Head and neck cancer survivorship from the patient perspective

Abstract

Background Survivorship is a critical part of head and neck cancer (HNC) care. In order to design better processes, we assessed care provided to long‐term HNC survivors and their priorities for ongoing care. Methods A survey was provided to HNC survivors at clinic appointments, including our HNC survivorship clinic. Questions focused on priorities for care in the otolaryngology clinic, types of care provided, and opioid use. Results Of 168 respondents, the most common priority for survivors was surveillance for recurrence (first priority in 75%), with general health the next most common (8%). Few respondents reported active primary care involvement in survivorship. About 10% of patients reported current opioid use. Conclusion Survivors face a large burden of symptoms and deficits, but our data show that most survivors focus on recurrence. Few survivors reported recall of survivorship care plan delivery or discussing cancer care needs with primary care providers.

Characterizing head and neck cancer survivors' discontinuation of survivorship care

“…Survivors can face a range of physical, psychological, and social challenges as a result of complex, often multimodal therapies involving surgery, radiation, and/or chemotherapy, including speech and swallowing difficulties; facial and shoulder pain, paralysis, and weakness; depression, anxiety, and diminished quality of life; and financial and employment challenges. [4][5][6][7][8][9] Along with persistent physical issues resulting from treatment and longlasting psychosocial and financial impacts, HNC survivors' risk for recurrence and second primary cancers engenders the need for continued cancer surveillance and screening, [10][11][12] and all of this reinforces the need for effective, long-term survivorship care. [13][14][15] Recent research has examined HNC survivors' utilization of posttreatment follow-up cancer care and has demonstrated that patient engagement in follow-up care decreases over time.…”

“…As of 2017, the estimated 480,000 HNC survivors composed approximately 3% of all cancer survivors, 3 and as more people with an HNC history are living and living longer, survivorship has become an increasingly important phase of HNC care delivery. Survivors can face a range of physical, psychological, and social challenges as a result of complex, often multimodal therapies involving surgery, radiation, and/or chemotherapy, including speech and swallowing difficulties; facial and shoulder pain, paralysis, and weakness; depression, anxiety, and diminished quality of life; and financial and employment challenges 4‐9 . Along with persistent physical issues resulting from treatment and long‐lasting psychosocial and financial impacts, HNC survivors' risk for recurrence and second primary cancers engenders the need for continued cancer surveillance and screening, 10‐12 and all of this reinforces the need for effective, long‐term survivorship care 13‐15 …”

Impact of provider type and number of providers on surveillance testing among survivors of head and neck cancers

“…29 Regardless, it is important to note that when surveyed, HNC survivors do appear to prefer following up with their oncologists, 30 and even after 5 years, these patients remain focused on surveillance testing for the purpose of detecting recurrences rather than managing long-term sequelae of treatment. 31 Patient survey responses must be carefully interpreted, however, because patients have been demonstrated to have been satisfied with their care when transitioned from a surgeon to a multidisciplinary survivorship clinic. The low levels of confidence among PCPs at managing long-term treatment sequelae and screening for HNCs, 32 in addition to the findings herein, suggest that further work is needed in educating and coordinating care with PCPs for HNC survivorship.…”

Follow‐up after oral cancer treatment—Transition to a personalized approach

“…17 An important part of survivorship for patients is surveillance for recurrence. 18 In order not to give patients false hope, it is very important that surveillance for recurrences is done in a manner that is effective and evidence based. The survivorship and follow-up plan should be an individualized, living document that is discussed with the patient when treatment is completed.…”