Research priorities for medically not yet explained symptoms expressed by patients, carers, and healthcare professionals in [NL]... 2024 Elfeddali+

Full tile: Research priorities for medically not yet explained symptoms expressed by patients, carers, and healthcare professionals in the Netherlands following the James Lind Alliance priority setting partnership approach

Highlights

• Professionals/patient representatives identified top research priorities for MNYES.
  
  
• 572 topics for research were narrowed down to 37 research questions in Phase 1.
  
  
• These 37 research questions were prioritized in Phase 2: resulting in 18 questions.
  
  
• A top 10 of research priorities for MNYES was formed in a final workshop meeting.
  
  
• Top priorities: optimising diagnosis/treatment, aetiology/prevention and coping.

Abstract

Objective
Experiencing physical symptoms that are medically not yet explained (MNYES) is associated with considerable burden in daily life. Research priorities in this area have been primarily investigator-driven. The present study identifies the top 10 research priorities, incorporating the views of patients, carers and healthcare professionals.

Methods
This study used the Priority Setting Partnership approach in collaboration with the James Lind Alliance (JLA). The priority setting approach combines survey-based data from patients with a specific disorder/condition and relevant stakeholders (i.e., caregivers and healthcare professionals) with input from group meetings and a final priority setting consensus meeting. There were three consecutive phases: (1) online survey with an open-ended question to collect topics for future scientific research (N = 345 participants); (2) an online survey among stakeholders to prioritise the research questions generated in Phase 1 (N = 400); and (3) a final multi-stakeholder consensus meeting, held over two half-days to determine the final top 10 research priorities for the Netherlands (day 1 N = 25, day 2 N = 24).

Results
Phase 1 resulted in 572 topics, which were reduced to 37 summary research questions. Phase 2 resulted in 18 research priorities, that were ranked and the top 10 priorities were established during the final consensus meeting. The top 10 research priorities included three main themes: optimising efficient diagnosis and treatment, aetiology and prevention, and coping with MNYES.

Conclusion
The top 10 priorities provide insight into what is most important for future research into MNYES from the perspective of patients, carers and healthcare professionals.

Paywall [with 'section snippets' but without revealing the full list of priorities], https://www.sciencedirect.com/science/article/abs/pii/S0022399924003027

 

Well that’s one way of switching the term

I hope they are going to tackle those lumped and dumped

I just feel cynical of those not with my best interests in mind potentially sneaking in under these [again] due to their great politicky sales pitching

and can’t read the detail in full (not feeling great)

to be sure we aren’t going to get done over again.

 

Hmm, doesn't look login-walled to me (can also access it when not logged in, in a private browsing window, maybe they've changed it); nonetheless, here are the 10 questions & the table with the phase 2 rankings. Haven't looked at this closely but there seem to be some significant disparities between what patient representatives & professionals want in Table 2 (e.g. "What is the role of trauma or other adverse childhood life events in the development of MNYES?" - rank 22 for the patients, rank 9 for the professionals).

 

yes sorry, I've added a note, just not up to it/feeling good enough right now, so hadn't even checked out whether I could access it.

Uggh

well at least I feel those patients got that one correct. what's wrong with the professionals they've used to put it as high as 9?

Is it conflict of interest (mightn't be them but others they are around at home or work) playing into it? or are these a wide selection of theoretically 'normal' ones? who are these people so at least we can take a guess at what the problem we have to fix there is