Gwen Uman

Revision and psychometric testing of the City of Hope Quality of Life-Ostomy Questionnaire

Purpose: Ostomies may be performed for bowel or urinary diversion, and occur in both cancer and non-cancer patients. Impact on physical, psychological, social and spiritual well-being is not unexpected, but has been minimally described in the literature. The City of Hope Quality of Life (COH-QOL)-Ostomy Questionnaire is an adult patient self-report instrument designed to assess quality of life. This report focuses on the revision and psychometric testing of this questionnaire. Patients and methods: The revised COH-QOL-Ostomy Questionnaire involved in-depth patient interviews and expert panel review. The format consisted of a 13-item disease and demographic section, a 34-item forced-choice section, and a 41-item linear analogue scaled section. A mailed survey to California members of the United Ostomy Association resulted in a 62% response rate (n = 1513). Factor analysis was conducted to refine the instrument. Construct validity involved testing a number of hypotheses identifying contrasting groups. Results: Factor analysis confirmed the conceptual framework. Reliability of subscales ranged from 0.77 to 0.90. The questionnaire discriminated between subpopulations with specific concerns. Conclusions: Overall, the analyses provide evidence for the validity and reliability of the COH-QOL-Ostomy Questionnaire as a comprehensive, multidimensional self-report questionnaire for measuring quality of life in patients with intestinal ostomies.

Indications and use of palliative surgery-results of society of surgical oncology survey

Background: Despite increasing attention to end-of-life care in oncology, palliative surgery (PS) remains poorly defined. A survey to test the definition, assess the extent of use, and evaluate attitudes and goals of surgeons regarding PS was devised.Methods: A survey of Society of Surgical Oncology (SSO) members.Results: 419 SSO members completed a 110-item survey. Surgeons estimated 21% of their cancer surgeries as palliative in nature. Forty-three percent of respondents felt PS was best defined based on pre-operative intent, 27% based on post-operative factors, and 30% on patient prognosis. Only 43% considered estimated patient survival time an important factor in defining PS, and 22% considered 5-year survival rate important. The vast majority (95%) considered tumor still evident following surgery in a patient with poor prognosis constituted PS. Most surgeons felt PS could be procedures due to generalized illness related to cancer (80%) or related to cancer treatment complications (76%). Patient symptom relief and pain relief were identified as the two most important goals in PS, with increased survival the least important.Conclusion: PS is a major portion of surgical oncology practice. Quality-of-life parameters, not patient survival, were identified as the most important goals of PS.

Interdisciplinary Palliative Care for Patients With Lung Cancer

CONTEXT Palliative care, including symptom management and attention to quality of life (QOL) concerns, should be addressed throughout the trajectory of a serious illness such as lung cancer. OBJECTIVES This study tested the effectiveness of an interdisciplinary palliative care intervention for patients with Stage I-IV non-small cell lung cancer (NSCLC). METHODS Patients undergoing treatments for NSCLC were enrolled in a prospective, quasi-experimental study whereby the usual care group was accrued first followed by the intervention group. Patients in the intervention group were presented at interdisciplinary care meetings, and appropriate supportive care referrals were made. They also received four educational sessions. In both groups, QOL, symptoms, and psychological distress were assessed at baseline and 12 weeks using surveys which included the Functional Assessment of Cancer Therapy-Lung and the Lung Cancer Subscale, the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, and the Distress Thermometer. RESULTS A total of 491 patients were included in the primary analysis. Patients who received the intervention had significantly better scores for QOL (109.1 vs. 101.4; P < 0.001), symptoms (25.8 vs. 23.9; P < 0.001) spiritual well-being (38.1 vs. 36.2; P = 0.001), and lower psychological distress (2.2 vs. 3.3; P < 0.001) at 12 weeks, after controlling for baseline scores, compared to patients in the usual care group. Patients in the intervention group also had significantly higher numbers of completed advance care directives (44% vs. 9%; P < 0.001), and overall supportive care referrals (61% vs. 28%; P < 0.001). The benefits were seen primarily in the earlier stage patients vs. those with Stage IV disease. CONCLUSION Interdisciplinary palliative care in the ambulatory care setting resulted in significant improvements in QOL, symptoms, and distress for NSCLC patients.

Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery.

There has been limited research in the field of palliative care and even far less focus on the area of palliative surgery. Although patient needs are paramount, family caregivers require information and support at the time surrounding surgery for advanced disease. The aim of this prospective cohort study of family caregivers of patients with advanced malignancies was to measure the impact of palliative surgery on dimensions of quality of life (QOL) for these family members. Family caregivers completed assessment tools preoperatively and at approximately 3 weeks and 2 and 3 months postoperatively. Parameters of physical, psychological, social, and spiritual QOL were measured on a scale of 0 (poor) to 10 (good) using the City of Hope QOL-Family instrument. Caregivers recorded their general distress on the Distress Thermometer using a scale of 0 (none) to 10 (severe). Analysis of the data revealed that family caregivers had disruptions similar to patients in physical, psychological, social, and spiritual dimensions of QOL. Findings suggest that caregivers should be assessed for distress and QOL concerns both before and after surgery for patients with advanced malignancies. Although caregiver concerns cannot always be eradicated, resources and interventions to support family caregivers are vital to improving QOL.

Evaluation of end-of-life nursing education for continuing education and clinical staff development educators.

This article presents data from the 1-year follow-up of the three conferences targeted toward continuing education (CE) providers and staff development (SD) educators and reviews the train-the-trainer model used in disseminating the End-of-Life Nursing Education Consortium (ELNEC) curriculum. The analysis has implications for educators to promote improved end-of-life (EOL) care in their own institutions.

