Dena Schulman-Green

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.

Processes of Self‐Management in Chronic Illness

PURPOSE Self-management is a dynamic process in which individuals actively manage a chronic illness. Self-management models are limited in their specification of the processes of self-management. The purpose of this article is to delineate processes of self-management in order to help direct interventions and improve health outcomes for individuals with a chronic illness. DESIGN Qualitative metasynthesis techniques were used to analyze 101 studies published between January 2000 and April 2011 that described processes of self-management in chronic illness. METHODS Self-management processes were extracted from each article and were coded. Similar codes were clustered into categories. The analysis continued until a final categorization was reached. FINDINGS Three categories of self-management processes were identified: focusing on illness needs; activating resources; and living with a chronic illness. Tasks and skills were delineated for each category. CONCLUSIONS This metasynthesis expands on current descriptions of self-management processes by specifying a more complete spectrum of self-management processes. CLINICAL RELEVANCE Healthcare providers can best facilitate self-management by coordinating self-management activities, by recognizing that different self-management processes vary in importance to patients over time, and by having ongoing communication with patients and providers to create appropriate self-management plans.

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.

A Revised Self- and Family Management Framework

BACKGROUND Research on self- and family management of chronic conditions has advanced over the past 6 years, but the use of simple frameworks has hampered the understanding of the complexities involved. PURPOSE We sought to update our previously published model with new empirical, synthetic, and theoretical work. METHODS We used synthesis of previous studies to update the framework. DISCUSSION We propose a revised framework that clarifies facilitators and barriers, processes, proximal outcomes, and distal outcomes of self- and family management and their relationships. CONCLUSIONS We offer the revised framework as a model that can be used in studies aimed at advancing self- and family management science. The use of the framework to guide studies would allow for the design of studies that can address more clearly how self-management interventions work and under what conditions.

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.

Interdisciplinary staffing patterns: do for-profit and nonprofit hospices differ?

BACKGROUND Interdisciplinary care is fundamental to the hospice philosophy and is a key component of high-quality hospice care. However, little is known about how hospices differ in their interdisciplinary staffing patterns, particularly across nonprofit and for-profit hospices. The purpose of this study was to examine potential differences in the staffing patterns of for-profit and nonprofit hospices. SUBJECTS AND DESIGN Using the 2006 Medicare Provider of Services (POS) survey, we conducted a cross-sectional analysis of staffing patterns within Medicare-certified hospices operating in the United States in 2006. In bivariate and multivariable analyses, we examined differences in staffing patterns measured by the existence of a full range of interdisciplinary staff (defined as having at least 1 full-time equivalent (FTE) staff in each of 4 disciplines ascertained by the survey: physician, nursing, psychosocial, and home health aide) and by the professional mix of staff within each discipline. RESULTS For-profit hospices had a winder range of paid staff but there were no differences by ownerships when volunteer staff were included. For-profit hospices had significantly fewer registered nurse FTEs as a proportion of nursing staff, fewer medical social worker FTEs as a proportion of psychosocial staff, and fewer clinician FTEs as a proportion of total staff (p values <0.05). Compared to nonprofit hospices, for-profit and government-owned hospices also used proportionally fewer volunteer FTEs. CONCLUSIONS Hospice staffing patterns differed significantly by ownership type. Future research should evaluate the impact of these differences on quality of care and satisfaction among patients and families using hospice.

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.

Psychosocial issues in palliative care: Physicians’ self-perceived role and collaboration with hospital staff

Psychosocial issues are a major part of palliative treatment, yet, due to inadequate training, physicians are often ill-prepared to address them. Twenty physicians were interviewed about the importance they placed on psychosocial issues and the perceptions they had of their role in addressing them. Several respondents felt psychosocial issues were important because they affect physical issues, enable holistic care, enhance relationships, impact care decisions, and can reduce patient and family stress. Other respondents did not feel psychosocial issues were their responsibility due to time constraints, their focus on physical care, their lack of expertise in this area, the patients’ preferences for attending physicians, and a sense on the part of house staff physicians of not yet being “real” doctors. Collaboration with other hospital staff helped overcome some of these obstacles. Since physicians must often provide psychosocial care, improved training in addressing psychosocial issues is indicated.

Concordance of Advance Care Plans With Inpatient Directives in the Electronic Medical Record for Older Patients Admitted From the Emergency Department

CONTEXT Measuring What Matters identified quality indicators to examine the percentage of patients with documentation of a surrogate decision maker and preferences for life-sustaining treatments. OBJECTIVES To determine the rate of advance care planning in older adults presenting to the emergency department (ED) and translation into medical directives in the electronic medical record (EMR). METHODS A convenience sample of adults 65 years or older was recruited from a large urban ED beginning in January 2012. We administered a baseline interview and survey in English or Spanish, including questions about whether patients had a documented health care proxy or living will. For patients admitted to the hospital who had a health care proxy or living will, chart abstraction was performed to determine whether their advance care preferences were documented in the EMR. RESULTS From February 2012 to May 2013, 53.8% (367 of 682) of older adults who completed the survey in the ED reported having a health care proxy, and 40.2% (274 of 682) had a living will. Of those admitted to the hospital, only 4% (4 of 94) of patients who said they had a living will had medical directives documented in the EMR. Similarly, only 4% (5 of 115) of patients who had a health care proxy had the persons name or contact information documented in their medical record. CONCLUSION About half of the patients 65 years or older arriving in the ED have done significant advance care planning, but most plans are not recorded in the EMR.

Federal Funding for Mixed Methods Research in the Health Sciences in the United States Recent Trends

Although investigators in health sciences are increasingly interested in using mixed methods, greater adoption requires funding opportunities. Funding allocations can signal recognition of a particular methodology and proficiency of investigators in using such methods. We examined trends in prevalence of mixed methods research funded by federal agencies in the United States. We reviewed abstracts to describe the content and terminology related to mixed methods. The number of self-identified mixed methods awards (n = 535; 2009-2014) increased modestly from previous trends (n = 226; 1997-2008). Abstracts were highly variable in their depth of description and use of mixed methods terminology. We propose five elements to address when developing a scientific abstract for a mixed methods study to facilitate clear description of study design and methods.