Virginia Sun

Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancer.

PURPOSE/OBJECTIVES To describe burden, skills preparedness, and quality of life (QOL) for caregivers of patients with non-small cell lung cancer (NSCLC), and describe how the findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care. DESIGN Descriptive, longitudinal. SETTING A National Cancer Institute-designated comprehensive cancer center in southern California. SAMPLE 163 family members or friends aged 18 years or older and identified by patients as being a caregiver. METHODS All eligible caregivers were approached by advanced practice nurses during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated-measures analysis of variance was used to test for change over time for all predictor and outcome variables. MAIN RESEARCH VARIABLES Caregiver burden, skills preparedness, psychological distress, and QOL. FINDINGS Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline but decreased over time. Psychological distress was moderate but increased in the study period. Overall QOL was moderate at baseline and decreased significantly over time. Psychological well-being had the worst QOL score. CONCLUSIONS Caregivers experienced high levels of caregiver burden and reported deteriorations in psychological well-being and overall QOL. IMPLICATIONS FOR NURSING Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory. KNOWLEDGE TRANSLATION Although family caregivers are profoundly impacted by a loved ones lung cancer diagnosis, the literature about caregiver burden, skills preparedness, and QOL is limited. Current evidence suggests that family caregivers can be negatively impacted by a loved ones cancer diagnosis. Caregiver-specific support interventions are needed to eliminate the burden of caregiving in lung cancer.

Barriers to pain assessment and management in cancer survivorship.

IntroductionHealthcare providers frequently lack the knowledge and skills to provide optimal pain management for cancer survivors. Scientific evidence and clinical guidelines are lacking in the management of chronic, persistent pain in survivors. The purpose of this article is to describe pain-related issues of cancer survivors using case presentations of selected patients enrolled in a randomized trial to eliminate barriers to pain management.Materials and methodsCase presentations were selected from a National Cancer Institute-funded study that utilizes patient and professional educational content derived from the clinical guidelines of the National Comprehensive Cancer Network. Case presentation criteria included a pain rating of ≥6 and diagnosis of Stage I, II, or III of the following cancers: breast, colon, lung, or prostate cancer. Cases are presented based on the study’s framework of patient, professional, and system-related barriers to optimal pain relief.ResultsAcross all three case presentations, barriers such as fear of side effects from pain medications, fear of addiction, lack of professional knowledge of the basic principles of pain management, and lack of timely access to pain medications due to reimbursement issues are prevalent in cancer survivorship.ConclusionsChronic pain syndromes related to cancer treatments are common in cancer survivors. Patient, professional, and system-related barriers that are seen during active treatment continue to hinder optimal pain relief during survivorship.Implications for cancer survivorsHealthcare providers must acknowledge the impact of chronic, persistent pain on the quality of cancer survivorship. Clinical as well as scientific efforts to increase knowledge in chronic pain management will improve the symptom management of cancer survivors.

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.

Surviving colorectal cancer: long-term, persistent ostomy-specific concerns and adaptations.

PURPOSE The purpose of this article was to describe persistent ostomy-specific concerns and adaptations in long-term (>5 years) colorectal cancer survivors with ostomies. SUBJECTS AND SETTINGS Thirty-three colorectal cancer survivors who participated in 8 gender- and health-related quality of life stratified focus groups and 130 colorectal cancer survivors who provided written comments to 2 open-ended questions on ostomy location and pouch problems participated in the study. Data were collected on health maintenance organization members in Oregon, southwestern Washington, and northern California. METHODS Qualitative data were analyzed for the 8 focus groups and written comments from 2 open-ended survey questions. Discussions from the focu s groups were recorded, transcribed, and analyzed using content analysis. Written content from the open-ended questions was derived from a mailed questionnaire on health-related quality of life in survivors with ostomies and analyzed using content analysis. RESULTS Discussions related to persistent ostomy-related issues more than 5 years after formation were common. Persistent ostomy-related issues were focused on clothing restrictions and adaptations, dietary concerns, issues related to ostomy equipment and self-care, and the constant need to find solutions to adjust and readjust to living with an ostomy. CONCLUSIONS Ostomy-specific concerns persist 5 years and more for long-term colorectal cancer survivors after initial ostomy formation. Adaptations tend to be individualized and based on trial and error. Findings underscore the need to develop long-term support mechanisms that survivors can access to promote better coping and adjustment to living with an ostomy.

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.