Effectiveness of a Clinical Intervention to Eliminate Barriers to Pain and Fatigue Management in Oncology

BACKGROUND Pain and fatigue are recognized as critical symptoms that impact quality of life (QOL) in cancer, particularly in palliative care settings. Barriers to pain and fatigue relief have been classified into three categories: patient, professional, and system barriers. The overall objective of this study was to test the effects of a clinical intervention on reducing barriers to pain and fatigue management in oncology. METHODS This longitudinal, three-group, quasi-experimental study was conducted in three phases: phase 1 (usual care), phase 2 (intervention), and phase 3 (dissemination). A sample of 280 patients with breast, lung, colon, or prostate cancers, stage III and IV disease (80%), and a pain and/or fatigue of 4 or more (moderate to severe) were recruited. The intervention group received four educational sessions on pain/fatigue assessment and management, whereas the control group received usual care. Pain and fatigue barriers and patient knowledge were measured at baseline, 1 month, and 3 months post-accrual for all phases. A 3 × 2 repeated measures statistical design was utilized to derive a priori tests of immediate effects (baseline to 1 month) and sustained effects (baseline or 1 month to 3 months) for each major outcome variable, subscale, and/or scale score. RESULTS There were significant immediate and sustained effects of the intervention on pain and fatigue barriers as well as knowledge. Measurable improvements in QOL were found in physical and psychological well-being only. CONCLUSION A clinical intervention was effective in reducing patient barriers to pain and fatigue management, increasing patient knowledge regarding pain and fatigue, and is feasible and acceptable to patients.

An Overview of the ACE Project—Advocating for Clinical Excellence: Transdisciplinary Palliative Care Education

Background. Excellence in palliative care demands attention to the multidimensional aspects of patient and family suffering, yet too few psycho-oncology professionals report adequate preparation in this vital area. Methods. A total of 148 competitively selected psychologists, social workers, and spiritual care professionals participated in intensive educational courses to enhance their palliative care delivery, leadership, and advocacy skills. Extensive process and outcome evaluations measured the effectiveness of this educational program. Results. To date, 2 national courses have been completed. The courses received strong overall evaluations, with participants rating increased confidence in defined palliative care skills. Conclusions. The initial results of this innovative National Cancer Institute-funded transdisciplinary training for psycho-oncology professionals affirm the need and feasibility of the program. See the Advocating for Clinical Excellence Project Web site (www.cityofhope.org/ACEproject) for additional course information.

Integrating Spiritual Care within Palliative Care: An Overview of Nine Demonstration Projects

Spiritual care is an essential domain of quality palliative care as determined by the National Consensus Project for Quality Palliative Care (NCP, 2009) and the National Quality Forum (NQF). Studies have consistently indicated the desire of patients with serious illness and end-of-life concerns to have spirituality included in their care. While there is an emerging scholarly body of literature to support the inclusion of spiritual care as part of a biopsychosocial-spiritual approach to health care, palliative care programs lack empirical guidance needed to effectively integrate best spiritual care practices.

Health Beliefs of Women With and Without Breast Cancer Seeking Genetic Cancer Risk Assessment

Genetic cancer risk assessment (GCRA) is increasingly being incorporated into clinical care. Planning supportive nursing care for women seeking GCRA requires knowledge of their health beliefs. We described and compared the cancer risk-related beliefs of 134 women with a personal history of breast cancer (affected group) and 80 women without breast cancer who had a family history of the disease (unaffected group), prior to risk assessment, using a mailed survey. This article reports their demographics, health characteristics, family history, and beliefs about cancer risk, risk factors, and genetic testing. Most participants were in their 40s (mean age = 47.9), Caucasian (79%), married (66%), and college-educated (60%), and had children (78%). Most women (87%) had a close relative with breast cancer and/or ovarian cancer. In general, both groups greatly overestimated near-term and lifetime cancer risk. Significantly more unaffected women believed they were at higher risk for breast cancer than affected women. Both groups expressed desire for, but lacked knowledge of, genetic testing. Nurses are in a prime position to assist women seeking GCRA by providing accurate information and emotional support regarding cancer risk, risk factors, and genetic testing.

Feasibility of a Palliative Care Intervention for Cancer Patients in Phase I Clinical Trials

BACKGROUND Cancer patients with advanced disease who have exhausted most treatment options are often offered participation in Phase I clinical trials. To date, studies that assess the benefits of palliative care provided concurrently in Phase I clinical trial settings are lacking. The overall purpose of this study was to test the feasibility of a palliative care intervention administered concurrently to cancer patients receiving treatment in a Phase I clinical trial. METHODS Cancer patients enrolling in a Phase I clinical trial were invited to participate in this study. Patients completed baseline questionnaires prior to treatment initiation that assessed quality of life (QOL), symptom distress, psychological distress, and satisfaction with care. Patients then received the palliative care intervention (PCI), which consisted of comprehensive QOL assessment, care planning for the patient during an interdisciplinary team meeting, and two patient education sessions. Patients were surveyed again at 1 and 2 months following treatment initiation. RESULTS A total of 14 patients were accrued to the pilot over a 3-month time period, representing 70% of eligible patients. Patient retention was high at 1 month (75%), and had declined at 2 months (50%). Patient outcome measure scores, including symptom distress, psychological distress, and satisfaction with care, were relatively stable over time, except for overall QOL, which declined over time. CONCLUSIONS Concurrent palliative care is feasible for cancer patients treated in Phase I clinical trial settings. A large, multisite randomized controlled trial based on this pilot will be launched to test the efficacy of the intervention in this understudied cancer population.