The American Cancer Society estimates that there were 1.68 million newly diagnosed cases of cancer in the U.S. in 2016, with an associated 595,690 deaths.1 Of this number, about 3% was attributable to head and neck cancer (HNC), with 48,330 new cases and 9,570 deaths in 2016. Cancer is among the leading causes of death worldwide, and veterans have a prevalence of HNC nearly twice that of the general population.2 The number of people living with and beyond a cancer diagnosis in the U.S. has risen to an estimated 15.5 million survivors.
Head and neck cancer comprises several subsites, including the oral cavity (lips, buccal mucosa, anterior tongue, floor of mouth, hard palate, and gingiva), the pharynx (nasopharynx, oropharynx, and hypopharynx), the larynx (supraglottis, glottis, and subglottis), the nasal cavity, paranasal sinuses, and the saliva glands.3 The economic burden for HNC treatment was estimated at $3.64 billion in 2010.4
Treatment is based on primary site and staging, and staging is according to the tumor node metastasis system of the American Joint Committee on Cancer.5 In general, lower stages (in situ, stages I and II) are treated with single modalities of organ-sparing surgery or radiation, whereas higher stages (stages III and IV) are treated with multiple modalities, which may include radiation combined with chemotherapy or surgery before or after radiation/chemotherapy.
Survival rate after treatment varies by primary site, cancer stage at diagnosis, histopathologic cell type, viral association, tobacco use, chemical exposure, and treatment modality; survival ranges from 24% to 90% at 5 years based on these variables.6 There is not yet a reliable blood test or other biochemical marker for recurrence, and serial radiologic examinations are expensive and expose the survivor to large amounts of additional ionizing radiation.7,8 Surveillance for recurrence after treatment consists primarily of physical examination and reported symptoms, which may be difficult for the primary care provider (PCP) to perform and distinguish from treatment sequelae.9,10 Thus, HNC survivors are followed in the ear, nose, and throat (ENT) otolaryngology clinic on a decreasing frequency schedule based on risk of relapse, second primaries, treatment sequelae, and toxicities (every 1-3 months in year 1, 2-6 months in year 2, 4-8 months in years 3-5, and every 12 months after 5 years) according to the National Comprehensive Cancer Network (NCCN) guidelines.11
Adherence with posttreatment surveillance in HNC recently was associated with length of survival; however, this observation at a single tertiary academic center was discordant with earlier published reports.12-15 About 80% to 90% of all postcurative intent treatment recurrences and second primary cancers occur within the first 4 years, with a better functional outcome if the recurrence is surgically salvageable or amenable to adjuvant radiation or combined radiation and chemotherapy.16,17 Nonadherence is generally associated with worse clinical and acute care utilization outcomes.18
Problem
At the Raymond G. Murphy VAMC, a tertiary care center in Albuquerque, New Mexico, there was a propensity of veteran HNC patients who missed scheduled surveillance appointments or were lost to follow-up. An informal review of several VA ENT departments revealed similar issues without any consistent method to solve the problem. In an effort to recapture these patients, in 2011 an ENT registered nurse (RN) was added to the team as cancer care coordinator (CCC). After several weeks of chart review of clinic records, it was determined that 31% of HNC patients had missed 1 or more ongoing surveillance appointments, either by patient no-show, clinic cancellations that failed to reschedule patients, or patient cancellation without rescheduling. The CCC was tasked with recapturing these lost patients, returning them to regular follow-up per NCCN guidelines, and tracking new cancer patients as they were diagnosed and progressed through treatment and surveillance. As there had been no one previously in this role in the ENT clinic, there was no guidance about how to proceed.
The mechanism in place for rescheduling no-show patients at that time consisted of a mailed postcard reminder sent by a medical support assistant who requested that the veteran contact the clinic to reschedule. Veterans reported that these reminders often appeared in their mail mingled with so-called junk mail and were discarded without reading. The CCC spent several more weeks examining clinic records in the computerized patient record system (CPRS), looking for patients with cancer in the 5-year surveillance period, and compiling a database of survivors and newly diagnosed patients. This database was compiled initially on paper and then converted to a spreadsheet. Patients who had missed appointments were contacted by the CCC and rescheduled, which resulted in a 100% recovery rate.
Unfortunately, although the manual tracking process was successful, it was laborious and time consuming. Weekly and sometimes daily examination of CPRS clinic records for new patients and survivor adherence was followed by tedious data entry into the spreadsheet. The manual tracking system was deemed suboptimal and a Lean Six Sigma process improvement project was initiated. The project goal was to produce a dashboard database tool that was patient centered to improve the quality of cancer care to veterans.
