Thoughts on future research

Respondents were asked if they would be happy to take part in further research related to the questionnaire:

90%would be happy to help test a new app at home which includes a 6-Minute Walk Test function

87%would be happy to fill in more online surveys

57%would be happy to take part in online focus discussion groups with other patients

79%would be happy to take part in online / telephone interviews with a researcher Additional comments about the research included: “I’m always interested in the advance of knowledge and treatment for my condition” “It would be great to understand the background research of the drug trials on the rats, and what the results were. It would give me a bit of more confidence to go on the trial. As a PAH patient, I do try and read up on the latest drug trials and treatments so I think we are up for reading more information on it.” “I would be more than happy to take part in research if I could be monitored at home. When I took part in a previous trial I had to regularly travel to my centre to be monitored and have tests. That was quite difficult for many reasons but it was worthwhile and the advantages outweighed the disadvantages. I would be reluctant to do the same now because of the covid risk from travelling on public transport. I don’t feel I could ask my partner to drive me to my centre (which is very difficult) any more than he does now.” “I feel it is so uplifting for research to be ongoing for sufferers of PH.”