Association of quality of life with mortality in patients with adenoid cystic carcinoma using an internationally-validated QoL questionnaire (EQ-5D-5L)
We are so pleased to share the publication of a new open-access research paper in Oral Oncology, describing the research of Dr. Joseph Haigh, Dr Rob Metcalf and other collaborators. The paper, "Association of quality of life with mortality in patients with adenoid cystic carcinoma using an internationally-validated QoL questionnaire (EQ-5D-5L)," is the first study to establish a baseline for quality of life (QoL) in adenoid cystic carcinoma (ACC) patients outside of an interventional clinical trial.
The research highlights a critical finding: a lower QoL is associated with shorter survival times in ACC patients. This work is vital because it provides a foundational dataset that can be used as a comparator for future single-arm clinical trials, which are common in rare cancers like ACC. This could be instrumental for health technology assessments and drug reimbursement decisions by bodies like NICE (UK's National Institute of Health and Care Excellence). The study found that QoL deteriorates over time, though not significantly influenced by factors like NOTCH1 mutation status or recurrence patterns. We are very proud to have supported this work.
For a more in-depth look, Joe Haigh previously presented on this research at one of our gatherings. You can watch his presentation on our YouTube channel here: https://youtu.be/hNV2ip4Oyas
You can download the paper here or view the full article here : https://www.sciencedirect.com/science/article/pii/S1368837525004130?via%3Dihub.
Article Highlights
- First baseline of quality of life in patients with adenoid cystic carcinoma.
- Worse quality of life is associated with increased mortality.
- Quality of life deteriorates over time during disease course.
- NOTCH1 gain of function mutation is not associated with a worse quality of life.
Abstract
Background/objectives: An evaluation of quality of life (QoL) is increasingly required for approval and reimbursement of new drug therapies. To support the evaluation of the impact of new drug therapies on QoL in single-arm studies in adenoid cystic carcinoma (ACC), we sought to determine the QoL baseline in a cohort of patients with ACC during routine follow up visits and to assess for associations with clinical or prognostic factors.
Methods: An internationally-validated QoL questionnaire (EQ-5D-5L) was completed by patients with ACC referred to an experimental medicine centre. EQ-5D value scores (EQV) were calculated from each questionnaire using the EuroQol England value set. A Cox proportional hazards model was built with EQV as a time-dependent variable. Non-linear mixed effects modelling (NLME) was used to test the relationship between EQV and predictors (time, NOTCH1 status, age at diagnosis, sex, local and/or metastatic recurrence, and primary site of disease).
Results: Between 2019 and 2023, 563 questionnaires were completed by 161 patients with ACC. Median EQV was 0.81 (range −0.22 to 1.0) and mean EQV was 0.79. A decrease in EQV from 1 to 0 was associated with an eightfold increase in risk of death in the total population (HR = 0.118, 95 % CI 0.057 to 0.244, p=<0.001). No predictor had a significant impact on EQV in NLME except time (p=<0.001).
Conclusions: For patients with ACC, a worse QoL as measured by EQ-5D-5L was associated with a significantly increased risk of death. It remains unclear if poorer QoL has a causal relationship with mortality.