Challenges in assessing spiritual distress in survivors of cancer.

BACKGROUND: Many efforts have been made to better integrate spiritual assessment into the care of patients with cancer, with varying degrees of success in different parts of the United States. Little work has been done to describe challenges that face those who seek to implement assessment in busy ambulatory settings, particularly in the northeastern section of the United States. OBJECTIVES: This study sought to test the feasibility of a screening process describing spirituality, distress, and spiritual transformation in cancer survivors after chemotherapy for lung or gastrointestinal cancer.  METHODS: This descriptive pilot study took place in a rural National Cancer Institute- designated comprehensive cancer center, referral center, and outpatient medical oncology clinic. A web-based questionnaire was completed by 29 survivors, and 22 declined participation.  FINDINGS: Respondents were primarily Christian, aged 60 years or older, and an average of 18 months post-diagnosis. The mean spiritual distress score was 1.38 (SD = 2.09), and the mean psychological distress score was 3.03 (SD = 2.73). Participants reported mean spiritual well-being, positive degree of spiritual growth, and little spiritual decline. The opportunity for spiritual growth among survivors creates a need for effective assessment and intervention to promote spiritual growth and mitigate spiritual decline and spiritual distress.

Addressing distress in patients with head and neck cancers: a mental health quality improvement project.

This study sought to improve mental health care for patients with head and neck cancers (HNCs) through the implementation of an evidence-based process for identifying and managing psychological distress. This process in an HNC medical oncology clinic was assessed and redesigned using quality improvement (QI) methods from November 2010 through April 2012. The redesign, starting in January 2011, involved a 2-component QI intervention: the validated NCCN Distress Thermometer and an evidence-based treatment decision algorithm. Screening processes were improved through Plan-Do-Study-Act (PDSA) cycles. Before January 2011, distress identification was based on a provider's clinical assessment. Cause-effect diagramming suggested that lack of a formalized process for distress assessment contributed to missed diagnoses. Providers were also unfamiliar with mental health resources. After implementing process changes, biweekly distress screening rates rose from 0% to 38% between January and July 2011. Furthermore, with additional PDSA cycles, these rates increased to 74% between October 2011 and April 2012. Similar to proposed benchmarks, 84% (n=47) of newly diagnosed patients (n=56) were screened. Improvement in screening was attributed to process changes and involvement of senior leadership. QI principles can be applied to the cancer setting in order to create systems of care which more reliably identify and address the needs of patients with psychological distress.

Multidimensional needs of caregivers for patients with cancer.

This pilot study describes the multidimensional (physical, psychological, social, and spiritual) needs of caregivers of cancer survivors. A regional comprehensive cancer center and nine community-based rural and urban cancer clinics in New Hampshire assembled a convenience sample. Patients with cancer completed an online survey, the cancer survivor Web-based needs assessment survey (CS-WEBS), to identify needs and desire for intervention. Patients then identified a caregiver who was recruited to complete a caregiver version of the CS-WEBS. Caregivers reported challenges within all four domains of the survivorship model. The highest reported physical symptoms were fatigue, insomnia, and weight gain. Social symptoms included financial issues. Although visiting nurse services were the most commonly used resource, many caregivers used no supportive services. The most common caregiver task was listening and talking. Caregivers frequently experienced fatigue, anxiety, and insomnia. Exploring effective ways to alleviate their symptom burden should be a priority. Local and national attention should be directed toward easing the financial burden of caring for a patient with cancer.

Assessing cancer survivors' needs using web-based technology: a pilot study.

Development of cancer survivor resources has been hampered by lack of knowledge regarding survivors' needs. The main study aim was to pilot test a Web-based cancer survivor needs assessment survey. The second aim was to pilot three sampling approaches. This cross-sectional study was conducted at the Norris Cotton Cancer Center and nine community-based clinics serving urban and rural populations. Population-based and convenience sampling approaches were used to recruit 547 participants over 4 months. Participants completed a Web-based cancer survivor needs assessment survey. Respondents were mainly white (98%), married (71%) women (80%) with a college education (96%). Although most (66%) (n = 362) had been diagnosed with breast cancer, other cancer diagnoses were represented. Participants reported fatigue (47%), forgetfulness (39%), joint pain (34%), anxiety (31%), trouble sleeping (28%), peripheral neuropathy (27%), inflexibility (23%), and weight gain (23%). Survivors with nonbreast solid tumor malignancies reported more problems than those with breast or hematologic malignancies (P range = .037 to <.0001). Most survivors requested assistance for losing weight (74.2%), decreasing fatigue (50%), and improving flexibility (69.3%), sleep (68.5%), and memory (60.2%). Results supported that cancer survivors struggle with many enduring problems. Web-based technology will facilitate future exploration of unmet needs.

