Newly diagnosed patients find themselves thrust on a journey that disorganizes their daily function, and is surrounded with much fear and uncertainty. At the outset, patients have to assimilate important information about their condition and treatment options, and many embark on treatment regimens, all of which can threaten their physical and psychological well-being. 
Patients with head and neck cancer have very specific and vast needs that are beyond the needs of most other patients diagnosed with other types of cancer.  Frequently, many of these patients cannot conceal the effects of treatment because of the very visible nature of their condition and obvious functional difficulties. They must also embrace the reality of profound changes in relation to their speech, ability to swallow, taste, as well as noticeable alterations in appearance. Such factors led Koester and Bergsma to describe head and neck cancer as more emotionally traumatic than any other type of cancer. 
Despite significant investment in research to investigate different treatment regimens for head and neck cancer, limited improvement in patient survival has been achieved in the last 30 years in many countries. [5,6] One reason for this is that head and neck cancer is frequently diagnosed at an advanced stage. In addition to survival, assessment of quality of life issues after treatment has gained increased attention within cancer research. Quality of life goes beyond physical and functional dimensions and what may be more important is how the patient with head and neck cancer functions within society after treatment. [7,8] Herzon and Boshier observed that patients placed immense importance on reentering society in a meaningful way and that this often precedes even fear of reoccurrence.  In conjunction with the reporting of problems in social functioning, head and neck cancer has been identified as an actual and potential source of considerable emotional distress. [5,10,11] Hammerlid et al assessed prospectively the level of psychiatric morbidity and mental distress in newly diagnosed Swedish and Norwegian patients with head and neck cancer.  Their findings highlighted that one third of the participants were classified as possible/probable cases of major mood disorder using the Hospital Anxiety and Depression Scale (HADS).  Such findings have been replicated in other studies, which demonstrate that anxiety and depression is experienced by approximately 30% to 40% of patients following treatment for head and neck cancer. [11,14] One outcome of depression is suicide, with Boulnd noting that patients with head and neck cancer form a relatively large proportion of suicide cases in cancer patients.  This has also been acknowledged by Farberow et al, who concluded that 2 head and neck sites alone (tongue and pharynx) accounted for almost 20% of the total suicides among male patients with cancer.  Paradoxically, while psychosocial dysfunction is often the major burden for patients with a head and neck cancer diagnosis, it has received relatively limited, systematic, prospective investigation, and, therefore, little progress has been made to develop an effective rehabilitation program to enhance the quality of life for this group of patients.
Much of the earlier work on factors associated with psychosocial dysfunction in patients with head and neck cancer was based on qualitative information. Although qualitative research provides a rich source of information from the patients’ perspective, it often lacks standardization, which means replication is difficult, if not impossible. Moreover, few definitive conclusions are permitted because of small sample sizes on retrospective heterogeneous cohorts. Methodological weaknesses are also apparent in much of the quantitative data available within the last decade, due, in part, to the predominance of retrospective studies, with an overrepresentation of patients with positive outcomes, that is, patients who have survived head and neck cancer treatment. Also, the majority of investigations lack an explicit theoretical model or utilize definitions of psychosocial concepts. There is therefore a need for prospective studies in this area encompassing representative samples with appropriate statistical power.
In addition to methodological problems, there has also been minimal research into effective psychosocial intervention programs for patients with head and neck cancer. Conversely, an increased amount of evidence is available on psychosocial interventions for the generic cancer population, such as education, emotional support, or psychotherapy. In general, several randomized controlled trials have been carried out that demonstrated that significant psychological functioning could be achieved with relatively brief interventions.  It must however be noted that not all studies have achieved the positive desired outcome of reduced levels of depression and anxiety, such as intervention studies using education alone and peer support group. 
