Head and neck cancers (HNCs) account for only 4% of all cancer cases in the U.S;1
however, the disease and its treatment have a disproportionate impact on all aspects of patient quality of life (QOL). QOL is a multi-dimensional construct of an individual's subjective assessment of the impact of an illness or treatment on his or her physical, psychological, social, and somatic functioning and general well-being.2,3
Patients with HNC report significant and persistent physical (i.e., radionecrosis, mucositis, loss of taste, and dysphagia),4–7
functional (i.e., pain, difficulty swallowing, voice impairment, and poor dental status),8–11
and psychosocial problems (i.e., depression, disfigurement, social isolation, and delays returning to work).12–18
Given that QOL domains have been shown to predict survival among HNC patients,19–21
it is not surprising that QOL has become an important treatment outcome in HNC.22–24
QOL assessment in HNC is critical not only to the evaluation of treatment options, but also to the development of rehabilitative services and patient education materials. Despite this fact, there is a lack of understanding of the true clinical significance of QOL in HNC and how to best interpret and implement the results of research studies into clinical practice. This problem has been fueled by the lack of randomized clinical trials (RCTs) in HNC that prospectively assess QOL, the use of sometimes inappropriate measures, and the lack of a gold-standard measure to facilitate cross-study comparisons. Adding to the problem, researchers often combine QOL measures in their studies without fully understanding how they complement or conflict with each other. For example, many generic, cancer-specific, and HNC disease-specific measures have overlapping content (e.g., they assess mental and physical quality of life),3
but are often used together by investigators in the same study.
Developing a clearer understanding of the plethora of available instruments and their properties is a necessary first step towards addressing the above problems and bridging the gap between research and clinical practice. However, existing reviews of QOL instruments in the HNC literature have not been comprehensive2,25–27
in their scope. Moreover, existing QOL instrument databases, like the PROQOLID,28
are nonspecific and lack information on some instruments commonly used in HNC and subscription fees for key information (e.g., psychometric properties) in such databases, hamper their utilization among researchers with limited budgets. Furthermore, these databases, like previous reviews, often lack information on the QOL issues or domains addressed by the instruments, a key component of the instrument selection process.
According to the Scientific Advisory Committee of the Medical Outcomes Trust (SAC-MOT) for the development and validation of health outcomes questionnaires29
and other international guidelines,29–33
high-quality measures of QOL should be reliable, valid, and demonstrate responsiveness (the ability to detect change over time).29,32,33
Other characteristics to consider when evaluating measures include the conceptual and empirical basis for content generation, whether there is reasonable respondent and administrative burden, and whether the measure has been translated and validated for use in cross-cultural populations.29
We conducted a comprehensive and systematic review of QOL instruments that have been used to assess HNC patients over the past two decades and synthesized the published information on these measures using the SAC-MOT guidelines. Unlike other reviews, this review makes recommendations that take into consideration the frequency of utilization of each QOL instrument in the literature. For the purpose of this review, administrative and respondent burden were not assessed because it would require consideration of several subjective variables (disease burden, questionnaire format, response system, mode of delivery, and individual variability). Although, a number of generic measures of QOL and psychosocial functioning exist that have been used with HNC patients, our review focuses exclusively on HNC-specific instruments. By reviewing existing measures and discussing the selection of appropriate QOL instruments, with a view to making recommendations for future studies, we hope this review serves as a platform to improve QOL assessment in HNC, facilitate cross-study comparisons, and ultimately bridge the gap between research and clinical practice.