Outcome measurement in [FND]: A qualitative study on the views of patients, caregivers & healthcare professionals 2025 Pick et al

Abstract

Background
In this qualitative study, we aimed to obtain and synthesise the views of patients with functional neurological disorder (FND), their caregivers, and relevant healthcare professionals (HCPs) on outcome measurement in FND.

Methods
Semi-structured interviews were conducted with 22 FND patients, 18 caregivers and 21 HCPs, sampled purposively in the United Kingdom. Transcripts were analysed through inductive thematic analysis.

Results
Whilst reduction or resolution of FND symptoms were frequently mentioned as important treatment goals in all groups, this was reported by a larger proportion of caregivers and HCPs than patients. Patients most frequently hoped for improvements in mental health/well-being. Other important treatment goals were resuming work, and an increase in independence, self-management or self-efficacy.

Of the 20 domains deemed relevant for outcome assessment, improvements in FND symptoms, emotional well-being, activities of daily living and quality-of-life, were mentioned most frequently.

None of the participants thought that outcome assessment should be purely clinician-rated or objective; all believed that the patient’s subjective experience should be central. Nevertheless, participants in all groups acknowledged that clinician-rated or objective OMIs have added value in clinical outcome assessment. The benefits of digital outcome assessment were also mentioned by several participants.

Conclusions
This is the first study to capture the views of key stakeholders on outcome assessment in FND. The findings indicate that outcome measures for FND should be patient-centred, whilst also including HCP opinion. Critical domains for assessment are FND symptoms, mental health, quality-of-life and the ability to perform activities of daily living.

Open access

 

Note from the abstract, "Nevertheless, participants in all groups acknowledged that clinician-rated or objective OMIs have added value in clinical outcome assessment.", yet later in the abstract, "The findings indicate that outcome measures for FND should be patient-centred, whilst also including HCP opinion.".

 

"Outcome assessment

None of the participants thought that outcome measurement should be purely clinician-rated or objective. Whilst the largest proportion of participants (91% of patients, 83% of caregivers and 86% of HCPs) thought that outcome measurement of FND should be rated by patients as well as the HCPs, all participants believed that the patient’s experience should be central. HCP 03–07 says: “I mean, look, at the end of the day, an improvement doesn't matter if patients don't experience it as an improvement, right, so in a way, I think the subjective experience is the most important.”

However, participants in all groups acknowledged that HCPs have an important role in outcome assessment as well, and that objective assessments have added value, as there can be a discrepancy between subjective and objective functioning. HCP 03–19: “Occasionally we get patients who, who feel just as bad, even though we can see objectively on the ward that they're walking a bit better, they’re doing things that they don't recognize that they're doing.”

Some participants mentioned that it was important to also include the caregiver’s views in the assessment. Caregiver 02–12: “I can observe over a long period of time how it's going and how it's like in daily life.”"
....

"As mentioned by some of the study participants, FND outcome measurement can be complicated due to discrepancies between FND patients’ self-reported and clinician-rated symptom severity or function [6]. One of the diagnostic features of FND is inconsistency, referring to the observation that attention tends to exacerbate symptoms whilst distraction can reduce them, which can result in an overestimation of FND severity during assessments. Whilst there is a traditional preference for objective OMIs in clinical outcome assessment, more recently developed core outcome sets for neurological and functional disorders include prominent patient-reported OMIs [15, 16], and FND experts agree that patient-reported OMIs should be prioritised over objective OMIs [6]. In this qualitative study, too, all participants agreed that the patient’s subjective experience should be central in clinical assessment and evaluation of treatment effects. However, participants in all groups also acknowledged the value of clinician-rated or objective OMIs."

Well, if there are "discrepancies between FND patients’ self-reported and clinician-rated symptom severity or function" you might have thought that objective outcomes might be important.

 

And of course every patient will say that until it is pointed out to them that it is sufficiently open to bias (even if roughly consistent) to mean that it is hopeless to use it in trials.

Why measure a CRP when you can ask about pain?
Because CRP doesn't shift a little bit when you want to 'help' the researcher.

 

Gosh yes, they're establishing references they can draw on later to justify entire reliance on patient-reported outcome measures in clinical trials.

Interesting how the authors show their hand here - they mention the idea of "inconsistency", revealing that they believe FND has a psychological basis. So many authors claim neutrality on that question, which is such a crock.

 

The idea of inconsistency is a complete crock anyway. It's a common thing. Hell, it's why so many models trying to 'rehabilitate' chronic pain and other issues heavily feature distraction. Lots of diseases aren't stable at a certain level, they vary.

And, sure enough, it's possible to distract away from a problem. Throw a dead cat on a table during an argument and the argument will somehow temporarily fade into the background. It's yet another fake argument that no one actually believes because it's so ridiculous, but they have to pretend that there are objective signs, even as they readily admit, as here, that they don't even matter.

 

Do we have an issue with patients having been gaslighted into accepting less and reducing expectations (which cfs CBT seems to be all about) of ever getting anything better heakth wise - just ‘help to cope’ being what is sold at them for years until they realise that’s impossible too when everyone else is being briefed to minimise and dismiss basic needs