Structured, expert-informed selection and harmonization of patient-reported outcome measures (PROMs) …: the [LC] use case, 2026, Hanc, Löwe, Köllner+

[Chandelier]

Structured, expert-informed selection and harmonization of patient-reported outcome measures (PROMs) in a German multicenter network: the post-COVID syndrome use case

Spoiler: Authors

Hanc, Evelyne; Koller, Katharina; Herold, Regina; Balz, Luisa; Kupferschmitt, Alexa; Erhart, Deborah; Mang, Jonathan; Löwe, Bernd; Köllner, Volker; Frisch, Stephan; Erim, Yesim; Morawa, Eva

Abstract​

Background​

Patient-reported outcome measures (PROMs) provide subjective information on symptoms, functional ability or quality of life. In post-COVID syndrome (PCS), lacking clear diagnostic criteria or biomarkers, PROMs enable a differentiated assessment of disease course and treatment effects. Within a multicenter research project (EMOPROM LCN), a structured selection process for PROMs was conducted to reach consensus on a validated PROMs battery for PCS, suitable for studies and clinical care, and transferable to other complex conditions.

Methods​

An interdisciplinary committee identified key symptoms/syndromes and constructs (e.g., fatigue, depression, post-exertional malaise) and selected PROMs through a structured, expert-based consensus process considering psychometric properties, clinical relevance, feasibility, time efficiency and applicability within the German healthcare context. The questionnaires were organized into thematic domains and compiled into a modular test battery.

Results​

The following 13 questionnaires were included in the final PROMs battery: Post-COVID Syndrome Score (PCS-Score), Post-COVID Functional Status Scale (PCFS), Fatigue Scale for Motor and Cognitive Functions (FSMC), Patient Health Questionnaire-9 (PHQ-9), Generalized Anxiety Disorder Scale 7 (GAD-7), DePaul Symptom Questionnaire - Post-exertional malaise (DSQ-PEM), Insomnia Severity Index (ISI), Somatic Symptom Scale-8 (SSS-8), Somatic Symptom Disorder – B Criteria Scale (SSD-12), EuroQoL Five-Dimension Five-Level Questionnaire (EQ-5D-5L), Pain Disability Index (PDI), Primary Care PTSD Screen for DSM-5 (PC-PTSD-5), PROMIS v2.0 Cognitive Function Short Form 6.

Conclusion​

The battery offers a selection of validated, time-efficient, and mostly free assessment tools, particularly valuable in specialized care. For routine practice, targeted partial use is recommended. The structured EMOPROM LCN selection process illustrates how clinically relevant, validated and patient-centered assessment instruments can be harmonized for multicenter research and care. PROMs hold considerable potential for improving the quality of care in post-infectious syndromes.

Web | DOI | PDF | Health and Quality of Life Outcomes | Open Access

 

[Chandelier]

From Twitter:

Machine Translation:

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Christoph Bammer @CBammerMD
**Psychologization, Systemic Failure, and Structural Interests: 4 Texts from the Field of Converging Interests **

**1/x**
The past few weeks have been intense. When one reads the chapter “Chronic Fatigue Syndrome” by Kupferschmitt and Köllner in *Behavioral Therapy Manual: Adults* (10th edition) [thread], Zipper’s (2026) article in *Psychotherapy* on predictive processing and embodied resonance [thread{, Hanc et al.’s (2026) article on PROMs [this thread] in the post-COVID context, as well as Waller et al.’s (2026) CME article in *MMW Fortschritte der Medizin* on fatigue and PEM in post-COVID [thread], these texts come together to form a recognizable pattern.

Spoiler: Continued

**2/x**
The chapter by Kupferschmitt and Köllner is not primarily a clinical text. It is a normative one;

**3/x**
one that determines what therapists are supposed to think about certain patients: an interpretive matrix that is transferred directly into everyday clinical practice. Its basic assumption is that therapists appear as epistemically privileged actors, while those affected are portrayed as prisoners of their

**4/x**
own beliefs, their own anxiety, and their own biographies. Accordingly, pacing does not appear as an energy-management strategy explicitly recommended by NICE NG206, but rather as part of the problem.

**5/x**
Zipper’s text culminates in a therapeutic agenda that ultimately holds the person with ME/CFS responsible for overcoming their “identification with the biological perspective” so that “the subject speaking from the unconscious can enter into discourse.” The article contains philosophy-of-science qualifications that serve a political

**6/x**
function: They systematically weaken the arguments of those who point to biological findings—interoceptive miscalibration as an explanatory model—thereby creating a theoretical gap and, more importantly, steering the argument in a particular direction.

