The changeable nature of patients' fears regarding chemotherapy: implications for palliative care.

The side effects of chemotherapy are feared by cancer patients as they begin their treatment. In this study, we investigated patients' anticipatory fears about chemotherapy. We then re-assessed these fears three to six months after the initial interview for patients who received chemotherapy during that time. We also examined symptom distress at these intervals. Hair loss, vomiting, infection, nausea, and weight loss were ranked as the most feared side effects of cancer treatment for the group as they began treatment. Patients beginning chemotherapy endorsed frequent or intense levels of fatigue, worrying about the future, pain, and sleep problems. No differences were found in the reporting of symptoms based on gender, age, or educational level. While changes in symptom distress over the study period were unremarkable, changes in fears about chemotherapy were of interest. The most feared symptoms were re-ordered following the treatment experience. The endorsement of nausea and vomiting, alopecia, and loss of appetite decreased significantly. Thirty-five percent fewer chemotherapy patients reported vomiting as one of their most feared side effects; 45% fewer patients who received anti-emetics reported vomiting as one of their most feared side effects. Effective treatments, such as those that have been developed to treat acute chemotherapy-related emesis, can relieve the fears of patients on treatment. We conclude that patients' fears about treatment are fluid and malleable. Patients' fears of suffering related to chemotherapy treatment change in response to the provision of adequate management. We discuss the implications of these findings for palliative care education.

A pilot survey of aberrant drug-taking attitudes and behaviors in samples of cancer and AIDS patients.

The clinical assessment of drug-taking behaviors in medically ill patients with pain is complex and may be hindered by the lack of empirically derived information about such behaviors in particularly medically ill populations. To investigate issues surrounding the assessment of these behaviors, we piloted a questionnaire based on the observations of specialists in pain management and substance abuse. This preliminary questionnaire evaluated medication use, present and past drug abuse, patients' beliefs about the risk of addiction in the context of pain treatment, and aberrant drug-taking attitudes and behaviors. This instrument was piloted in a mixed group of cancer patients (N = 52) and a group of women with HIV/AIDS (N = 111). Reports of past drug use and abuse were more frequent than present reports in both groups. Current aberrant drug-related behaviors were seldom reported, but attitude items revealed that patients would consider engaging in aberrant behaviors, or would possibly excuse them in others, if pain or symptom management were inadequate. Aberrant behaviors and attitudes were endorsed more frequently by the women with HIV/AIDS than by the cancer patients. Patients greatly overestimated the risk of addiction in pain treatment. We discuss the significance of these findings and the need for cautious interpretation given the limitations of the methodology. This early experience suggests that both cancer and HIV/AIDS patients appear to respond in a forthcoming fashion to drug-taking behavior questions and describe attitudes and behaviors that may be highly relevant to the diagnosis and understanding management of substance use among patients with medical illness.

Nurses' recognition of depression in their patients with cancer.

PURPOSE/OBJECTIVES: To determine the degree to which nurses recognize levels of depressive symptoms in their patients with cancer and to describe patient characteristics that influence the accuracy of nurses' perceptions of depressive symptoms. DESIGN: Descriptive, prospective correlational design. SETTING: 25 community-based ambulatory oncology clinics affiliated with Community Cancer Care of Indiana. SAMPLE: 40 clinic nurses rated the depression levels of 1,109 patients. METHODS: Patients completed the Zung Self-Rating Depression Scale (ZSDS) prior to their medical oncology clinic appointment. Nurses rated their patients' level of depressive symptoms, anxiety, and pain on a 0-10 numerical scale along with determining a performance status score. MAIN RESEARCH VARIABLES: Patient-rated depression and the nurse depression rating. FINDINGS: The most frequent agreement between nurses and patients was observed when patients reported little or no depressive symptoms. They were only concordant 29% and 14% of the time in the mild and moderate/severe ranges, respectively. Nurses' ratings were influenced most by patients' endorsement of frequent and obvious mood symptoms and nurse ratings of patients' anxiety and pain. CONCLUSIONS: A marked tendency existed to underestimate the level of depressive symptoms in patients who were more severely depressed. Nurses' ratings were most influenced by symptoms such as crying, depressed mood, and medical factors that are useful but perhaps not the most reliable indicators of depression in this population. IMPLICATIONS FOR NURSING PRACTICE: Nurse assessment of depression might be improved if greater emphasis were placed on the more diagnostically reliable symptoms of depression and if screening tools for depression were incorporated into nursing practice.

Patient-related barriers to pain management in ambulatory AIDS patients.

