Psoriatic Arthritis survey part 2

Rascal

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Psoriatic Arthritis Priority Setting Partnership Survey 2 (surveymonkey.co.uk)


Last year I posted part one of the Psoriatic Arthritis Priority Setting Partnership survey and a good number of responses came from here. Thank you

Since then, we have collated all the results, come up with a set of indicative questions, looked into whether research has been done or is being done in those areas across the world and finally narrowed the questions down to this final survey. Its been tough going through the Covid crisis as all our meetings were through Zoom but we are now getting closer to the end of the process. I have been a patient representative on the steering committee and have played a full part in the whole process which is being lead by an eminent Oxford based Professor of Rheumatology and a Senior Lecturer in Dermatology from Manchester University who is a key member of my own Professors team based at Salford Royal.

My responsibilities have been to make sure the patient voice is heard at all the stages of the process and give my insight and add my experience to the steering committee so that it focuses on patient needs rather than on medical desires. For my trouble i will get accreditation in the BMJ when the final paper is released and of course the satisfaction of knowing i have possibly helped shape research in this area so that patient outcomes are of a much higher standard.

Those of you who did the survey last time really helped as their is often an imbalance in gender when these surveys are done and with BM being a male dominated forum I hope that many of you fella's and indeed ladies will take part. You can take part if you have Psoriatic Arthritis, are a carer for somebody with Psoriatic Arthritis or are a family member of a person with Psoriatic Arthrotos. You are also free to share the survey i have posted above with friends and relatives and if you follow me @rascalmcfc on twitter you are free to retweet the survey once it is online.

There is also an opportunity for people to get involved in the final workshop, which will be held on Zoom and organised by the James Lind Alliance. Their will be renumeration for being involved , at this moment I am not sure how much it will be or what form it will take but it is likely to be Amazon vouchers. At the final workshop the research priorities will be set and then shared to the research faculties across the country so you would be making a real difference. If you would like to get involved you can either express an interest via the survey or PM me your details and i will pass them on to the event organiser. I will be attending the final workshop as an observer so you would get to say hello to me, what a thrill hey :))

Please do help if you can, a lot of hard work in very testing times has gone into this and your help would be really appreciated.

Cheers

Rasc
 
Please do answer this if it applies to you.

If you want to speak privately you can PM me in confidence.

Cheers
 
Lads, come on, we still do not have enough men filling in this survey.

We also need people to take part in the final selection, there is reimbursement and it will done over Zoom.

Contact me by PM if you want, it will be in confidence.

I have put my heart and soul into this lads so if you can please help, share with anyone you know, if you see me tweet it , retweet it i am @rascalmcfc

Cheers
 
Thanks to everyone who took part in the surveys, you have been a great help.

We are now in a position to announce the top 10 priorities according to people with PsA , carers and clinicians. This was done at a final workshop facilitated by the James Lind Alliance. It is the culmination of 12 months work and it has been a real honour for me to be involved in the project from day 1. I have worked alongside some amazing people from Professors , to Psychologists, Physiotherapists, to CEOs of Charities and people from Brit-Pac, the Psoriasis Association, Psoriasis and Psoriatic Arthritis Alliance and other Patient representatives.





The Top Ten Psoriatic Arthritis Research Priorities are:

  1. What is the best strategy for managing patients with psoriatic arthritis, including non-drug and drug treatments?
  2. What factors affect how psoriatic arthritis will progress, the likely severity of the disease in an individual and whether it will go into remission?
  3. Can tests be developed to predict whether a person has or will develop psoriatic arthritis?
  4. Is a person with psoriatic arthritis at risk of developing other health conditions? If so, which ones? Why?
  5. Does treating psoriatic arthritis early (or proactively) reduce the severity of the disease and/or make it more likely to go into remission?
  6. What triggers acute exacerbations and flares of psoriatic arthritis symptoms?
  7. What is the best way to measure outcomes of treatment in psoriatic arthritis?
  8. What are the long-term risks and benefits of medications used for psoriatic arthritis?
  9. Why do treatments stop working well against psoriatic arthritis, and when they lose effectiveness, what's the best way to regain control of psoriatic arthritis?
  10. What treatments present the most benefit (considering efficacy, tolerability and safety) for the different body tissues involved in psoriatic arthritis, for example, joints, tendons, spine, skin and nails?
If you took part in the survey and your priorities were not in the top 10 they will still be included in the final paper that will submitted in November and will at some point be the subject of research.

Thank you

Rasc.
 

The final abstract has been finished and its been published in the Oxford Academic journal.

I never imagined at the start I would get my name on the final piece alongside Profs and Docs. Im well chuffed.

A huge thank you to all those who took part and sent messages of support , I am a proud lad this morning.
 

The final abstract has been finished and its been published in the Oxford Academic journal.

I never imagined at the start I would get my name on the final piece alongside Profs and Docs. Im well chuffed.

A huge thank you to all those who took part and sent messages of support , I am a proud lad this morning.

Mate, congratulations! This is fantastic work and you should be very proud, well done.

I remember exchanging posts when this thread was first shared and it's really interesting to read the findings, a lot of which are very relatable.

I've shared the article with family and close friends as I find it difficult talking about PA, as most people just don't tend to 'get' it. They see an outwardly healthy looking person who on the surface has no restrictions in their mobility and think you're being dramatic. Unfortunately, as the article details, the impact of PA are much more wide ranging than just physical conditions.

I dont know how it's possible to raise awareness about PA, but the work you are doing is certainly a great start and I'm very appreciative to you and your collaborators for all of your efforts.
 
Mate, congratulations! This is fantastic work and you should be very proud, well done.

I remember exchanging posts when this thread was first shared and it's really interesting to read the findings, a lot of which are very relatable.

I've shared the article with family and close friends as I find it difficult talking about PA, as most people just don't tend to 'get' it. They see an outwardly healthy looking person who on the surface has no restrictions in their mobility and think you're being dramatic. Unfortunately, as the article details, the impact of PA are much more wide ranging than just physical conditions.

I dont know how it's possible to raise awareness about PA, but the work you are doing is certainly a great start and I'm very appreciative to you and your collaborators for all of your efforts.
Thanks mate, i am always available to answer questions etc if need be, just drop me a PM.

I have recently become a Trustee of the Psoriasis Association and one of my aims in that role is to push for greater awareness through whatever means available. I am hoping this published work gives me further chances to meet and work with the professionals in the field and get them on board with raising awareness too.
 

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