Longitudinal Relationships between Patient and Caregiver Illness Perceptions

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Head and Neck Cancer Background

Head and neck cancer is a physically and emotionally demanding disease, associated with challenging treatment, and long-term disturbances in function and appearance. In this chapter, a background to HNC is provided to highlight the distressing nature of symptoms and treatment, as well as the negative impact of HNC on patient and caregiver quality of life and psychological wellbeing. The high rates of depression and anxiety among affected individuals are identified, as well as the factors that may contribute to these. In particular, attention is paid to the role of illness perceptions and coping in response to diagnosis and treatment, with gaps in the literature emphasised to demonstrate the importance of further research in this area.

Patients

Prevalence and Incidence

Head and neck cancer is the sixth most prevalent cancer in the world, accounting for approximately 3% of all malignancies in the United States and 4% of those in Europe (Gatta et al., 2015; Siegel, Miller, & Jemal, 2015). Globally, nearly 600,000 people are diagnosed with HNC each year (Leemans, Braakhuis, & Brakenhoff, 2011). Cancers of the oral cavity are most common, accounting for 40% of new cases (Ferlay et al., 2008). By comparison, new diagnoses of cancers of the larynx, pharynx, and nasopharynx are less frequent (Simard, Torre, & Jemal, 2014). In New Zealand, more than 500 cases of HNC are diagnosed every year (Ministry of Health, MOH, 2013). For example, there were 750 new HNC registrations in 2013; 690 of registered individuals were New Zealand European and 60 identified as Māori. Additionally, an estimated 200 cases of metastatic squamous cell skin cancer in the head and neck region are registered annually. The incidence of HNC, particularly oral cancer, has been increasing over time. More men are diagnosed with HNC than women, with a male-female ratio of approximately 3:1 (Simard et al., 2014). The disease also occurs more frequently in developed countries than developing countries (Ferlay et al., 2008). Most diagnoses of HNC are made in older adults, particularly those aged over 50 years (Vander Walde, Fleming, Weiss, & Chera, 2013). Nevertheless, the number of young adults with oral cavity and oropharyngeal cancers is rising due to increased exposure to human papillomavirus (HPV) (Chaturvedi et al., 2013).

Cancer Sites and Symptoms

Symptoms of HNC vary according to the site at which the cancer occurs. Cancers of the oral cavity are those affecting the lips, gums, buccal mucosa, floor of the mouth, anterior of the tongue, and hard palate. Associated symptoms include a sore that does not heal, abnormal bleeding or pain in the mouth, swelling of the jaw, and discolouration of the gums, tongue, or lining of the oral cavity (Chong, 2005). If the cancer affects the salivary glands, symptoms may include swelling, numbness, and persistent pain under the chin or around the mandible (National Cancer Institute, NCI, 2013). Conversely, symptoms associated with cancers of the pharynx and larynx include difficulty breathing or speaking, pain when swallowing, frequent headaches, and pain or ringing in the ears (Sasaki & Jassin, 2001). Cancers of the paranasal sinuses and nasal cavity can cause long-term blockage of the sinuses, epistaxis (bleeding from the nose), pain in the sinus areas, tooth pain, and problems with vision (Dirix, 2007). Other symptoms associated with cancers in the head and neck region include unexplained weight loss and fatigue, which may be partially explained by problems with eating (as a consequence of difficulty chewing, swallowing, or moving the jaw or tongue).

Treatment

Treatment of HNC is dependent on the type, location, and stage of the cancer, and may include any combination of surgery, radiotherapy, or chemotherapy. For patients who undergo surgical treatment, cancerous tissue is removed directly from the affected area of the head or neck, as well as other regions to which the cancer may have spread (Argiris et al., 2008). In contrast, radiotherapy involves the application of carefully directed and controlled high energy x-rays (NCI, 2016). With regards to chemotherapy treatment, medications that destroy cancer cells are delivered to the patient orally or intravenously. Surgery and radiotherapy are the only curative treatments for HNC. However, when the disease is of an advanced stage (III-IV), or there is involvement of lymph nodes in the neck, chemotherapy is combined with radiotherapy in an effort to improve patient survival and decrease cancer-related symptoms.

