Elizabeth Ercolano

Self-Management: Enabling and Empowering Patients Living With Cancer as a Chronic Illness

With recent improvements in the early detection, diagnosis, and treatment of cancer, people with cancer are living longer, and their cancer may be managed as a chronic illness. Cancer as a chronic illness places new demands on patients and families to manage their own care, and it challenges old paradigms that oncologys work is done after treatment. As a chronic illness, however, cancer care occurs on a continuum that stretches from prevention to the end of life, with early detection, diagnosis, treatment, and survivorship in between. In this article, self‐management interventions that enable patients and families to participate in managing their care along this continuum are reviewed. Randomized controlled trials of self‐management interventions with cancer patients and families in the treatment, survivorship, and end‐of‐life phases of the cancer care continuum are reviewed, and the Chronic Care Model is presented as a model of care that oncology practices can use to enable and empower patients and families to engage in self‐management. It is concluded that the need for a common language with which to speak about self‐management and a common set of self‐management actions for cancer care notwithstanding, oncology practices can now build strong relationships with their patients and formulate mutually agreed upon care plans that enable and empower patients to care for themselves in the way they prefer. CA Cancer J Clin 2011.

Effects of a nursing intervention on quality of life outcomes in post-surgical women with gynecological cancers.

Objective: Women with gynecological cancers have reported poor health‐related quality of life (QOL), with complex physical and psychological needs post‐surgery and during chemotherapy treatment. There are no studies reporting interventions addressing these needs post‐hospital discharge in this population.

Randomized Exercise Trial of Aromatase Inhibitor-Induced Arthralgia in Breast Cancer Survivors

PURPOSE Arthralgia occurs in up to 50% of breast cancer survivors treated with aromatase inhibitors (AIs) and is the most common reason for poor AI adherence. We conducted, in 121 breast cancer survivors receiving an AI and reporting arthralgia, a yearlong randomized trial of the impact of exercise versus usual care on arthralgia severity. PATIENTS AND METHODS Eligibility criteria included receiving an AI for at least 6 months, reporting ≥ 3 of 10 for worst joint pain on the Brief Pain Inventory (BPI), and reporting < 90 minutes per week of aerobic exercise and no strength training. Participants were randomly assigned to exercise (150 minutes per week of aerobic exercise and supervised strength training twice per week) or usual care. The BPI, Western Ontario and McMaster Universities Osteoarthritis (WOMAC) index, and Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire were completed at baseline and at 3, 6, 9, and 12 months. Intervention effects were evaluated using mixed-model repeated measures analysis, with change at 12 months as the primary end point. RESULTS Over 12 months, women randomly assigned to exercise (n = 61) attended 70% (± standard deviation [SD], 28%) of resistance training sessions and increased their exercise by 159 (± SD, 136) minutes per week. Worst joint pain scores decreased by 1.6 points (29%) at 12 months among women randomly assigned to exercise versus a 0.2-point increase (3%) among those receiving usual care (n = 60; P < .001). Pain severity and interference, as well as DASH and WOMAC pain scores, also decreased significantly at 12 months in women randomly assigned to exercise, compared with increases for those receiving usual care (all P < .001). CONCLUSION Exercise led to improvement in AI-induced arthralgia in previously inactive breast cancer survivors.

Quality of life among women after surgery for ovarian cancer

OBJECTIVES Difficulties with diagnosis and aggressive, long-term treatment may result in lower quality of life (QOL), including high levels of anxiety, depression, and uncertainty, greater symptom distress, and lower overall QOL among women with ovarian cancer. The purpose of this study was to describe demographic, clinical, and other risk factors associated with compromised QOL among women who have undergone surgery for ovarian malignancies. METHODS Subjects were recruited to participate in a clinical trial that tested a specialized nursing intervention addressing psychological and physical care among women post-surgical for ovarian cancer. QOL was measured using five standardized self-report measures: the State-Trait Anxiety Scale (SAS), the Center for Epidemiological Studies Depression Scale (CES-D), the Mishel Uncertainty in Illness Scale (MUIS), the Symptom Distress Scale (SDS), and the Short-Form Health Survey (SF-12). Baseline data were collected while women were hospitalized following surgery. RESULTS The sample (n=145) included women with ovarian cancer (58%) and other cancers metastasized to the ovaries and abdomen (42%). Mean scores on the measures were consistent with or higher than previously reported means for similar populations. Women reporting the lowest QOL were more likely to be younger, more educated, and have early stage disease. SIGNIFICANCE OF RESULTS Women who have undergone surgery for ovarian malignancies have psychological needs that are often considered secondary to physical needs. Interventions should include routine screening for distress and referral to appropriate psychological and social services, thereby facilitating quality cancer care.

