ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2021
Response-shift effects in neuromyelitis optica spectrum disorder: a secondary analysis of clinical trial data.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it, 16 citations in OpenAlex.
- Impact of response shift on change in patient-reported outcomes: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Pooled it
- Exemplifying a measurement validation strategy for rare- and ultra-rare diseases: measuring what matters in alpha-mannosidosis.Orphanet journal of rare diseases · 2026Article
- Cognitive appraisal processes and health: from bench to bedside.Frontiers in public health · 2026Review
- Ofatumumab treatment in patients with neuromyelitis optica spectrum disorder: a retrospective multicenter cohort study.Journal of neurology · 2025Article
- Long-COVID symptom burden and the experience of adversity: the importance of response-shift effects over 3 years of the pandemic.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Response-shift effects in childhood cancer survivors: A prospective study.Psycho-oncology · 2023Article
- Double-blinded is not better than "mutually enlightened": implications of Lord-Besson et al.JNCI cancer spectrum · 2023Article
- Listening to the elephant in the room: response-shift effects in clinical trials research.Journal of patient-reported outcomes · 2022Article
Corrections and comments
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Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundResearchers have long posited that response-shift effects may obfuscate treatment effects. The present work investigated possible response-shift effects in a recent clinical trial testing a new treatment for Neuromyelitis Optica Spectrum Disorder (NMOSD). This pivotal trial provided impressive support for the drug Eculizumab in preventing relapse, but less strong or null results as the indicators became more subjective or evaluative. This pattern of results suggests that response-shift effects are present.
methodsThis secondary analysis utilized data from a randomized, double-blind trial evaluating the impact of Eculizumab in preventing relapses in 143 people with NMOSD. Treatment arm and then relapse status were hypothesized 'catalysts' of response shift in two series of analyses. We devised a "de-constructed" version of Oort structural-equation modeling using random-effects modeling for use in small samples. This method begins by testing an omnibus response-shift hypothesis and then, pending a positive result, implements a series of random-effects models to elucidate specific response-shift effects.
resultsIn the omnibus test, the 'standard quality-of-life (QOL) model' captured substantially less well the experience of placebo as compared to Eculizumab group. Recalibration and reconceptualization response-shift effects were detected. Detected relapse-related response shifts included recalibration, reprioritization, and reconceptualization.
conclusionsTrial patients experienced response shifts related to treatment- and relapse-related experiences. Published trial results likely under-estimated Eculizumab vs. Placebo differences due to recalibration and reconceptualization, and relapse effects due to recalibration, reprioritization, and reconceptualization. This novel random-effects- model application builds on response-shift theory and provides a small-sample method for better estimating treatment effects in clinical trials.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.