Associations between symptoms with healthcare utilization and death in advanced cancer patients.

INTRODUCTION: There is limited data about assessments that are associated with increased utilization of medical services among advanced oncology patients (AOPs). We aimed to identify factors related to healthcare utilization and death in AOP. METHODS: AOPs at a comprehensive cancer center were enrolled in a Center for Medicare and Medicaid Innovation program. Participants completed the Edmonton Symptom Assessment Scale (ESAS) and the Functional Assessment of Cancer Therapy-General (FACT-G) scale. We examined factors associated with palliative care (PC), acute care (AC), emergency room (ER), hospital admissions (HA), and death. RESULTS: In all, 817 AOPs were included in these analyses with a median age of 69. They were generally female (58.7%), white (61.4%), stage IV (51.6%), and represented common cancers (31.5% GI, 25.2% thoracic, 14.3% gynecologic). ESAS pain, anxiety, and total score were related to more PC visits (B=0.31, 95% CI [0.21, 0.40], p<0.001; B=0.24 [0.12, 0.36], p<0.001; and B=0.038 [0.02, 0.06], p=0.001, respectively). Total FACT-G score and physical subscale were related to total PC visits (B=-0.021 [-0.037, -0.006], p=0.008 and B=-0.181 [-0.246, -0.117], p<0.001, respectively). Lower FACT-G social subscale scores were related to more ER visits (B=-0.03 [-0.53, -0.004], p=0.024), while increased tiredness was associated with fewer AC visits (B=-0.039 [-0.073, -0.006], p=0.023). Higher total ESAS scores were related to death within 30 days (OR=0.87 [0.76, 0.98], p=0.027). CONCLUSIONS: The ESAS and FACT-G assessments were linked to PC and AC visits and death. These assessments may be useful for identifying AOPs that would benefit from routine PC.

Possible Bioenergetic Biomarker for Chronic Cancer-Related Fatigue.

BACKGROUND: Cancer-related fatigue (CRF) is a highly prevalent, debilitating, and persistent symptom experienced by patients receiving cancer treatments. Up to 71% of men with prostate cancer receiving radiation therapy experience acute and persistent CRF. There is neither an effective therapy nor a diagnostic biomarker for CRF. This pilot study aimed to discover potential biomarkers associated with chronic CRF in men with prostate cancer receiving radiation therapy. METHODS: We used a longitudinal repeated-measures research design. Twenty men with prostate cancer undergoing radiation therapy completed all study visits. CRF was evaluated by a well-established and validated questionnaire, the Patient-Reported Outcomes Measurement Information System for Fatigue (PROMIS-F) Short Form. In addition, peripheral blood mononuclear cells were harvested to quantify ribonucleic acid (RNA) gene expression of mitochondria-related genes. Data were collected before, during, on completion, and 24 months postradiation therapy and analyzed using paired t-tests and repeated-measures analysis of variance. RESULTS: The mean of the PROMIS-F T score was significantly increased over time in patients with prostate cancer, remaining elevated at 24 months postradiation therapy compared to baseline. A significant downregulated BC1 ubiquinol-cytochrome c reductase synthesis-like (BCS1L) was observed over time during radiation therapy and at 24 months postradiation therapy. An increased PROMIS-F score was trended with downregulated BCS1L in patients 24 months after completing radiation therapy. DISCUSSION: This is the first evidence to describe altered messenger RNA for BCS1L in chronic CRF using the PROMIS-F measure with men receiving radiation therapy for prostate cancer. CONCLUSION: Our results suggest that peripheral blood mononuclear cell messenger RNA for BCS1L is a potential biomarker and therapeutic target for radiation therapy-induced chronic CRF in this clinical population.

A survey of cancer patients, caregivers, and providers regarding familiarity, importance, and utilization of supportive and integrative oncology services.

