Abstract
Purpose
Despite its importance, little is known about the patterns and predictors of Survivorship Clinic attendance in head and neck cancer (HNC). We sought to determine the cumulative incidence of Survivorship Clinic attendance stratified by demographic, clinical, and socioeconomic factors, and to identify factors independently associated with attendance.
Methods
Our analysis population consisted of 2,252 patients diagnosed with primary HNC and seen at our institution’s HNC Survivorship Clinic after completing treatment from 2016–2021. Factors associated with increased likelihood of attending the Survivorship Clinic post-treatment, within five years of diagnosis, were identified using Cox proportional hazards regression.
Results
The overall cumulative incidence of Survivorship Clinic attendance reached 47.5% (95% confidence interval [CI]: 44.3–50.5%). Greater distance from clinic ((30–60 miles] hazard ratio [HR]: 0.58, 95% CI: 0.44–0.76, and > 60 miles HR: 0.46, 95% CI: 0.34–0.62) was independently associated with decreased likelihood of attendance. Factors independently associated with increased likelihood of attendance were stage III (HR: 1.47, 95% CI: 1.11–1.95) or IV (HR: 1.54, 95% CI: 1.15–2.05) cancer and treatment with radiotherapy (HR: 2.78, 95% CI: 2.12–3.64).
Conclusions
Less than half of our cohort attended the Survivorship Clinic post-treatment, within the first five years of diagnosis. Clinical factors, including disease stage and treatment modality, and social determinants, including distance from the clinic, were independently associated with Survivorship Clinic attendance.
Implications for cancer survivors
These findings underscore the need for targeted interventions to increase access to survivorship care in HNC.
Keywords: Head and neck cancer, Cancer survivorship, Social determinants of health, Access to survivorship care
Introduction
Head and neck cancer (HNC) is the seventh most common cancer globally, and incidence rates in the United States have increased by 15.5% since 2003 [1-3]. The overall survival rate of HNC has improved in recent years, partly due to the rising incidence of prognostically favorable human papillomavirus (HPV) + oropharyngeal cancer [4-7]. However, increased treatment intensity for certain types and stages of HNC has increased the risk of long-term complications due to treatment-associated effects [8]. Indeed, HNC treatment with multimodal therapy is associated with increased risk for dysphagia, fibrosis, xerostomia, and dental carries, primarily due to radiotherapy [9]. In addition to physical adverse effects, treatment can also lead to decreased quality of life (QOL) and financial toxicity [10-13]. Concerningly, HNC not only disproportionately affects the socioeconomically disenfranchised [14-17], but this subset of patients is also at increased risk of experiencing prolonged deficits [18-20]. Health-related QOL in HNC survivors is intimately tied to functional status and requires multidisciplinary collaborative care from providers, such as physicians, nurses, physical and occupational therapists, speech-language pathologists, and dentists [20, 21].
The importance of comprehensive, multidisciplinary survivorship care is becoming increasingly recognized and is reflected in the recently developed National Standards for Cancer Survivorship Care [22]. Despite these advances, only half of HNC providers report familiarity with the American Cancer Society Survivorship Care Guidelines, and fewer report that their institution has a dedicated survivorship program [23]. The establishment of survivorship programs and delivery of survivorship care are likely impeded by institutional barriers, including financial constraints, inadequate staff, and lack of facility space [24]. Furthermore, without consensus on the definition and structure of multidisciplinary HNC survivorship care, its delivery is institution specific. As a result, there remains a limited understanding of the barriers and facilitators influencing attendance at HNC Survivorship Clinics among survivors.
The present study aims to identify patterns and predictors of Survivorship Clinic attendance post-treatment, within the first five years following HNC diagnosis. In this retrospective cohort study, we 1) determine the cumulative incidence of Survivorship Clinic attendance stratified by demographic, clinical, and socioeconomic factors, and 2) identify factors associated with increased risk of non-attendance. We hypothesize that patients who live farther from the clinic, in neighborhoods with higher socioeconomic deprivation, and in rural areas will be the least likely to attend the Survivorship Clinic.
Methods
Design and setting
This is a single-center retrospective cohort study of HNC patients treated at the University of Pittsburgh Medical Center (UPMC). This study was approved by the University of Pittsburgh Institutional Review Board (IRB: STUDY20050058).
