Learning from patients with facial paralysis

[ohnsent]

Hello, I'm an American physician at Johns Hopkins who is dedicated to improving the care of patients with facial paralysis.

Survey Link: jhmi.co1.qualtrics.com/SE/?...

We’re hoping to learn more, from the patient’s perspective, about living with facial paralysis. To better understand our patients, we are asking patients to help by answering questions in an online survey. Your input is highly valuable and will help us better take care of patients with acoustic neuroma and facial paralysis.

This quality of life survey is divided into 2 parts. See the link below. People report that it takes 15-20 minutes to complete both parts.

Survey Link: jhmi.co1.qualtrics.com/SE/?...

Please read the instructions carefully and answer all questions to the best of your ability. There are several questions, so please do not get stuck on one for a long period of time, just make your best answer and move on. There are no right or wrong answers. When you are done with each part, just click submit. If you accidentally skipped some questions, the survey will prompt you to complete them before submitting.

If you cannot finish the entire survey at one time, you can use the same link to return to the spot you left off. Please let me know if you have any issues completing the survey. We sincerely appreciate the role you are playing to help improve our understanding of how facial paralysis can impact a person's quality of life.

Thank You!

[Bramleyboy]

Good survey except the question about 'how much would you be willing to pay'. Not clinically significant and cheapens the research. Maybe that is just nhs in me talking!

[Karen-FPUK Partner in reply to Bramleyboy]

Hello I think this is an American organisation. I'll ask them to make that clear as it is confusing to those of us in the UK as to why cost would be included in the survey. Only just seen this post so will advise the poster now. Thanks for highlighting this!

[Karen-FPUK Partner]

Please could you edit your original post to make it clear you are an American organisation hence there are questions about cost. It is confusing to those of us in the UK because we have a different health care system. It might be more relevant to share this survey in a US led group like this Facebook group. You would need to request permission from admin to post obviously: facebook.com/groups/facial....

Thank you for trying to improve health care for this patient group!

[ohnsent]

Thank you for your thoughtful questions. Asking willingness to pay is a surrogate for a valuation question. This allows one to determine the relationships between latent variables such as quality and value. The question is not intended to price point or determine economic drivers, but merely a strategy for understanding what individuals believe is the value of addressing facial paralysis (other examples include standard gamble, time to trade off). However, we will definitely keep this in consideration given differences in health care systems, but from a methodological standpoint - the mean value of correcting facial paralysis should be consistent if you believe in Francis Galton's principle - Vox Populi. Nonetheless, I'll add that we're from the USA.

Thank You!

[valeriegilling1 in reply to ohnsent]

Are you still doing this survey or are you now looking for people with long standing synkenisis to participate in trials or are you able to help with information on how to deal with certain aspects of this condition please