Abstract
The purposes of this study were to explore symptom distress, catastrophic thinking (catastrophizing) and hope, and factors predicting hope in Taiwanese nasopharyngeal carcinoma (NPC) patients within 3 years of receiving radiation therapy (RT). Instruments used were the modified Symptom Distress Scale, disease catastrophizing scale (modified from Coping Strategies Questionnaire), and Herth's Hope Index. Adult NPC patients (N = 115; 33 undergoing RT, 44 who completed RT within 1 year, and 38 who completed RT more than 1 year but less than 3 years) were recruited from an outpatient RT center in Northern Taiwan. Although participants' overall symptom distress was mild to moderate, they scored moderate level for several distressful symptoms: dry mouth, fatigue, hearing difficulty, loss of appetite, insomnia, and pain. Patients undergoing RT had greater symptom distress than subjects in the other 2 groups. Regression analysis revealed that catastrophizing was the only predictor of hope. Patients who engaged in catastrophizing reported much lower levels of hope. Particular care and attention are recommended to help NPC patients deal with the top distressful symptoms listed. Nursing interventions to reduce catastrophic thinking and enhance hope are discussed.
Nasopharyngeal carcinoma (NPC) is a cancer endemic to certain ethnic groups and geographic areas, particularly Chinese in Southern China and Eskimos in Alaska, Greenland, and southeast Asia. 1 In Taiwan, NPC is one of the most prevalent cancers, with approximately 8 out of 100,000 people, mostly men, diagnosed every year. 2 NPC diagnosed at an early stage has a relatively better prognosis than most cancers. However, a diagnosis of NPC may still threaten patients because cancer has been the leading cause of death in Taiwan for the past 20 years, 2 and many Taiwanese view such a diagnosis as a metaphor for death. This threat of cancer may best explain the unwillingness to disclose a cancer diagnosis to Taiwanese patients. 3,4 A cancer diagnosis may thus have an impact on patients' hope, 3,5 even among NPC patients.
For patients with NPC, radiation therapy (RT) has been recognized as the most effective treatment, 1 and several valuable studies have documented acute symptoms related to RT. 6-8 However, these studies did not examine long-term symptoms or symptom distress related to RT, levels of hope, or the relationship between hope and symptoms in NPC patients. Furthermore, a recent study found that cognition plays an important role in the hope levels of Taiwanese cancer patients. 9 Negative thoughts about cancer may therefore influence patients' hope. Clinical observation in Taiwan suggests that some cancer patients have overwhelmingly negative thoughts about cancer, such as catastrophic thinking (catastrophizing).
Catastrophizing, a negative cognition characterized by "pessimism, magnification, rumination, and helplessness," 10,11 leads a person "to assume the worst possible outcome will happen." 10(p2494) For this study, catastrophizing about disease is defined as an individual's tendency to focus on and exaggerate the disease outcome and to negatively evaluate one's ability to deal with the disease. To the authors' knowledge, no research has simultaneously examined these variables in NPC patients in Taiwan. Therefore, this study's aim is to simultaneously examine the status of symptom distress, catastrophic thinking, and hope level and factors that predict hope in NPC patients. Knowledge gained from this study could help nurses and health care providers further understand and enhance NPC patients' levels of hope.
The stress-appraisal-coping model 12 was used as the theoretical framework for the current study. In this study, cancer is viewed as a source of stress for the cancer patient. The effort of dealing with cancer can be viewed as a coping process. Higher levels of hope represent better coping with and adjustment to stress. 13 A central tenet of this model is that coping is influenced by cognitive appraisal, by which a person evaluates every situation and gives it meaning. A positive cognitive appraisal of stress (eg, viewing stress as challenge) may lead to a more positive adjustment, while a negative appraisal (eg, viewing stress as threatening or having negative thoughts) may lead to maladjustment and lower levels of hope.
Hope, "a dynamic inner power that enables transcendence of the present situation and fosters a positive new awareness of being," 14(p538) plays a central role in a person's ability to deal with illness and suffering. 15 Hope has been recognized as a crucial element in the care of cancer patients, 16 to their quality of life, 17 and to better psychological adjustment. 13 Although some studies have explored the factors associated with hope, 5,9,14,18-22 the findings were not consistent. For example, hope was negatively associated with patients' diagnosis of AIDS, 5 time since diagnosis, 21 pain interference with daily life, 22 cognitive dimension of pain, 9 duration of illness, income, fatigue level, and marital status. 18 However, no association was found between hope and age, gender, education, family income, race, activity level, fatigue level, 5 and pain intensity. 9
Symptom distress, known as the distress caused by disease or treatment symptoms, 23 may vary with treatment and disease. However, no studies to date have examined symptom distress perceived by NPC patients. Only a few studies have directly examined the symptoms of Taiwanese NPC patients undergoing RT. 6-8 These symptoms commonly include dry mouth, oral ulcers, pain, fatigue and weakness, anorexia, taste change, nasal obstruction, difficulty in swallowing, difficulty in opening mouth, and weight loss. These studies examined acute symptoms in NPC patients during RT, but did not report how long the acute symptoms lasted or whether it changed in the months or years after completing RT. In addition, neither study examined other variables related to disease experiences.
Clinical observation indicates that catastrophizing about disease (cancer) is commonly found among cancer patients in Taiwan. Surprisingly, however, it has been absent in the cancer research literature, despite the fact that catastrophizing has been viewed as one of the most critical factors influencing patients' pain experiences. 11,24 Due to a lack of research directly examining the role of catastrophic thinking in cancer patients' experiences, we reviewed the research literature on pain-related catastrophizing. Research has shown that the more patients catastrophize, the greater their levels of pain, pain behavior, 11 perception of disability or depression, 25-28 and frequency and duration of hospital stays. 29 Since pain and cancer share the commonality of being a stress to patients, we assume that the findings from pain catastrophizing can be applied to disease-related catastrophizing. The pain catastrophizing findings suggest that disease catastrophizing thoughts play a crucial role in influencing patients' cancer experiences.
Lack of sufficient information regarding these important issues suggests the need for further examination of NPC patients and their experiences with RT. In addition to symptom distress in general, pain and fatigue are the 2 most prevalent distressful symptoms experienced by cancer patients with radiation therapy. 30-33 We therefore measured pain and fatigue intensity, as well as pain duration (how long patients have pain). We also measured performance status of activities of daily living, current cancer treatment (radiation therapy only [RT], chemotherapy only [CT], RT + CT, and none), cancer stage, gender, educational level, religious status, marital status, and working status, as well as their relationship to hope. The specific aims of the study were
1. To examine and compare the levels of symptom distress, catastrophizing, and hope across NPC patients grouped as (a) undergoing radiotherapy (RT), (b) completing RT within 1 year, and (c) completing RT in 1-3 years.
2. To examine the relationships among gender, educational level, religious status, marital status, occupational status, type of current cancer treatment, cancer stage, pain intensity on average in the current week, pain duration, fatigue intensity on average, performance status, symptom distress, catastrophizing, and hope.
3. To determine the predictor(s) of hope by using the variables in aim 2 that were significantly correlated to hope.