Moreover, cognitive-behavioral therapy (CBT) has evolved with a robust evidence base, which makes it the currently preferred form of treatment for a wide range of anxiety and psychological disorders.  Researchers’ use of CBT has demonstrated substantial benefits in cancer care, [20-22] and in heterogeneous samples of patients with facial disfigurement.  These studies determined that psychological therapy based on the principles of CBT significantly reduced psychological morbidity, [20-23] providing justification for further investigation of the efficacy of cognitive behavioral interventions in patients with head and neck cancer.
Head and Neck Cancer: Prevalence, Histology, Etiology, Treatment Modalities, and Prognosis
Cancer of the head and neck is a term used to describe neoplasms that arise from the surface mucosa of the upper aerodigestive tract. Head and neck cancer may occur in diverse structures and sites such as the lip, oral cavity, tongue, pharynx, larynx, nasal cavity, and sinuses. Neoplasms of other associated structures such as the ear, orbit, skull base, and salivary glands are also included within the scope of head and neck cancer management. Skin cancers of the head and neck region have not traditionally been included in the definition, since the risk factors and treatment can differ in many respects from neoplasms at other head and neck sites. Likewise, neoplasms affecting the brain are categorized separately.
Head and neck cancer is the 10th most common cancer in the world,  and in the United Kingdom, it accounts for 4% of all malignant cancers.  There is a concern that the incidence is increasing, particularly in younger patients and in women.  The male/female ratio is less than 2:1, and this gap is closing steadily.  This shift in trend appears to result from changes in adult smoking prevalence, where the proportion of men who smoke has decreased and the proportion of young females who smoke has increased.  More than 20% of patients diagnosed with head and neck cancer will develop a second or third primary tumor, most often within the oral cavity, due to susceptibility of the mucosa to carcinomatous change. 
The majority of head and neck neoplasms are squamous cell carcinomas (approximately 80%).  Other less common types of malignant neoplasms are adenocarcinomas, sarcomas, melanomas, and lymphomas.
The most common head and neck cancers, squamous cell carcinomas, have a different pathology from the rarer salivary gland neoplasms, whose origin is largely unknown. The primary and most influential etiological factor for squamous cell carcinoma is tobacco use, with 80% to 90% of patients having a history of smoking.  There is also substantial evidence to indicate that alcohol not only acts in synergy with tobacco to amplify the risk,  but also is an independent risk factor.  For example, Andre et al quantified that head and neck cancer is 34 times more likely to occur in a person who drinks more than 1.5 L of wine a day than in a nondrinker.  There are a number of other risk factors that have been postulated, including chronic candidal infection, nutritional and vitamin deficiency, and exposure to high levels of dust and chemicals. 
Curative treatment is directed toward elimination of the primary neoplasm and any neck nodal metastases, with minimum morbidity to the patient.  Surgery and radiotherapy remain the primary modalities of therapy, often in combination. Chemotherapy is increasingly being used as an induction therapy or as an adjuvant to radiotherapy, with or without surgery, for curative intent. Also, laser surgery is increasingly being used with a spectrum of treatment aims, ranging from a primary treatment modality to palliative management.
The 5-year survival for all stages of head and neck cancer is 35% to 50% and this is believed to be due, in part, to late presentation.  Five-year survival rates are dependant on stage and site of tumor, with stage I and II survival rates ranging from 40% to 95% and stage III and IV survival rates ranging from 0% to 50%.  It is predicted that at least one third of all patients with head and neck cancer will ultimately die as a result of their disease. This 5-year mortality rate for head and neck cancer has not altered significantly in the last few decades, despite advances in treatment modalities.  The annual mortality for head and neck cancer is of the same magnitude as that of malignant melanoma or cervical cancer,  both of which have been subject to intense media interest, educational campaigns, and screening programs.  It is interesting to ask why there appears to be less interest in head and neck cancer despite the emotional, functional, and aesthetic importance of this particular area. It could be concluded that the importance of patient education and regular screening by dentists and doctors should be emphasized if there has to be a shift in patient survival figures.
