Our research team surveyed research participants from the Prechter Longitudinal Study of Bipolar Disorder in 2017-2018, asking them about their experiences participating in this study, what they liked best and what they liked least about participating. We asked about the three main components of this study:
1) interviews with the study team
2) bimonthly questionnaires
3) neuropsychological testing
We also included open-ended options so that participants could write about why they liked/disliked certain components. The survey contained 5 questions with a Likert Scale format and options to write in comments. When they completed the survey, the respondents were at various time points over the course of enrollment.
A total of 556 (62%) responded.
Here is what they said:
85% said that their experience in the study has been “Mostly Positive,” whereas 1% said their experience has been “Mostly Negative.” About 14% were “Neutral.”
Out of the three main components of the study, the majority of individuals liked the interviews with the study team the best (48%), followed by neuropsychological testing (20%), and then bimonthly questionnaires (19%). When asked about what they liked least, 50% said they liked filling out the bimonthly questionnaires the least, followed by neuropsychological testing (28%). Out of those with a mental health diagnosis, 86% felt like the study captures the important elements of their illness, how they manage it, and how it impacts their life.
A summary of the survey is below:
1. The experience of being in the Bipolar Longitudinal study has been:
2. The part I like best about this study is:
3. The part I like least about this study is:
4. The study captures the important elements of my illness, how I manage it, and how it impacts my life.
5. Here are some comments participants made in response to the question, "Is there anything else you would like to tell us?:"
“You make it easy to participate and everyone has been lovely. Thank you!”
"Hope my small contribution may benefit others."
"This study has been very interesting and I have enjoyed being in the program."
"I appreciate the fact that this study has been extended for years. I think this adds great value to the data you collect and the hope and care you can provide to bipolar patients."
"This is such important research for mental health and I feel fortunate to have contributed! I have been involved in this study for many years and appreciate all the research team has done to make staying involved easy for the participants."