Validity of the End-of-Life Professional Caregiver Survey To Assess for Multidisciplinary Educational Needs

The National Consensus Project for Quality Palliative Care (NCP) has put forth eight domains of clinical practice guidelines that address the multidisciplinary nature of palliative and end-of-life (EOL) care. Extant surveys to assess education needs of palliative and EOL workers, however, have been constructed for individual professions. Thus we developed the End-of-life Professional Caregiver Survey (EPCS) as an instrument for assessing the palliative and EOL care-specific educational needs of multidisciplinary professionals.

The Environmental Health Engagement Profile: What People Think and Do About Environmental Health

OBJECTIVES To develop and validate the Environmental Health Engagement Profile (EHEP)-an instrument for assessing the way people engage with environmental health issues, including peoples experience of environmental health hazards, the assumptions concerning the risks involved, and the actions taken either individually or collectively in their communities. DESIGN AND SAMPLE This instrument development study was conducted in an urban area with varying levels of health-related environmental concerns. First, qualitative interviews with 41 residents informed development of items. Next, the items were evaluated by 28 expert reviewers. Finally, validity was assessed from responses of 433 residents who completed the instrument and other measures by telephone interview. MEASURES For assessing validity of EHEP, data were also collected concerning demographic characteristics, social involvements, goodness of life, and self-ratings of health. RESULTS Through factor analysis, 5 subscales were identified-named Pollution Sensitivity Scale (alpha=.91), Pollution-Causes-Illness Scale (alpha=.84), Pollution Acceptance Scale (alpha=.67), Community Environment Action Scale (alpha=.79), and Personal Environmental Action Scale (alpha=.63). Patterns of correlations of these scales with age, and measures of odor sensitivity, social involvement, and goodness of life provided evidence of construct validity. CONCLUSIONS These results provide beginning evidence for the reliability and validity of the EHEP. Thus, public health nurses and others may use this instrument to assess peoples concerns about environmental health, and resulting actions-and to support strategies for advising people and communities on protecting their health.

Supporting Commission on Cancer–Mandated Psychosocial Distress Screening With Implementation Strategies

PURPOSE The American College of Surgeons Commission on Cancer (CoC) has set psychosocial distress screening as a new patient care standard to be met by 2015. The standard requires CoC-accredited cancer centers to integrate and monitor distress screening and, when needed, refer patients to psychosocial health care services. We describe the uptake of distress screening reported by applicants to a distress screening cancer education program and the degree of and barriers to implementation of distress screening programs reported by selected participants. MATERIALS AND METHODS This cross-sectional study collected quantitative data online from applicants to the program between August 1 and November 15, 2013, described by frequencies, percentages, and measures of central tendency, and qualitative data in person from accepted participants on February 13, 2014, analyzed using an integrated approach to open-ended data. RESULTS Applications were received from 70 institutions, 29 of which had started distress screening. Seven of 18 selected applicant institutions had not begun screening patients for distress. Analysis of qualitative data showed that all participants needed to create buy-in among key cancer center staff, including oncologists; to decide how to conduct screening in their institution in a way that complied with the standard; and to pilot test screening before large-scale rollout. CONCLUSION Fourteen months before the compliance deadline, fewer than half of applicant institutions had begun distress screening. Adding implementation strategies to mandated quality care standards may reduce uncertainty about how to comply. Support from key staff members such as oncologists may increase uptake of distress screening.

Self-management for adult patients with cancer: an integrative review.