Founded in December 2016, the UPMC HNC Survivorship Clinic is a multidisciplinary clinic that currently uses an in-person model. The in-house survivorship team comprises HNC surgeons, advanced practice providers, nurses, speech-language pathologists, audiologists/communication facilitators, dentists/dental hygienists, physical therapists, and dietitians. These specialists rotate through the clinic room and meet with the patient individually during a single visit to provide recommendations and referrals for patients who would benefit from additional or longitudinal care, including referrals to community providers who may be more easily accessible to patients who live elsewhere. Generally, this visit is billed under a single copay. The Survivorship Clinic is open to all HNC patients, and it has been promoted to the HNC community and publicized through publications and presentations. Patients are directed to the clinic through a variety of means, including physician referrals, promotional materials, and word-of-mouth. Following treatment, annual visits are recommended. The UPMC HNC Survivorship Clinic is not intended to replace routine follow-up with medical and radiation oncologists; instead, it aims to supplement care and serve as a centralized resource for HNC patients. Finally, the Survivorship Clinic aims to facilitate continued therapy and services closer to home to minimize burden on survivors.
Data collection
Data was obtained through the institutional Organ-Specific Database (OSD) [25]. In brief, the HNC OSD contains demographic and clinical data for all patients with HNC treated by a UPMC Hillman Cancer Center physician. The database was queried for all patients diagnosed with HNC between 2016 and 2021. Although this date range includes the onset of the COVID-19 pandemic, the UPMC HNC Survivorship Clinic remained committed to providing survivorship care and implemented various measures to maintain patient access during this time, including expanding telehealth services [26]. Insurance information was obtained by querying the UPMC Network Cancer Registry. The HNC Survivorship Clinic provided records of patients who attended at least once since its inception in December 2016.
Participants
The HNC OSD query yielded 2,252 patients diagnosed with primary HNC between 2016 and 2021 who had completed treatment and were eligible to attend the Survivorship Clinic. Follow-up began at the end of treatment, which was defined as the date of surgery or date of last chemotherapy or radiotherapy treatment. The CONSORT diagram of our study sample is included in Online Resource 1.
Demographic variables
Demographic characteristics included age at diagnosis, sex assigned at birth (male/female), race/ethnicity, and smoking history. Race/ethnicity categories included Non-Hispanic White, Non-Hispanic Black, and Other/Unknown. Smoking history was classified as any history of tobacco use or none prior to diagnosis.
Clinical variables
Clinical variables included primary cancer site, stage, treatment modality, and most recent follow-up status. Primary cancer sites included oral cavity, HPV− oropharynx, HPV + oropharynx, larynx/hypopharynx, nasopharynx/nasal cavity and sinus, salivary, and head and neck cancer not otherwise specified (NOS).
To standardize clinical stage, the stage was recalculated for each anatomical site using American Joint Committee on Cancer (AJCC) 8th edition criteria for pathologic staging. If patients did not undergo surgery, clinical stage was used. In cases with insufficient data to recalculate either, the stage documented by the provider in the medical record was used, either AJCC 7th or 8th edition.
Treatment was independently classified for each modality, including surgery, radiotherapy, and chemotherapy. The 13 patients who received immunotherapy were excluded from the analysis given the small sample size and due to concerns that these patients may not be representative of the larger sample. Radiotherapy dose was categorized into doses less than 50 Gy (low doses), 50–70 Gy (standard/definitive treatment doses), and over 70 Gy (high doses).
Socioeconomic variables
Socioeconomic variables were derived from home addresses and insurance status. Insurance was categorized as Medicare, Medicaid, or private insurance. Those with armed services insurance were included with Medicare. Medicaid included patients who were not insured, as our institution’s policy is to assist HNC patients who are uninsured in enrolling in Medicaid.
Distance from the Survivorship Clinic was measured in miles as a straight line from the home address to the clinic and grouped into quartiles. Home addresses were geocoded using R studio. Each patient was geocoded to their census block group and census tract with the census geocoder [27]. The census block group was linked with the 2020 Neighborhood Atlas Area Deprivation Index (ADI), a validated measure of neighborhood socioeconomic deprivation, from the University of Wisconsin [28]. We used census tract-level rurality variables for the rural–urban context using the US Department of Agriculture’s Rural–Urban Communicating Area (RUCA) codes [29].
