Neighborhood Deprivation and Symptoms, Psychological Distress, and Quality of Life Among Head and Neck Cancer Survivors.

Importance: Socioeconomic deprivation is associated with increased risk of poor health and quality-of-life (QOL) outcomes in head and neck cancer (HNC) survivors. However, there are few data on how neighborhood deprivation affects patient-reported outcome measures (PROMs) in HNC survivors. Objective: To investigate whether neighborhood socioeconomic deprivation is associated with symptom burden, psychological distress, and QOL among HNC survivors. Design, Setting, and Participants: This cross-sectional study used prospectively collected data from patients seen in a university-affiliated multidisciplinary HNC survivorship clinic between September 2018 and September 2021 who received radiotherapy for squamous cell carcinoma of the oral cavity, oropharynx, and larynx or hypopharynx. Exposure: Neighborhood socioeconomic deprivation, measured using the Area Deprivation Index (ADI). Main Outcomes and Measures: The PROMs pertaining to symptom burden and severity of psychological distress were measured using the Neck Disability Index, Insomnia Severity Index, the 10-item Eating Assessment Tool, the Generalized Anxiety Disorder 7-item scale, and the 8-item Patient Health Questionnaire. Physical and social-emotional QOL were obtained using the University of Washington QOL questionnaire. Multivariable linear regression analysis adjusting for individual-level sociodemographic, comorbidity, and treatment characteristics investigated the association between ADI and PROMs. A subgroup analysis was performed to compare the lowest (most affluent areas: ADI, 0%-20%) and highest (most deprived areas: ADI, 80%-100%) ADI quintiles. Results: A total of 277 patients were included in the final analysis (mean [SD] age, 64.18 [9.60] years; 215 [77.6%] male). Cancer sites were the oral cavity (52 [18.8%]), oropharyngeal area (171 [61.7%]), and larynx or hypopharynx (54 [19.5%]). Multivariable analysis showed that for every 1-point increase in ADI, social-emotional QOL changed by -0.14 points (95% CI, -0.24 to -0.05 points), anxiety increased by 0.03 points (95% CI, 0.01-0.06 points), and neck disability worsened by 0.05 points (95% CI, 0.01-0.10 points). Compared with patients in the most affluent areas, those in the most deprived areas had significantly lower physical (-15.89 points; 95% CI, -25.96 to -2.31 points; Cohen d = -0.83) and social-emotional (-13.57 points; 95% CI, -22.79 to -3.49 points; Cohen d = -0.69) QOL and higher depression (2.60 points; 95% CI, 0.21-4.40 points; Cohen d = 0.52), anxiety (3.12 points; 95% CI, 1.56-4.66 points; Cohen d = 0.61), insomnia (3.55 points; 95% CI, 0.33-6.41 points; Cohen d = 0.54), and neck disability (5.65 points; 95% CI, 1.66-9.55 points; Cohen d = 0.66) scores. Conclusions and Relevance: In this cross-sectional study, a higher ADI score was associated with higher risk of increased psychological distress, higher symptom burden, and decreased QOL after treatment among HNC survivors. These findings suggest that proactive, patient-centered interventions are needed to address these disparities.

The female self-advocacy in Cancer Survivorship scale is a psychometrically sound measure of self-advocacy in male cancer survivors.

OBJECTIVE: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer. METHODS: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items. RESULTS: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86. CONCLUSION: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge.

Stakeholder perspectives on six identified interpersonal communication components of patient navigation in breast cancer care.

