Gwen Wyatt

Burden and depression among caregivers of patients with cancer at the end of life.

PURPOSE/OBJECTIVES To examine the patient and family caregiver variables that predicted caregiver burden and depression for family caregivers of patients with cancer at the end of life. DESIGN A prospective, longitudinal study was implemented with an inception cohort of patients and their family caregivers who were followed after the diagnosis and treatment of cancer. SETTING Community oncology sites in the midwestern United States. SAMPLE 152 family caregivers of patients with cancer who died during the course of the study. METHODS Telephone interviews were conducted with patients at 6-8, 12-16, 24-30, and 52 weeks following diagnoses. In addition, patient medical records and state death certificates were reviewed. MAIN RESEARCH VARIABLES Effect of caregiver age, gender, education, relationship to the patient, employment status, reports of patient symptoms, patient cancer type, stage of cancer, time from the patients diagnosis to death, caregiver burden, and depression. FINDINGS Caregivers aged 45-54 reported the highest levels of depressive symptoms, and caregivers aged 35-44 reported the strongest sense of abandonment. Caregivers who were the adult children of patients with cancer and those who were employed reported high levels of depressive symptoms. Feeling abandoned (a portion of caregiver burden) was more prevalent in female, nonspouse, and adult children caregivers, and adult children caregivers of patients with early-stage cancer and patients with multiple symptoms reported a high perception of disruption in their schedule because of providing care. Caregivers whose patients died early following diagnosis reported the highest depressive symptoms, burden, and impact on schedule. CONCLUSIONS Caregivers reported levels of depression at thresholds for screening of clinical depression. The number of patient symptoms was related to levels of caregiver depressive symptoms. An association also was found between depression and employment status. Caregiver distress was not dependent on demands of care. IMPLICATIONS FOR NURSING Very little research exists that prospectively analyzes family caregiver experiences of burden and depression when providing end-of-life cancer care for a family member. Interventions aimed at decreasing caregiver depressive symptoms should be targeted to caregivers who are middle-aged, adult children, and employed. Interventions aimed at decreasing the burden associated with feeling abandoned and having schedules disrupted while providing care should be targeted to caregivers who are female, nonspouse, and adult children, and caregivers of patients with early-stage cancer and multiple symptoms.

Psychological and sexual well-being, philosophical/spiritual views, and health habits of long-term cancer survivors.

The results of a survey on various aspects of quality of life for 191 women who were long-term cancer survivors are presented. We explored six areas--somatic concerns, health habits, psychological state, sexual satisfaction, social/emotional support giving, and philosophical/spiritual view--and whether differences existed in them among the women on the basis of age, educational level, income level, length of survival, location of residence (urban, suburban, or rural), cancer site, and whether a recurrence of the cancer had been experienced. Generally, the women reported good psychological states and relative satisfaction with their sexual lives. However, women who had experienced a recurrence of their cancer, were longer term survivors, or suffered from breast cancer all reported higher levels of somatic concerns. Women with higher levels of education or income and those who had had a recurrence of their cancer indicated a greater willingness to provide social and emotional support to other women newly diagnosed with cancer. Women who had a positive philosophical/spiritual outlook were more likely to have good health habits and be supportive of others. There was no statistically significant variation among the women in either health habits or psychological state for any of the factors considered.

Breast cancer survivors: An exploration of quality of life issues

This article explores long-term survivorship (5 years or longer) through focus group discussions with women who have experienced breast cancer. The data revealed four major themes; integration of the disease process into current life, change in perspective, and unresolved issues. These data begin to shed light on the issues of breast cancer survivors and can provide a basis for development of a quantitative instrument to be tested with larger populations

Physicians and Hospice Care: Attitudes, Knowledge, and Referrals

Underutilization of hospice care continues to be a public health issue in the United States. Physician barriers related to incorrect knowledge and unfavorable attitudes have been hypothesized as part of the explanation. We conducted a mail survey of 264 area physicians, obtaining a response rate of 72% (n = 190). The survey examined attitudes toward, knowledge about, and perceptions of benefits and barriers to hospice care. Physicians demonstrated very positive attitudes toward hospice. They had correct knowledge about some aspects of hospice, but were uncertain about correct answers on the majority of items. They had erroneous knowledge on few items. Physicians perceived many benefits to hospice care, and identified patient and family readiness as the major barriers to earlier hospice referrals. Demographic and practice variables were related to responses on few of the survey items. These findings have many implications for outreach strategies for physicians as well as future research.

Integrating Patient-Reported Outcomes Into Cancer Symptom Management Clinical Trials Supported by the National Cancer Institute–Sponsored Clinical Trials Networks

Patient-reported outcomes (PROs) are often the primary end point in symptom management trials. The scientific field of PROs is evolving, as evidenced by the US Food and Drug Administrations February 2007 release of a draft guidance for using PROs in effectiveness claims for drug labeling. This article presents issues encountered during use of PROs in National Cancer Institute-sponsored symptom management trials. Selected trials are presented that exemplify the challenges often seen in symptom management trials, and solutions are described. The examples presented include defining the appropriate end point, selecting and validating assessments, and answering the research questions through statistical analysis and interpretation. Progress has been made in addressing some of the unique challenges of PRO-based symptom management research. Many challenges still remain, but a foundational body of work now exists for more consistent and rigorous application of PROs into symptom management trials. There remains a need for more research in several methodologic aspects of design, analysis, and interpretation of symptom management trials.

