Abstract
Head and neck cancer (HNC) survivors experience complex nutritional and supportive care needs. These needs result from location of the tumor close to organs vital for normal eating function and intensive treatment targeting those organs. Despite the critical role of nutrition and supportive care in HNC, research and funding are lacking compared to other cancer types. This review was compiled and written by a team of multidisciplinary medical professions. Topics include: 1) limited access to medical nutrition therapy (MNT), 2) MNT reimbursement policies, 3) long-term survivorship care needs, 4) percutaneous endoscopic gastrostomy (PEG) tube placement, 5) nutrition literacy, 6) psychological services, 7) speech-language pathology (SLP) care, and 8) concomitant physical activity. The goal of this work is to define current issues in research and practice, advocate for the expansion of HNC funding opportunities, and raise awareness of HNC supportive care needs and challenges. This work provides a roadmap for healthcare professionals, researchers, policymakers, and funding agencies to prioritize nutrition in HNC care, with the overarching goal of improving treatment outcomes and quality of life (QOL).
Keywords: Head and neck cancer, call to action, research directions, nutrition, supportive care, health professions, recommendations, cancer survivorship
1. INTRODUCTION
Head and neck cancer (HNC) is a heterogeneous group of malignancies that arise predominately in the oral cavity, pharynx, and larynx, with 5-year survival rate ranging from ~30% to 85% depending on the stage and site of the tumor.1, 2 While classic etiologies for HNC include alcohol and tobacco use, human papillomavirus (HPV)-associated oropharynx cancers are increasingly prevalent, often diagnosed in younger individuals who tend to experience improved survival outcomes.2 HNC accounts for nearly 4% of all cancers in the United States and is associated with high disease- and treatment-related morbidity.3 For the purpose of this call to action, we use the National Cancer Institute (NCI) and American Cancer Society (ACS) definition of cancer survivor: anyone with a history of cancer, from the time of diagnosis through the end of life.4, 5
Many morbidities (e.g., dry mouth and chewing difficulty) may impede HNC survivors’ oral nutrition intake and thus are termed nutrition impact symptoms (NIS).6, 7 Evidence suggests at least 90% of HNC survivors develop acute or chronic NIS, including but not limited to xerostomia, trismus, dysphagia, chewing problems, mucositis, and taste alterations.6 Other consequences of NIS include disruption of relationships, social isolation, and depression.7 The degree of these symptoms may vary depending on factors such as cancer stage, tumor site, and treatment modality.7 According to the Academy of Nutrition and Dietetics and the American Society for Parenteral and Enteral Nutrition, malnutrition is defined as nutrition imbalance, and specifically in this context, it is focused on malnutrition (undernutrition) in the context of chronic disease.8 Malnutrition prevalence in HNC survivors is among the highest of all cancer types, ranging from 26 to 74%,9, 10 likely a result of tumor location and associated treatments.9 In HNC survivors, cancer-related malnutrition has been associated with increased mortality and toxicities and decreased tolerance to cancer therapy.11 Sarcopenia, characterized by a progressive loss of skeletal muscle mass, strength, and physical performance, is a major issue for HNC survivors undergoing treatments. It is associated with poor treatment outcomes such as higher rates of chemotherapy toxicity, prolonged radiation therapy interruptions, and increased feeding tube dependency.12 Malnutrition, NIS, and subsequent consequences, including sarcopenia, may lead to compromised functional performance, reduced quality of life (QOL), poor prognosis, and significantly lower survival.9, 10
The Academy of Nutrition and Dietetics Evidence Analysis Library has suggested a grade 1 (strong evidence) demonstrating associations among low nutritional status in cancer survivors and decreased tolerance to treatment, increased hospital length of stay, lower QOL, and increased mortality.13 Growing evidence suggests maintaining nutritional status throughout the HNC continuum is important for lowering proinflammatory cytokine levels (IL-6, TNF-α, and IFN-γ), which have been associated with better prognoses and higher QOL in observational data.9, 14 Specifically, a longitudinal study of 542 survivors found that higher body weight and a whole-foods diet, characterized by high intakes of vegetables, fruits, fish, poultry, and whole grains, are associated with improved HNC prognoses.15 A meta-analysis of 14 studies (N=7,815 survivors) demonstrated that compromised pretreatment nutritional status—marked by malnutrition and low lymphocyte counts—correlated with lower overall survival and increased risk of HNC development and recurrence.16 In a longitudinal study of N=533 survivors, higher QOL scores were observed 12 weeks after radiotherapy initiation in HNC survivors that experienced ≤5% weight loss, while HNC survivors with >5% weight loss reported significantly lower QOL (p<0.05).17 In spite of the outlined potential morbidities and the above role of nutrition in preventing morbidities and preserving QOL, the lack of universally accepted, evidence-based clinical guidelines for nutrition in HNC care limits the ability to address these issues effectively and improve outcomes among HNC survivors. The field urgently needs a consensus statement on nutrition for HNC survivors. Currently, a lack of research and evidence prevents defining optimal nutritional interventions, highlighting a critical gap that demands immediate action.
Historically, oncology nutrition research has predominately focused on the common cancer types, including breast, colon, and prostate cancers. Despite a considerable expansion in treatment modalities for these common cancer types, the therapeutic repertoire of HNC has not significantly advanced in recent decades.18 While optimizing existing screening tools and improving care integration may provide immediate benefits for patient outcomes, breakthroughs in early detection and treatment modalities in HNC are still lacking.19 Upon normalizing the National Institutes of Health (NIH)-awarded R01 and R01 equivalent grants by incidence, thyroid cancer ($214) and HNC ($1,329) were granted the fewest funding dollars.18 Previous anecdotes imply that HNC is underappreciated relative to other malignancies, serving as an additional point to support funding applications and the expansion of funding opportunities.19–23
The context of this work is primarily the U.S. healthcare system, particularly regarding medical nutrition therapy (MNT) access and reimbursement policies, and it may provide insights and broader implications for HNC research and care in other healthcare settings. The goal of this work is to define current issues in research and practice, advocate for the expansion of HNC funding opportunities, and raise awareness of HNC supportive care needs and challenges. We propose a roadmap, visualized in Figure 1, to identify gaps and strategies to improve HNC survivorship care.
Figure 1. Call for Action and Research in HNC.

This figure shows a roadmap for the HNC continuum, manifesting areas that require more research and actions. Abbreviations –HNC, Head and Neck Cancer; MNT, Medical Nutrition Therapy; RDN, Registered Dietitian Nutritionists; PEG, Percutaneous Endoscopic Gastrostomy; SLP, Speech Language Pathologist.
2. SEARCH STRATEGY AND SELECTION CRITERIA
This call to research represents the collective expertise of multidisciplinary medical professionals, including registered dietitian nutritionists (RDNs), oncologists, surgeons, nutritionists, speech-language therapists (SLP), psychiatrists, and behavioral health experts, who have contributed their insights on the current state of research and clinical practice in HNC and highlighted knowledge gaps and HNC care needs. Articles were primarily collected by authors over time, reflecting the authors’ clinical and research expertise and prior work in the field. Authors also 1) identified articles in PubMed for peer-reviewed literature using search terms relevant to the title of each call to action topic, 2) reviewed policy and guideline sources from organizations, including the National Comprehensive Cancer Network (NCCN), American Society of Clinical Oncology (ASCO), and World Cancer Research Fund (WCRF), 3) referred to the websites of credible healthcare organizations such as the National Institutes of Health (NIH) and the American Cancer Society (ACS) to incorporate the latest statistics and recommendations, and 4) conducted hand searches for key articles that were considered critical in supporting each section. We considered papers published from inception to January 2025. Only papers published in English were reviewed. The final reference list was generated based on originality and relevance to the broad scope of this Review.
3. CALL FOR RESEARCH AND SUBSEQUENT POLICY
3.1. Action 1: Medical nutrition therapy is associated with improved cancer outcomes, but survivors lack access.
MNT is an individualized (based on various factors such as tumor site, treatment modality, and other relevant patient-specific needs and considerations) nutrition-based therapy provided by RDNs for the treatment or prevention of disease. RDNs are uniquely trained in MNT including individualized nutrition diagnostics, therapies, and disease management to improve treatment tolerance and optimize clinical outcomes. It is a way to maintain or improve energy and protein intake to mitigate metabolic abnormalities, prevent lean muscle loss, preserve functional status, and improve nutritional status and QOL before, during, and after treatment. It has been associated with better health outcomes and reduced healthcare costs.24–26 The MNT cancer treatment plan is unique and individualized based on individual needs and includes a review of personal health history, assessment of current needs (e.g., nutritional status, body measurements, blood tests, estimation of caloric intake, symptoms, food intolerance, eating habits), nutritional counseling, nutrition prescriptions, and meal planning education to improve health outcomes, reduce symptoms, and prevent long-term complications.27
However, not all cancer survivors have access to comprehensive MNT, as in a recent survey of 1,073 cancer survivors of all types, including HNC, fewer than 40% of survivors with involuntary weight loss reported being seen by a RDN during treatment.28 Remarkably, only 39% to 64% of HNC survivors receive MNT from a RDN after a cancer diagnosis,28,29 despite the NCCN guidelines emphasizing all HNC survivors should receive MNT throughout the treatment continuum.30 This suggests that a large proportion of HNC survivors do not receive guideline-consistent care. Most concerning is that the nutritional impact of HNC does not begin with diagnosis as research suggests 30% of survivors are malnourished prior to diagnosis and treatment as a result of NIS burden.26 The limited availability of guideline-concordant comprehensive care and the high prevalence of malnutrition at diagnosis likely amplifies the risk of mortality, increases the likelihood of metastasis, and leads to higher treatment costs and breaks in treatment due to hospitalizations and readmissions.26,31 Thus, ensuring all HNC survivors receive guideline-consistent MNT is urgently needed and remains an unaddressed critical need. Further research is needed to identify barriers to the implementation of guideline-consistent MNT, the effectiveness of integrating MNT into HNC routine care, and its impact on clinical outcomes, healthcare costs, and QOL.
3.2. Action 2: Medical Nutrition Therapy Cancer Care Reimbursement
Quality health care is a priority for the Department of Health and Human Services and the Centers of Medicare and Medicaid Services. The Centers for Medicare and Medicaid Services implements initiatives as a way to ensure quality health care that includes quality improvement, pay for reporting, and public reporting.32 In the United States, these agencies do not currently reimburse MNT as a component of multimodal oncology care; however, Medicare does provide reimbursement for MNT in outpatient diabetes and kidney disease, despite healthcare spending associated with cancer far exceeding these costs.33
Transitioning to a model where oncology nutrition services are charged and reimbursed appropriately is possible. The Medical Nutrition Therapy Act (MNT Act) was first introduced in May 2020 and again in 2023,34 however, it has not been passed. This bicameral, bipartisan legislation would provide coverage for Medicare beneficiaries to obtain treatment from RDNs for cancer, malnutrition, obesity, HIV/AIDs, and more and would encourage job opportunities for RDNs. Currently, in cancer centers, oncology nutrition services are often viewed as a cost center, as compared to revenue-generating centers, despite the documented benefits of MNT in improving patient outcomes. The NCCN guidelines state all HNC survivors should receive a dietary consultant upon treatment initiation and regular RDN follow-up care until the survivor presents as nutritionally stable, however, according to a recent study by Trujillo et al., the average dietitian-to-patient ratio in outpatient cancer centers in the United States was 1:2308, far below the estimated ratio of 1:120 needed to provide proactive MNT.35 Adequate reimbursement acknowledges RDNs’ valuable role within the multidisciplinary healthcare team and fosters ongoing education and training to stay up-to-date on the latest scientific evidence and best nutrition practices. Thus, there is an urgent need for changes in plan benefit design and insurance coverage policies to encourage access to cost-effective, comprehensive, oncologic nutritional care. Passing the MNT Act would bridge these gaps.33 Further research should evaluate the clinical impacts and cost effectiveness of MNT reimbursement on patient outcomes and healthcare expenditures.
3.3. Action 3: Address Long-term Survivorship Care Needs in Nutrition
Estimates suggest 60% of HNC survivors in the United States will be cured of cancer and become long-term survivors (≥5 years),36 thus there has been a number of public health initiatives from private and public organizations to study cancer survivorship and address knowledge gaps regarding health-related QOL.20–22 Despite the European Head and Neck Society recommendations for HNC survivorship care guidelines and the ACS guidelines’ recognition of the unique nutritional challenges of HNC survivors (e.g., swallowing difficulties, weight maintenance),4, 22 the efficacy of interventions and availability of HNC-specific nutritional strategies remain limited, and there is insufficient long-term observational symptom and nutritional evidence-based research to inform guideline development.31 Similarly, despite providing some tips on managing NIS, the American Head and Neck Society (AHNS) provides limited emphasis on long-term survivorship recommendations in nutrition,37 highlighting a critical gap in addressing the unique nutritional needs of this population and underscoring the need for focused research in this area.
HNC care has greatly evolved over several decades, from single modality treatment to multidisciplinary, comprehensive, “organ sparing” care,20 alongside newer treatment modalities such as immune checkpoint inhibitors and targeted therapies.38 However, as previously mentioned, HNC survivors have nutritional and symptom concerns that warrant multidisciplinary management39 such as social and isolation concerns, emotional, cognitive, physical, and functional pragmatic issues.9, 21, 40
Long-term studies evaluating QOL in HNC survivors greater than five years post-diagnosis are limited, and most have been conducted in cohorts outside the United States.41 Studies have indicated general health of HNC survivors tends to be worse than matched controls.42,43 In a qualitative study of HNC survivors six months to nine years post-radiation, nearly all survivors experienced xerostomia and made eating adjustments to adapt dietary preference changes and 40% were not aware chronic symptoms (e.g., xerostomia, dysphagia) would persist after treatment and affect day-to-day life.33 In a prospective observational study of N=337 HNC survivors 5-years post-diagnosis, 50% reported problems eating, 28.5% reported depressive symptoms, and 17.3% reported substantial pain.44 In a cross-sectional multicentric study of N=72 HNC survivors one- year post-treatment, the most frequent concern was fear of cancer recurrence, followed by dental, salivary, fatigue, speech and eating problems.39 The reliance on feeding tubes, speech problems, disfigurement, and pain have been associated with increased anxiety and depression in several studies,21, 45–47 and these psychosocial stressors may amplify stigma, distress, financial issues, and appearance/body image concerns.48 As long-term survivorship care is not sufficient, early and long-term interventions individualized to meet needs to prepare HNC survivors for life beyond treatment are needed.
3.4. Action 4: Settle Debate and Establish Consensus on Enteral Nutrition Dilemma
In HNC, enteral nutrition support is often necessary to prevent malnutrition and its associated risks from disease symptoms and NIS.49 However, the optimal timing of percutaneous endoscopic gastrostomy (PEG) tube placement for survivors undergoing radiation or chemoradiation remains a topic of ongoing debate.50 Currently, there is a lack of consensus regarding the ideal timing of PEG tube placement and the criteria that should guide intervention, with some data suggesting benefits to a prophylactic approach like reduced treatment interruptions and maintained nutritional status, while others highlight risks such as increased complications and negative impacts on swallowing function.51–53 This lack of consensus leads to varying practices among healthcare providers and institutions.53
Two primary approaches are generally considered: prophylactic PEG placement, where the tube is inserted before treatment initiation, and a reactive PEG approach, where the tube is inserted only after a nutritional deficit or significant swallowing difficulty occurs.54 A 2011 review by Locher et al. found limited evidence to support routine prophylactic PEG placement in all HNC survivors, emphasizing the need for careful patient selection via risk stratification and further research to define optimal criteria and establish clear guidelines.51 They further emphasized that while prophylactic PEG tubes may help maintain adequate nutrition during treatment and reduce treatment interruptions, potential risks to swallowing function and increased complications warrant individualized decision making.51 However, both approaches present logistical challenges, particularly in community treatment settings. For instance, prophylactic placement may require more frequent monitoring and access to SLP services to assess swallowing function and ensure the tube is not negatively impacting swallowing function and contributing to long-term PEG dependence. Reactive placement, on the other hand, can be delayed due to limited access to timely nutritional assessments and PEG insertion procedures, particularly in less-resourced settings.55 These challenges can further complicate decision-making and contribute to variations in practice.
Despite the high incidence of malnutrition among HNC survivors, research on the optimal timing of PEG placement and feeding initiation (e.g., variations in timing of placement relative to treatment initiation, differing thresholds of weight loss or oral intake triggering tube placement) remains limited.56–59 A recent systematic review shows prophylactic and reactive approaches to PEG placement lead to similar nutritional outcomes, number of radiotherapy interruptions and survival.52 However, the limited number of prospective randomized studies, inconsistencies in defining ‘prophylactic’ and ‘reactive’ PEG placement (e.g., variations in timing of placement, thresholds for initiating enteral feeding), as well as differences in outcome measures hinder the ability to draw definitive conclusions. According to NCCN guidelines, there is no consensus about whether prophylactic feeding tube placement is appropriate. NCCN recommends it for HNC survivors with significant issues such as considerable weight loss prior to treatment, risk of aspiration, and lack of caloric intake. Reactive feeding tube placement is considered appropriate when meeting nutritional requirements is no longer possible. This highlights the need for more rigorous trials to guide evidence-based practice and ensure optimal patient outcomes.
A promising framework for guiding clinical decision-making for PEG placement in HNC survivors is the validated protocol developed at the Royal Brisbane and Women’s Hospital in Australia, which incorporates a nuanced, risk-stratified approach.60,61 This protocol identifies high-nutritional risk survivors based on factors such as tumor site (oral cavity, oropharynx, hypopharynx, nasopharynx or unknown primary) and planned treatment (bilateral neck irradiation for oral cavity and oropharyngeal cancers, or chemoradiotherapy for nasopharyngeal, hypopharyngeal, and unknown primary cancers). It recommends prophylactic PEG for high-risk survivors and a reactive approach for all other survivors. This approach has been shown to reduce unplanned hospital admissions and improve nutritional outcomes, although further research is needed to fully evaluate its impact on quality of life and long-term swallowing function.61 The Australian protocol provides a clear framework for patient selection and individualized care, addressing the concerns raised by Locher et al. about the lack of standardized criteria for PEG placement. However, its implementation in the U.S. faces challenges, primarily due to the outlined limitations in accessing nutrition and SLP care at all necessary points throughout treatment. Moreover, there are inconsistencies regarding the impact of feeding tubes on QOL,62 and the discrepancy in study results likely stems from variations in study designs, QOL definitions, and research protocols. Thus, we strongly advocate for more research, including a cooperative trial, and initiatives led by oncology nutrition experts, RDNs, SLPs, and other multidisciplinary team members with relevant expertise to address these critical issues.
Social disparities also play a significant role in PEG use and selection among patients. Factors such as socioeconomic status, caregiver availability, and social support influence both access to and outcomes of PEG placement. Research shows that survivors without partners are more likely to experience prolonged gastrostomy tube dependence, underscoring the impact of inadequate support systems.63 These disparities highlight the importance of integrating social determinants of health into research designs to guide future development of equitable and accessible interventions.
To address these existing challenges, future research should prioritize:
Establishing standardized terminology and definitions: Inconsistencies exist in how “prophylactic” and “reactive” PEG placement are defined in the literature, and further complicating the terminology, some practitioners prefer the term “therapeutic” instead of “reactive”. Clear and standardized definitions are critical, enabling meaningful comparisons between studies and facilitating the development of evidence-based guidelines.
Defining relevant outcomes: To comprehensively evaluate the true risks and benefits of each PEG placement approach, studies should use a consistent set of key outcome measures. These should include not only weight loss and body composition but also patient-reported outcomes like QOL, as well as treatment completion rates and complications.
Including social determinants in research: To help identify those who may require additional support or alternative interventions before or alongside PEG placement.
Incorporating evidence-based regimen: To promote standardized and evidence-based care, clinical guidelines (e.g. NCCN) should incorporate validated protocols, such as the Australian protocol, for guiding PEG placement decisions. Evidence from cooperative group trials (e.g., RTOG trials) that include PEG placement may further refine these protocols by providing insights into intervention outcomes and long-term effects in HNC care.
By addressing these research priorities, we can move towards a consensus on PEG tube placement in HNC survivors, ultimately improving quality of care and patient outcomes.
3.5. Action 5: Empower HNC Survivors with Essential Nutrition Literacy
Due to the high rate of NIS among HNC survivors, nutrition education within the context of MNT is critical to equip survivors to choose foods with beneficial nutrients for symptom alleviation, treatment recovery, and survival. An ability to act on nutrition education depends, in part, on the patient’s nutrition literacy. Nutrition literacy describes an individual’s nutrition-related skills and knowledge, such as comprehension of text-based nutrition information, ability to decipher nutrition information on food packaging, and ability to identify food sources of macronutrients, among others.64, 65 Health literacy research may provide some general implications for strategies to improve nutrition literacy, however, it has limitations in addressing the unique challenges and complexities of improving nutrition-specific knowledge, skills, and behaviors. Of these skills related to nutrition literacy, research has often focused on the ability to interpret nutrition information provided ubiquitously on food packaging. Approximately half of those with a cancer diagnosis report consulting the food label when making purchasing decisions.66 The use of food labels is consistently associated with better diet behaviors.67 However, most Americans struggle to correctly interpret the label’s nutrition information.68 Demographic and clinical factors associated with higher nutrition literacy include being female, having higher income, advanced degree, having received previous nutrition education training, and being previously diagnosed with a chronic disease.69
Nutrition literacy may also be important for cancer survivors seeking nutrition guidance from non-professionals, commonly through online sources.69 In this context, cancer survivors may struggle to navigate accurate but complex information presented by reputable organizations and may be more susceptible to misinformation perpetuated by social media.69, 70 Although the body of nutrition literacy research is small, particularly within the cancer population, findings thus far suggest nutrition literacy may be a construct nutrition practitioners and researchers working with survivors in clinical settings can address to improve patient diets. Pinpointing nutrition literacy deficits as important for individualized messaging,71 for instance, in a pilot randomized controlled trial (RCT) of 98 patients of general outpatient nutrition clinics, researchers found that when RDNs trained in nutrition literacy communication techniques had access to patient nutrition literacy scores, they tailored their educational approach accordingly, and patients improved their eating behaviors.72 Observational studies have found that nutrition literacy was associated with diet quality among breast cancer survivors73 and among adults with nutrition-related chronic disease.65 Thus, it is important to provide essential nutrition education to HNC survivors by trained nutrition professionals to promote positive changes in dietary behaviors and outcomes. Importantly, while these studies demonstrate improvements in eating behaviors, they do not confirm that these changes lead to long-term improvements in nutrition and health outcomes. Therefore, further research is needed to assess the sustained impact of these interventions on long-term dietary behaviors and health outcomes.
3.6. Action 6: Increasing Accessibility to Psychological Screenings and Services
Distress, a known widespread consequence of cancer diagnosis and treatment, is normalized in cancer survivors and may manifest behaviorally as anxiety, depression, sleep disturbance, fatigue, or cognitive difficulties.74 Distress has been deemed the “sixth vital sign” for assessment in oncology visits.75 The American College of Surgeons Commission on Cancer (CoC) required that treatment programs screen for distress and make subsequent referrals to provide comprehensive care.76 Importantly, among HNC survivors, distress may be amplified by the consequences of the cancer itself or associated treatments, including disfigurements or functional limitations (e.g., eating, speaking).40 In a study by Singer et al., HNC survivors reported three-fold more distress compared to other types of cancer survivors.77 Furthermore, among N=280 HNC survivors, one-third reported dietary needs, such as addressing eating problems, which were associated with increased distress.78 Establishing and implementing protocols for regular screening and referrals for distress will identify survivors most at risk, thereby enhancing care.
HNC survivors are known to experience disproportionately higher rates of depression and anxiety compared to the general population, as well as higher rates when compared to several other types of cancer.77 A recent epidemiological study indicated that HNC survivors with depression had significantly elevated mortality rates.79 Furthermore, mortality from suicide among HNC survivors was 40 times the rates of the general population, with advanced disease predicting an increased rate of suicide among HNC survivors likely due to factors such as functional disruption, emotional isolation, and lack of a support system.47, 80 Psychological issues such as depression, anxiety, and fear of recurrence can decrease treatment efficacy and overall survival impact on nutrition and eating habits.81, 82 Feelings such as fear, depression, and anxiety among cancer survivors may induce appetite loss.83 Stress could cause people to eat foods that are high in fat, sugar, or calories and low in nutrients.84 While treating psychological issues may be important for improving health behaviors and outcomes, this aspect is often overlooked in clinical practice.85 Evidence supports the important role of proper nutrition in mental health by providing essential nutrients that influence neurotransmitter production, brain function, and mood regulation.86 Emerging evidence highlights the critical role of food in mental health through the gut-brain axis, suggesting that modulating the gut microbiome through nutrition may be a valuable research opportunity to improve mental health in HNC survivors.86 However, research gaps still exist in understanding the role of probiotics and prebiotics in HNC survivorship, and the role of psychosocial approaches (e.g., antidepressants, therapy) in nutritional intake, highlighting the need for future studies to explore how these interventions might improve nutritional outcomes and overall well-being in HNC survivors.84, 87
3.7. Action 7: Addressing the Gaps in Speech Language Pathology Care
Studies suggest up to 50–60% of HNC survivors experience dysphagia during their treatment or recovery process, often due to HNC treatments such as radiotherapy or surgical procedures altering essential organs for normal eating and functioning.88 Dysphagia impacts nutritional status, increases malnutrition risk, and necessitates MNT administered by a RDN.89 As a result of dysphagia, nearly 80% of HNC survivors do not feel comfortable eating in public, increasing psychological and emotional consequences and social concerns.90 Early identification and management of dysphagia is crucial for preventing complications and addressing nutrition and hydration needs prior to, during, and after HNC treatment.
SLPs conduct pre-treatment dysphagia evaluations for HNC survivors, including the modified barium swallow studies (MBS) and flexible endoscopic evaluation of swallowing (FEES). SLP services have demonstrated the potential to improve outcomes in terms of swallowing and oral feeding safety, meeting nutritional requirements, and maintaining nutritional status among HNC survivors.91, 92 A retrospective case-control study showed that pre-treatment swallowing exercises lead to better swallowing outcomes, while reducing treatment-related dysphagia.93 Studies indicate swallowing impacts not only nutritional intake but also QOL, social interaction and mental health, underscoring the importance of a holistic approach to care.94 Traditionally, HNC teams include surgical, radiation, and medical oncology; however, the need for a more comprehensive multidisciplinary team with this population has been noted, prompting the inclusion of SLPs in multidisciplinary teams alongside RDNs and social workers.95 Considering the challenges of providing SLP care across all treatment settings, further investigation in optimal models of care delivery, such as telemedicine,91, 92 may be essential to achieve this call to action and increase the accessibility of such services for HNC survivors.
3.8. Action 8: Address Barriers and Promote Active Participation in Exercise Programming
HNC survivors frequently present with low skeletal muscle mass and experience worsening muscle loss during treatment. Sarcopenia, or muscle loss, occurs as a component of cachectic weight loss in this population, attributable to a confluence of factors including inadequate protein or energy intake, chronic malnutrition, dysphagia, inflammation, and physical inactivity.12 Treatment contexts including chemotherapy, radiation therapy, surgery, and associated postoperative recovery have all been shown to accelerate muscle loss.96, 97 Having low skeletal muscle mass and/or experiencing sarcopenia is associated with reduced strength and reductions in physical functioning, QOL, and survival. As we have described in this review, MNT from a RDN targeting increased caloric and protein consumption and use of oral nutritional supplements, are important for slowing weight loss and skeletal muscle wasting following HNC diagnosis.26 However, these interventions are likely optimized when delivered alongside exercise programming.98
The American College of Sports Medicine Exercise Guidelines for Cancer Survivors center on aerobic and resistance training, recommending at least 30 minutes of moderate-intensity aerobic exercise at least three days per week and twice weekly resistance training targeting all major muscle groups (at least 2 sets of 8–15 repetitions with loads at least 60% of maximal strength).99 ASCO 2022 similarly supports recommendations for regular aerobic and resistance exercise combined with balanced nutrition support to enhance treatment tolerance, reduce side effects, and support physical function and QOL during cancer treatment.100 Guideline-concordant exercise training benefits individuals across the cancer continuum for various cancer diagnoses and treatment types while emphasizing safety through gradually increasing activity.101 Baseline screening and testing are important for survivors prior to enrollment in exercise programs to ensure that they are safe, sustainable, and beneficial.99 Contexts in the HNC continuum including the presurgical period (e.g., exercise prehabilitation), postoperative recovery (e.g., physical therapy or exercise rehabilitation), chemotherapy or radiation therapy, and posttreatment survivorship all provide opportunities for exercise programming to improve QOL and outcomes.