Outcome variable
Survivorship Clinic attendance was defined as a patient’s first visit to the HNC Survivorship Clinic after completing treatment, within five years post-diagnosis.
Statistical analysis
Descriptive statistics of demographic, clinical, and socioeconomic variables stratified by Survivorship Clinic attendance were performed using chi-squared testing. Univariate survival analysis was performed using Kaplan–Meier estimators to estimate the probability of attending the Survivorship Clinic over time and compared using the log-rank test. Patients’ most recent follow-up date and vital status were collected in December 2023. Any patients who died during follow-up or were lost to follow-up were censored and no longer contributed person-time. Cox proportional hazards regression was used for multivariable analysis. Statistical significance was set to an alpha of 0.05. R (4.3.3) was used for statistical analysis, and ArcGIS (3.30) was used for geospatial analysis and mapping.
Results
Patient characteristics
Of the 2,252 patients included in the present study, 730 (32.4%) attended the Survivorship Clinic at least once after completing treatment, while 1,522 (67.6%) did not. Table 1 summarizes demographic, clinical, and socioeconomic characteristics. Most of the study population was Non-Hispanic White (n = 2,049, 91%) and male (n = 1,623, 72.1%), with subtle but significant differences in the age, sex, race/ethnicity, and smoking history of those who did versus did not attend the Survivorship Clinic. Clinical factors also differed significantly between the two groups. The most common primary site among Survivorship Clinic attendees was HPV + oropharyngeal cancer (35.3%), and the most common overall stage was stage IV (36.3%). Additionally, most Survivorship Clinic attendees were treated with radiotherapy (80.3%) and received total doses of 50 to 70 Gy (95.3%). Finally, socioeconomic factors differed between the groups, with patients who attended the Survivorship Clinic being more likely to have private insurance (51.1%) and live within 11 miles of the clinic (35.7%).
Table 1.
Demographic, clinical, and socioeconomic features of head and neck cancer patients who do and do not attend the Survivorship Clinic, and probability of Survivorship Clinic attendance at 260 weeks (5 years) post-diagnosis
| Survivorship Clinic Attendance | Probability of Survivorship Clinic attendance (95% CI) |
|||
|---|---|---|---|---|
| Yes N = 730 N (%) |
No N = 1522 N (%) |
p-value | ||
| Age at diagnosis (years) | <0.001 | |||
| ≤ 45 | 46 (6.4) | 105 (7.1) | 44.3 (29.5, 56.0) | |
| (45–65] | 428 (59.4) | 749 (50.4) | 52.3 (47.9, 56.4) | |
| (65–75] | 195 (27.0) | 419 (28.2) | 44.9 (39.2, 50.1) | |
| >75 | 52 (7.2) | 214 (14.4) | 35.3 (23.2, 45.5) | |
| Sex | 0.019 | |||
| Male | 550 (75.3) | 1073 (70.5) | 50.8 (46.9, 54.5) | |
| Female | 180 (24.7) | 449 (29.5) | 39 (33.8, 43.8) | |
| Race/Ethnicity | 0.013 | |||
| Non-Hispanic White | 660 (90.4) | 1389 (91.3) | 46.9 (43.6, 50.1) | |
| Non-Hispanic Black | 55 (7.5) | 78 (5.1) | 62.9 (47.8, 73.6) | |
| Other/Unknown | 15 (2.1) | 55 (3.6) | 34.2 (15.1, 49) | |