The Challenge of Head and Neck Cancer for the Patient
There are 2 main parameters of impairment with head and neck cancer, namely, disfigurement (structural change) and dysfunction.  To a variable degree, both disfigurement and dysfunction are the result of the most common treatment modalities (surgery and radiotherapy) or as a direct consequence of tumor growth.
This instantaneously ascribes problems for patients with head and neck cancer as individuals place enormous importance in the head and neck area, more than any other part of the body. This is because the face is perceived as an important determinant of our internalized sense of who we are.  In conjunction with this, social interaction, emotional expression, and functional capabilities such as swallowing depend vastly on the integrity of this area.
Patients may have real and compounding problems in the social and family setting, which are often directly related to the change in many basic functions such as eating, speaking, and breathing. In a retrospective study on the incidence of side effects specifically related to eating in 25 patients with oropharyngeal cancer, 72% of patients required modified diets and 80% suffered from xerostomia for more than 1 year after curative treatment.  These researchers concluded that following curative intervention for head and neck cancer, most patients could not return to normal eating. Other undesirable side effects of treatment, such as poorly intelligible speech and drooling, can cause embarrassment and have a significant impact not only on social and family interactions but also on more internalized feelings of low self-esteem. 
For many patients, the signs of head and neck cancer cannot be concealed. Therefore, they are subjected to unwanted intrusion such as staring or comments.  This perceived hostility has led Mc Grouther to describe facial disfigurement as the last bastion of discrimination in the country.  However, Partridge concluded that there was more evidence of uncertainty than open hostility toward disfigurement from the observer.  However, it has been widely reported that many people with facial disfigurements feel stigmatized in society [10,44,45] and also report difficulties making friends, obtaining jobs, and with their sexual attractiveness.  As a consequence of these difficulties, patients can experience depression, social anxiety, reduced self-esteem, sexual difficulties, and a generalized sense of reduced quality of life. 
In addition, pain is often a problem with any type of cancer diagnosis. It is one of the most feared symptoms in cancer and can have a significant impact on both the quality of life of patients and their families. The International Association for the Study of Pain describes pain as an unpleasant sensory and emotional experience with actual or potential tissue damage. [48(p232)] Saunders established the concept of total pain, embracing not only the physical components of pain but also mental, social, and spiritual aspects.  Thus, the meaning individuals place on their pain is significant, and, therefore, affects their ability to cope with pain, their perceived level of pain, and their affective state.  Pain can be an extremely complex concept, and, for optimal pain management, a multidisciplinary team approach is often essential.
It can be suggested that the significance of pain for the patient with head and neck cancer is augmented because of the vital functions encompassed in this area, such as communication and eating. Chaplin and Morton reported that 48% of patients with head and neck cancer had pain at diagnosis, and 25% and 26% at 12 and 24 months, respectively.  Furthermore, logistic regression analyses indicated that the presence of pain had an adverse effect on life satisfaction at 1 ( P = .04) and 2 years ( P = .01) after treatment.
Quality of Life
Within the realm of cancer management, it is no longer satisfactory just to measure the effectiveness of treatment on survival alone, as cancer and its subsequent treatment may cause physical, emotional, and psychological difficulties for individuals. In other words, it is not only quantity of life that is important but also quality of life. Therefore, today the measurement of quality of life should be an adjunct to the traditional end points of overall survival, disease-free survival and tumor response in cancer management. 
Quality of life studies have particular importance in many clinical trials, especially where there are 2 treatment options and neither provides any clear survival advantage.  It is then essential to ascertain which treatment is most acceptable to the patient undergoing the often difficult regime in terms of quality of life. Thus, in clinical practice, informed decisions can be increasingly made on other criteria, such as treatment-related side effects, rather than on only survival data.
