Development and Validation of the Chronic Acquired Polyneuropathy- Patient Reported Index (CAP-PRI) to Measure Quality of Life in Patients with Chronic Immune-mediated Polyneuropathies (P4.124)
Bibliographic record
Abstract
OBJECTIVE:To develop a patient reported outcome measure for chronic immune-mediated polyneuropathies (IPN) (including chronic inflammatory demyelinating polyneuropathy, distal acquired demyelinating symmetric neuropathy, and multifocal motor neuropathy) to be used clinically and in future trials. BACKGROUND:Very few quality of life (QoL) measures have been specifically studied in chronic IPN. Most QoL instruments that have been used in IPN patients are generic and include irrelevant items of little pertinence to the patient and fail to capture important polyneuropathy-specific information. The chronic acquired polyneuropathy-patient reported index (CAP-PRI) instrument was developed to address this need. DESIGN/METHODS: A 20-item instrument generated in an earlier study based on patient input demonstrated excellent correlation with the Rasch-built Overall Disability Scale (R-ODS), RAND-36, INCAT disability score, and Neuropathy Impairment Score. Following Rasch analysis of the original instrument, the modified 15-item CAP-PRI was created. We further investigated conventional and modern psychometric properties of the revised outcome measure as well as the R-ODS, RAND-36 and INCAT disability score in 39 patients with IPN from five participating academic institutions. RESULTS: The CAP-PRI is a unidimensional outcome measure fitting Rasch model perfectly. Rasch analysis showed no misfitting items. Category responses were very well organized for every item. The CAP-PRI items covered a good QoL range with a relatively small floor effect. Differential item functioning did not show any significant difference between diagnoses or gender. The CAP-PRI correlated well with R-ODS (-0.6, P<0.001), and certain subsets of the RAND-36 (physical functioning, role limitations due to physical health, role limitations due to emotional problems, energy and fatigue, and social functioning (all p<0.001). The CAP-PRI also correlated with the total INCAT score (0.60, p<0.001). CONCLUSIONS: The CAP-PRI is a 15-item QoL measure which has been rigorously developed and demonstrates excellent psychometric properties. Further studies to perform additional psychometric analysis are planned.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.001 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".