| Smoking History | 0.129 | |||
| Yes | 517 (70.8) | 1122 (74.0) | 46.7 (42.9, 50.2) | |
| No | 213 (29.2) | 395 (26.0) | 49.1 (43.1, 54.5) | |
| Primary Cancer Site | <0.001 | |||
| Oral Cavity | 216 (29.6) | 493 (32.4) | 42.7 (37.3, 47.7) | |
| HPV-negative Oropharynx | 49 (6.7) | 101 (6.6 | 49.1 (36.1, 59.5) | |
| HPV-positive Oropharynx | 258 (35.3) | 260 (17.1) | 63.9 (57.6, 69.3) | |
| Larynx/Hypopharynx | 146 (20.0) | 387 (25.4) | 45.2 (37.8, 51.8) | |
| Nasopharynx/Nasal cavity/Sinus | 25 (3.4) | 146 (9.6) | 25.5 (14.2, 35.3) | |
| Salivary | 18 (2.5) | 94 (6.2) | 25.0 (13.1, 35.4) | |
| Head and Neck, NOS | 18 (2.5) | 41 (2.7) | 48.2 (25.2, 64.2) | |
| Stage | <0.001 | |||
| I | 190 (26.6) | 488 (33.8) | 39.6 (34.0, 44.8) | |
| II | 147 (20.6) | 265 (18.3) | 48.1 (41.0, 54.3) | |
| III | 114 (16.0) | 197 (13.6) | 54.2 (44.7, 62.1) | |
| IV | 259 (36.3) | 442 (30.6) | 56.4 (50.0, 61.9) | |
| Metastatic | 4 (0.6) | 53 (3.7) | 39.4 (0.0, 67.8) | |
| Surgery | 0.174 | |||
| Yes | 439 (60.1) | 962 (63.2) | 42.2 (38.5, 45.7) | |
| No | 291 (39.9) | 560 (36.8) | 60.2 (53.6, 65.9) | |
| Radiotherapy | 0.174 | |||
| Yes | 586 (80.3) | 819 (53.8) | 60.3 (56.1, 64.1) | |
| No | 144 (19.7) | 703 (46.2) | 25.6 (21.3, 29.7) | |
| Radiotherapy Dose (Gy) | <0.001 | |||
| <50 | 11 (1.9) | 84 (10.8) | 24.5 (9.2, 37.3) | |
| [50-70] | 549 (95.3) | 636 (81.6) | 63.9 (59.4, 67.8) | |
| >70 | 16 (2.8) | 59 (7.6) | 32 (17.1, 44.3) | |
| Chemotherapy | <0.001 | |||
| Yes | 374 (51.2) | 496 (32.6) | 62.4 (57.0, 67.1) | |
| No | 356 (48.8) | 1026 (67.4) | 38.1 (34.2, 41.7) | |
| Insurance | <0.001 | |||
| Medicare | 190 (29.3) | 521 (39.7) | 42.1 (36.2, 47.5) | |
| Medicaid | 127 (19.6) | 290 (22.1) | 44.1 (36.5, 50.8 | |
| Private | 331 (51.1) | 501 (38.2) | 53.4 (48.2, 58.1 | |
| Distance from Survivorship Clinic (miles) | <0.001 | |||
| ≤ 11 | 255 (35.7) | 296 (20.3) | 63.2 (57.1, 68.4) | |
| (11–30] | 207 (29.0) | 346 (23.8) | 50.9 (44.8, 56.3) | |
| (30–60] | 145 (20.3) | 378 (26.0) | 45.5 (37.5, 52.5) | |
| > 60 | 107 (15.0) | 436 (29.9) | 30.0 (24.0, 35.5) | |
| Area Deprivation Index | 0.002 | |||
| ≤ 55 (Less Deprivation) | 209 (29.5) | 341 (23.7) | 51.6 (45.4, 57.1) | |
| (55–73] | 197 (27.8) | 362 (25.2) | 49.3 (43.1, 54.8) | |
| (73–86] | 157 (22.2) | 368 (25.6) | 45.3 (38.4, 51.4) | |
| > 86 (More Deprivation) | 145 (20.5) | 367 (25.5) | 45.5 (37.6, 52.4) | |
| Rural-Urban Commuting Area | <0.001 | |||
| [1-2] (More Urban) | 530 (81.0) | 912 (68.7) | 52.1 (48.3, 55.7) | |
| [3-5] | 90 (13.8) | 284 (21.4) | 36.1 (28.3, 43.1) | |
| [6-8] | 21 (3.2) | 97 (7.3) | 29.4 (13.1, 42.7) | |
| [9-10] (More Rural) | 13 (2.0) | 35 (2.6) | 52.8 (20.0, 72.1) | |
Cumulative incidence of Survivorship Clinic attendance
The cumulative incidence of Survivorship Clinic attendance for all patients reached 47.5% (95% confidence interval [CI]: 44.3–50.5%) by 260 weeks (five years) post-diagnosis (Online Resource 2; Table 1). The most rapid rise in Survivorship Clinic attendance occurred within the first 50 weeks following diagnosis. This general pattern was observed across all strata of Survivorship Clinic attendance (Fig. 1).