A number of studies have demonstrated that pain is dramatically undertreated among patients with AIDS and that opioids in particular are rarely prescribed. To date, however, there has been no systematic attempt to examine patient-related barriers to the management of pain in AIDS. This study examines potential patient-related barriers to pain management in patients with AIDS using the Barriers Questionnaire (Ward et al., Pain, 52 (1993) 319-324), and assesses gender, racial, and other demographic differences in the endorsement of these barriers. We surveyed 199 ambulatory patients with AIDS, recruited from numerous sites in New York City, as part of an ongoing study of pain and quality of life in ambulatory AIDS patients. In addition to obtaining demographic and medical data, we administered a number of self-report questionnaires including the Brief Pain Inventory (BPI), the Brief Symptom Index (BSI), the Beck Depression Inventory (BDI), and the Memorial Symptom Assessment Scale (MSAS). Barriers to pain management were assessed using a modified version of the Barriers Questionnaire (BQ), including the original 27 questions from this self-report instrument along with an additional 12 items developed for an AIDS population. Results indicated that the most frequently endorsed BQ items were those concerning the addiction potential of pain medications and physical discomfort associated with opioid administration (e.g. injections) or side effects (e.g. nausea, constipation). There were no associations between age, gender, or HIV transmission risk factor and total scores on the BQ; however, Caucasian patients endorsed significantly fewer BQ items than did non-Caucasian patients and years of education was negatively correlated with BQ scores. Scores on the BQ were also significantly correlated with number of physical symptoms (MSAS) and scores on several self-report measures of psychological distress (the BSI Global Distress Index, BDI total scores). Patient-related barriers (i.e. BQ total scores) were significantly associated with undertreatment of pain (as measured by the Pain Management Index), and added significantly to the prediction of undertreatment in a logistic regression analysis, even after controlling for the impact of gender, education and IDU transmission risk factor. These data suggest that patient-related barriers to pain management may add to the already considerable likelihood of undertreatment of AIDS-related pain.

Fatigue in ambulatory AIDS patients.

Although preliminary reports indicate that fatigue is a common symptom of human immunodeficiency virus (HIV) disease, little empirical research has focused on its prevalence or characteristics among patients with acquired immunodeficiency syndrome (AIDS). We assessed the frequency of fatigue and its medical and psychological correlates, in a cross-sectional survey of ambulatory AIDS patients. Ambulatory patients with AIDS who participated in a study of quality life (N = 427) were classified into fatigue/no fatigue groups based on their responses to fatigue items on the Memorial Symptom Assessment Scale (MSAS) and the AIDS physical symptom checklist. Self-report inventories were also administered to assess psychological distress, depressive symptoms, and overall quality of life. Medical information was elicited through clinical interview and review of medical chart. Fifty-four percent of the patients endorsed both of the fatigue items from the MSAS and the AIDS physical symptom checklists, and were classified as having fatigue. Women were significantly more likely to report fatigue than men (chi square = 5.28, df = 1, P < 0.03), and patients reporting homosexual contact as their transmission risk factor were significantly less likely to report fatigue than were patients reporting injection drug use or heterosexual contact (chi square = 5.13, df = 2, P < 0.03). The presence of fatigue was significantly associated with the number of current AIDS-related physical symptoms [t(425) = 8.00, P < 0.0001], current treatment for HIV-related medical disorders (chi square = 12.51, df = 1, P < 0.0001), anemia [t(174) = -2.35, P < 0.02], and pain (chi square = 36.36, df = 1 P < 0.0001). Patients with fatigue also had significantly poorer physical functioning ability [Karnofsky: t(422) = -6.27, P < 0.0001], as well as greater degree of overall psychological distress and lower quality of life [F(5,418) = 23.79, P < 0.0001], as measured by the Brief Symptom Inventory, Beck Depression Inventory, Beck Hopelessness Scale, Functional Living Inventory for Cancer (modified for AIDS), and the MSAS Psychological Distress Subscale. Fatigue is a common symptom in ambulatory AIDS patients and is associated with significant physical and psychological morbidity.

Oncologists' recognition of depression in their patients with cancer.