PURPOSE: Supportive and integrative oncology services aim to improve the quality of life of cancer patients. This study characterizes the views of these services among cancer patients, caregivers, and providers at a comprehensive cancer center. METHODS: A cross-sectional survey was administered in 2017-2018. The survey asked about participants' familiarity, perceived importance, use, accessibility, and barriers to 19 supportive and integrative oncology services using a Likert scale. Data were analyzed using the Kruskal-Wallis test and a proportional odds regression model. RESULTS: A total of 976 surveys were obtained (604 patient surveys, 199 caregiver surveys, 173 provider surveys). Patients were mostly female (56.3%), ≥60 years old (59.4%), and Caucasian (66%). Providers were an even distribution of nurses, physicians, and advanced practice providers. Patients felt social work and nutrition services were the most familiar (36.4% and 34.8%) and the most important (46.3% and 54.5%). Caregivers were also most familiar with those two services, but felt that nutrition and learning resources were most important. Social work and nutrition were easiest to access and used the most by both patients and providers. There was a positive correlation between accessibility and perceived importance. Being unaware was the most common barrier identified by patients (38.4%), providers (67.1%), and caregivers (33.7%). CONCLUSION: Social work and nutrition services were most familiar to respondents, and also generally the most important, accessible, and utilized. Lack of awareness was the most common barrier cited and suggests that increased efforts to educate patients and providers about other services available are needed.

Interest and Willingness to Pay for Integrative Therapies of Patients With Cancer and Caregivers.

PURPOSE: Complementary and integrative medicine (CIM) services are more prevalent in cancer centers but continue to be underutilized by patients. This study examines perspectives from patients and caregivers about these services being offered at a comprehensive cancer center. METHODS: Patients and caregivers were surveyed about their familiarity, interest, and experience with five CIM therapies: acupuncture, massage, meditation, music therapy, and yoga. Respondents were asked about their interest in and/or paying for these services at baseline, when recommended by their medical team, and when offered in a clinical trial. Respondents were also asked about perceived barriers to accessing these services. Chi-squared tests were performed to explore associations between past experience, interest levels, and willingness to pay. RESULTS: A total of 576 surveys were obtained (464 patients and 112 caregivers). Most respondents identified as White or Caucasian (65.6%), female (57.2%), had been a patient for < 3 years (74.2%), had some college education (73.8%), and made > $40,000 in US dollars as their annual household income (69.1%). Respondents were most familiar with therapeutic massage (34.2%) and least familiar with acupuncture (20.0%). The average interest in these services increased from 53.3% to 64.1% when recommended by a medical professional. Respondents were most willing to pay $1-60 for therapeutic massage (62.3%) and least willing to pay for meditation (43.7%). The main barriers to accessing CIM services were cost (56.0%) and lack of knowledge (52.1%). CONCLUSION: Overall, a significant proportion of patients and caregivers were unfamiliar with these five integrative therapies. Increasing education, decreasing cost, and a recommendation by medical professionals would improve CIM usage.

Relationships between expression of BCS1L, mitochondrial bioenergetics, and fatigue among patients with prostate cancer.

Introduction: Cancer-related fatigue (CRF) is the most debilitating symptom with the greatest adverse side effect on quality of life. The etiology of this symptom is still not understood. The purpose of this study was to examine the relationship between mitochondrial gene expression, mitochondrial oxidative phosphorylation, electron transport chain complex activity, and fatigue in prostate cancer patients undergoing radiotherapy (XRT), compared to patients on active surveillance (AS). Methods: The study used a matched case-control and repeated-measures research design. Fatigue was measured using the revised Piper Fatigue Scale from 52 patients with prostate cancer. Mitochondrial oxidative phosphorylation, electron-transport chain enzymatic activity, and BCS1L gene expression were determined using patients' peripheral mononuclear cells. Data were collected at three time points and analyzed using repeated measures ANOVA. Results: The fatigue score was significantly different over time between patients undergoing XRT and AS (P<0.05). Patients undergoing XRT experienced significantly increased fatigue at day 21 and day 42 of XRT (P<0.01). Downregulated mitochondrial gene (BC1, ubiquinol-cytochrome c reductase, synthesis-like, BCS1L, P<0.05) expression, decreased OXPHOS-complex III oxidation (P<0.05), and reduced activity of complex III were observed over time in patients with XRT. Moreover, increased fatigue was significantly associated with downregulated BCS1L and decreased complex III oxidation in patients undergoing XRT. Conclusion: Our results suggest that BCS1L and complex III in mitochondrial mononuclear cells are potential biomarkers and feasible therapeutic targets for acute XRT-induced fatigue in this clinical population.