Fig. 1.
Cumulative incidence curves and associated risk tables of Survivorship Clinic attendance over time, measured in weeks since diagnosis. Log-rank tests and associated p-values between the curves are provided and stratified based on site (A), stage (B), radiation therapy (C), and distance (D)
The cumulative incidence of attending the Survivorship Clinic varied based on clinical factors. When stratified by disease site, the incidence of attendance was highest for patients with HPV + oropharyngeal cancer (63.9%, 95% CI: 57.6–69.3%) and lowest for those with salivary gland (25.0%, 95% CI: 13.1–35.4%) or nasopharyngeal/nasal cavity/sinus (25.5%, 95% CI: 14.2–35.3%) cancer (Fig. 1A). Patients with stage III or IV cancer had the highest incidence of attendance (54.2%, 95% CI: 44.7–62.1% and 56.4%, 95% CI: 50.0–61.9%, respectively), while those with stage I had the lowest (39.6%, 95% CI: 34.0–44.8%, Fig. 1B). Treatment modality, which was independently coded for radiotherapy, chemotherapy, and surgery, was also significantly associated with Survivorship Clinic attendance. Patients treated with radiotherapy were more likely to attend the Ssurvivorship Clinic (60.3%, 95% CI: 56.1–64.1%) than those who were not treated with radiotherapy (25.6%, 95% CI: 21.3–29.7%, Fig. 1C). Similarly, patients treated with chemotherapy were more likely to attend the Survivorship Clinic (62.4%, 95% CI: 57.0–67.1%) than those who did not receive chemotherapy (38.1%, 95% CI: 34.2–41.7, Online Resource 3 A). Conversely, patients who were treated surgically were less likely to attend the Survivorship Clinic (42.2%, 95% CI: 38.5–45.7%) than non-surgical patients (60.2%, 95% CI: 53.6–65.9%, Online Resource 3B).
The incidence of attending the Survivorship Clinic varied with socioeconomic factors. Patients with private insurance had higher rates of attendance (53.4%, 95% CI: 48.2–58.1%) than those with Medicare (42.1%, 95% CI: 36.2–47.5%) or Medicaid (44.1%, 95% CI: 36.5–50.8%) insurance (Online Resource 4). Distance also influenced the incidence of attending the Survivorship Clinic. Patients living within an 11-mile radius of the Survivorship Clinic were the most likely to attend (63.2%, 95% CI: 57.1–68.4%), with a stepwise decrease in attendance with each quartile increase in distance (Fig. 1D). Maps of transposed patient locations stratified by Survivorship Clinic attendance and ADI and RUCA are presented in Online Resource 5 and Fig. 2, respectively. The average ADI of the cohort was 68.6, with a median of 73.0. Patients living in less disadvantaged block groups (ADI ≤ 73) were more likely to attend the Survivorship Clinic (Online Resource 6 A). Patients living in the most rural (RUCA 9–10; 52.8%, 95% CI: 20.0–72.1%) and the most urban (RUCA 1–2; 52.1%, 95% CI: 48.3–55.7%) areas were more likely to attend the Survivorship Clinic compared to those in micropolitan areas (RUCA 3–5; 36.1%, 95% CI: 28.3–43.1%) or small towns (RUCA 6–8; 29.4%, 95% CI: 13.1–42.7%; Online Resource 6B)
Fig. 2.
Rural–Urban Commuting Area code quartiles by census tract and patient locations, stratified by whether they attend the Survivorship Clinic
Factors associated with Survivorship Clinic attendance
A mutually adjusted Cox proportional hazards regression model demonstrated that clinical and socioeconomic variables were associated with the likelihood of Survivorship Clinic attendance (Table 2). Testing of the proportional hazards assumption was satisfactory.
Table 2.