PURPOSE: This study was performed as part of a large depression screening project in cancer patients to determine the degree of physician recognition of levels of depressive symptoms in cancer patients and to describe patient characteristics that influence the accuracy of physician perception of depressive symptoms. METHODS: Twenty-five ambulatory oncology clinics affiliated with Community Cancer Care, Inc of Indiana enrolled and surveyed 1,109 subjects treated by 12 oncologists. Subjects completed the Zung Self-Rating Depression Scale (ZSDS) and physicians were asked to rate their patients' level of depressive symptoms, anxiety, and pain using numerical rating scales. Subjects' sex, age, primary tumor type, medications, primary caregiver, and disease stage at diagnosis were also recorded. RESULTS: Physician ratings of depression were significantly associated with their patients' levels of endorsement of depressive symptoms on the ZSDS. However, agreement between physicians and patients is most frequently clustered when patients report little or no depressive symptoms. While physician ratings are concordant with patient endorsement of no significant depressive symptomatology 79% of the time, they are only concordant 33% and 13% of the time in the mild-to-moderate/severe ranges, respectively. Physician ratings were most influenced by patient endorsement of frequent and obvious mood symptoms, ie, sadness, crying, and irritability. Physician ratings also appeared to be influenced by medical correlates of patients' level of depressive symptoms (functional status, stage of disease, and site of tumor). Additionally, patients whose depression was inaccurately classified reported significantly higher levels of pain and had higher levels of disability. Physicians' ratings of depression were most highly correlated with physicians' ratings of patients' anxiety and pain. CONCLUSION: Physicians' perceptions of depressive symptoms in their patients are correlated with patient's ratings, but there is a marked tendency to underestimate the level of depressive symptoms in patients who are more depressed. They are most influenced by symptoms such as crying and depressed mood, and medical factors that are useful, but not the most reliable, indicators of depression in this population. Physicians' ratings of their patients' distress symptoms seem to be global in nature--they are highly correlated with anxiety, pain, and global dysfunction. Physician assessment might be improved if they were instructed to assess and probe for the more reliable cognitive symptoms such as anhedonia, guilt, suicidal thinking, and hopelessness. Screening instruments and the use of brief follow-up interviews would help to identify patients who are depressed.

Psychosocial aspects of upper extremity lymphedema in women treated for breast carcinoma.

BACKGROUND: Lymphedema of the upper extremity following breast carcinoma is highly distressing and disabling. METHODS: A review is presented of the literature on psychosocial aspects of lymphedema. RESULTS: Studies have shown that women who develop lymphedema exhibit higher levels of psychological, social, sexual, and functional morbidity than women with breast carcinoma who do not develop this complication. Women who have poor social support, pain, lymphedema in the dominant hand, and/or a passive and avoidant coping style report the highest levels of disability. CONCLUSIONS: Due to the morbidity of lymphedema once it develops, prevention and information given early are extremely important. However, the recommendations made to women sometimes involve considerable changes in lifestyle but are not based on solid, prospective evidence. In addition, how to best impart and time information about lymphedema pre- and postoperatively require investigation. In this paper, the authors discuss the psychological and functional impact of lymphedema and strategies for intervention and research to help women prevent the condition or enhance coping with it once it develops.

Use of the Zung Self-Rating Depression Scale in cancer patients: feasibility as a screening tool.

The feasibility, utility and reliability of the Zung Self-Rating Depression Scale (ZSDS) was examined in a large sample of ambulatory cancer patients. This tool and a brief 11-item version of the ZSDS (excluding nine items concerning somatic symptoms), which was developed during the course of the survey, were used to estimate the prevalence of self-reported depressive symptoms. Patient characteristics that may be associated with an increased risk of clinically significant depressive symptoms were also explored. Twenty-five ambulatory oncology clinics affiliated with Community Cancer Care, Inc. enrolled and surveyed 1109 subjects. The alpha coefficients for the ZSDS (0.84) and the Brief ZSDS (0.84) indicated high levels of internal consistency. The overall prevalence of clinically significant depressive symptoms as defined by the ZSDS was 35.9% and by the Brief ZSDS was 31.1%. The ZSDS and the Brief ZSDS were highly correlated (r = 0.92). The medical and demographic variables most associated with clinically significant depressive symptoms were more advanced stage of disease at time of diagnosis, lung cancer as primary tumor type, higher ECOG rating (greater degree of physical disability), and having been prescribed antidepressant medications. The high prevalence of depressive symptoms observed in this study is consistent with rates found in other studies of self-report depression instruments in cancer patients. The initial indicators of internal consistency and validity suggest that the Zung SDS or the brief version may be useful screening tools to identify depressive symptoms in oncology patients.

Pain in ambulatory AIDS patients. I: Pain characteristics and medical correlates.

