Table 1 Details of responses of people living with Parkinson’s (n = 282) to PPI survey
Q. Do you think people would be more willing to participate if the study involved taking [dance] classes once or twice per week? | Once per week (141, 50%) |
Twice per week (41, 14.5%) | |
Either (100, 35.5%) | |
Q. What would you expect to be the main barriers to participation in this research? Please select up to 2 options. | Transportation (150, 53.2%) |
Scheduling conflicts (137, 48.5%) | |
Work/employment (40, 14.2%) | |
Symptoms (51, 18.1%) | |
I wouldn't expect there to be any barriers (29, 10.3%) | |
Lack of interest (18, 6.4%) | |
Stress imposed on carer (9, 3.2%) | |
Other (34, 12.1%) Barriers specified (paraphrased): Location (14), Fear, embarrassment, shyness (5), Perceptions of dance (4), Other commitments (3), Cost (2), Lack confidence (2), Stress (1), No partner (1), Gender (1), Motivation (1), Group assignment (1) | |
Q. Before and after the 8-12 week intervention, participants […] will complete a series of physical and cognitive tests at the university. These would take a total of 90-120 minutes. Does this seem… | Too long (45, 16.0%) |
About right (172, 61.0%) | |
I don't know (62, 22.0%) | |
Too short (3, 1.1%) | |
Q. What outcome measures do you think would be most relevant and important to participants? Please select up to 3 that you think would be most important. | Balance (192, 68.1%) |
Walking ability (144, 51.1%) | |
Cognitive abilities (113, 40.1%) | |
Motor symptom severity (102, 36.2%) | |
Mood (94, 33.3%) | |
Endurance (61, 30.5%) | |
Non-motor experiences of daily living (39, 13.8%) | |
Motor experiences of daily living (71, 25.2%) | |
None are relevant (1, 0.3%) | |
Other (72, 25.5%) Outcomes suggested (paraphrased): Social benefits/impact (14), All (6), Posture (4), Self-worth/esteem, achievement (4), Medication (3), Sleep (3), Wellbeing (2), Coordination (2), Enjoyment of classes (1), Pain (1), Speech (1), QOL (1), Dexterity (1), Rigidity/flexibility (1), Self-management (1), Motivation (1), Independence (1) | |
Q. In this study, do you think we should assess participants when they are taking their medication as usual, or should we ask them to withhold their medication for 12 hours prior to the assessments? | On medication (211, 74.8%) |
Off medication, (0, 0%) | |
No preference (71, 25.2%) | |
Q. As well as capturing standard outcome measures, we want to understand people's experiences of the programmes. What would be the best way of capturing this? | Face-to-face interview (85, 30.1%) |
Diary (62, 22.0%) | |
Phone interview (57, 20.2%) | |
Survey (31, 11.0%) | |
Focus group (28, 9.9%) | |
Other (19, 6.7%) Suggestions (paraphrased): Options, combination, or all of the above (10), Email (1), Video call (1), Diary with specific questions (1) |