Surgery

Surgical resection of HNC can take many hours and typically requires a hospital stay ranging from several days to several weeks. It is often difficult for patients to eat or drink in the days following their surgery due to swelling in the mouth and throat area. In such cases, either a gastrostomy tube (passed through the abdomen into the stomach) or a nasogastric tube (passed through the nose, down the oesophagus, and into the stomach) is inserted (Rustom, Jebreel, Tayyab, England, & Stafford, 2006). Swelling can also restrict the airway making it hard for patients to breathe. This creates a need for a tracheostomy or stoma, a small opening in the windpipe, until the swelling subsides. Speech can be permanently altered following HNC surgery. This most commonly occurs among patients who have had a laryngectomy, which involves partial or complete removal of the larynx, and requires a permanent stoma in the neck. Other side effects of HNC surgery include lasting pain and discomfort, altered sensation (numbness), difficulty opening the mouth, and severe facial disfigurement (Marur & Forastiere, 2008). Reconstructive surgery is frequently necessary, whereby tissue or bone is taken from other areas of the body to replace that removed from the head and neck. Prosthetics may also be offered to patients for whom bones (such as the cheekbone or palate) have been removed from the face (Tang, Rieger, & Wolfaardt, 2008).

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Radiotherapy

Radiotherapy typically takes place once or twice a day, five days a week, for a period of 5-7 weeks. To ensure that patients conform to a specific position during their treatment sessions, they must wear a plastic mesh mask over the face that is attached to the table on which they lie. Although this allows for the delivery of targeted treatment, it is not uncommon for patients to experience claustrophobia while restricted by the mask (Kim et al., 2004). Furthermore, radiotherapy causes inflammation of the mucous membranes lining the mouth and throat resulting in ulceration, discomfort, and pain when swallowing (Trotti et al., 2003). These side effects intensify with every radiotherapy session. For some patients the resultant pain severely limits their ability to eat and drink causing significant nutritional deficiencies and drastic weight loss. In such cases, patients must have a gastrostomy tube temporarily inserted into the stomach to ensure that they maintain adequate nutrition. Other side effects of radiotherapy include dryness of the mouth, thickened saliva, redness and irritation of the skin, loss of taste and smell, and tooth decay (NCI, 2016).

Chemotherapy

Chemotherapy is administered concurrently with radiotherapy and, consequently, treatment toxicity and associated side effects are exacerbated (Machtay et al., 2008). This approach can result in nausea and vomiting, fatigue, hair loss, diarrhoea, reduced appetite, mouth sores, and a heightened risk of infection in the short-term (Trotti et al., 2003). In the long-term, side effects may include inflammation and ulceration of mucous membranes lining the digestive tract, difficulty swallowing, and dependence on a gastrostomy tube (Mason et al., 2016).

Multidisciplinary Team

Due to the complexity of treatment for HNC, input from a number of different specialties is required to maximise patient physical and psychological outcomes (Argiris et al., 2008). In addition to the care provided by surgeons, oncologists, radiologists, pathologists, and nurses, patients also receive support from dieticians, speech and language therapists, dental specialists, and social workers. These professionals comprise a multidisciplinary team whose function is to develop a treatment plan that will optimise survival while preserving patient quality of life. The collaboration of these specialties has been found to promote adherence to best practice (Kelly, Jackson, Hickey, Szallasi, & Bond, 2013), and improve survival for patients with advanced HNC (Friedland et al., 2011). However, most multidisciplinary teams caring for patients with HNC do not include a psychologist, despite symptoms and treatment of the disease having significant implications for patient self-image and psychological wellbeing (Hodges & Humphris, 2009).

Survival

For most patients, a diagnosis of HNC presents a significant threat to mortality. The overall 5-year survival rate is between 50% and 60%, which is low relative to other types of cancer (Ries et al., 2006). Furthermore, limited improvement in this survival rate has been observed over time (Jemal, Thomas, Murray, & Thun, 2002). Approximately 350,000 deaths are attributable to HNC every year worldwide (Argiris et al., 2008). In New Zealand, Māori patients have lower survival than non-Māori patients. Between 1991 and 2004, Māori had 37% greater excess mortality compared to non-Māori (MOH, 2012). Socioeconomic deprivation was associated with patient survival across this time period, with HNC patients in the lowest income quintile experiencing 28% greater excess mortality than patients in the highest income quintile. Survival following an HNC diagnosis is dependent on stage of disease at presentation, with more advanced cancer associated with worse survival (Ringash, 2014). Approximately 30% of patients present with an early stage cancer (stage I-II), while 70% have a late (or advanced) cancer (stage IIIIV). For 10% of patients who present with advanced cancer, the cancer has metastasised to distant areas of the body and is incurable. Late presentations are common among patients with HNC, largely because the disease is difficult to detect in primary care settings (Alho, Teppo, Mantyselka, & Kantola, 2006). Survival is also significantly reduced among patients with HNC who develop a recurrence. Cancer recurrence occurs in at least 50% of patients initially diagnosed with late stage HNC (Argiris et al., 2008), and is untreatable in most cases, resulting in a median survival of 6 months (Vermorken & Specenier, 2010). Furthermore, patients with HNC are susceptible to the development of second primary cancers outside the head and neck, and comorbid illnesses (particularly cardiovascular disease), which place these individuals at increased risk of death relative to the general population (Ringash, 2014).