Perceived Needs, Preparedness, and Emotional Distress of Male Caregivers of Postsurgical Women With Gynecologic Cancer

OBJECTIVES: To describe the perceived needs, preparedness, and emotional distress of male caregivers of postsurgical patients with gynecologic cancer during the transition from hospital to home. 
. SAMPLE & SETTING: 50 male caregivers of patients with gynecologic cancer on an inpatient unit at University Hospitals Seidman Cancer Center in Cleveland, OH.
. METHODS & VARIABLES: Caregiver needs, perceived preparedness, and emotional distress were measured at admission and at one week postdischarge. Instruments included the Comprehensive Needs Assessment Tool for Cancer Caregivers, Preparedness for Caregiving Scale, and National Comprehensive Cancer Network Distress Thermometer. The analysis consisted of descriptive statistics, Spearman's correlations, and univariate linear regressions.
. RESULTS: At both time points, male caregivers' greatest needs were interaction with the healthcare staff and information. Perceived preparedness was not associated with emotional distress. Male caregivers who were young, were employed, were unmarried, and had a lower income had greater needs.
. IMPLICATIONS FOR NURSING: A relational nursing care approach that maintains effective communication with male caregivers is essential. Nurses should broaden the caregiver assessment beyond the practical care of the patient.

Relationship between phase I study duration and symptom burden.

PURPOSE: Phase I clinical trials are critical to development of cancer therapeutics. Adverse events (AEs) and symptom burden contribute to early treatment withdrawal, and it is often difficult to ascertain whether these events are disease- or treatment-related. Regardless, early withdrawal may delay determination of the effectiveness of potential new therapies. We sought to characterize the reasons for early treatment termination to identify potential modifiable events. METHODS: A retrospective chart review was conducted on solid tumor patients enrolled in institutional phase I clinical trials from 2003 to 2013 through the Case Comprehensive Cancer Center. RESULTS: Two hundred fifty-five patients were included in the analysis. The mean duration on study was 78.4 days (SD 63.4 days), and 23% of the patients were on study ≤ 30 days. Patients experienced an average of 25.1 AEs, of which 46.9% were non-laboratory. Constitutional symptoms (29.3%), gastrointestinal symptoms (24%), and pain (12.8%) were the most common non-laboratory AEs. Disease progression (57.6%) was the most common reason for study discontinuation, followed by adverse events (16.5%). Approximately 13% of the patients discontinued treatment for other reasons, of which 41.7% were identified as related to symptom burden on further review. Increased rates of AEs negatively correlated with duration on study (r = - 0.331; p < 0.01). CONCLUSIONS: AEs may lead to early termination of trial participation and confound clinical assessment of investigational treatments. Designing interventions to reduce AE burden may extend duration on trial, affect the recommended phase II dose, and benefit the quality of life of participants on phase I trials.

Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions.

People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care will require changing public perceptions and individuals' views in this high-risk population.

Health behaviors in family members of patients completing cancer treatment.

PURPOSE/OBJECTIVES: To describe the impact of the cancer experience on the health behaviors of survivors' family members and to determine factors associated with family members' intentions for health behavior change. DESIGN: Descriptive, cross-sectional, correlational. SETTING: A National Cancer Institute-designated comprehensive cancer center in the midwestern United States. SAMPLE: 39 family members and 50 patients with diagnoses of breast, colorectal, head and neck, lung, or prostate cancer who were completing definitive cancer treatment. METHODS: Patients and family members were approached in the clinic at three weeks or fewer before the completion of their course of treatment. Family members completed surveys and a structured interview in person or via telephone. MAIN RESEARCH VARIABLES: Intention, perceived benefit, and confidence about eating a healthful diet, physical activity, and smoking cessation; emotional distress; and family cohesion, conflict, and expressiveness. FINDINGS: Family members had high ratings for intention, perceived benefit, and confidence related to the behaviors of eating a healthful diet and performing 30 minutes of daily moderate-intensity physical activity. They also had high ratings for the extent to which the cancer experience had raised awareness of their cancer risk and made them consider undergoing screening tests for cancer; ratings were lower for making changes in their health behaviors. CONCLUSIONS: Family members expressed strong intentions to engage in health-promoting behaviors related to physical activity and nutrition at the post-treatment transition. IMPLICATIONS FOR NURSING: Oncology nurses are in a key position to engage family members and patients in behavior change. Nurses should assess family members at the completion of treatment for distress and provide interventions to influence the trajectory of distress in survivorship.

