The NCCN published survivorship guidelines in 2017 recommending survivorship programs incorporate an annual late and long-term effects assessment into routine follow up. A recommended template of 27 questions with comprehensive practice recommendations were included in this guideline. Although recommended, implementation poses challenges and resources need to be identified to address the unique needs of cancer survivors.
A 33-item survey was developed at our institution based on the NCCN guidelines. Additionally, practice recommendations and dedicated survivorship order sets were created based on the NCCN guidelines for positive response to survey questions. The survey addresses patient concerns regarding cardiac health, emotional health, cognitive function, fatigue and sleep, sexual function, endocrine function, general health, and preventative care since the completion of treatment. The survey was given to all head and neck cancer patients at their initial survivorship visit and was administered over a 9 month period of time. Results and identified concerns were reviewed during the survivorship visit and appropriate referrals were placed based on NCCN guidelines.
63 patients completed a survivorship visit and survey between September 2018 and June 2019. Tumor primary sites included oropharynx (55.6%), larynx (15.9%) and oral cavity (11.1%). Most patients were Caucasian (90.5%), male (68.3%), current or former smokers (58.8%), and HPV positive (55.6%). Over half had been treated with concurrent chemoradiotherapy (69.8%). Patients identified 0-13 concerns (mean 3.55) with 49% identifying only 0-2. Those who rated their health as excellent (n=5) had 0-4 concerns, good (n=48) 0-9 concerns, and fair (n=10) 0-13. No patients rated their health as poor. Concerns identified in greater than 15% of head and neck survivors included: fear of recurrence (39.7%), trouble remembering (25.4%), trouble staying or falling asleep (20.6%), slowed or trouble thinking (19%), persistent swelling (19%), weight concerns (19%), difficulty coping with diagnosis (17.5%), difficulty multitasking or concentrating (17.5%) not eating adequate fruits and vegetables (17.5%), and inability to stop or control worry (15.9%). 14% of patients have not re-established care with a PCP and 7.9% were not up to date on vaccines or wellness screenings. No significant differences in responses were found by gender or tumor HPV positivity.
Common areas of concern can be identified by survey among head and neck cancer survivors. Direct treatment-related concerns, such as persistent swelling (lymphedema), weight concerns, or not eating adequate fruits and vegetables are somewhat expected as patients recover from treatment-induced toxicities. However, emotional health and cognitive function were areas of significant patient concern highlighting the need for ongoing psychosocial assessments beyond the completion of therapy. Future research is planned to assess the changing concerns of survivors over time.