Background: Individuals with cancer are surviving long term, categorizing cancer as a chronic condition, and with it, numerous healthcare challenges. Symptoms, in particular, can be burdensome and occur from prediagnosis through many years after treatment. Symptom severity is inversely associated with functional status and quality of life. Objective: Management of these millions of survivors of cancer in a stressed healthcare system necessitates effective self-care strategies. The purpose of this integrative review is to evaluate intervention studies led by nurse principal investigators for self-care management in patients with cancer. Methods: PubMed, CINAHL (Cumulative Index to Nursing and Allied health Literature), and the Cochrane Database were searched from January 2000 through August 2012. Search terms included “symptom management and cancer,” “self-management and cancer,” and “self-care and cancer.” All articles for consideration included intervention studies with a nurse as the primary principal investigator. Results: Forty-six articles were included yielding 3 intervention areas of educational and/or counseling sessions, exercise, and complementary and alternative therapies. Outcomes were predominately symptom focused and often included functional status and quality of life. Few studies had objective measures. Overarching themes were mitigation, but not prevention or elimination of symptoms, and improved quality of life related to functional status. No one intervention was superior to another for any given outcome. Conclusions: Current interventions that direct patients in self-care management of symptoms and associated challenges with cancer/survivorship are helpful, but incomplete. No one intervention can be recommended over another. Implications for Practice: Guiding patients with cancer in self-care management is important for overall functional status and quality of life. Further investigation and tailored interventions are warranted.

Patterns of symptoms in women after gynecologic surgery.

PURPOSE/OBJECTIVES To explore patterns of symptoms over time and the relationships between selected demographic and clinical characteristics. DESIGN Secondary analysis of longitudinal data. SETTING A hospital and comprehensive cancer center in the northeastern United States. SAMPLE 66 women with gynecologic cancers, postsurgical, and scheduled to receive chemotherapy. METHODS A secondary analysis using descriptive and general estimating equation statistical procedures was conducted on symptom and disease data in a subset of a larger nursing intervention study. MAIN RESEARCH VARIABLES Demographic and clinical variables including cancer site, new diagnosis or recurrence, stage, treatment, comorbidities, emotional distress, use of a symptom management tool kit, and 10 symptoms over time. FINDINGS Two patterns of symptoms were identified. The first pattern (pain, bowel dysfunction, disturbed sleep, depression, nausea, and lack of appetite) decreased, and the second pattern (fatigue, anxiety, hair loss, and numbness) remained constant over time. The total number of symptoms decreased over time. Factors associated with symptoms, such as the use of a tool kit and emotional distress, were identified. CONCLUSIONS Tool kit use by women who experienced fatigue, bowel dysfunction, and anxiety suggests its usefulness as a self-care guide. Explanations for the two patterns of symptoms are discussed. IMPLICATIONS FOR NURSING Postsurgical management should include management and monitoring of symptoms associated with treatment. Screening for emotional distress is recommended in this population. Use of the tool kit could be an effective postsurgical management strategy for women with gynecologic cancers.

The Five Steps of Comprehensive Psychosocial Distress Screening

Despite the growing recognition of the impact psychosocial distress has on the quality of life of patients with cancer, the implementation of the National Comprehensive Cancer Network (NCCN) Distress Management Guidelines and the mandate of evidence-based policy for routine distress screening continue to lag. To speed adoption of the guideline, the American Psychosocial Oncology Society (APOS) and Yale School of Nursing (YSN) launched the Screening for Psychosocial Distress Program in 2014. The program resulted in the development of five steps necessary to carry out routine psychosocial distress screening. The steps are consistent with the NCCN Distress Management Guidelines and the new criterion for accreditation by the American College of Surgeons (ACS) Commission on Cancer as of 2015. These five steps are as follows: (1) screening, (2) evaluating, (3) referring, (4) following up, and (5) documenting and quality improvement. The purpose of this article is to summarize the detailed procedure of the five steps for cancer care professionals—including oncologists, nurses, psychiatrists, psychologists, and social workers—so they can manage psychosocial distress efficiently in their own clinical environments.