PURPOSE: Although identified as a key competency domain and a needed area of professional development, interpersonal communication in breast cancer care patient navigation is understudied. Moreover, the patient-navigator relationship may be influenced by the interpersonal communication skills and behaviors of the patient navigator. This paper reports on the interpretation step of a concept mapping study, where key stakeholders shared their perspectives on six identified interpersonal communication components of breast cancer care patient navigation. METHODS: This study utilized concept mapping, a community-engaged mixed method approach. After conducting brainstorming, sorting, and concept mapping analysis, a six-cluster concept map of interpersonal communication in breast cancer care patient navigation was identified. Interpretation sessions with each participant group (patients, patient navigators, administrators) allowed both naming and more in-depth exploration of the six clusters. The sessions were led by a facilitator, the PI, and were audio recorded and transcribed. RESULTS: Six 2-h interpretation sessions were conducted with 21 participants, including patients with breast cancer, breast cancer patient navigators (lay or medically trained), and patient navigation administrators from Western Pennsylvania. Through a group consensus process, the six clusters were named. Participants identified that all six identified components were essential to patient navigation, but the ability to build patient-centered trust and relationships and maintain professional communication were the most impactful components of the patient-navigator relationship. CONCLUSION: These findings validate the importance of interpersonal skills and behaviors of patient navigators in breast cancer care. These findings can inform the patient navigation role description, competencies, and the development of curriculum for training and metrics for evaluation.

Evaluation of Neck Disability Using Computed-Tomography in Head and Neck Cancer Survivors.

Objective: We have previously reported that 55% of head and neck cancer survivors have neck disability. However, it is unclear what factors contribute to their neck disability. Our study aim is to determine if survivors with neck disability have evidence of cervical spine degenerative disease assessed by computed tomography (CT). Materials/Methods: Cross-sectional analysis of patient-reported neck disability, prospectively collected on survivors of squamous cell carcinomas without recurrence or metastasis over one-year post-treatment. Neck disability and its impact on daily life was measured using the Neck Disability Index (NDI) and compared with cervical CT scans within 6 months. Scans were evaluated for degeneration of the disc and facet of the cervical vertebrae rated on a 5-point scale where 5 indicates more severe disease. Multivariable linear regression was used to analyze the association between NDI and radiographic findings. Results: 116 survivors of oropharyngeal carcinomas were identified, predominantly male (81.9%) with an average age of 62.8 ± 8.2 (range 43.8-81.4). Most survivors had advanced stage III-IVa cancer (94.0%) with treatment modalities including surgery (n=26, 52.0%), chemotherapy (n = 45, 90.0%), and radiation therapy (n = 49, 98.0%). Absence of neck disability was observed in 44.0% of survivors, 39.7% had mild disability, and 16.4% moderate disability. The time from treatment to clinic visit was an average of 3.1 ± 2.7 years (range 1.1-13.4). Multivariable analysis of NDI controlling for age, time since treatment, and treatment modality identified an inverse association between NDI and spinal degenerative disease examining cervical discs (-1.46 95% confidence interval (CI) [-2.86, -0.06], p = 0.041) and age (-0.24 95% CI[-0.40, -0.08], p = 0.004). Conclusions: Our study shows that neck impairment and pain in head and neck cancer survivors is not sufficiently explained by cervical degeneration related to age or trauma, supporting the theory that post-treatment neck disability occurs as a side effect of treatment. These results support the further assessment of structure and function of cervical musculature and degeneration following HNC treatment.

Definitive local therapy to head and neck squamous cell carcinoma with distant metastasis.

Objectives: Data on the efficacy of including definitive local therapy to the primary site for head and neck squamous cell carcinoma (HNSCC) patients with synchronous distant metastasis are lacking. In multiple different solid tumor types, there has been benefit when using systemic therapy followed by local consolidative therapy (stereotactic ablative radiotherapy or surgery) directed at metastases. We proposed to retrospectively evaluate patients at our institution that received definitive treatment to the primary. Methods: Single institution retrospective study evaluating 40 patients with metastatic HNSCC treated with definitive surgery (55%) or chemoradiation (45%) to the primary site from 2000 to 2020. The major endpoints were overall survival (OS) and progression-free survival (PFS) for the total population and multiple sub-groups. Some variables were evaluated with multiple covariates Cox model. Results: The median PFS was 8.6 months (95% CI, 6.4-11.6), and OS was 14.2 months (95% CI, 10.9-27.5). In 28% of patients that received induction therapy, there was a twofold increase in median overall survival to 27.5 months. In the 33% of patients that received anti-PD-1 mAb as part of their treatment course, the median OS was significantly increased to 41.7 months (95% CI, 8.7-NR) versus 12.1 months (95% CI, 8.4-14.4) with a 5-year OS of 39%. Multivariate analysis for OS showed significance for age at diagnosis, use of IO, and number of metastatic sites. Conclusion: We observed impressive survival outcomes in metastatic HNSCC patients treated with definitive local therapy to the primary site in addition to induction and/or immunotherapy. Further study is warranted.Level of Evidence: 3.