**7/x**
Waller et al. fail to explain why pacing has so systematically been ignored or actively opposed. Co-author Köllner, after all, represents precisely those therapeutic approaches. This is the internal tension of a field seeking to maintain its claim to jurisdiction over PAIS, including ME/CFS,

**8/x**
without systematically integrating the biological implications into its clinical recommendations.

**9/x**
The fundamental problem with Hanc et al. lies in the prior decision to take the biopsychosocial model as the interpretive framework, even though its epistemic suitability for the core population of ME/CFS is neither discussed nor substantiated.

**10/x**
The included PROM battery implicitly signals the presence of psychopathology. SSD-12 operationalizes the DSM-5 B criteria for Somatic Symptom Disorder: It infers the presence of a mental disorder solely from the existence of persistent physical symptoms and the extent of the cognitive and emotional reactions to them—a circular principle of construction. As a result, the intense engagement with physical symptoms itself becomes a diagnostically relevant feature;

**11/x**
this is precisely the framing that has historically contributed to the stigmatization of ME/CFS. The most severely affected patients are systematically not reached by this instrument: They are too ill to participate in self-report-based assessments. The PROM battery thus reproduces the familiar

**12/x**
selection-bias problem: It captures those affected individuals who are sufficiently functional to participate in a study while structurally excluding the most severe end of the disease spectrum.

**13/x**
Psychologization follows an institutional logic: When no biologically recognized care pathway is available, patients are directed toward the nearest existing category—the one that generates the least resistance and places the least burden on the system. In the literature, this mechanism is described as *diagnostic displacement*.

**14/x**
Social insurance institutions—specifically, pension insurance providers—have a structural interest in processing disability-pension applications on the basis of psychiatric diagnoses, because existing assessment systems are designed around reduced earning capacity due to functional limitations, not around the complex, fluctuating, and exertion-dependent disability caused by PEM. Those affected are pushed toward psychiatric and psychosomatic assessments because this is the only way to establish a basis for benefits in the first place.

**15/x**
Health policy in market-oriented systems evaluates therapeutic interventions according to their capacity to return people to the labor market. GET and CBT make the restoration of work capacity their central promise; this made them eligible for funding and reimbursement. Pacing structurally cannot make that promise: It reduces activity levels to what the body can tolerate and therefore contradicts the system’s inherent goal of optimizing performance. This constellation produces the interpretive frameworks in which “dysfunctional illness behavior” and a lack of willingness to engage in treatment serve as explanations

**16/x**
for chronicity, even though the latter is biologically determined and these interpretations actively produce delays in diagnosis.

**17/x**
Where no clear biological etiology can be identified, the psychosomatic interpretation functions as a residual category. And this residual category is functionally indispensable within the current healthcare system for PAIS, including ME/CFS, because otherwise millions of patients would be left without a framework of care—something that would be politically untenable.

**18/x**
All four texts reveal the same structural phenomenon: a field of converging interests in which different actors, without explicit coordination, act in the same direction because their professional, institutional, and economic interests converge.

**19/x**
There is an interconnection between Köllner and Kupferschmitt and the EMOPROM-LCN network, which developed the PROM battery in question. This network consolidates epistemic authority over the diagnosis of PAIS and engages in what Gieryn described as *boundary work*: the institutional work of defining the boundaries of a field in order to fend off competing claims and secure its own legitimacy. Research funding flows to where networks, infrastructures, and experience with external funding already exist.

**20/x**
Psychosomatic medicine occupies a structurally precarious position in this context: historically caught between biological medicine and psychiatry, it has defined its jurisdiction over the course of decades through the category of “physical symptoms that cannot be fully explained.” PAIS, including ME/CFS, fit within this domain of authority. Their increasing biological explainability poses an existential threat to the field.

**21/x**
Systemic injustice does not require coordination. It requires structures that give every participant a reason to carry on and give no one a reason to ask: Who actually benefits from this?

​

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[rvallee]

a selection of validated, time-efficient

Validated means absolutely nothing in this context, most of those are awful and unfit for purpose, and 13 questionnaires is the opposite of time-efficient. And that doesn't even take account that it's 6 years of Long Covid on top of decades of similar chronic illnesses. There is not a single time-efficient thing in this whole damn way of doing things.

Almost all this research is completely self-serving, has nothing to do with helping anyone and strictly serves these people's career advancement. Which is even more damning for the systems that employ them, because good careers can be had while serving absolutely no useful purpose. What an incredible waste.