This thread has moved so fast, I'm having trouble keeping up. We have 140 posts since the latest PROM was posted by the MEA for us to test 10 days ago.
I have decided not to read back over them all, so I'm sorry if what I post has already been discussed, and I've missed important points.
I have read the first few chapters of the book Sarah Tyson recommended to me on Facebook as a good starting point for understanding how they analyse the data and create scores from questionnaires.
The book is by Ann Bowling who is a sociologist who focuses on quantitative social science and is listed on the book as a professor of Health Sciences at the University of Southampton.
The book title is Measuring Health: A review of subjective health, well-being and quality of life measurement scales.
It has a chapter introducing concepts such as functional ability, positive health, subjective well-being and quality of life.
The next chapter is called Theory of Measurement, and includes basic stuff about types of data and the different types of measurement used, then more detail about weighting and scaling etc.
The rest of the fat heavy book is chapter after chapter discussing dozens of questionnaires that are used to measure all the different aspects of function and well being.
My conclusion from reading this is that we are being subjected to the particular approach to health care based on the social sciences, not on medicine. The concern is more about what we do and don't do in all aspects of our lives, and how we feel, rather than on treating disease.
This whole approach is a mix of rehabilitation medicine, health psychology and sociology, and is largely applied to chronic disabling conditions like ME/CFS, where a mix of behavioural advice and social care are seen as central to health provision, not medical care.
In order for the clinicians (mostly physios, OTs and psych therapists) to prove their worth to the health and employment services, their value in cutting our use of physician services and push is towards getting back to social and economic functioning, these services use subjective questionnaires (PROMs) to generate data about their patients to show they are helping us effectively.
Since they can often do little or nothing to improve our physical or cognitive functioning or symtoms that are directly caused by our disease, they design questionnaires that include stuff about non medical aspects of our lives, like social, work, family, emotional and sexual functioning.
And since they don't have any tools to affect the disease, they create treatment programs that occupy our time with blather about diaries and baselines and positive thinking and acceptance, and micromanaging our lives in totally unrealistic ways, and getting us to repeatedly fill in lengthy and ambigous questionnaires.
Sorry, I seem to have diverted off into an angry rant. I'll stop and try to collect my thoughts about the data analysis stuff, and try to write some notes on what I think are the particular flaws in the latest questionnaire.
This stuff all makes me so angry. If we had a specialist physician led service that focused on diagnosis, medical symptom management, referrals to other specialists where necessary, and a structure of ongoing care by specialist nurses, who could call in physios, dieticians etc as needed, home care, ensuring people get the support they need etc, we wouldn't need or be subjected to any PROMs. They are simply not a feature of proper medical care.