Effect of an integrated cancer support team on caregiver satisfaction with end-of-life care.

PURPOSE/OBJECTIVES: To test the effectiveness of an interdisciplinary cancer support team (CST) on caregiver satisfaction with end-of-life (EOL) care for family members with advanced cancer. DESIGN: Quasi-experimental pre- and post-test tandem design. SETTING: Outpatient clinics of a comprehensive cancer center in urban Cleveland, OH. SAMPLE: 106 family caregivers. METHODS: Participants were enrolled into the control or CST group. Caregiver mood state and social support were measured at enrollment as well as at 3, 9, and 15 months, and satisfaction with EOL care was measured eight weeks after the patient's death. MAIN RESEARCH VARIABLES: Caregiver mood state, social support, and satisfaction with EOL care. FINDINGS: The intervention made no statistically significant contribution to caregiver mood state or perception of social support. The intervention group reported higher satisfaction with overall EOL care as well as five specific areas of EOL satisfaction (i.e., pain relief, information about managing pain, speed in treating symptoms, information regarding side effects, and coordination of care). CONCLUSIONS: The CST yielded improved EOL satisfaction. IMPLICATIONS FOR NURSING: Although the emotional impact of an impending loss of a loved one may not change with the provision of support, perception that a loved one was well cared for in the terminal phase of illness may have long-range benefits through the grieving process. Investigation of the long-range effects of satisfaction with EOL care on the grieving process is warranted.

How have long-term survivors coped with living with HIV?

With advances in HIV treatment, more individuals have grown older with the disease. Little is known about factors that have helped these survivors manage everyday life with HIV. In this exploratory, qualitative study, we asked, "What has helped survivors cope with challenges of living long term with HIV?" Participants were recruited from a convenience sample of persons living with HIV who obtained treatment at a specialty HIV clinic; 16 long-term survivors of HIV were interviewed. Mean age was 50.13 (SD = 8.30) years; mean time from diagnosis was 16.75 (SD = 5.98) years. Results were broadly dichotomized as coping mechanisms and social supports. Three themes characterized coping mechanisms: disease coping, practical coping, and emotional coping. Social supports included themes of family, friends, professionals, peer groups, and pets. In particular, the power of patient-professional relationships and meanings derived from religion/spirituality were considered by a majority of participants to be influential factors.

The impact of patient quality of life and spirituality upon caregiver depression for those with advanced cancer.

OBJECTIVE: Little is known about relationships between patient spiritual well-being and caregiver outcomes for those with advanced cancer. We were interested in examining the relationship between patient physical quality of life (QOL) and caregiver depression and to also evaluate whether patient spiritual well-being (SWB) played a mediating role in this relationship. METHOD: This is a prospective longitudinal study that was conducted in the outpatient clinics at a university-affiliated comprehensive cancer center. 226 patients with Stage III or IV cancer (lung, GI, GYN) and their primary caregivers were interviewed upon enrollment into the study and three months later. Measures of spirituality, health-related quality of life, and physical functioning were included in the interviews. RESULTS: Key findings were that the relationship between patient physical QOL and caregiver depression was inverse and moderate (ß = -0.24, p = 0.004) and that patient SWB (meaning/peace) played a significant (p = 0.02) and medium-size role (ß = -0.31) in mediating the relationship between patient physical QOL and caregiver depression. The nature of these relationships was stable over time. SIGNIFICANCE OF RESULTS: Patients' spirituality is central to their coping and adjusting to cancer. It is this aspect of patient overall quality of life that mediates the relationship to caregiver well-being. The most potent intervention for caregiver depression may be attending to patient spiritual distress.

Lack of communication and control: experiences of distance caregivers of parents with advanced cancer.