Complementary and Alternative Medicine Use, Spending, and Quality of Life in Early Stage Breast Cancer

Background: Up to 80% of women with breast cancer use complementary and alternative medicine (CAM) therapies to improve quality of life (QOL) during treatment. Objective: The objective of this study was to explore the association between CAM therapy use, spending on CAM therapies, demographic variables, surgical treatment, and QOL. Methods: A secondary analysis was conducted for women with early stage breast cancer (N = 222) who were enrolled in a nursing intervention study after breast surgery. The complementary therapy utilization instrument included specific CAM therapies used, number of treatments, and spending. The number of major categories of CAM and the specific CAM therapies used were analyzed in relation to study variables using proportional odds logistic regression models. The outcome of spending for major CAM categories was analyzed using linear mixed effects modeling. Results: A majority of women (56.8%) used at least one CAM therapy, and the biologically based therapies category was most frequently used (43.7%). Women with less than a college level of education were less likely to use CAM (odds ratio [OR] = 0.36, 95% confidence interval [CI] = 0.15-0.86, p < .01). Women who were employed were more likely to use therapies from multiple CAM categories (OR = 2.42, 95% CI = 1.00-5.88, p < .05), and those with lower QOL were more likely to use CAM (OR = 0.97, 95% CI = 0.95-0.99, p < .01). The results support that women with early stage breast cancer, especially those with lower QOL, are highly likely to use CAM therapies. Further research is needed on CAM interventions to enhance supportive care for breast cancer.

Development and testing of a quality of life model for long-term female cancer survivors

This research resulted in the evolution of a model depicting the quality of life of long-term female cancer survivors. The foundation for this models development was Ferrells (1993) breast cancer model, which incorporates physical, social, psychological and spiritual domains of life. The Ferrell model was adapted following focus-group discussions with 11 long-term female cancer survivors. The adjusted model included new categories, within each of Ferrells initial domains, that were specific to the focus group participants. Administration of a new instrument, the Long-Term Quality of Life (LTQL), to 187 long-term female cancer survivors produced a final model that included the interaction of all four domains in six major concepts of quality of life. This new model, which reflects the complexity of life in long-term female cancer survivors, may be useful to health professionals in designing interventions to meet the unique needs of these women.

Health-related quality-of-life outcomes: a reflexology trial with patients with advanced-stage breast cancer.

PURPOSE/OBJECTIVES To evaluate the safety and efficacy of reflexology, a complementary therapy that applies pressure to specific areas of the feet. DESIGN Longitudinal, randomized clinical trial. SETTING Thirteen community-based medical oncology clinics across the midwestern United States. SAMPLE A convenience sample of 385 predominantly Caucasian women with advanced-stage breast cancer receiving chemotherapy and/or hormonal therapy. METHODS Following the baseline interview, women were randomized into three primary groups: reflexology (n = 95), lay foot manipulation (LFM) (n = 95), or conventional care (n = 96). Two preliminary reflexology (n = 51) and LFM (n = 48) test groups were used to establish the protocols. Participants were interviewed again postintervention at study weeks 5 and 11. MAIN RESEARCH VARIABLES Breast cancer-specific health-related quality of life (HRQOL), physical functioning, and symptoms. FINDINGS No adverse events were reported. A longitudinal comparison revealed significant improvements in physical functioning for the reflexology group compared to the control group (p = 0.04). Severity of dyspnea was reduced in the reflexology group compared to the control group (p < 0.01) and the LFM group (p = 0.02). No differences were found on breast cancer-specific HRQOL, depressive symptomatology, state anxiety, pain, and nausea. CONCLUSIONS Reflexology may be added to existing evidence-based supportive care to improve HRQOL for patients with advanced-stage breast cancer during chemotherapy and/or hormonal therapy. IMPLICATIONS FOR NURSING Reflexology can be recommended for safety and usefulness in relieving dyspnea and enhancing functional status among women with advanced-stage breast cancer.

A model for identifying barriers to effective symptom management at the end of life

A number of initiatives have been launched in recent years aimed at improving the quality of end-of-life care, particularly in the area of symptom management. Despite these efforts, however, many patients will not experience a peaceful death free of pain and suffering. A number of barriers continue to block efforts to ease symptom burden at the end of life. A conceptual model that helps to identify these obstacles is the Symptom Management Model developed by the faculty at the School of Nursing, University of California, San Francisco. Two components of the model are explored in this article. Discussion of the Symptom Management Strategies dimension of the model focuses on factors related to professional nursing that block effective symptom control. In addition, barriers related to the Environment Domain (ie, physical, social, and cultural context in which a symptom occurs) are also examined for their impact on symptom relief. Healthcare providers are encouraged to use the Symptom Management Model to identify and correct impediments to effective symptom management and reduce patient suffering at the end of life.

Preliminary testing of the Long-Term Quality of Life (LTQL) instrument for female cancer survivors.

The purpose of this study was to develop a quality of life instrument for longterm female cancer survivors. A factor analysis (n = 188) of 34 items resulted in the Long-Term Quality of Life (LTQL) instrument. Internal consistency was high for the four subscales: somatic concerns (alpha = .86), spiritual/philosophical views of life (alpha = .87), fitness (alpha = .92), and social support (alpha = .88). These four factors are congruent with Ferrell’s four theoretical domains of quality of life developed for women with breast cancer. Content validity was supported through interrater agreement of subscale items. Significant correlations between the LTQL and the CaRES, an established measure of quality of life, support the concurrent validity of the LTQL. Construct validity was supported by differential subscale scores according to demographic and health status data. Although the LTQL retained all of Ferrell’s four domains of quality of life (physical, psychological, social, and spiritual) within one instrument, individual items reconfigured to suggest an overlapping of domains for the long-term female cancer survivor. This research suggests that the LTQL warrants further testing and may be a useful measure of quality of life in long-term female cancer survivors.