Using quality improvement methodology to improve neuropathic pain screening and assessment in patients with cancer.

BACKGROUND: Quality improvement methodology was used to improve neuropathic pain (NP) screening at a comprehensive cancer center. METHODS: Nurses participated in educational sessions about screening and assessment. Clinical systems to facilitate documentation of NP severity scores were developed. RESULTS: Pretest and posttest score results demonstrated nurse acquisition of new knowledge. A 90% NP screening adherence rate was achieved (N = 3831). Patients with no reported general pain (n = 291) were found to have moderate to severe NP. CONCLUSIONS: Keys to success are (1) health care professional education and periodic reinforcement of learning and (2) system infrastructure changes.

Proxy perspectives regarding end-of-life care for persons with cancer.

BACKGROUND: Each year, greater than a half million people die of cancer in the U.S. Despite progress in increasing access to palliative oncology services, end-of-life care still needs improvement. Measuring the quality of the end-of-life experience is difficult because of patient debility and reduced consciousness as death approaches. Family proxies have been proposed as valuable informants regarding the quality of end-of-life care. This article describes family proxy perspectives concerning care at the end of life in patients who died of advanced cancer. METHODS: In the context of a novel outpatient palliative care demonstration project, 125 family proxy respondents completed a structured survey by telephone 3 months to 6 months after the patient's death from breast, lung, or gastrointestinal cancer. Four key quality of care indicators were measured: decision-making and physician communication, location of death, hospice involvement, and end-of-life symptoms. RESULTS: Proxies reported that 78% to 81% of patients completed at least 1 form of advance directive and approximately half of them were helpful in guiding care. Communication with physicians regarding end-of-life treatment wishes occurred in 67% of cases, but only 57% of the patients actually made a plan with their physician to ensure that their wishes were followed. The majority of patients died in their location of choice, most often at home, and greater than half had hospice involvement for an average of 41.8 days before death. During the last week of life, the majority of patients experienced troublesome physical and emotional symptoms. CONCLUSIONS: Measurement of proxy perspectives is feasible as an indicator of the quality of end-of-life care, and the results of the current study provide actionable data for areas of improvement in palliative oncology care.

Spiritual assessment of patients with cancer: the moral authority, vocational, aesthetic, social, and transcendent model.

PURPOSE/OBJECTIVES: To explore the nature of spiritual care in patients with cancer and discuss the Moral Authority, Vocational, Aesthetic, Social, and Transcendent (Mor-VAST) Model, a new theoretical model for assessment. DATA SOURCES: Published articles, online references. DATA SYNTHESIS: Discussions regarding spirituality often do not occur for a variety of reasons but may affect physical and spiritual health of an individual. CONCLUSIONS: Assessment of spirituality should be an integral part of cancer care. The Mor-VAST model can assist clinicians in discussing spirituality. IMPLICATIONS FOR NURSING: Nurses should be aware of resources for referral to chaplaincy, but they can be a part of the process of spiritual support. Educational opportunities are available for nurses who wish to address their own spirituality so they can address spirituality comfortably and confidently with their patients.

Quality of life of long-term survivors of breast cancer and lymphoma treated with standard-dose chemotherapy or local therapy.

PURPOSE: This study compared the quality of life (QOL) of long-term survivors of breast cancer and lymphoma who had been treated with standard-dose systemic chemotherapy or local therapy only. PATIENTS AND METHODS: Long-term survivors (mean, 10.0 +/- 5.3 years after treatment) of breast cancer or lymphoma who had been treated with systemic chemotherapy (breast, n = 141, age = 57.0 +/- 10.1 years; lymphoma, n = 66, age = 55.8 +/- 13.5 years) or local therapy only (breast, n = 294, age = 65.8 +/- 9.1 years; lymphoma, n = 37, age = 50.4 +/- 12.8 years) were interviewed by phone using the Quality of Life-Cancer Survivors Tool. RESULTS: Multivariate analysis of covariance, controlling for sex, age, education, stage of disease, and time since last treatment, revealed that survivors who had been treated with systemic chemotherapy scored significantly lower on overall QOL compared with survivors treated with local therapy only (P = .04). Analysis of covariance on the subscale scores revealed that, compared with survivors who received local therapy, survivors treated with chemotherapy scored significantly lower on the Social subscale (P < .0001), but no differences emerged on the Psychological or Spiritual subscales. There was a statistically significant interaction between treatment and diagnosis (P = .01), as measured by the Physical subscale, indicating that lymphoma survivors treated with chemotherapy scored worse than all other groups. CONCLUSION: Important QOL differences emerged between the chemotherapy and local therapy groups, suggesting that long-term QOL may vary depending on the type of treatment and diagnosis.