PURPOSE/OBJECTIVES: To explore the new and complex phenomenon of distance caregiving in the advanced cancer population. RESEARCH APPROACH: Qualitative. SETTING: A large comprehensive cancer center in the midwestern region of the United States. PARTICIPANTS: 14 distance caregivers of parents with advanced cancer. METHODOLOGIC APPROACH: Patients with advanced lung, gastrointestinal, and gynecologic malignancies consented to have their distance caregiving adult children contacted to participate in the study. Responses to three open-ended questions guided the tape-recorded telephone interviews with the distance caregivers. Following transcription, content analysis with inductive coding was performed. FINDINGS: Two major themes, communication and control, and five subthemes, benefits and burdens of distance caregiving, dealing with uncertainty, direct action through information seeking, protecting, and staying connected, emerged from the data. CONCLUSIONS: Distance caregivers experience some of the same stressors that local caregivers of patients with cancer experience. In addition, they have unique psychosocial needs related to the burden of geographic distance. INTERPRETATION: Distance caregivers could benefit from nursing interventions targeted at their unique needs. Innovative interventions using Web-based computer technology for improved communication, as well as supportive care interventions, may be helpful.

Moral distress in neonatal intensive care unit RNs.

BACKGROUND: Moral distress is a significant problem for nurses (RNs). It has physical, emotional, and psychological sequelae and a negative impact on the quality, quantity, and cost of patient care. Moral distress leads to loss of moral integrity and job dissatisfaction and is a major cause of burnout and RNs leaving the profession. The majority of research has been carried out with RNs working in acute care, adult inpatient settings, especially critical care areas. Neonatal intensive care unit (NICU) RNs confront ethically and morally challenging situations on a regular basis. There are limited data clarifying their moral distress. AIMS: The purpose of this study was to describe the moral distress of RNs working in NICUs and to identify the situations that are associated with their moral distress. RESEARCH QUESTIONS: What are the intensity and frequency of moral distress in NICU RNs, what situations are associated with moral distress in NICU RNs, and what personal characteristics are correlated with moral distress in NICU RNs? DESIGN AND METHODS: This descriptive, correlational study was conducted with RNs in the level III NICUs of a healthcare system in the northeastern United States. Participation was voluntary and anonymous. A convenience sample of RNs completed a demographic data sheet and the Moral Distress Scale Neonatal-Pediatric Version. Data were collected during October 2008. Ninety-four of 196 eligible RNs (48%) participated in the study. FINDINGS: As a whole, the subjects did not perceive that the situations described in the instrument occurred frequently and did not cause great distress. Subjects' individual scores displayed wide variations for all dimensions of moral distress ranging from low to high, indicating that individual RNs may be experiencing moral distress.The situations receiving the highest scores are comparable with the areas that are problematic for other critical care nurses as described in the literature. In this study, 4 RN characteristics were significantly related to moral distress: the desire to leave their current position, lack of spirituality, altered approach to patient care, and considering but not leaving a previous job because of moral distress. CONCLUSIONS: The results of this study add to the understanding of the moral distress in NICU RNs. The data will provide evidence for eventual psychometric testing and factor analysis of the Moral Distress Scale Neonatal-Pediatric Version.

The relationship between optimism and quality of life in newly diagnosed cancer patients.

BACKGROUND: Understanding the relationships between social and psychological determinants of health-related quality of life (HRQOL) is a critical step in developing effective screening tools and targeted interventions for psychosocial care. OBJECTIVE: The purpose of this study was to examine the relationship between dispositional optimism and HRQOL in newly diagnosed adult cancer patients. METHODS: A cross-sectional, predictive correlational design was used. The sample consisted of 163 patients with mixed diagnoses and stages who were within 180 days since diagnosis and had completed a battery of psychosocial measures upon enrollment into a psychosocial data registry during their first outpatient visit or treatment. Hierarchical multiple regression analyses were conducted to determine predictors of HRQOL. RESULTS: Optimism was significantly correlated with spiritual well-being, anxiety, depression, and HRQOL. Optimism was not a significant predictor of HRQOL at initial diagnosis and treatment when age, scores on functional status, spiritual well-being, depression, and anxiety were entered into the regression equation. CONCLUSION: Dispositional optimism is not a primary factor in HRQOL at initial diagnosis and treatment. Further exploration is needed to determine if optimism exerts a greater influence on HRQOL at another point along the cancer trajectory and if there is overlap between the constructs of optimism and spirituality. IMPLICATIONS FOR PRACTICE: Although systematic screening for dispositional optimism is not recommended, patients who display characteristics associated with low optimism require further assessment. Also, patients with poor functional status, young age, low levels of spirituality, and high levels of depression may be vulnerable for poor HRQOL.