"I pretty much followed the law, and there weren't any decisions to make": A qualitative study of self-advocacy experiences of men with cancer.

Current conceptualizations of patient self-advocacy focus on women with cancer, leaving knowledge of male self-advocacy deficient. The purpose of this study is to describe the key components of self-advocacy among men with cancer. Adult (≥18 years old) men with a history of invasive cancer were recruited from cancer clinics and registries. Trained researchers led individual semi-structured interviews regarding participants' challenges, how they overcame those challenges, and barriers and facilitators to their self-advocacy. All interviews were analyzed using descriptive content analysis methods and synthesized into major themes. These themes were refined after receiving feedback from key stakeholders. Participants (N = 28) reported three major self-advocacy themes: (i) managing through information and planning; (ii) finding the best team and falling in line; and (iii) strategic social connections. These themes are richly described with representative quotations for each theme and subtheme. Based on these findings, existing models of patient self-advocacy should be adjusted to encompass how men self-advocate. Clinicians should consider how gender may impact how and why patients with cancer self-advocate so that they can best support their patients in achieving patient-centered care.

Association of Trismus With Quality of Life and Swallowing in Survivors of Head and Neck Cancer.

OBJECTIVE: We aim to (1) determine the prevalence and predictors of trismus and (2) examine the relationship of trismus, swallowing dysfunction, and quality of life (QOL) in survivors of head and neck cancer (HNC). STUDY DESIGN: Case series with chart review. SETTING: Multidisciplinary HNC survivorship clinic. METHODS: Data on trismus and patient-reported outcomes were obtained from survivors of HNC between December 2016 and October 2019. Trismus was defined as a maximum interincisal opening ≤35 mm. QOL and swallowing dysfunction were measured with the University of Washington Quality of Life questionnaire and EAT-10 (Eating Assessment Tool-10), respectively. Linear regressions were applied to investigate the relationship of trismus with QOL and swallowing dysfunction. RESULTS: Of the 237 survivors, 22.78% (n = 54) had trismus. Advanced stage of cancer (stage III/IV vs Tis-II, P = .002) and treatment (nonsurgical and surgery + adjuvant treatment vs surgery only, P = .006) were correlated with a higher prevalence of trismus. After controlling for cancer stage and treatment type, EAT-10 scores for survivors with trismus were 9.342 (95% CI, 6.262-12.423; P < .0001) higher than those without trismus. The University of Washington Quality of Life Physical and Social-Emotional subscales for patients with trismus were 14.088 (95% CI, 9.042-19.134; P < .0001) and 10.470 (95% CI, 4.793-16.147; P = .0003) lower than those without trismus, respectively. CONCLUSION: Trismus is a common, treatment-related consequence and is associated with increased symptoms of dysphagia and decreased QOL. Early detection and management of trismus in survivors of HNC are essential to optimize QOL and reduce morbidity.

Surgical factors associated with patient-reported quality of life outcomes after free flap reconstruction of the oral cavity.

