Cherith J. Semple, BSc(Hons) Nursing; Kate Sullivan, DPhil; Lynn Dunwoody, DPhil; W. George Kernohan, PhD
Abstract
A diagnosis of head and neck cancer, like any cancer diagnosis, is often accompanied by much fear and uncertainty. In addition, patients with head and neck cancer face difficulties in eating, chewing, drinking, breathing, speaking, as well as changes in appearance. Simultaneously, the burden of head and neck cancer is often manifested in psychosocial dysfunction, which can have a negative impact on quality of life. Although a phenomenon well recognized, little is known about many factors that influence or impact psychosocial dysfunction in individuals with head and neck cancer. Even less is known about the effective management of psychosocial dysfunction. To date, there is evidence to suggest that psychosocial interventions generally provide an overall positive effect. Moreover, some intervention studies, such as education alone, have failed to achieve the desired results. In addition, some studies suggest an advantage of cognitive- behavioral therapy over other forms of psychological treatment. With the growing impetus to investigate factors associated with psychosocial dysfunction, and considerable advancement in the development and validation of many global and disease-specific measures, there is an opportunity for further research to develop an appropriate clinical intervention program for such patients.
Introduction
Many individuals have described a diagnosis of cancer as devastating, producing a more alarming response than that of any other disease process.
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. [3] 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. [4]
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. [9] 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. [12] 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). [13] 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. [15] 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. [16] 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. [17] 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. [18]
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. [19] Researchers’ use of CBT has demonstrated substantial benefits in cancer care, [20-22] and in heterogeneous samples of patients with facial disfigurement. [23] These studies determined that psychological therapy based on the principles of CBT significantly reduced psychological morbidity, [20-23] providing justification for further investigatio