Measuring the sixth vital sign: A descriptive analysis of distress in individuals with head and neck cancer and their caregivers

Introduction: Distress has become so problematic in oncology that it has been recognized as the “sixth vital sign” implying that distress monitoring should occur as routinely as the monitoring of one’s temperature or blood pressure. The research reported herein investigated the impact of head and neck cancer on levels of distress, commonly reported problems, and perceptions of quality of life in individuals with head and neck cancer and their caregivers. Method: Two distinct studies were conducted; the first explored the patient experience of distress and quality of life while the second assessed the caregiver experience of these same constructs. A prospective, longitudinal research design was employed for the patient study while a cross-sectional design was utilized for the caregiver study. Measurement instruments included: (1) a demographic survey; (2) the Distress Thermometer and Problem Checklist; (3) the EORTC Quality of Life questionnaire (EORTC-QLQ-C30), and (4) the EORTC Head and Neck module (EORTC-QLQ-H&N35), to evaluate quality of life in individuals with head and neck cancer; and (5) the Caregiver Quality of Life-Cancer Scale (CQOLC) to assess quality of life in caregivers. Results: Data indicate that elevated distress can exist at any point along the continuum of care in both individuals with head and neck cancer and their caregivers. Relative to the patient population, distress was most prevalent at diagnosis and length of time following diagnosis had a large effect on perceived distress. Meanwhile 45% of caregiver participants reported clinically significant distress; both caregiver sex and the treatment status (i.e., awaiting treatment, undergoing treatment, completed treatment) of the individual for whom they were providing care influenced perceptions of distress in caregivers. Relative to quality of life, participants in both studies reported elevated burden in three primary domains: role fulfillment, physical functioning, and psychological well-being. Conclusion: Data suggest that perceptions of distress are individualized and heterogeneous in nature. Thus, routine distress screening represents a critical first step in the identification of elevated distress in both those with head and neck cancer and their caregivers. Through early identification and effective management of distress, comprehensiveness of care may be enhanced and long-term outcomes may be optimized.