Introduction: In the era of de-intensification, little data is available regarding patients’ priorities when considering treatment options and how these priorities change with survivorship. This study evaluates how head and neck squamous cell cancer (HNSCC) patients view the relative importance of preserving functions that may be impacted by treatment, in relationship to cure and survival time, and whether these considerations differ by tumor site and after treatment.
Methods: Patients with incident HNSCC ranked the relative importance of 12 priorities at diagnosis or after treatment completion on an ordinal scale (1-12 with 1 being most important), using a validated tool1. Domains included: “Keeping my natural voice”, “Being able to chew normally”, “Being cured of my cancer” (cure), “Having no pain”, “Keeping my appearance unchanged”, “Returning to my regular activities as soon as possible” (returning to activities), “Having a normal amount of energy for me”, “Keeping my normal sense of taste and smell, “Being understood easily”, “Living as long as possible”, “Having a comfortably moist mouth”, “Being able to swallow all foods and liquids” (swallowing). Medical record abstraction was performed for tumor site and stage. Mean ordinal rankings were compared by Wilcoxon rank-sum tests.
Results: 149 patients completed surveys; 42% at diagnosis and 58% after treatment. Oropharyngeal squamous cell cancer (OPSCC) patients comprised 63% of study patients. At diagnosis, patients prioritized cure (mean rank 1.7), “Living as long as possible” (4.3) and swallowing (4.5) as most important. Cure remained the top priority among patients after treatment (2.5), although after treatment swallowing (4.7) was ranked slightly higher than “Living as long as possible” (5.4). “Having a comfortably moist mouth” and “Keeping my normal sense of taste and smell” rose in importance in the post-treatment group compared with those at diagnosis (8.0 vs. 9.6, p=0.0002 and 7.4 vs. 6.3, p=0.04), whereas “Having no pain” fell in ranking (5.5 vs. 6.8, p=0.02). Patients with early stage HNSCC tended to rank “Being understood easily” as more important after treatment compared with at diagnosis (6.7 vs. 8.5, p=0.02). This consideration tended to be ranked lower after treatment by patients with late stage HNSCC (5.4 vs. 8.2, p=0.08).
Compared with non-OPSCC patients, OPSCC patients at diagnosis reported “Being understood easily” and “Keeping my natural voice” (each p≤0.05) as lower priority. After treatment, OPSCC patients gave a higher ranking to returning to activities than did non-OPSCC patients (6.0 vs. 6.2, p=0.06). Other factors had variable rank and did not differ significantly by tumor site, tumor stage, or whether ranking was performed at diagnosis compared with after treatment.
Conclusion: HNSCC patients report being cured of cancer as top priority, followed by survival time and swallow function, regardless of tumor site, or whether treatment had completed. While patients had slightly different prioritization of some functional outcomes by tumor site and time of ranking, the relative importance of most considerations stayed the same. The variability in prioritization of functional outcomes supports eliciting individual patient preferences during discussion of treatment options.
1 Sharp et al; Head Neck ,1999