Mutually adjusted hazard ratios for demographic, clinical, and socioeconomic factors associated with Survivorship Clinic attendance
| Hazard Ratio (95% Confidence Interval) |
p-value | |
|---|---|---|
| Age (years) | ||
| ≤ 45 | 1 [Reference] | |
| (45–65] | 1.18 (0.82, 1.7) | 0.373 |
| (65–75] | 1.35 (0.9, 2.01) | 0.146 |
| > 75 | 0.98 (0.6, 1.61) | 0.946 |
| Race/Ethnicity | ||
| Non-Hispanic White | 1 [Reference] | |
| Non-Hispanic Black | 1.21 (0.87, 1.68) | 0.269 |
| Other/Unknown | 0.79 (0.42, 1.48) | 0.463 |
| Sex | ||
| Male | 1 [Reference] | |
| Female | 0.98 (0.8, 1.21) | 0.864 |
| Primary Site | ||
| Oral Cavity | 1 [Reference] | |
| HPV-negative Oropharynx | 1.08 (0.74, 1.58) | 0.691 |
| HPV-positive Oropharynx | 1.27 (0.95, 1.71) | 0.105 |
| Larynx/Hypopharynx | 0.69 (0.53, 0.9) | 0.007 |
| Nasopharynx/Nasal cavity/Sinus | 0.28 (0.16, 0.48) | <0.001 |
| Salivary | 0.49 (0.28, 0.88) | 0.016 |
| Head and Neck NOS | 1.4 (0.68, 2.89) | 0.355 |
| Stage | ||
| Stage I | 1 [Reference] | |
| Stage II | 1.13 (0.87, 1.46) | 0.355 |
| Stage III | 1.47 (1.11, 1.95) | 0.007 |
| Stage IV | 1.54 (1.15, 2.05) | 0.003 |
| Metastatic | 0.41 (0.13, 1.31) | 0.131 |
| Surgery | ||
| No | 1 [Reference] | |
| Yes | 1.14 (0.93, 1.41) | 0.217 |
| Radiotherapy | ||
| No | 1 [Reference] | |
| Yes | 2.78 (2.12, 3.64) | <0.001 |
| Chemotherapy | ||
| No | 1 [Reference] | |
| Yes | 1.29 (1.04, 1.59) | 0.021 |
| Insurance | ||
| Medicare | 1 [Reference] | |
| Medicaid | 1 (0.77, 1.29) | 0.989 |
| Private | 1.07 (0.85, 1.35) | 0.542 |
| Distance from Survivorship Clinic (miles) | ||
| ≤ 11 | 1 [Reference] | |
| (11–30] | 0.85 (0.69, 1.05) | 0.133 |
| (30–60] | 0.58 (0.44, 0.76) | <0.001 |
| > 60 | 0.46 (0.34, 0.62) | <0.001 |
| Area Deprivation Index | ||
| ≤ 55 (Less Deprivation) | 1 [Reference] | |
| (55–73] | 0.92 (0.73, 1.15) | 0.458 |
| (73–86] | 0.8 (0.62, 1.03) | 0.081 |
| > 86 (More Deprivation) | 0.9 (0.7, 1.16) | 0.425 |
| Rural-Urban Commuting Area | ||
| 1-2 (More Urban) | 1 [Reference] | |
| 3-5 | 0.89 (0.67, 1.2) | 0.454 |
| 6-8 | 0.65 (0.38, 1.11) | 0.113 |
| 9-10 (More Rural) | 1.18 (0.59, 2.35) | 0.638 |
Primary cancer site, stage, and treatment with radiotherapy influenced Survivorship Clinic attendance. Compared to patients with oral cavity cancer (reference), patients with laryngeal/hypopharyngeal (hazard ratio [HR]: 0.69, 95% CI: 0.53–0.9), nasopharyngeal/nasal cavity/sinus (HR: 0.28, 95% CI: 0.16–0.48), or salivary gland (HR: 0.49, 95% CI: 0.28–0.88) cancer were less likely to attend the Survivorship Clinic. Patients with stage III (HR: 1.47, 95% CI: 1.11–1.95) or IV (HR: 1.54, 95% CI: 1.15–2.05) cancer were more likely to attend the Survivorship Clinic (reference: stage I). Treatment with radiotherapy was also associated with an increased likelihood of Survivorship Clinic attendance (HR: 2.78, 95% CI: 2.12–3.64).
The socioeconomic factor independently associated with Survivorship Clinic attendance was proximity to the clinic. The likelihood of attending the Survivorship Clinic decreased with increasing distance quartiles. Compared to patients who lived 11 miles or fewer from the the Survivorship Clinic, those who lived between 30 and 60 miles away (HR: 0.58, 95% CI: 0.44–0.76) and more than 60 miles away (HR: 0.46, 95% CI: 0.34–0.62) were less likely to attend.
