caused moderate or severe trouble while using a touchscreen.

 

The respondent’s age significantly impacted their likelihood of Parkinson’s trial participation and comfort with digital technology.

Unsurprisingly, younger patients with PD rated high comfort levels with the use of digital technology associated with modern at-home data collection options. More remarkably, this survey data demonstrated another clear trend in younger PD patients – they have a higher likelihood of participating in a Parkinson’s clinical trial.

Be sure to check back here for more information related to patient recruitment and survey findings.


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