Optimizing Measurement of Patient-Reported Outcomes for Dysphagia in People with Head and Neck Cancer and Understanding the Experience with Swallowing Interventions during Cancer Treatment
Bibliographic record
Abstract
Dysphagia is a prevalent complication of Head and Neck Cancer (HNC) and its treatment. The inclusion of dysphagia-related patient-reported outcome measures (PROMs) in HNC research facilitates a comprehensive, patient-centred approach to dysphagia assessment. However, the current use of dysphagia PROMs in HNC has several limitations, mainly related to their unclear quality and inconsistent collection and reporting in clinical trials. Additionally, the perceived acceptability of swallowing interventions delivered during HNC treatment from patients’ and providers’ perspectives is unknown. This knowledge gap limits our ability to identify key priorities for swallowing interventions and develop effective implementation strategies.This thesis aimed to inform the optimized selection of dysphagia PROMs in HNC trials and to describe the acceptability of swallowing interventions for individuals with HNC. Towards these aims, three studies were conducted. Study 1 summarized and appraised the quality of existing dysphagia PROMs in HNC using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) methodology. The review yielded a comprehensive inventory of 39 PROMs. Among these, only one met high quality criteria for content validity and internal structure. Notably, among the remaining PROMs, 18 were developed before the COSMIN standards were available. Study 2 utilized the items extracted from the 39 PROMs previously identified to derive a consensus-based core outcome set (COS) of patient-reported dysphagia for use in HNC clinical trials. A 2-round Delphi study was conducted involving 45 international stakeholders, including patients, caregivers, clinicians and researchers. The process yielded a 7-item COS, including the domains of dysphagia symptoms, health status and quality of life. Study 3 adopted qualitative methods to explore the acceptability of swallowing interventions during HNC treatment. The perspectives of eight HNC clinicians and 24 patients participating in a clinical trial were explored through individual interviews and focus groups. Both groups perceived swallowing therapies that started early as acceptable, for the opportunity to consolidate swallowing habits before toxicities arose, facilitate engagement and set realistic expectations around swallowing. This thesis represents a substantial step toward standardizing the collection of patient-reported dysphagia outcomes in HNC clinical trials. Simultaneously, it presents novel insights into the acceptability of swallowing interventions in the context of HNC treatment.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.153 | 0.238 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.002 | 0.004 |
| Bibliometrics | 0.003 | 0.003 |
| Science and technology studies | 0.001 | 0.002 |
| Scholarly communication | 0.004 | 0.004 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.001 | 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 source (direct Gemma or distilled Codex), 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".