|Abstract:||At least 90% of head and neck cancer (HNC) survivors experience significant symptom burden that impacts their ability and/or desire to eat as a result of tumor location, treatment with chemoradiation and/or surgical resection of the tumor. Symptoms prevalent in this population that may persist long after treatment include difficulty swallowing (dysphagia), ulcerations of the mucosal membranes (mucositis), dry mouth (xerostomia), and taste alterations. Because these symptoms are likely to compromise food intake, they are termed nutrition impact symptoms (NIS). Few studies have examined the impact of NIS on nutrition and quality of life in HNC survivors and in those studies, primarily acute effects were investigated. Identifying patients at high-risk for nutritional and/or functional decline secondary to chronic toxicities of chemoradiation is key to developing interventions aimed at improving nutritional status and quality of life in this survivor population.
The long-term goal of this research is to identify and manage NIS in HNC survivors in order to improve nutritional status and quality of life. The overall objective for this dissertation research was to determine how chronic symptoms are associated with quality of life and nutrition in post-treatment HNC survivors through a combination of study designs including: longitudinal, cross-sectional, and qualitative, semi-structured interviews.
The first aim of this dissertation was to examine how pretreatment diet quality predicts the presence and severity of symptoms in a longitudinal cohort study of 336 newly diagnosed HNC patients enrolled in the University of Michigan Head and Neck Specialized Program of Research Excellence. Principal component analysis (PCA) was utilized to derive pre-treatment dietary patterns from food frequency questionnaire (FFQ) data. Burden of seven NIS was self-reported one year after diagnosis. Associations between pre-treatment dietary patterns and individual symptoms and a composite NIS summary score were examined with multivariable logistic regression models. Odds ratios (OR) and 95% confidence intervals (CI) were estimated for each quartile (Q) of dietary pattern score compared with the lowest, Q1. Two major dietary patterns emerged from PCA. The first pattern, termed the Prudent dietary pattern, was characterized by high intakes of vegetables, fruit, fish, poultry, low-fat dairy and whole grains. The second pattern, termed the Western dietary pattern, was characterized by high intakes of red and processed meats, refined grains, potatoes, French Fries, high-fat dairy and sugar-sweetened beverages. In multivariable logistic regression models, after adjusting for age, tumor site, cancer stage, smoking, body mass index (BMI), calories and human papillomavirus (HPV) status, significant inverse associations were observed between pre-treatment Prudent pattern score and difficulty chewing (OR 0.44; 95% CI 0.21-0.93; P=0.03), dysphagia of liquids (OR 0.38; 95% CI 0.18-0.79; P=0.009), dysphagia of solid foods (OR 0.46; 95% CI 0.22-0.96; P=0.03), mucositis (OR 0.48; 95% CI 0.24-0.96; P=0.03) and the NIS summary score (OR 0.45; 95% CI 0.22-0.94; P=0.03). No significant associations were observed between the Western pattern and NIS.
The second aim of this dissertation was to examine the relationship between a NIS summary score on quality of life and functional status and compare the diet quality of post-radiation HNC survivors to healthy National Health and Nutrition Examination Survey (NHANES) controls. This was a cross-sectional pilot study of 42 HNC survivors who were at least 6 months post-radiation. Self-reported data on demographics, NIS, quality of life and usual diet over the past year were obtained. Objective measures of functional status included the short physical performance battery and InBody© 270 body composition testing. The NIS summary score was coded so that a lower score indicated fewer disease-or treatment-related symptoms (lower symptom burden), (range 4 – 17) and dichotomized as <10 vs. >10, the median in the dataset. Wilcoxon rank sum tests were performed between the dichotomized NIS summary score and continuous quality of life and functional status outcomes. Diet quality for HNC survivors was calculated using the Healthy Eating Index 2015 (HEI-2015). Wilcoxon rank sum tests examined the difference between the HNC HEI-2015 as compared to NHANES data calculated using the population ratio method. Quality of life: A lower NIS summary score was statistically associated with higher functional (p=.0006), physical (p=.0007), emotional (p=0.007) and total (p<.0001) quality of life. Functional status: A lower NIS summary score was statistically associated with higher posttreatment lean muscle mass (p=0.002). A lower NIS summary score was non-statistically associated with higher posttreatment body mass index and activities of daily living score. Diet: As compared to healthy NHANES controls, HNC survivors reported a significantly lower total HEI-2015 diet quality score (p=0.0001).
Lastly, Aim 3A and 3B of this dissertation was to perform semi-structured interviews to examine the comprehensive understanding of the lived experience of chronic NIS burden of HNC survivors. Semi-structured, face-to-face interviews were conducted in 31 HNC survivors. An interview guide was utilized to consider themes which had been generated through the review of literature and through the researchers’ clinical experience within the field. These were probes within the interview for participants to raise unanticipated issues and flexibility to follow such leads. Dependability was ensured by using a single researcher to conduct the interviews to maintain consistency in data collection. Interviews lasted approximately one hour and were audio recorded. All interview transcripts were professionally transcribed verbatim and checked for accuracy to ensure a complete account of participants’ responses. Two researchers applied qualitative thematic content analysis to identify major themes.
In Aim 3A, four major thematic categories emerged from the interview data: symptom presence, dietary preferences, eating adjustments, and addressing symptoms. The most common symptoms were dysphagia, xerostomia, taste alterations and bothered chewing. As a result of dietary preferences, survivors avoided citrus fruits, dry foods, raw vegetables, sweets, and meats. Survivors preferred soft and moist foods, spices or seasonings, and sauces or gravies. Eating adjustments were described as increased time to consume meals, cutting food into smaller pieces, consuming less food, and consuming more fluid. As a result of food preference changes and eating adjustments, survivors reported dietary pattern changes from pre-to-post treatment. All survivors experienced one or more chronic NIS, yet nearly 40% were unaware prior to treatment that NIS had the potential to persist chronically.
In Aim 3B, survivors described restrictions on daily living, social eating, and financial concerns. Despite these restrictions, survivors reported an overall high mentality and enjoyment of life. Coping considerations included adapting to a new normal and increased involvement in cancer support and faith groups. Preferences for patient care included receiving more information about the treatment care plan, referrals to therapy and support groups, and more comprehensive follow-up in survivorship.
In summary, consuming a pre-treatment diet rich in vegetables, fruit, fish, poultry, and whole grains was associated with lower self-reported NIS one year after diagnosis. A lower NIS summary score (lower symptom burden) was associated with higher lean muscle mass and functional, physical, emotional and total quality of life in post-radiation HNC survivors. HNC survivors reported a significantly lower total HEI-2015 as compared to healthy NHANES controls, likely a result of chronic NIS burden impacting the ability and desire to eat. The results of the qualitative studies provided a unique insight into the lived experiences of HNC chronic NIS burden. The impact of chronic NIS after treatment have substantial effects on the everyday lives of HNC survivors. While long-term HNC survivors adapt to daily living restrictions, a high proportion continue to have unmet needs. Despite the national comprehensive cancer network (NCCN) guidelines recommending formal speech and swallowing evaluations for patients, survivors in our study had to request their own therapies. Therefore, emphasis should be placed on appropriate referrals to counseling and therapeutic services including speech language pathologist, physical therapists and dietitians before, during and after treatment in addition to follow-up care. Additionally, health care professionals should explore preferences and needs in follow-up visits and utilize probing questions to address adaptations made to sustain a high quality of life.