OBJECTIVES: To determine which surgical factors are associated with quality-of-life (QOL) outcomes in oral cavity cancer survivors after free flap reconstruction of the oral cavity. PATIENTS AND METHODS: A cross-sectional study was conducted from a multidisciplinary head and neck cancer (HNC) survivorship clinic. Oral cavity cancer survivors with at least 6-months of postoperative follow-up from ablation and free flap reconstruction were included. Primary outcome measures were validated patient-reported outcome measures (PROMs) including the Eating Assessment Tool-10 (EAT-10) measure of swallowing-specific QOL, University of Washington Quality of Life (UW-QOL) physical and social-emotional subscale scores and feeding tube dependence. RESULTS: Extent of tongue resection was associated with EAT-10 and the UW-QOL Physical subscale scores. Patients with oral tongue defects reported worse scores than with composite defects in the EAT-10 and UW-QOL physical domain (p = 0.0004, 0.0025, respectively). This association no longer applies when controlling for differences in extent of tongue resection. Patients with anterior composite resections reported worse EAT-10 scores than lateral resections (p = 0.024). This association no longer applies when controlling for extent of tongue resection (p = 0.46). Gastric tube dependence demonstrates similar trends to PROMs. CONCLUSION: Extent of tongue resection was strongly associated with poor QOL outcomes after free tissue reconstruction of the oral cavity and mediates the associations between other defect characteristics and QOL. These findings demonstrate the need for emphasis on expected oral tongue defects when counseling patients and highlight the need to address QOL in a multidisciplinary fashion post-operatively.

Late and Long-Term Treatment-Related Effects and Survivorship for Head and Neck Cancer Patients.

OPINION STATEMENT: The demographics of head and neck cancer (HNC) survivors are changing, contributing to a growing number of survivors and a greater length of survivorship. Curative treatment involves intense multimodal therapy, which contributes to both short-term toxicities and long-term treatment-related effects. Delivering high-quality, relevant cancer survivorship care is a growing national priority. Various survivorship models and tools, such as survivorship care plans, have been utilized in an attempt to enhance care and optimize outcomes. However, an essential, yet understudied, component of high-quality survivorship care is the identification and management of late and long-term treatment-related effects. In this article, we will describe the current advancements in survivorship care as well as the research related to late and long-term treatment effects. While there is a growing body of literature that describes the prevalence of treatment-related effects and their impact on quality of life, more work is needed. Research that investigates the interplay of these complex treatment effects, the biological mechanisms that contribute to their variability, and interventions designed to mitigate them are desperately needed. While de-intensification offers the potential to alleviate these effects for future survivors, we need clinically meaningful assessment tools and therapies to provide the survivors we evaluate and treat daily. Targeted patient-reported outcomes and objective measures validated through clinical research are needed to help us systematically identify and treat late and long-term effects. In order to tailor and optimize the care we provide to our HNC survivors, we will need to leverage these tools as well as the expertise of all members of our multidisciplinary survivorship teams.

Neck Disability and Swallowing Function in Posttreatment Head and Neck Cancer Patients.

OBJECTIVE: To examine the relationship between symptoms of neck disability and swallowing dysfunction among head and neck cancer (HNC) survivors. STUDY DESIGN: Cross-sectional analysis. SETTING: Single-center, university-affiliated HNC survivorship clinic. SUBJECTS AND METHODS: Survivors' patient-reported symptoms of neck disability and swallowing dysfunction were prospectively collected from March 2017 to May 2018. Neck disability and swallowing dysfunction were measured using the Neck Disability Index and Eating Assessment Tool (EAT-10), respectively. Linear regression was used to analyze the association between neck disability and swallowing dysfunction. RESULTS: A total of 179 survivors, predominantly male (n = 130, 72.6%) with an average age of 64.64 ± 9.91 years, were included in the analysis. Primary cancer sites were oropharynx (n = 85, 47.5%), oral cavity (n = 59, 33.0%), and larynx/hypopharynx (n = 35, 19.5%). Mean EAT-10 score was 10.07 ± 10.89 (range = 0-40; >2 indicative of swallowing dysfunction). Survivors treated for early stage cancer had lower EAT-10 scores than those with advanced stage (early = 3.55 ± 7.46; advanced = 11.95 ± 11.02, P < .001). After controlling for age, time since treatment, American Joint Committee on Cancer stage, and treatment modality, the EAT-10 score for patients with mild neck disability was 6.88 (95% confidence interval [CI], 3.71-10.06; P < .001) points higher than those without neck disability, and the score for those with moderate-complete neck disability was 13.65 (95% CI, 9.47-17.83; P < .001) points higher than those without neck disability. CONCLUSIONS: Swallowing dysfunction is a commonly recognized effect of HNC treatment. The prevalence and burden of neck disability are shown to be highly correlated with swallowing dysfunction. These results support the need for comprehensive, multidisciplinary rehabilitation interventions for patients with HNC.