Discussion
The present study is the first to investigate factors associated with HNC Survivorship Clinic attendance. We found that less than half of HNC patients at our institution attended the Survivorship Clinic after completing treatment, within the first five years following diagnosis. While attendance rose rapidly within the first two years post-diagnosis, less than 40% of patients in our cohort visited the Survivorship Clinic during this timeframe, which can be critical for monitoring for recurrence and managing post-treatment sequelae [23]. In our final model, primary site, stage, treatment modality, and distance from the Survivorship Clinic were independently associated with Survivorship Clinic attendance. Since only a quarter of institutions report having a dedicated HNC Survivorship Clinic [23], the sparsity of data surrounding HNC Survivorship Clinic attendance makes it difficult to contextualize these findings. However, it is reasonable to postulate that despite having access to a service that many institutions currently do not provide, limited HNC survivors at our institution benefit from this service. Further research is necessary to understand the barriers and facilitators to Survivorship Clinic attendance and to improve access.
Referral patterns may contribute to differences in Survivorship Clinic attendance over time. Our institution’s referral to the Survivorship Clinic is not automatic and thus may vary based on provider-specific referral patterns and patient factors such as primary cancer site, stage, and treatment modality. For example, in our cohort, patients with nasopharyngeal/nasal cavity/sinus cancer were less likely to attend the Survivorship Clinic than those with oral cavity cancer. At our institution, nasopharyngeal/nasal cavity/sinus cancer is managed primarily by skull base surgeons rather than HNC surgeons, who may be more familiar with the Survivorship Clinic and, therefore, more likely to refer patients. Furthermore, since the information that patients receive about the Survivorship Clinic varies by referring provider, providing standardized information to all HNC patients may help increase attendance. Additionally, attendance may also reflect differences in referral patterns based on treatment. Indeed, treatment with radiotherapy had the most significant impact on the probability of attending the Survivorship Clinic. Patients who receive radiotherapy may be more likely to be referred to the Survivorship Clinic due to the high risk of treatment-associated toxicities, including fibrosis [30-32]. Furthermore, since our Survivorship Clinic employs dentists, patients who receive radiotherapy may be more likely to attend so they can access dental care.
Patient preference may also play a role in Survivorship Clinic attendance. Patients diagnosed at stage III or IV were more likely to attend than those diagnosed at stage I. Those diagnosed at later stages may be more likely to be referred to the Survivorship Clinic, or more inclined to pursue continued monitoring for recurrences or management of symptoms. Furthermore, as treatment for advanced-stage HNC is often multimodal, patients may be at higher risk of treatment-associated adverse effects [9], which in turn may motivate them to pursue survivorship care. Patients with little concern after their HNC diagnosis and treatment who perceive their quality of life to be high may not feel compelled to attend the Survivorship Clinic. Therefore, the HNC Survivorship Clinic may consider using tools such as the Patient Concerns Inventory (PCI) to identify patients with higher support needs who would benefit from more intensive survivorship care [33].
Survivorship Clinic attendance declined with increasing distance. While transportation and travel time affect patients who live farther away, this association is also likely tied to other factors. In our final model, ADI and RUCA were not significant factors in determining the likelihood of Survivorship Clinic attendance. However, we suspect this was likely due to the relationship between ADI, RUCA, and distance. More rural and disadvantaged areas tend to have fewer local resources, and existing resources may not be consolidated in one geographic area. Previous research suggests that HNC patients in rural settings experience higher stress and burden due to these access barriers [34], thus limiting their ability to overcome barriers (e.g., time lost to travel, paid parking) to access an urban Survivorship Clinic. Furthermore, other factors, such as health literacy, depression and anxiety, and substance use disorder, may affect access to survivorship care for HNC patients living in more rural or disadvantaged areas [35, 36].