It is difficult to elucidate a completely satisfactory, all-inclusive definition of quality of life  because quality of life may mean different things to different people. The theoretically related concepts have brought about much confusion and have preoccupied a wide range of disciplines, dating back to Aristole (384-22 BC) and early Greek philosophy.  The World Health Organization Quality of Life (WHOQoL) group, in their comprehensive definition of quality of life, describe quality of life as individuals’ perception of their position in life in the context of culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. [53(p551)] The WHOQoL acknowledges the primacy of subjective perceptions and also the role of objective or contextual factors. In cancer care, poor quality of life has been explained as the gap that exists between one’s actual status and one’s ideal standard.  Others, such as Dolbeault et al, discussed the term quality of life as a person’s perception of his/her ability to function in meaningful areas of living after illness as compared to before illness.  Both these definitions also emphasize the subjective and evaluative nature of the concept. Despite the difficultly in finding a universal definition of quality of life, most authors agree that it is, at its most fundamental level, subjective, multidimensional, and dynamic as it changes over time and situations. [56,57] This reinforces the need for longitudinal assessment of quality of life, to ensure that strategies to optimize quality of life are appropriately implemented for specific needs and circumstances at a given time.
Generally, under the quality of life umbrella, most of the following domains or constructs are found, namely, life satisfaction, physical functioning, psychological functioning, social relationships, occupational performance, and adverse effects of treatment.  In general, the term quality of life encompasses all aspects of patients’ well-being and may include the impact of living standards and environmental factors. Clinicians and clinical researchers are usually more specific and ascribe to the term health-related quality of life (HRQoL) , which refers to the aspects pertaining to a health or medical concern.  Therefore, HRQoL can be considered synonymous with subjective health status assessment. Assessment of HRQoL has been advocated as a means of translating how a patient’s response to treatment is experienced by that patient. In oncology settings, the term quality of life is more popular than is HRQoL.  A possible explanation for this discrepancy is that it feels intuitively inappropriate to discuss health in patients diagnosed with a potentially fatal illness.
It is evident that there has been a significant increase in interest in quality of life issues and studies in recent years. Talmi noted that although a MEDLINE search revealed only 6 articles with quality of life as a key word in 1970, this increased to 234 in 1980, 1383 in 1990, and 4797 in 2000.  It is, therefore, of no surprise that quality-of-life issues for patients with head and neck cancer have also attracted an expansion of attention. Recent studies, within the head and neck cancer field, on quality of life have predominantly provided information on the evaluation and validation of disease-specific head and neck cancer instruments and how different treatment modalities affect quality of life. Patients with head and neck cancer have multiple, unique, and challenging symptoms due to their disease and treatment side effects, which will have an impact on the patient’s quality of life; thus, the concept of quality of life is extremely important for patients with head and neck cancer. However, while researchers and clinicians are beginning to find out more about the problems encountered by patients with head and neck cancer, many factors influencing their quality of life still remain poorly understood.
Head and neck cancer is often associated with high levels of emotional distress, which manifests itself in psychosocial dysfunction.  Within the literature, it is evident that psychosocial well-being or other specific domains such as performance status are misinterpreted as quality of life.  Despite the relevance of these studies, they would be better described as examining specific domains or concepts relating to quality of life. Kaasa also correlates other variables, such as personality, coping style, and social support, to quality of life.  In other words, quality of life can be treated as a dependent variable both conceptually and empirically.
The research and clinical work in quality of life is at an exciting stage, as many appropriate global and disease-specific research instruments have already been developed and validated for patients with head and neck cancer ( Table 1 ). With these standardized tools, researchers are beginning to find out more about the difficulties experienced by patients with head and neck cancer, but far less is known about the management of such problems. Hence, the next logical step is to examine variables, such as coping styles, personality, and social support, that may influence the quality of life of patients with head and neck cancer. Only by examining the relationships between these variables and quality of life can we begin to develop a greater understanding of factors associated with quality of life for patients with head and neck cancer. With such knowledge, an appropriate clinical intervention program can then be developed
There are several distinct categories of interventions that have been employed for patients with cancer, namely, education, emotional support, and psychotherapy. Fawzy suggested that psychosocial interventions provide an overall positive effect on quality of life, although some interventions have failed to achieve the desired results.  For example, Pruitt et al undertook a prospective, randomized controlled trial to determine whether education would reduce psychological distress in newly diagnosed cancer patients.  Thirty-one patients who were assessed to be at high risk with high levels of distress were randomly assigned to three 1-hour information sessions about radiation therapy, cancer, coping strategies, and communication skills, or to a standard no intervention control group. Measures were taken at baseline and 1 and 3 months later. Depression decreased in the intervention group but there were no changes in affective state or knowledge levels.
Conversely, Greer et al. reported on a prospective, randomized controlled trial comparing the quality of life of 156 patients with cancer (various cancer sites except cerebral tumor and nonmelanoma skin tumors) receiving psychotherapy based on the premise of CBT to patients receiving no therapy.  This brief cognitive behavioral treatment program specially designed for individual patients with cancer demonstrated that patients receiving therapy had significantly lower scores on helplessness, anxious preoccupation, depression, and fatalism and significantly higher scores on fighting spirit at the end of 8 weeks of therapy. At 4 months, this improvement continued. Moorey et al. reported on the long-term effect of this intervention program on the same cohort.  At 1-year follow-up, 19% of patients receiving therapy were still clinically anxious compared to 44% of patients in the control group. A similar trend was noted concerning depression, 11% of patients receiving therapy were depressed as compared to 18% of patients in the control group. More recently, Davidson has suggested that CBT is emerging as the most therapeutic and cost-effective approach for adult patients with cancer with psychological morbidity. 
Fawzy alluded to the quest for interventions to help individual patients with cancer to cope with this life crisis. [17,18] Also, clinicians and researchers have highlighted the need for psychosocial intervention for patients with head and neck cancer. [73,74] However, when the body of literature is examined for effective intervention programs for these patients, there is a significant dearth of research and clinical work.
More than 20 years ago, Fiegenbaum developed a practical social skills training program for patients with facial disfigurement following treatment for head and neck cancer.  Although this was with a small sample ( N = 17), under experimental or control group conditions, data relating to pretraining and posttraining measures, including 2 years after therapy, were collected. Patients in the experimental group had 10 training sessions of 2 hours duration, which covered disfigurement-related issues and also problems with speech and eating. In the experimental group, data showed significant reduction in social anxiety and improvements in self-confidence, and these improvements were maintained over the 2-year follow-up period. Despite the methodological shortcomings from the small sample size, possibly accounting for an unrepresentative biased sample and thus limiting the generalizability of the findings, these data have been pivotal in influencing other research studies for patients with disfigurements.
Robinson et al designed a similar social interaction skills workshop for a heterogeneous sample of participants with acquired and congenital disfigurements ( N = 64).  Measures of psychological well-being using standardized scales were taken prior to a workshop and at 6 weeks and 6 months follow-up. Mean scores of social avoidance and distress were significantly lower than preworkshop levels and reduced slightly further at 6 months follow-up For example, on the Social Avoidance and Distress Scale,  the preworkshop mean score was 15.4, the 6 weeks postworkshop mean score was 13.5 ( P < .05), and the 6 months postworkshop mean score was 13.2 ( P < .01). However, with the lack of a control group measure, it is difficult to ascertain whether the affective changes were resulting from the opportunity of meeting other people with disfigurement rather than the practice and application of social skills explored within the workshop.
Clarke designed a social rehabilitation program to promote coping in patients with head and neck cancer.  Eight head and neck nurse specialists, following training in managing psychosocial issues for patients with head and neck cancer, delivered this program. Within this cohort, clear gains were measured in reducing social embarrassment and, subsequently, facilitating social functioning. This consequently had a positive impact on quality of life as measured by standardized global and disease-specific tools with good psychometric properties. Despite the small sample size, comparison of mean pretest and posttest scores using the Wilcoxon test demonstrated a trend toward significance for reduced anxiety and depression as measured by the HADS. However, this study had obvious limitations, notably the small sample size ( N = 16) and the lack of a control group.
