Development of a survivorship needs assessment planning tool for head and neck cancer survivors and their caregivers: a preliminary study

The purpose of this study was to characterize primary end-of-treatment challenges in head and neck cancer (HNC) to drive the development of a survivorship needs assessment planning (SNAP) tool and evaluate its acceptability and feasibility.

Using qualitative methods (focus groups, interviews), we identified physical, emotional, and social post-treatment challenges from the perspectives of survivors (N = 17), caregivers (N = 14), and healthcare providers (N = 14) and pretested the SNAP tool. After Advisory Board ratings and consensus, the tool was finalized.

Survivors, caregivers and clinicians consistently highlighted the importance of assessing symptoms and functional abilities (e.g., dry mouth, speech/swallowing difficulties, weight loss), health behaviors (e.g., smoking, alcohol), emotional concerns (e.g., depression, isolation, nutritional distress), and social challenges (e.g., support, finances). Caregivers were overwhelmed and intensely focused on survivors’ nutrition and trach/feeding tube care while clinicians emphasized financial and access concerns. Most participants were enthusiastic about the tool and directed a flexible care plan design due to variability in dyad needs. Over 75% reported high comfort using and navigating questions on a tablet and were in strong agreement that the care plan would help families practically and emotionally. Coordination of survivorship visits with follow-up care was critical to address travel and time barriers. While survivors and clinicians recommended waiting 1–6 months after treatment, caregivers preferred earlier survivorship visits.

Results pinpointed optimal end-of-treatment domains for routine assessment and support the feasibility of implementing a SNAP tool in the clinic.

Capitalizing on technology to direct HNC survivorship care is promising.