Prevision of multidisciplinary head and neck cancer survivorship care during the 2019 novel coronavirus pandemic.

The 2019 Coronavirus Pandemic challenges the delivery of care for patients with head and neck cancer. An important aspect of this care has been the evolution of enhanced survivorship services, which include surveillance for recurring cancer and prevention of second primaries. The application of evidence-based approaches to the identification and management of treatment and tumor-related toxicities has embraced the use of validated patient-reported outcomes instruments, health promotion, and care coordination. In this manuscript, we describe how our multidisciplinary team of survivorship providers has accommodated to the need to provide patients with social distancing while acknowledging the importance of continued care during treatment and through the spectrum of survivorship.

Health literacy: Impact on quality of life in head and neck cancer survivors.

OBJECTIVES: Although inadequate health literacy has been shown to impact health outcomes in other cancers, little is known about its impact in head and neck cancer (HNC). This study aimed to determine the prevalence and predictors of inadequate health literacy and evaluate the association between health literacy and quality of life (QOL) in HNC survivors. METHODS: We conducted a retrospective analysis of HNC survivors evaluated in a multidisciplinary HNC survivorship clinic. Survivors had to be ≥1-year postcompletion of treatment to be included in the analysis. Health literacy was assessed via self-report with the Brief Health Literacy Screen (score <10 indicating inadequate health literacy), and QOL was measured using the University of Washington QOL questionnaire. Linear regression with robust standard errors was utilized to evaluate the association between health literacy and QOL. RESULTS: Of the 218 survivors evaluated, 13.8% (n = 30) demonstrated inadequate health literacy. After adjusting for age, marital status, site, stage, treatment modality, and years since treatment completion, social-emotional QOL scores for survivors with adequate health literacy were estimated to be 10.67 points higher than those with inadequate health literacy (P = .013). Health literacy was not significantly associated with physical QOL after adjusting for covariates (P = .130). CONCLUSION: Inadequate health literacy is associated with a lower social QOL in HNC survivors, and among those with inadequate health literacy, interventions to ameliorate the impact on QOL are needed. LEVEL OF EVIDENCE: 4 Laryngoscope, 130:2354-2359, 2020.

Burden of treatment: Reported outcomes in a head and neck cancer survivorship clinic.

OBJECTIVE: With the intensification and utilization of multimodal treatment, acute toxicities have increased; however, the frequency of treatment sequelae in long-term head and neck cancer (HNC) survivors are poorly described. The purpose of this analysis was to determine the prevalence and predictors of patient-reported late and long-term treatment-related sequelae in HNC survivors. METHODS: We performed a cross-sectional analysis of patient-reported outcomes from 228 survivors attending a multidisciplinary HNC survivorship clinic. The primary outcomes comprised quality of life (QOL), symptoms of anxiety and depression, and swallowing dysfunction. RESULTS: Male gender, tumor sites in the oropharynx and larynx, longer time since treatment, and treatment with surgery alone were associated with higher physical QOL (P < .05). Male gender, longer time since treatment, and treatment with surgery alone were associated with higher social-emotional QOL (P < .05). A reduction in anxiety symptoms and a higher QOL were related to longer time since treatment; however, a reduction in swallowing dysfunction symptoms was only related to longer time since treatment until approximately 6 years. After 6 years, survivors reported worse swallowing dysfunction (P < .05). One hundred thirty-two survivors (56%) reported at least three treatment-related effects that impacted their daily life. Finally, advanced stage disease at diagnosis (stage III-IV) was also associated with severe swallowing dysfunction (P = .004). CONCLUSION: These data indicate the remarkable prevalence of treatment-related effects in HNC survivors. These results highlight the need for de-intensification of therapies, where appropriate, and for a better understanding of pathophysiology and new approaches to mitigating treatment effects. LEVEL OF EVIDENCE: 4 Laryngoscope, 129:E437-E444, 2019.