BACKGROUND
Surgical removal of the larynx (voice box), or total laryngectomy, is an important treatment for patients with advanced laryngeal and hypopharyngeal cancer. While potentially lifesaving, total laryngectomy changes many aspects of patients’ lives, including changes in communication, swallowing, and the need to care for a permanent neck stoma (hole in the neck). Our goal is to develop LARY-Q as a tool to accurately measure these unique issues from a patient perspective to inform clinical practice, improve care quality, and advance research for patients with total laryngectomy. The LARY-Q is being developed as the first-ever modular PROM for patients with total laryngectomy. The development of LARY-Q has the following three aims:
- To identify concepts that are important to people who have undergone total laryngectomy through a qualitative study
- To establish content validity for LARY-Q using cognitive debriefing interviews with patients and clinician experts
- To finalize scales and determine psychometric properties of the LARY-Q through an international field test study
PROGRESS TO-DATE
To develop LARY-Q, our team followed a mixed-method, multiphase approach based on international guidelines for PROM development. In phase 1, a conceptual framework for LARY-Q was developed using data from qualitative interviews with people who had undergone total laryngectomy. An exhaustive pool of items was generated to measure these concepts. This item pool was developed into scales, which were shown to patients and clinician experts to establish content validity (i.e., the content is relevant, comprehensive, and comprehensible to patients). Our team received funding from the American Academy of Otolaryngology-Head and Neck Surgery for phase 1 development of LARY-Q.
At this time, LARY-Q is being field tested in a large international sample of patients who have undergone total laryngectomy. Using data from the field test, the questions that represent the best indicators of outcome will be retained based on their performance against a set of psychometric criteria using Rasch analysis (a modern psychometric approach).
TIMELINE
LARY-Q FRAMEWORK
CO-DEVELOPERS
Dr Michael Pei-Hong Wu
Massachusetts Eye and Ear and Harvard Medical School, US
Q-Portfolio
Dr Anne Klassen
McMaster University, CA
Q-Portfolio
Dr Manraj Kaur
Brigham and Women’s Hospital and Harvard Medical School, US
Q-Portfolio
Setting the Bar in
Patient Reported
Outcome Measurement
Funding Provided By:
