Patients with head and neck cancer (HNC) suffer disproportionate psychosocial distress because of the nature of the tumor site, the possible impact on facial appearance and function, and the symptom burden resulting from treatment. Unmet psychosocial needs can negatively impact many aspects of care, from compliance to successful survivorship. This article reviews the challenges that patients with HNC confront throughout the disease trajectory from diagnosis to treatment, recovery, and long-term survivorship. It also provides a framework for understanding psychosocial adjustment and quality of life both for the general population of patients with HNC, and those with human papillomavirus-related diagnoses..
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A diagnosis of head and neck cancer (HNC) can be devastating because of feelings of shock, uncertainty and a fear of disfigurement, dysfunction, or disability.
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Patients with HNC confront physical and psychosocial challenges throughout the disease trajectory.
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There exists a high potential for psychosocial distress, including anxiety and depression, throughout the continuum of care, including survivorship.
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Patients with human papillomavirus (HPV)-related HNC are at increased risk for emotional distress because of their demographic profile as well as the viral cause of their tumors.
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Unmet psychosocial needs can complicate the course of treatment and recovery.
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There is a need for psychosocial assessment and support services for patients with HNC, including the subset of patients with HPV-related HNC, which in turn can maximize adjustment and quality of life.
| HNC | Head and neck cancer |
| HNSCC | Head and neck squamous cell carcinoma |
| HPV-HNC | Human papilloma virus-related head & neck cancer |
| QOL | Quality of life |
Introduction
The moment a person learns that they have cancer, the person feels as though the world has suddenly stopped and a storm of emotions sweeps in to fill the void. Disbelief, shock, anxiety, and fear are among those feelings. The realization that it is a head and neck cancer (HNC) intensifies the reaction because of the proximity of the cancer site to the vital structures important to breathing, speaking, chewing, and swallowing. There is not only a fear of death but also of a survival threatened with disability, disfigurement, and dysfunction.
Confusion compounds the shock when the person receiving the diagnosis is young, active, otherwise healthy, and possesses none of the classic risk factors such as extensive tobacco or alcohol abuse. This is the picture of the patient likely to receive a diagnosis of the unique subset of head and neck squamous cell carcinoma (HNSCC) that is associated with human papillomavirus (HPV). The mix of emotions that erupt on that day begins a journey marked by physical and psychosocial stresses. Those facing an HPV-related HNC (HPV-HNC), like the broader group of patients with HNC, confront physical and psychological challenges associated with diagnosis and treatment. In addition, this group face anxieties related to the cause and transmission of HPV, an aspect of patient care that has been underappreciated but that can confound adjustment. Furthermore, there are individual strengths and obstacles for each patient that play a role during the disease trajectory.
Patients with oropharyngeal HNC experience disproportionate psychosocial distress both at baseline and as a consequence of the disease. Most persons with HNC have a history of significant tobacco use; many also report heavy alcohol use. Some patients experience depressive symptoms even before a diagnosis is made, although others are likely to develop depression after treatment.
Surgical options cause facial disfigurement, which is usually visible. Organ preservation can now be achieved through combined chemotherapy and radiation regimens as the primary treatment. This strategy has provided promise and improved survival rates, but not without cost. Even when treatment is curative, concern about short-term and long-term quality of life (QOL) can be a factor in recovery because of the severe treatment-related toxicities. These side effects, like the disease itself, strike at the primary areas of daily functioning that are normally taken for granted, such as eating, speaking, and breathing. Thus, there is a threat to the basic elements of QOL at diagnosis, during treatment, and throughout survivorship.
Psychosocial distress has been associated with all cancers, but particularly with HNCs. In site-specific comparisons, HNC is among those groups experiencing the highest levels of distress as measured within 90 days of diagnosis. Likewise, depression measured independently is prevalent in many oncology patients. Within specific cancer groups, patients with HNC, and predominantly those with oropharyngeal cancers, experience the highest rates of major depressive disorder, (22%–57%). HNC creates challenges because of the nature of the tumor site, the possible impact on facial appearance and function, and the symptom burden resulting from treatment. There exists a high potential for depression and general distress.
There is scarce research dedicated to psychosocial distress in the subset of HPV-HNC. However, there are reasons to suggest that this subset may be at high risk. These cancers are primarily oropharyngeal, a tumor site that has been associated with high rates of depression. Patients are more likely to undergo the combined modality treatments that produce many adverse affects. Moreover, HPV-related cancers are known to be sexually transmitted and have been correlated with specific sexual behavior patterns, including a high number of partners, young age of first sexual encounter, high frequency of oral sex, and marijuana use. The relationship between sexual behavior and HPV-related oropharyngeal cancers can further contribute to emotional turmoil and depression. The acknowledgment that one’s cancer is derived from a sexually transmitted infection can be a source of distress.
Psychosocial factors and distress can have a far-reaching impact on QOL and adjustment at all points in the disease trajectory. Accordingly, it is important to understand the variables that constitute QOL and their relationship to psychosocial adjustment. This understanding provides the framework to describe and understand the psychosocial factors and challenges that face patients with HNC, including those with HPV-related tumors, as they journey through the course of their disease from diagnosis, treatment, and recovery to survivorship.
QOL and psychosocial adjustment
What is QOL?
The World Health Organization defines QOL as “a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity.” Traditionally, treatment success has been measured by tumor reduction or disease-free survival. Advances in treatment of HNC have generated multiple treatment options with equal disease-free outcomes. There has also been acknowledgment that there are substantial late effects of combined modality treatment. Consequently, new emphasis has been placed on QOL and psychosocial adjustment to both disease and its treatment. The question is not so much “Can this cure me?” but rather “Can this cure me and how will it leave me?” or “What will my life be like when I am done?” These are legitimate questions that should be considered in the treatment planning stage.
QOL encompasses multiple dimensions beyond physical health and well-being:
- •
It may be measured in part by number or intensity of physical symptoms.
- •
QOL incorporates social and psychological well-being and includes such key elements as:
- ○
Satisfaction with home life
- ○
Satisfaction with family
- ○
Satisfaction with religion
- ○
Satisfaction with education or income
- ○
Ability to work
- ○
Daily functional activities, including eating and speaking.
- ○
The increasing cohort of patients with HPV-related oropharyngeal cancers will no doubt place greater emphasis on these broader areas of living. The trend for better disease outcomes in this group, coupled with a younger age of onset, presumes a long survivorship. Thus, survivors need to address the psychosocial stressors and adaptive challenges that may result from various treatments over a long period.
How is QOL Measured?
Measuring these areas is difficult because they can be based on a subjective perception of satisfaction. The World Health Organization further explains QOL as “an individual’s perception of their position in life, in the context of the culture and value systems in their life and in relation to their goals, expectations, standards, and concerns.” This perception can create differing assumptions between patient, family, or health care providers. In addition, there is the added dimension of community manifested by societal expectations and interpretations of the patient’s QOL. Thus, there may be a discrepancy in which:
- •
A patient may report feeling fine, but family members may think that the patient is not eating enough or trying hard enough.
- •
A physician may report that a patient is doing well, whereas the same patient may say or think that they are “a mess”.
- •
A patient may feel too embarrassed to go out with friends, although friends are proud of the strength and courage of the patient and want to make social plans.
- •
The patient’s subjective experience can vary and not be associated consistently with functional outcomes.
- •
Patients can score high on QOL scores but report significant depression, or have poor functional scores but minimal depressive symptoms.
It is not clear from research why these discrepancies occur, but it is an area that continues to be studied. Understanding and interpreting QOL can be a complex process. Yet, in the setting of multiple treatment choices, these variables carry greater weight as one means of determining an optimal regimen.
Which QOL Instruments are Used in HNC Research?
Many QOL instruments are used in HNC research, including:
- 1.
University of Washington
- 2.
EORTC (European Organisation for Research and Treatment of Cancer ) 30 and 35
- 3.
FACT-HN (Functional Assessment of Cancer Therapy–Head and Neck).
These 3 questionnaires cover multiple domains, including:
- •
Functional
- •
Emotional
- •
Social
- •
Subset of HNC-specific questions.
Other surveys measure depression and anxiety independently. Frequently used instruments include inventories created for the general population:
- 1.
HADS (Hospital Anxiety and Depression Survey)
- 2.
Beck Depression Scale
- 3.
BSI (Brief Symptom Inventory).
Some studies compare elements of QOL measures with depression or anxiety measures as a way to understand the interrelationships. These instruments are each based on patient self-report and provide the patient’s subjective analysis of the situation.
How Do Psychosocial Factors Affect QOL Appraisal?
Psychosocial factors can play an important role in influencing the subjective elements of one’s personal appraisal of QOL. Likewise, psychosocial challenges and how they are managed can play a significant role in adjustment and in QOL. These challenges may:
- •
Present at time of diagnosis, preexisting
- •
Present at time of diagnosis, as a result of the diagnosis and impending treatment
- •
Develop and change during treatment, and throughout recovery and survivorship.
Examining the psychosocial challenges throughout this continuum of care enhances understanding of adjustment and QOL. Specifically, 4 stages are explored:
- 1.
Diagnosis
- 2.
Treatment
- 3.
Recovery
- 4.
Long-term survivorship.
The unique challenges and responses of each phase are described, along with possible interventions. Current research on psychological distress and coping during treatment is general to most HNC types and may distinguish between tumor subsets and treatment modalities. There is negligible research that explores the psychosocial challenges and needs specific to the cohort of HPV-HNC. However, available HNC research, theory, and clinical experience provide insight in to the needs of this group. In light of their increasing numbers, a new impetus to investigate their unique psychosocial construct is warranted.
QOL and psychosocial adjustment
What is QOL?
The World Health Organization defines QOL as “a state of complete physical, mental, and social well-being, and not merely the absence of disease or infirmity.” Traditionally, treatment success has been measured by tumor reduction or disease-free survival. Advances in treatment of HNC have generated multiple treatment options with equal disease-free outcomes. There has also been acknowledgment that there are substantial late effects of combined modality treatment. Consequently, new emphasis has been placed on QOL and psychosocial adjustment to both disease and its treatment. The question is not so much “Can this cure me?” but rather “Can this cure me and how will it leave me?” or “What will my life be like when I am done?” These are legitimate questions that should be considered in the treatment planning stage.
QOL encompasses multiple dimensions beyond physical health and well-being:
- •
It may be measured in part by number or intensity of physical symptoms.
- •
QOL incorporates social and psychological well-being and includes such key elements as:
- ○
Satisfaction with home life
- ○
Satisfaction with family
- ○
Satisfaction with religion
- ○
Satisfaction with education or income
- ○
Ability to work
- ○
Daily functional activities, including eating and speaking.
- ○
The increasing cohort of patients with HPV-related oropharyngeal cancers will no doubt place greater emphasis on these broader areas of living. The trend for better disease outcomes in this group, coupled with a younger age of onset, presumes a long survivorship. Thus, survivors need to address the psychosocial stressors and adaptive challenges that may result from various treatments over a long period.
How is QOL Measured?
Measuring these areas is difficult because they can be based on a subjective perception of satisfaction. The World Health Organization further explains QOL as “an individual’s perception of their position in life, in the context of the culture and value systems in their life and in relation to their goals, expectations, standards, and concerns.” This perception can create differing assumptions between patient, family, or health care providers. In addition, there is the added dimension of community manifested by societal expectations and interpretations of the patient’s QOL. Thus, there may be a discrepancy in which:
- •
A patient may report feeling fine, but family members may think that the patient is not eating enough or trying hard enough.
- •
A physician may report that a patient is doing well, whereas the same patient may say or think that they are “a mess”.
- •
A patient may feel too embarrassed to go out with friends, although friends are proud of the strength and courage of the patient and want to make social plans.
- •
The patient’s subjective experience can vary and not be associated consistently with functional outcomes.
- •
Patients can score high on QOL scores but report significant depression, or have poor functional scores but minimal depressive symptoms.
It is not clear from research why these discrepancies occur, but it is an area that continues to be studied. Understanding and interpreting QOL can be a complex process. Yet, in the setting of multiple treatment choices, these variables carry greater weight as one means of determining an optimal regimen.
Which QOL Instruments are Used in HNC Research?
Many QOL instruments are used in HNC research, including:
- 1.
University of Washington
- 2.
EORTC (European Organisation for Research and Treatment of Cancer ) 30 and 35
- 3.
FACT-HN (Functional Assessment of Cancer Therapy–Head and Neck).
These 3 questionnaires cover multiple domains, including:
- •
Functional
- •
Emotional
- •
Social
- •
Subset of HNC-specific questions.
Other surveys measure depression and anxiety independently. Frequently used instruments include inventories created for the general population:
- 1.
HADS (Hospital Anxiety and Depression Survey)
- 2.
Beck Depression Scale
- 3.
BSI (Brief Symptom Inventory).
Some studies compare elements of QOL measures with depression or anxiety measures as a way to understand the interrelationships. These instruments are each based on patient self-report and provide the patient’s subjective analysis of the situation.
How Do Psychosocial Factors Affect QOL Appraisal?
Psychosocial factors can play an important role in influencing the subjective elements of one’s personal appraisal of QOL. Likewise, psychosocial challenges and how they are managed can play a significant role in adjustment and in QOL. These challenges may:
- •
Present at time of diagnosis, preexisting
- •
Present at time of diagnosis, as a result of the diagnosis and impending treatment
- •
Develop and change during treatment, and throughout recovery and survivorship.
Examining the psychosocial challenges throughout this continuum of care enhances understanding of adjustment and QOL. Specifically, 4 stages are explored:
- 1.
Diagnosis
- 2.
Treatment
- 3.
Recovery
- 4.
Long-term survivorship.
The unique challenges and responses of each phase are described, along with possible interventions. Current research on psychological distress and coping during treatment is general to most HNC types and may distinguish between tumor subsets and treatment modalities. There is negligible research that explores the psychosocial challenges and needs specific to the cohort of HPV-HNC. However, available HNC research, theory, and clinical experience provide insight in to the needs of this group. In light of their increasing numbers, a new impetus to investigate their unique psychosocial construct is warranted.
Diagnosis stage of HNC
The diagnostic stage can be considered the period that begins with the onset of symptoms and continues through the diagnosis and treatment planning phase. When people are first confronted with symptoms that are merely suspicious for cancer, they begin to feel anxiety and turmoil. Jimmie Holland MD in her book The Human Side of Cancer describes this phenomenon, noting the emotions evoked by the initial fear of a cancer diagnosis and then magnified by its confirmation. These emotions include anxiety, shock, disbelief, fear, and uncertainty about the future. People who have never contemplated their own death are suddenly confronted with the realization, “I can die from this.” This reaction is compounded for the patient with HNC by added fears of dysfunction and disfigurement. Many people have preconceived notions of what treatment of HNC entails. They have images of disfigured faces and incomprehensible speech. Younger patients, as commonly associated with HPV-HNC, are likely active, healthy, employed, and socially involved, potentially leading to a greater sense of shock and confusion. Younger patients also have younger families, which generates fears about providing for or even being there for their family. The shock of this diagnosis is further colored by the realization that HPV is a sexually transmitted infection. This realization spawns fear of stigma, feelings of guilt or doubt, and questions for partners and spouses about sexual history.
Short Interval from Diagnosis to Treatment Planning
There is little time to absorb the shock of the diagnosis because patient and family quickly enter the treatment planning stage. For the patient with HNC, this involves:
- •
A myriad of appointments with specialists
- •
A potentially prolonged interval between the onset of symptoms, diagnosis, and treatment planning
- •
Conflicting information complicated by the Internet
- •
The prospect of an uncertain future.
The result can be any combination of depression, frustration, anxiety, annoyance, confusion, and fear. Patients often describe the period from diagnosis to start of treatment as the worst time in their disease. When considering a typical scenario for a patient with newly diagnosed HNC and in particular one with an HPV-related diagnosis, it is easy to comprehend the complexity of this period.
Effect of Symptoms
Symptoms of HNC are often insidious, which delays a definitive diagnosis.
- •
Patients often start with 1 or several medical professionals, including a primary care physician, dentist, or general otolaryngologist before reaching an HNC specialist.
- •
They may have been given 1 or 2 courses of antibiotics before undergoing a biopsy.
- •
In the case of a younger patient presenting without the classic risk factors, particularly significant tobacco or alcohol abuse, a suspicion of cancer is not high in a differential diagnosis list.
- •
Anxiety and fear can build up during this period of uncertainty and continued symptoms.
- •
This period can last from weeks to months.
Diagnosis Confirmation
- •
When the diagnosis is finally confirmed, patients and families may experience anger or guilt.
- •
The diagnosis itself creates turmoil and crisis marked by a range of strong emotions beginning with disbelief, and high anxiety.
- •
As the reality of the situation sets in, there are feelings of dysphoria marked by further anxiety, depression, poor concentration, and difficulty sleeping.
- •
It may be difficult to process all of the information.
- •
There is adaptation to the diagnosis and treatment.
A patient typically moves from disbelief to dysphoria and adaptation quickly, often in a matter of weeks. At the same time, the patients and families must continue to manage and coordinate additional medical appointments along with important treatment decisions.
Transition from Diagnosis to Treatment
The patient with newly diagnosed HNC is confronted with many disease-related demands as they move to treatment.
- •
The demands evoke feelings of confusion, impatience, and fears for consequences of delays in treatment.
- •
Patients and families are introduced to new concepts such as feeding tubes, port catheters, fluoride trays, and radiation masks. Previously unknown, these medical devices are soon to be part of their day-to-day living.
- •
When radiation is part of the treatment plan, the patient with HNC also must undergo a fitting for the face mask; that alone can be a traumatic experience, especially for someone who is claustrophobic.
- •
Patients must then embrace the reality that this mask will be placed on them for every radiation treatment, that the feeding tube may become the primary source of nutrition, and that their lives will be controlled by treatment schedules.
Patterns of Anxiety and Depression
Dealing with these tumultuous emotions is demanding. Managing these feelings along with the challenges of this early period is different for each individual. Each patient brings unique life experiences as well as physical and psychological morbidities as they confront diagnosis.
- •
Many patients with HNC have preexisting mental health problems, such as depression, anxiety, alcohol or tobacco abuse, or cognitive decline related to age or addiction.
- •
Patients with HNC have been shown to have a higher incidence of depression and suicide compared with the general cancer population. Davies and colleagues examined depression among patients with HNC in the investigative stage. Patients awaiting biopsy results completed depression surveys; findings showed that a positive biopsy result was correlated with a higher incidence of prediagnosis depression.
- •
Patients with no previous history of mental health problems have also been known to develop new-onset depression after diagnosis, most likely as a reaction to their cancer.
These patterns are significant because research has shown that psychosocial distress at baseline is a predictor of problems during and after cancer treatment.
- •
Howren and colleagues found that even the presence of mild depressive symptoms before the start of treatment can have a significant deleterious effect on health-related QOL, including eating and swallowing.
- •
Pretreatment depression has been correlated with higher levels of posttreatment depression. In 1 study, depression was identified as a strong but modifiable risk factor for malnutrition in patients undergoing radiotherapy for HNC.
- •
Preexisting anxiety has also been correlated with posttreatment anxiety.
- •
In addition to morbidities, certain demographic variables are associated with depression and anxiety :
- ○
Employment status (working at the time of cancer diagnosis)
- ○
Younger age (<55 years)
- ○
Single marital status
- ○
Living alone
- ○
- •
Several studies have concluded that anxiety is more prevalent in younger patients.
- •
Male patients are more likely to have posttreatment anxiety.
The demographics of young age, male, and active involvement in careers characterize the HPV-HNC population, suggesting they may be at higher risk for depression and anxiety.
Coping Styles
Coping styles have also been shown to influence disease adjustment and outcome.
- •
In 1 study, deniers and fighters were noted to have significantly more favorable management of their illness :
- ○
The denier minimizes the illness, shows little emotional expression, but compliantly completes all treatment demands
- ○
The fighter displays excessive emotion, even aggressiveness, and remains involved and active in their treatment
- ○
- •
Verdonck-de Leeuw and colleagues reported that a passive coping style in patients and spouses correlated with greater distress.
This range of morbidities and personal variables accompany patients as they face their diagnosis and treatment, which then interplay with the medical treatment regimen and can influence outcome.
Comorbidities
As patients approach treatment, they must confront their history of emotional difficulties or substance abuse.
Psychiatric problems
Patients with significant psychiatric problems may require a pretreatment evaluation with acute intervention. The newer aggressive treatment regimens require physical, psychological, and social strength.
Tobacco and alcohol use
Tobacco and alcohol abuse should also be addressed at this time. It is particularly critical to address alcohol abuse for surgical patients because of the risk for a complicated alcohol withdrawal and prolonged hospitalization. Nicotine can also negatively affect healing and postsurgical complications. Continued nicotine use also places patients at higher risk of recurrence. A portion of HPV-positive patients also have a history of heavy tobacco or alcohol use. Accordingly, these variables should not be ignored in the HPV-positive group.
Sexually transmitted disease
The subset of younger patients with HPV-related HNSCC may present with high levels of anxiety because of the unexpectedness of the diagnosis, their fears related to the consequences of the disease on their young families, and the realization that their cancer derives from a sexually transmitted infection. In addition to fears and adjustment to a cancer diagnosis, patients must confront the implications of the correlation of their cancer to HPV. They must deal with their own reaction as well as that of their partner, their family, and their community.
A review of literature on HPV testing and cervical screenings for women can provide insight into the range and extent of emotions possible when dealing with a sexually transmitted disease:
- •
Research on HPV testing for women as part of cervical cancer screening has suggested that an HPV-positive result may have an adverse psychosocial impact for the women tested, with increased anxiety, distress, and concern about sexual relationships.
- •
A qualitative study of the impact of repeated HPV testing on women that included in-depth interviews reported that feelings of shock, confusion, and distress about testing HPV-positive were common for these women.
- •
Emotions were commonly related to concerns about sexual transmission, the cause of the virus, and anxiety about the health implications.
- •
A lack of knowledge about HPV seemed to trigger anxiety, often leading to frantic Internet searches to answer questions that may arise.
- •
Similarly, patients confronted with an oropharyngeal HPV-associated malignancy can experience anxiety and distress as they try to understand the implications of HPV infection and its connection to their cancer.
- •
There may be questions about cause that can lead to concerns about fidelity, past relations, and underlying suspicions by the spouse.
These variables can potentiate stress in a relationship already burdened by the strain of the cancer itself at a time that adaptation to treatment is critical. Patients and their partners require reliable and comprehensible information from the health care team so that these issues can be addressed.
Social and financial support
Patients with HNC may also present with either inadequate or no family, social, financial, or health insurance support. These variables can affect treatment compliance and adjustment.
- •
Living alone and having no spouse or partner have been correlated with delay in seeking treatment and have been determined to be predictors of psychological distress for newly diagnosed patients with HNC.
- •
Financial worries can contribute to additional stress for patient and family. This stress can be equally applicable to patients diagnosed with an HPV-HNC despite their tendency to be of higher socioeconomic status. Often, families must work hard to maintain a high standard of living, including overtime, second jobs, and debt; as a result, there can be a fear of losing a portion of income essential to paying bills and maintaining lifestyle. Likewise, decisions about health insurance coverage may have been made based on costs, leaving a risk of high deductibles or medical copayments or even having no insurance.
The knowledge that psychosocial factors present at diagnosis can have far-reaching impact beyond the treatment stage underscores the need for a psychosocial assessment to be part of the initial workup. Preexisting psychosocial concerns and problems can be addressed early with appropriate information and referrals and then followed by ongoing support. This strategy can enhance adjustment and successful management of aggressive treatment choices.
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