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Head and Neck Cancer Background

Head and neck cancer is a physically and emotionally demanding disease, associated with challenging treatment, and long-term disturbances in function and appearance. In this chapter, a background to HNC is provided to highlight the distressing nature of symptoms and treatment, as well as the negative impact of HNC on patient and caregiver quality of life and psychological wellbeing. The high rates of depression and anxiety among affected individuals are identified, as well as the factors that may contribute to these. In particular, attention is paid to the role of illness perceptions and coping in response to diagnosis and treatment, with gaps in the literature emphasised to demonstrate the importance of further research in this area.

Patients

Prevalence and Incidence

Head and neck cancer is the sixth most prevalent cancer in the world, accounting for approximately 3% of all malignancies in the United States and 4% of those in Europe (Gatta et al., 2015; Siegel, Miller, & Jemal, 2015). Globally, nearly 600,000 people are diagnosed with HNC each year (Leemans, Braakhuis, & Brakenhoff, 2011). Cancers of the oral cavity are most common, accounting for 40% of new cases (Ferlay et al., 2008). By comparison, new diagnoses of cancers of the larynx, pharynx, and nasopharynx are less frequent (Simard, Torre, & Jemal, 2014). In New Zealand, more than 500 cases of HNC are diagnosed every year (Ministry of Health, MOH, 2013). For example, there were 750 new HNC registrations in 2013; 690 of registered individuals were New Zealand European and 60 identified as Māori. Additionally, an estimated 200 cases of metastatic squamous cell skin cancer in the head and neck region are registered annually. The incidence of HNC, particularly oral cancer, has been increasing over time. More men are diagnosed with HNC than women, with a male-female ratio of approximately 3:1 (Simard et al., 2014). The disease also occurs more frequently in developed countries than developing countries (Ferlay et al., 2008). Most diagnoses of HNC are made in older adults, particularly those aged over 50 years (Vander Walde, Fleming, Weiss, & Chera, 2013). Nevertheless, the number of young adults with oral cavity and oropharyngeal cancers is rising due to increased exposure to human papillomavirus (HPV) (Chaturvedi et al., 2013).

1. Overview
2. Head and Neck Cancer Background
2.1 Patients
2.2 Caregivers
2.3 Predictors of Psychological Distress
2.4 Summary
3. Cross-sectional Relationships between Patient and Caregiver Illness Perceptions
3.1 Preface
3.2 Abstract
3.3 Methods
3.4 Discussion
4. Longitudinal Relationships between Patient and Caregiver Illness Perceptions
4.1 Preface
4.2 Citation
4.3 Results
4.4 Discussion
5. Patient Coping Strategies at Diagnosis and Subsequent Psychological Adjustment
5.1 Preface
5.2 Methods
5.3 Results
5.4 Discussion
6. Illness Perceptions, Coping, and Post-Traumatic Stress among Caregivers
6.1 Preface
6.2 Background
6.3 Methods
6.4 Results
6.5 Discussion
7. Psychological Support Needs of Patients and their Caregivers
7.1 Preface
7.2 Background
7.3 Methods
7.4 Results
8. Psychological InterventionsPsychological Interventions
8.1 Psychological Interventions and Head and Neck Cancer
8.2 Psychological Interventions and Caregivers
8.3 Self-Regulatory Interventions
8.4 Summary
9. A Self-Regulatory Intervention for Patients with Head and Neck Cancer
9.1 Preface
9.2 Citation
9.3 Discussion
10. Discussion
10.1 Overview
10.2 Summary of Key Findings
10.3 Integration with Broader Literature
10.4 Clinical Implications
10.5 Limitations and Future Directions
10.6 Conclusion
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