Currently, our Survivorship Clinic uses an in-person model with annual visits. However, survivorship care does not have to follow a single model. Given that distance from the Survivorship Clinic was the most significant geospatial factor affecting attendance in our patient population, interventions that address this distance barrier may be effective ways to increase access to survivorship care. For example, telemedicine has been associated with positive outcomes for both patients and providers in rural communities [37]. In HNC, telemedicine is effective in improving patient outcomes across the cancer continuum; however, its effectiveness appears to vary based on personal factors, including age and gender [38, 39]. Since speech pathologists and physical therapists at our Survivorship Clinic have successfully employed virtual evaluations, expanding telehealth services may be an effective way to increase engagement with HNC survivorship care [26]. Alternative technology-based strategies, such as the survivorship needs assessment planning (SNAP) tool, which uses an algorithmic approach to survivorship care, have also successfully increased access [40]. Therefore, a multimodal approach to survivorship care may be necessary to improve access for patients with different needs.
In our univariate analysis, insurance status was initially significantly associated with Survivorship Clinic attendance but was not independently associated after adjusting for clinical and socioeconomic factors. Our findings highlight that factors beyond the cost of care play a more pivotal role in determining clinic attendance. Factors such as treatment patterns, socioeconomic status, and transportation access were more strongly linked to engagement with survivorship care. Therefore, expanding insurance coverage alone may not be sufficient to equalize access to survivorship care; addressing non-financial barriers like geographic challenges and logistical issues are likely necessary. Enhancing transportation access, improving neighborhood support, and offering telehealth services could help increase participation in survivorship care, ultimately leading to better patient health outcomes.
Limitations
The present study was limited in two important ways. First, it was a single-center retrospective cohort study with a relatively homogeneous sample. Although the demographics of our sample are consistent with previous studies from this institution [10, 11, 41], it may not be representative of the entire HNC population. Second, while we are studying socioeconomic variables at the block group and census tract level, we do not have individual-level socioeconomic status other than insurance status. Since marital status and educational attainment were not collected in the OSD, we were unable to investigate potential sources of social and occupational support that may influence Survivorship Clinic attendance. Furthermore, we were unable to investigate the role of factors such as comorbidities, frailty, and cognitive impairments, due to lack of available data. Future research investigating the impact of socioeconomic factors on Survivorship Clinic attendance at the patient level is needed to confirm these initial results. However, given the relative sparsity of data on factors influencing HNC Survivorship Clinic attendance, we determined these limitations to be justified.
Conclusions
The present study represents the first analysis of factors contributing to HNC Survivorship Clinic attendance. We found that within the first five years of diagnosis, less than half of our HNC patients attended the Survivorship Clinic after completing treatment, with the likelihood of attendance impacted by clinical factors (i.e., site, stage, and treatment) and socioeconomic factors (i.e., distance). Disparities in attendance at our Survivorship Clinic suggest that our model for providing multidisciplinary survivorship care can possibly be improved through tools to identify patients with the greatest needs, standardization of referrals and information patients receive about the clinic, and expansion of telehealth services to increase access. Further research is needed to investigate the economic and health benefits of providing HNC survivorship care to support the development of new programs, and to understand perceived barriers and facilitators for patients accessing survivorship care.
Supplementary Material
Supplementary information The online version contains supplementary material available at https://doi.org/10.1007/s11764-025-01878-2.
Funding
Data collection for this work was supported by National Institutes of Health grants Head and Neck Specialized Program of Research Excellence (SPORE) P50 CA097190-17. Additionally, this project used the Hillman Cancer Bioinformatics Services that is supported in part by award P30CA047904.
Competing interests
Dr. Osazuwa-Peters reported receiving grants from the National Institutes of Health/National Institute of Dental and Craniofacial Research (K01 DE030916; R01 DE032216; R21 DE032531) outside of this work. Dr. Osazuwa-Peters has also received consulting fees from Navigating Cancer and Merck. Dr. Nilsen reported receiving grants from the National Cancer Institute (R37CA279210) and the Gordon and Betty Moore Foundation (GBMF9048) outside the submitted work. Dr. Mowery was supported by a grant from the National Institutes of Health/National Institute of Dental and Craniofacial Research (K08 DE029887).
Footnotes
Ethics approval This study was approved by the University of Pittsburgh Institutional Review Board (IRB: STUDY20050058).
Consent to participate As a retrospective cohort study, the IRB granted an informed consent exemption.
Data availability
The de-identified datasets generated and analyzed during the current study are available from the corresponding author on reasonable request
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The de-identified datasets generated and analyzed during the current study are available from the corresponding author on reasonable request