Effect of the addition of a mental health specialist for evaluation of undiagnosed patients in centres for rare diseases (ZSE-DUO)... 2023 Hebestreit

Full title: Effect of the addition of a mental health specialist for evaluation of undiagnosed patients in centres for rare diseases (ZSE-DUO): a prospective, controlled trial with a two-phase cohort design

Background
People with complex symptomatology but unclear diagnosis presenting to a centre for rare diseases (CRD) may present with mental (co-)morbidity. We hypothesised that combining an expert in somatic medicine with a mental health specialist working in tandem will improve the diagnostic outcome.

Methods
Patients aged 12 years and older who presented to one of the 11 participating German CRDs with an unknown diagnosis were recruited into this prospective cohort trial with a two-phase cohort design. From October 1, 2018 to September 30, 2019, participants were allocated to standard care (SC, N = 684), and from October 1, 2019 to January 31, 2021 to innovative care (IC, N = 695). The cohorts consisted mainly of adult participants with only a minority of children included (N = 67). IC included the involvement of a mental health specialist in all aspects of care (e.g., assessing medical records, clinic visits, telehealth care, and case conferences). Clinicaltrials.gov identifier: NCT03563677.

Findings
The proportion of patients with diagnoses established within 12 months after the first visit to the CRD explaining the entire symptomatology (primary outcome) was 19% (N = 131 of 672) in the SC and 42% (N = 286 of 686) in the IC cohort (OR adjusted for centre effects 3.45 [95% CrI: 1.99–5.65]). The difference was mainly due to a higher prevalence of mental disorders and non-rare somatic diseases in the IC cohort. The median time to explaining diagnoses was one month shorter with IC (95% CrI: 1–2), and significantly more patients could be referred to local regular care in the IC (27.5%; N = 181 of 659) compared to the SC (12.3%; N = 81 of 658) cohort (OR adjusted for centre effects 2.70 [95% CrI: 2.02–3.60]). At 12-month follow-up, patient satisfaction with care was significantly higher in the IC compared to the SC cohort, while quality of life was not different between cohorts.

Interpretation
Our findings suggested that including a mental health specialist in the entire evaluation process of CRDs for undiagnosed adolescents and adults should become an integral part of the assessment of individuals with a suspected rare disease.

Open access, https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00437-6/fulltext#

 

I struggle with all these papers, and there is one main reason for this. I simply do not believe that such a large percentage of the population suffers from mental illness.

When I was growing up there were people in the population who were "a bit odd". I still occasionally see people who are "a bit odd", but sometimes I think they might just be drunk or on illegal drugs. But the numbers mentioned in BPS papers just makes no sense to me in comparison to my own experience.

I could imagine a scenario where a lot of people are mentally ill if they are living in a war zone. But in people living in prosperous, peaceful countries I suspect the rates of mental illness are very exaggerated. But then maybe I'm just naive.

 

There is a difference between mental health issues and mental illness.

 

I think the word "mental" should be retired. Too much damage has been done to it for it to be salvaged.

ETA: And then there's the false dichotomy it keeps empowering.

 

It's dangerous when a group of people are the "experts" who decide how many people need to pay those experts for their help. With broken bones, cancer, heart attacks, etc, you can quantify the need for the expert. With mental illness, the psychiatrists qualify patients, and there's no one who can prove that they are wrong.

 

Being quicker at making a diagnosis is only of value if those diagnoses are accurate. Given my cynicism over such as FND diagnoses I worry that there is a risk that having mental health specialists with an interest in ‘somatic medicine’ may result in missing other rare biomedical diagnoses and cause long term harm because of failure to treat or undertaking harmful psychological or behavioural interventions.

I am not currently upto reading the article itself so may be being unfair, but I would want to see independent verification of the diagnoses reach and long term follow up to identify rates of missed biomedical diagnoses.

 

I agree. But people whose behaviour was unusual when I was a child were always referred to in nasty ways. The same happens now but the means of doing it and the reasons for doing it are different to the things that happened when I was a child. People now are tarred with the diagnoses of "somatic symptom disorder" or FND or anxiety or depression or a dozen other things, and they don't get investigated properly, nor do they get cured.

 

How many people aware of default labels like FND and MUS are unwilling to go to say, a neurologist, because they know, in today's cringeworthy medical world, there is a real possibility that their diagnosis not only gets kicked to the curb, but they get labeled instead with an appallingly incorrect qualifier that may never be expunged from their records? That may follow them and pull them down and eliminate any chance of proper diagnosis for the rest of their lives?

And by not going, they potentially allow a disease that might have been curable or at least manageable, to worsen.

Mental health specialists can do good. But the doubt cast by the literally false illness beliefs embraced and espoused by many from that discipline - and blindly accepted and acted upon by virtually every other medical discipline - can impact the decisions of sick people, sometimes dangerously.

This is not to absolve neurologists or whatever of their willing laziness and indifference to whats going on. This is not just inertia or time management or economies of service. It's being complicit in the harms being levied against sick people.

Despite many meaningful advances in medical science that we read about weekly if not daily, this is a shameful time for medicine.