Similar methodological weakness, of a small sample size, were noted within 2 pilot studies designed to explore both the feasibility and efficiency of 2 psychosocial intervention approaches for patients with head and neck cancer at different stages of their disease trajectory.  The first study evaluated the effect of group psychological therapy, using a combination of cognitive and behavioral techniques, including relaxation, led by a psychologist for newly diagnosed patients. Quality of life, including psychiatric morbidity, was measured longitudinally for 1 year and compared with that of a control group. Thirteen patients started the group psychotherapy intervention, and 8 participants completed both the intervention and evaluation process. At 1-year follow-up, the intervention group had improved in most areas as compared to the control group ( N = 34). Significance testing was not performed because of the small sample size in this pilot study; however, the improvement noted on the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-head and neck cancer module 35 (EORTC QLQ-H&N35) of more than 10 points was evident in 10 of the 20 domains. In contrast, the control group findings revealed that only one domain improved more than l0 points. In addition, psychiatric morbidity as measured by the HADS was studied in both groups. At 1-year follow-up, the therapy group had improved markedly compared to the control group, with fewer patients considered as probable or possible cases of psychiatric morbidity.
The second pilot study investigated the effect of a 1-week psychoeducational program, for patients 1 year after diagnosis at a rehabilitation center for patients with cancer. Participants’ quality-of-life scores were measured longitudinally from the time of diagnosis until 4 weeks after the intervention. According to the HADS scale, results demonstrated that the number of probable or possible cases for anxiety and depression was almost constant throughout the study, whereas the EORTC QLQ C30  and H&N35 depicted a pattern of improvement in the majority of functions and symptoms after the intensive short-term psychoeducational program, with the most evident changes in the eating domain. When considering the timeliness of an intervention, it is important to note that participants would have preferred the intervention at an earlier stage of their disease. However, these 2 pilot studies suggest that patients with head and neck cancer can benefit from psychosocial intervention.
The only larger, longitudinal, case-control study published that evaluated the effect of a psychosocial support program on HRQoL in patients with head and neck cancer was undertaken by Petruson et al.  One hundred forty-two newly diagnosed patients with head and neck cancer in Sweden were included in this study. Fifty-two participants in the study group were given additional emotional support and information on head and neck cancer, its treatment, and side effects repeatedly throughout the first year after diagnosis. Results highlighted that both the study and control groups did not differ at diagnosis and during treatment regarding HRQoL scores as measured by the EORTC QLQ H&N35 and HADS. At 1-year follow-up, the control group had a clinically and statistically better global quality-of-life score. However, at 3-year follow-up, participants of both groups had high levels of depression and treatment-related side effects were also prevalent in both groups.
It must be noted that the aim of the support team (consisting of a ward nurse from a head and neck unit and a dietitian) was to provide information and give emotional support. It has been suggested that the lower quality-of-life scores could possibly be explained by regular follow-up, causing some patients to develop a dependency.  Moreover, the team did not have any training in diagnosing or treating depression or other related psychological problems. Therefore, a time-limited intervention, using cognitive and behavioral techniques, delivered by professionals trained in detecting affective disorders may prove more beneficial in reducing psychosocial dysfunction and enhancing quality of life for patients with head and neck cancer. Nevertheless, the findings obtained provide a basis for further research and intervention development.
The design of a psychosocial intervention program to effectively meet the magnitude of needs for patients with head and neck cancer is clearly warranted and a major challenge. Today, many global and disease-specific research instruments have already been developed and validated for use with patients diagnosed with head and neck cancer, and these provide a timely opportunity for further research. Using these standardized tools, researchers can find out more about the difficulties experienced by patients with head and neck cancer and how they relate to their quality of life. With such knowledge, an appropriate intervention program can be developed and evaluated. The intervention program could be best evaluated using a randomized controlled trial. To this end, the first author (C.J.S.), under the supervision of the coauthors, has commenced work in this area.
This article was originally presented in Cancer Nurs. 2004;27(6):p434-441.
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