Project ENABLE: a palliative care demonstration project for advanced cancer patients in three settings.

At the end of the 1990s, based on data from two major studies of end-of-life (EOL) care, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), and the Hospitalized Elderly Longitudinal Project (HELP), a consensus panel report documented the problems and needs of patients with cancer and other life-limiting diagnoses at end-of-life. A national program of The Robert Wood Johnson Foundation (RWJF), Promoting Excellence in End-of-Life Care, attempted to address these needs by funding demonstration projects to test various approaches to improve identified deficits. In 1998, Project ENABLE (Educate, Nurture, Advise Before Life Ends), one of four RWJF-funded cancer center/hospice collaborations of the Promoting Excellence program, began to address these issues. The jointly sponsored Norris Cotton Cancer Center (NCCC)/Hospice of Vermont and New Hampshire (Hospice VNH) program provided an integrated approach to the management of life-limiting cancer. Project ENABLE was aimed at alleviating the symptoms of disease and treatment, enhancing clinician and patient/family communication, offering support for families, friends and other caregivers, addressing emotional and spiritual needs of dying people and providing conceptual and administrative structure to provide EOL care consistent with patients' values and preferences. Although patient symptom data is not yet available, other measures of success included improved access to hospice and palliative care services from the time of diagnosis and a sustained palliative care program at two of the three sites in which the program was implemented.

Patients' need for information about cancer therapy.

PURPOSE/OBJECTIVES: To obtain detailed information about the preferences of patients with cancer and their need for information about side effects of cancer treatment to design an interactive multimedia educational program. DESIGN: Qualitative. SETTING: Regional rural academic medical center. SAMPLE: 51 patients and 14 spouses of patients who either currently were undergoing or recently had completed chemotherapy or radiation therapy for cancer. METHODS: Focus groups. MAIN RESEARCH VARIABLES: Information needs and common and distressing symptoms. FINDINGS: Patients wanted information about the process of getting treatment, specific side effects that might occur, and the impact of treatment on their lives. Patients sought information from a variety of sources, but many found that other patients were the most helpful source. Although most patients wanted as much information as possible so they would be prepared for whatever happened, some patients preferred to avoid information about possible side effects. Several obstacles related to information were reported, including access to providers, communication difficulties with providers, informational overload, and problems with retention. CONCLUSIONS: Several aspects regarding information needs confirmed previous findings, and new aspects were illuminated. This led to a conclusion that multimedia technology offered many advantages to meet these informational needs. IMPLICATIONS FOR NURSING: New approaches to patient education that will meet the needs of patients as well as clinicians and educators need to be developed.

Neuropsychologic impact of standard-dose systemic chemotherapy in long-term survivors of breast cancer and lymphoma.

PURPOSE: The primary purpose of this study was to compare the neuropsychologic functioning of long-term survivors of breast cancer and lymphoma who had been treated with standard-dose systemic chemotherapy or local therapy only. PATIENTS AND METHODS: Long-term survivors (5 years postdiagnosis, not presently receiving cancer treatment, and disease-free) of breast cancer or lymphoma who had been treated with systemic chemotherapy (breast cancer: n = 35, age, 59.1 +/- 10.7 years; lymphoma: n = 36, age, 55.9 +/- 12.1 years) or local therapy only (breast cancer: n = 35, age, 60.6 +/- 10.5 years; lymphoma: n = 22, age, 48.7 +/- 11.7 years) completed a battery of neuropsychologic and psychologic tests (Center for Epidemiological Study-Depression, Spielberger State-Trait Anxiety Inventory, and Fatigue Symptom Inventory). RESULTS: Multivariate analysis of variance, controlling for age and education, revealed that survivors who had been treated with systemic chemotherapy scored significantly lower on the battery of neuropsychologic tests compared with those treated with local therapy only (P <.04), particularly in the domains of verbal memory (P <.01) and psychomotor functioning (P <.03). Survivors treated with systemic chemotherapy were also more likely to score in the lower quartile on the Neuropsychological Performance Index (39% v 14%, P <.01) and to self-report greater problems with working memory on the Squire Memory Self-Rating Questionnaire (P <.02). CONCLUSION: Data from this study support the hypothesis that systemic chemotherapy can have a negative impact on cognitive functioning as measured by standardized neuropsychologic tests and self-report of memory changes. However, analysis of the Neuropsychological Performance Index suggests that only a subgroup of survivors may experience long-term cognitive deficits associated with systemic chemotherapy.