Despite the clear potential for exercise training to improve physical functioning and strength and help survivors maintain or increase skeletal muscle mass, HNC and its treatment pose significant barriers to structured exercise programming.102 HNC diagnosis portends substantial reductions in physical activity for many survivors; a previous survey study identified a 70% reduction in physical activity post diagnosis, with only 8.5% of survivors meeting public health recommendations following diagnosis.103 Older age and cardiorespiratory comorbidities associated with frequent and extensive histories of tobacco and alcohol use can increase discomfort with exercise among HNC survivors and necessitate professional supervision of programming.104 Issues with food intake and nutrition resulting from tumors and treatments contribute to fatigue and weakness that reduce exercise capacity and motivation. Even following treatment, HNC survivors frequently report symptomatic exercise barriers including dryness of mouth or throat, fatigue, dyspnea, weakness, and difficulty swallowing.105 According to the above barriers, many standard exercise guidelines may not be fully appropriate for HNC survivors. Tailored and modest exercise interventions are needed to improve patient outcomes while remaining feasible for HNC survivors. In addition, it is possible that a modest exercise intervention combined with nutrition support can benefit HNC survivors. Cancer or treatment side effects can affect appetite among HNC survivors, increasing malnutrition risk; and exercise has been proven beneficial in mitigating these effects, including appetite loss.106 Exercise may also help HNC survivors manage appetite loss by improving their psychological state and ability to cope with stress and treatment-related effects. 82, 107–109 However, few RCTs have examined the benefits of structured exercise programming for HNC survivors, though they have collectively demonstrated feasibility, safety, and important benefits. The unique barriers associated with exercise in this population call for thorough and careful examination of the optimal structure, timing, and dosing (i.e., frequency, intensity, and duration) of prescriptions and programs to improve QOL and outcomes following HNC diagnosis. Such research aligns with precision nutrition and exercise strategies in oncology, supporting the NIH’s ‘Nutrition for Precision Health’ initiative.100
4. SUMMARY
There is a critical need for healthcare professionals, researchers, policymakers, and funding agencies to prioritize HNC nutrition care and research efforts. Increased funding for nutritional interventions is needed to develop a robust evidence base for informing policy changes, setting standards for cancer centers that have yet to find effective solutions in survivorship care, and establishing specific guidelines and requirements to ultimately improve patient outcomes. Future research should prioritize:
Access to MNT is essential for addressing malnutrition in HNC survivors. Additional RCTs and implementation research may assist in the passing the MNT Act, which could help establish MNT as a core aspect of cancer care, improve reimbursement, and enhance RDN training and availability.
PEG tube placement to prevent or treat malnutrition remains debated, which may be settled by establishing standardized terminologies and definitions, defining relevant outcomes, and incorporating an evidence-based regimen, such as the protocol developed by Brown et al..61 Further research, particularly through RCTs or cooperative group trials, is needed to determine the optimal timing and risk-based stratification criteria for PEG tube placement.
Improving nutrition literacy among survivors through individualized education should not be overlooked. Research focused on effective educational strategies (e.g. understanding food labels) can increase informed dietary decision making.
Regular psychological screenings are important to address the high distress rates impacting nutrition and mortality in HNC. We advocate for more mental health services in oncology and research exploring the potential role of nutrition interventions (e.g., microbiome interventions) in improving mental health outcomes.
Early detection of dysphagia through SLP can prevent malnutrition and hospital readmissions, necessitating multidisciplinary integration. Studies should examine the impact of pre-treatment swallowing exercises and standardized dysphagia management protocols on long-term NIS outcomes.
Tailored exercise programming in combination with nutrition support should be evaluated through RCTs for its impact on treatment-related challenges, muscle mass preservation, and physical function. Implementation research is needed to identify barriers and strategies for integrating these interventions into standard cancer care.
By prioritizing these research areas and advocating for increased funding and policy changes, healthcare professionals can significantly improve the nutritional well-being and overall QOL for HNC survivors. Ultimately, a comprehensive and integrated approach to nutrition care is critical for optimizing treatment outcomes and enhancing survivorship.
Acknowledgment:
This work was supported in part by Moffitt Cancer Center institutional funds (P30CA29200), the University of Kansas Medical Center Nutrition Shared Resource through the National Cancer Institute Cancer Center support grant (P30CA16852), and the Kansas Institute for Precision Medicine (P20GM130423).
Footnotes
Declaration of Interests:
AEA has received funding from the National Institute of Nursing Research and conference travel funding from the Academy of Nutrition and Dietetics. AMB has received funding from the National Institute of General Medical Sciences. GNG has received funding from Varian Industries, Aclaris Therapeutics, and Genentech-Roche, and has been compensated for lectures and presentations by IDEO Oncology and CancerNetwork. HDG has received funding from the National Institute of General Medical Sciences and is part owner of the copyright of the Nutrition Literacy Assessment Instrument and receives royalties from its use. HSLJ has had funding from Kite Pharma and has been a consultant for SBR Bioscience. JHR has received funding from the National Cancer Institute, conference travel funding from the American Society of Clinical Oncology, holds one patent, and serves in a leadership role for the Rhoades American Society for Parenteral and Enteral Nutrition Foundation Board. All other authors declare no competing interests.
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