Challenges and Strategies in Recruitment of Ethnically Diverse Populations for Cancer Nursing Research

PURPOSE/OBJECTIVES To describe common barriers, identify challenges for researchers, and provide strategies for recruitment and retention of ethnic minority groups for cancer nursing research. DATA SOURCES Computerized search of databases, published articles, abstracts, masters theses, and doctoral dissertations. DATA SYNTHESIS Social, economic, and cultural factors present challenges to recruitment of minorities into research. Knowing the culture of the target population, developing trust, engaging the community, and using tailored materials are strategies for recruitment and retention of minorities. CONCLUSIONS Knowledge of potential barriers and challenges to research with diverse populations provides the foundation for the development of strategies for successful recruitment of minorities in cancer nursing research. IMPLICATIONS FOR NURSING Increasing ethnic minorities in research will generate knowledge that will contribute to culturally competent cancer care.

Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer.

Family caregivers (FCGs) experience significant deteriorations in quality of life while caring for patients with lung cancer. In this study, the authors tested the effectiveness of an interdisciplinary palliative care intervention for FCGs of patients diagnosed with stage I through IV nonsmall cell lung cancer.

Symptom Management in Hepatocellular Carcinoma

Hepatocellular carcinoma (HCC) annually causes about one million deaths. Because of advanced stage at diagnosis, HCC carries a five-year survival rate of less than 5% in patients diagnosed with unresectable disease. Incidence for HCC is higher in men and individuals of Asian descent, where viral hepatitis, a leading cause of HCC, is endemic. This article will provide an overview of the complex symptom management of patients with HCC. The occurrence of multiple symptoms, including pain, fatigue, weight loss, and obstructive syndromes (e.g., ascites, jaundice) in patients with HCC is common. Because of limitations in the efficacy of current treatment options, aggressive symptom management is key to preserving physical functioning and quality of life in patients with HCC. A multidisciplinary team approach to symptom management of patients with HCC is critical, with oncology nurses playing an integral role.

Going with the flow: Quality-of-life outcomes of cancer survivors with urinary diversion

PURPOSE The purpose of this descriptive study was to describe health-related quality of life (HRQOL) concerns among cancer patients with continent urinary diversion (UD) and incontinent UD. SUBJECTS and SETTINGS Study participants were accrued from members of the California United Ostomy Association and 2 cancer centers in Southern California. INSTRUMENT The City of Hope HRQOL-Ostomy Questionnaire (COHHRQOL-O) is a modified HRQOL measurement tool based on the original work done over a number of years by Grant and colleagues. METHODS The COHHRQOL-O was mailed to 2,890 individuals. Of the 1,600 returns, there were 307 responses from patients with UD, indicating that they had a UD and a diagnosis that clearly indicated cancer. RESULTS The majority of respondents were diagnosed with bladder cancer, and the average time since surgery was 9.5 years. While most patients reported being sexually active prior to UD, less than 27% resumed sexual activity after surgery. More than 75% of patients also reported difficulty in adjusting to their UD, with the majority reporting difficulty with urine leakage. Those who were incontinent reported a range of bothersome issues, such as skin problems around the UD, difficulties in managing UD care, fear of recurrence, financial worries, family distress, and uncertainty about the future. CONCLUSIONS The results of this study add to our understanding of how patients adjust to a UD and what problems and issues can occur, even years after the initial surgery. Mastering UD care is best done under the guidance of a WOC nurse, and access to WOC nurse is essential when problems occur.

Interdisciplinary Palliative Care Intervention in Metastatic Non-Small-Cell Lung Cancer

OBJECTIVE Challenges and barriers continue to hinder the integration of palliative care models into comprehensive, ambulatory oncology care. This article aims to describe how symptoms, distress, and quality of life (QOL) data from the usual care phase of a National Cancer Institute-supported Program Project informed the development of an interdisciplinary, tailored palliative care intervention for patients with metastatic non-small-cell lung cancer (NSCLC). METHODS Patients receiving usual care for metastatic NSCLC were recruited into this prospective longitudinal study over a 1-year period. A total of 130 patients with stage IV NSCLC were accrued, and 114 patients had evaluable data. Research nurses assisted patients in completing the clinical section of the data forms, and patients completed surveys and self-reports at baseline and 6, 12, and 24 weeks. RESULTS Patients ranged in age from 40 to 84 years, and 61% were Caucasian non-Hispanic. Sixty-six former (N = 59) and current smokers had an average of 38 pack-year history of smoking. The Karnofsky Performance Status, Instrumental Activities of Daily Living, and Cognitive scores deteriorated significantly (P = .001, .009, and .042, respectively). Social Activity was stable, whereas Social Support increased significantly. Overall symptom distress score and Total symptom score both significantly increased at 24 weeks (P = .003 and .017, respectively). Physical Well-Being decreased significantly (P = .036), whereas the Functional Assessment of Cancer Therapy-Lung, Functional Assessment of Chronic Illness Therapy-Spirituality Subscale, and Distress scores remained statistically stable over time. CONCLUSIONS Patients with metastatic NSCLC continue to experience high symptom burden and diminished physical well-being over time while receiving cancer treatments. An interdisciplinary palliative care intervention is currently being tested to improve symptom burden and overall QOL.