Advancing Education, Research, and Quality of Care for the Head and Neck oncology patient.
Introduction: Head and neck cancer (HNC) is one of the most psychologically distressing cancer types, given its profound impact on essential functions such as speech, swallowing, and appearance. HNC survivors are nearly twice as likely to die from suicide than survivors of other cancers, and distress may be the first recognizable clinical symptom of adverse psychosocial concerns in this population. The Distress Thermometer (DT) is a validated tool that screens cancer patients for symptoms of distress on a 0-10 rating scale. Additionally, the DT includes a “problem list" that identifies specific sources of distress under physical, practical, and emotional domains. However, it is unknown whether there is any correlation between distress levels and endorsement of problem list items on the DT.
Objective: To assess the association between distress levels and problem list items endorsed by patients with HNC, and evaluate how specific needs differ across distress severity levels.
Methods: We analyzed data from 507 patients with HNC, and grouped DT scores as: no distress (score = 0, n = 134), mild distress (score = 1-3, n = 141), and clinically meaningful distress (score = 4-10, n = 232). We calculated number of endorsement of individual problem list items, and also calculated items by problem list domains (physical, practical, and emotional). Spearman’s correlation assessed the correlation between distress scores and total problem burden. Logistic regressions evaluated associations between endorsing problem items and distress scores, adjusting for demographic predictors including age, sex, race, marital status, smoking and alcohol use.
Results: We found a weak but statistically significant, positive correlation between distress levels and total problem list burden (r = 0.11, p = 0.016), suggesting that patients with higher distress are more likely to report multiple concerns. The 10 most frequently reported problem list items were pain, changes in eating, worry or anxiety, fatigue, nervousness, treatment decision, fear, sleep, sadness or depression, and feeling swollen. The top reported problem of the physical, emotional, and practical domains were pain, worry or anxiety, and treatment decision, respectively. In our final models, individuals with clinically meaningful distress were more likely to endorse worry and anxiety (aOR = 5.05, 95% CI 1.70-15.04), and practical concern with treatment decisions (aOR = 3.49, 95% CI 1.16-10.53) compared to those without distress. Individuals with mild distress showed no significant differences in worry/anxiety or treatment decision compared to those without distress or with meaningful distress. Also, distress levels were not significantly associated with reporting pain (p = 0.26).
Conclusions: Over half of our patients did not meet the threshold for clinically meaningful distress and therefore would not qualify for intervention by National Comprehensive Cancer Network guidelines. This represents a significant proportion of patients who may experience worry and anxiety, and pain, all of which have quality of life and survival implications. Patients’ reports of pain were independent of distress levels, indicating that pain is a ubiquitous problem that must be addressed in patients with HNC with or without clinically meaningful distress.