Arising in cosmetically and functionally critical areas, head and neck cancer (HNC) and its treatment cause commonly causes life-altering changes in appearance, swallowing, and speaking with resultant functional and social impairment and decreased quality of life. Concern about body image is a common problem with negative consequences in patients with HNC. Despite its importance, there is little data about body image disturbance in patients with HNC.
The objective of this study is to examine the how body image concerns in patients with head and neck cancer change over time and to identify which patients are at risk for developing concerns about body image. This study will provide preliminary data to inform future studies with the long-term goal of improving patient care by preventing and treating concerns about body image in patients with head and neck cancer.
Patient-centered oncology care guided by patient-reported outcomes (PROs) is highly prioritized by the American Cancer Society and the National Cancer Institute. Routine use of PROs in cancer care is associated with improved processes of care, patient outcomes (including overall survival), and shared decision making. Shared decision making is critical for patients with HNSCC, because HNSCC occurs in cosmetically and functionally critical areas. Thus, patients with HNSCC are often forced to prioritize amongst potential treatment-related morbidities and functional outcomes related to appearance, swallowing, and speaking. Understanding how HNSCC patients prioritize functional outcomes in relation to one another would facilitate patient-centered head and neck oncology care. Unfortunately, there is a paucity of data on this topic. To date, there is minimal data about the temporal stability of patient priorities and it remains unknown how patient priorities relate to patient function or health-related quality of life (HRQOL) over time. These gaps in understanding prevent the delivery of optimal patient-centered cancer care that matches patient needs over time. This study will address how patients prioritize functional outcomes in relation to one another and what factors underpin those priorities.
The long-term goal of the research is to develop comprehensive patient-centered strategies for HNSCC patients based on knowledge of functional domain prioritization so that counseling, treatment, and supportive care can be patient-centered. The overall objective of this proposal is to use PRO measures to provide preliminary data examining how patient priorities relate to function and HRQOL over time. The central hypothesis is that patient functional priorities change over time such that patients more highly prioritize the functional domains in which they have decrements in function and de-prioritize the functional domains in which they maintain high function. Confirmation of this hypothesis will promote the development of patient-centric interventions at different points along the treatment spectrum to improve patient care. Our hypothesis will be tested by completing the following Specific Aims:
Specific Aim 1: To characterize how patient functional priorities change over time. Prior work has characterized functional priorities for patients with HNSCC in a cross-sectional manner. However, it remains unknown whether patient priorities change over time. In this study, patients will rate their functional outcome priorities using the Chicago Priority Scale before, during, and up to 9 months after treatment. Characterizing temporal changes in functional priorities will address this knowledge gap.
Specific Aim 2: To use PRO measures to examine the relationship between patient functional priorities and patient function and HRQOL over time. Prior work has addressed the relationship between patient priorities and function in a cross-sectional fashion, but it is unknown whether changes in function over time affect changes in priorities over time. In this study, reliable, validated PRO measures of swallowing, voice, body image, and HRQOL will be used to assess function and HRQOL before, during, and up to 9 months post-treatment. Longitudinal data about patient priorities, function, and HRQOL will be analyzed to examine how patient priorities relate to changes in function and HRQOL over time. Examining the relationship between patient priorities and function and HRQOL over time will address this critical knowledge gap.
Successful completion of these aims will yield the following expected outcomes. For Aim 1, it is expected that patient priorities will change over time and head and neck specific priorities will be less highly prioritized prior to treatment and more highly prioritized after treatment. For Aim 2, it is expected that patients will more highly prioritize the areas in which they have decrements in function over time and de-prioritize the areas in which they maintain high function. This pilot study will provide preliminary data to inform future studies with the long-term goal of improving patient care by 1) facilitating pre-treatment counseling via provision of information about expected prioritized functional outcomes, 2) guiding treatment decision-making to focus on treatment paradigms that minimize morbidity in a patient-centric way, and 3) directing provision of patient-centered supportive care resources for the right need for the right patient at the right time.
Future directions following this pilot study include: 1) scaling up the pilot study into an appropriately powered multi-site study, 2) extending into the survivorship period to assess the long-term relationship between priorities and function over time, and 3) synthesizing patient priority and patient function data to create patient-centric PRO performance measures.