The characteristics and impact of pain were evaluated in a prospective cross-sectional survey of 438 ambulatory AIDS patients recruited from health care facilities in New York City. More than 60% of the patients reported 'frequent or persistent pain' during the 2 wks preceding the study. Patients with pain reported an average of 2.5 different pains. On the 0-10 numerical scale of the Brief Pain Inventory (BPI), mean pain intensity 'on average' was 5.4 (SD = 2.2; range = 0-10), and mean pain 'at its worst' was 7.4 (SD = 2.0; range = 1-10). The pain-related functional interference index (sum of the seven item BPI subscale) was 42.6 (SD = 17.2; range = 0.70). Demographic variables were not associated with the presence of pain, but the number of current HIV-related symptoms, treatment for HIV-related infections, and the absence of antiretroviral medications were significantly associated with the presence of pain. Female gender, non-Caucasian race, and number of HIV-related physical symptoms were significantly associated with pain intensity. Presence of pain and increasing pain intensity were significantly associated with greater impairment in functional ability (Karnofsky Performance Status, BPI functional interference index) and physical symptom distress (Memorial Symptom Assessment Scale). Results demonstrate high levels of pain and pain-related functional impairment among patients with AIDS. The presence and intensity of pain are associated with more advanced HIV disease and pain intensity is also associated with demographic factors (gender, race).

Pain in ambulatory AIDS patients. II: Impact of pain on psychological functioning and quality of life.

The relationships among pain, psychological distress and other quality of life concerns were examined through a prospective cross-sectional survey of 438 ambulatory AIDS patients recruited from health care facilities in New York City. In this sample, 274 (62.6%) patients reported frequent or persistent pain during the prior 2 wks. Patients with and without pain completed a questionnaire packet that included measures of psychological symptom distress (Brief Symptom Inventory and the Psychological Distress Subscale of the Memorial Symptom Assessment Scale), depression (Beck Depression Inventory and Beck Hopelessness Scale), social support (Social Support Questionnaire), and overall quality of life (Functional Living Index-Cancer, modified for AIDS). Multivariate analyses (MANOVA, multiple regression) revealed significant associations between the presence and intensity of pain and scores on the measures of psychological distress, depression, hopelessness, and quality of life (P < 0.0001 for most analyses). Perceived adequacy of social support was also significantly associated with lower levels of psychological distress and depression, and better quality of life. These results demonstrate the significant relationships between pain, psychological well-being, and quality of life, and affirm the need to provide adequate treatment of pain in patients with AIDS.

Pharmacologic pain management in HIV/AIDS.

AIDS: The increased life expectancy of AIDS patients requires that effective pain management techniques be incorporated into their care for them to maintain a reasonable quality of life. There are many causes of pain in AIDS patients, including opportunistic infections, adverse effects of therapy, and other pain syndromes unrelated to the disease. Undermedication for pain in HIV/AIDS is documented in the literature, indicating underuse of opioid analgesics. The first step in remedying this problem is to develop a comprehensive measure of pain symptoms, then a multifaceted program utilizing a combination of pharmacologic, psychotherapeutic, cognitive-behavioral, anesthetic, neurosurgical, and rehabilitative approaches. Tabular data are provided to assist physicians in selecting the most appropriate analgesics, as are data on medications used to alleviate opioid side effects. Physical interventions, such as bed rest, massage, ultrasound, and transcutaneous electrical nerve stimulation, are briefly discussed.^ieng

The undertreatment of pain in ambulatory AIDS patients.

Pain is highly prevalent in individuals with HIV disease, yet is often overlooked as a symptom requiring clinical intervention. We evaluated the adequacy of analgesic management for pain and identified predictors of pain undertreatment in a sample of 366 ambulatory AIDS patients using a prospective cross-sectional survey design. Two hundred and twenty-six of the 366 ambulatory AIDS patients surveyed reported "persistent or frequent" pain over the 2 week period prior to the survey. Adequacy of analgesic therapy was assessed using the Pain Management Index (PMI - a measure derived from the Brief Pain Inventory) and the type and frequency of analgesic medications prescribed for pain. Results indicated that nearly 85% of patients were classified as receiving inadequate analgesic therapy based on the PMI. Less that 8% of the 110 patients who reported "severe" pain were prescribed a "strong" opioid (e.g., morphine), as suggested by published guidelines. Adjuvant analgesic drugs (e.g., antidepressant medications) were prescribed in only 10% of the patients. Women, less educated patients, and patients who reported injection drug use as their HIV transmission risk factor were most likely to have received inadequate analgesic therapy. These results demonstrate the alarming degree of undertreatment of pain in ambulatory patients with AIDS, and indicates the need to improve the management of AIDS-related pain in this underserved population. Future research should elucidate the factors that impede adequate pain management in order to overcome obstacles to adequate treatment.