Delphi method

Hello, my name is Lucie Štovičková and I am a clinical researcher at the Center of Hereditary Ataxias Motole Hnomoka University Hospital and the 2nd Faculty of Medicine, Charles University in Prague.

Today I would like to introduce our study recently published in Developmental Medicine and Child Neurology, entitled International Recommendations for Child-to-Adult Care Transition in Rare Neurological Diseases, a Scoping Review and Delphi Consensus Study, developed within the European Reference Network for Rare Neurological Diseases, ERN-RND.

Why is transition such an important issue? For young people with rare neurological diseases, moving from pediatric to adult healthcare can be particularly challenging.

These conditions are often progressive, require multidisciplinary care, and may affect patients' independence.

So what did we do? We conducted a scoping review identifying 373 publications, of which 44 were selected but only 21 specifically addressed rare neurological diseases.

We then developed 59 statements.

and conducted a Delphi consensus process involving 47 healthcare specialists from 12 countries, representing five disease groups Ataxias, Hereditary Spastic Paraplegias, Coreas, Dystonias, and Leukodystrophies.

Together, their centers reported caring for approximately 700 patients of transition age annually.

In a normal workload study, we're accustomed to seeing a time study, a track of how many hours attorneys are working on certain kinds of cases.

And a Delphi method adjustment, taking experts in criminal defense, asking them what in an ideal world, what you should be spending on certain types of cases.

And then taking the delta.

Here's what we're doing.

But more as important, what additional human resources we could apply to that conversation.

Yeah, and I want to go through real quick just some of the differences because what I found actually one of the real interesting things is on your higher level cases, these are some of the highest response times that I've seen attorneys give out.

So just an example to give some color for folks, the National Public Defender Workload Study Delphi Method recommended 286 hours for your life without possibility and death cases.

Your office recommended 800.

Let's move to chronic prurigo.

There's a Delphi consensus from Mendes-Bastos and colleagues in dermatology and therapy, and it's timely because we now have targeted biologics, dupilumab and nemolizumab, tested for this condition.

The diagnostic criteria are clear.

Pruritus lasting at least six weeks, a history of repeated excoriation, and multiple pruritic lesions.

There are not at this point robust data to say that it changes clinical outcomes.

The stage that we're at was first building it by using expert consensus and a modified Delphi approach to figure out what should be included.

And then a number of iterations have used both usability testing with simulation models and then actually having human factors engineers from CHOP part of it to say, how do we actually make this usable and friendly for people to use? So that's the stage that we're at with those.

uh been piloted in a few sites at this point and we're just in the process robin wing is the as the pi looking to now look to implement the checklist uh broadly across a number of sites in the country

So right now, um, again, we have...

Robert Wood Johnson was kind enough to give us a grant, what we call the Expert Opinion Project, or something called the Delphi Study, where we ask people who have decades, at least a decade, and often decades of experience helping people with this stuff in various contexts, meditative context, psychedelic facilitators, clinical clinicians, um, and people who have joint experience with both.

They might be an MD and a, you know, meditation teacher or whatever, somebody like myself.

And so what we're saying is, "Hey, based on your experience so far going back, what have you found the most helpful? What do you think clinicians need to know? Like what kind of terms are important? What kind of, uh, phenomenological categories would be valuable in a clinical context? What new diagnos- diagnostic things do we need? Do we need new di- you know, scales, like clinical scales for scoring people to figure stuff out? What kind of guidelines would then result from that?" So we have a study right now that is going through what's called a Delphi process to help, uh, sort that out with 60 experts.

This, this territory is so vast, we're all pretty limited, right? We, we come th- this through our own communities.

People, you know, tend to, anyway, have a particular kind of thing they're presenting with, depending on our work and how we advertise ourselves or how we show up in the community, and then that limits also the scope of what we're gonna know and what we're gonna see and, and the techniques we're gonna be exposed to.

And so then what you wanna do is not only ask a broad range of experts from across a lot of traditions and backgrounds, but then the, the, uh, something like a Delphi study will tell you, "Hey, these are the things we really think we know.

Like every single expert across all these traditions, they all think that you should be open and receptive to a person's story without, you know, i-immediately pathologizing it." So in fact, you get more and better information.