An Accessible Communication System for Population-Based Genetic Testing: Development and Usability Study.

BACKGROUND: Genetic testing uptake is low, despite the well-established connection between pathogenic variants in certain cancer-linked susceptibility genes and ovarian cancer risk. Given that most major insurers cover genetic testing for those with a family history suggestive of hereditary cancer, the issue may lie in access to genetic testing. Remotely accessible web-based communication systems may improve awareness, and uptake, of genetic testing services. OBJECTIVE: This study aims to present the development and formative evaluation of the multistep web-based communication system required to support the implementation of, and access to, genetic testing. METHODS: While designing the multistep web-based communication system, we considered various barriers and facilitators to genetic testing, guided by dimensions of accessibility. In addition to conducting usability testing, we performed ongoing assessments focusing on the function of the web-based system and participant response rates, with the goal of continuing to make modifications to the web-based communication system as it is in use. RESULTS: The combined approach of usability testing and expert user experience consultation resulted in several modifications to the multistep web-based communication system, including changes that related to imagery and content, web accessibility, and general organization of the web-based system. All recommendations were made with the goal of improving the overall accessibility of the web-based communication system. CONCLUSIONS: A multistep web-based communication system appears to be an effective way to address many potential barriers to access, which may otherwise make genetic testing difficult for at-risk individuals to participate in. Importantly, some dimensions of access were easy to assess before study recruitment, but other aspects of the communication system required ongoing assessment during the implementation process of the Making Genetic Testing Accessible study.

Thirty-day hospital readmission rate, reasons, and risk factors after acute inpatient cancer rehabilitation.

OBJECTIVES: To evaluate the 30-day hospital readmission rate, reasons, and risk factors for patients with cancer who were discharged to home setting after acute inpatient rehabilitation. DESIGN, SETTING, AND PARTICIPANTS: This was a secondary retrospective analysis of participants in a completed prospective survey study that assessed the continuity of care and functional safety concerns upon discharge and 30 days after discharge in adults. Patients were enrolled from September 5, 2018, to February 7, 2020, at a large academic quaternary cancer center with National Cancer Institute Comprehensive Cancer Center designation. MAIN OUTCOMES AND MEASURES: Thirty-day hospital readmission rate, descriptive summary of reasons for readmissions, and statistical analyses of risk factors related to readmission. RESULTS: Fifty-five (21%) of the 257 patients were readmitted to hospital within 30 days of discharge from acute inpatient rehabilitation. The reasons for readmissions were infection (20, 7.8%), neoplasm (9, 3.5%), neurological (7, 2.7%), gastrointestinal disorder (6, 2.3%), renal failure (3, 1.1%), acute coronary syndrome (3, 1.1%), heart failure (1, 0.4%), fracture (1, 0.4%), hematuria (1, 0.4%), wound (1, 0.4%), nephrolithiasis (1, 0.4%), hypervolemia (1, 0.4%), and pain (1, 0.4%). Multivariate logistic regression modeling indicated that having a lower locomotion score (OR = 1.29; 95% CI, 1.07-1.56; p = 0.007) at discharge, having an increased number of medications (OR = 1.12; 95% CI, 1.01-1.25; p = 0.028) at discharge, and having a lower hemoglobin at discharge (OR = 1.31; 95% CI, 1.03-1.66; p = 0.031) were independently associated with 30-day readmission. CONCLUSION AND RELEVANCE: Among adult patients with cancer discharged to home setting after acute inpatient rehabilitation, the 30-day readmission rate of 21% was higher than that reported for other rehabilitation populations but within the range reported for patients with cancer who did not undergo acute inpatient rehabilitation.

Lymph node density for patient counselling about prognosis and for designing clinical trials of adjuvant therapies after radical cystectomy.

UNLABELLED: What's known on the subject? and What does the study add? Patients with positive lymph nodes at radical cystectomy have a poor prognosis. The actual outcome of patients varies based on many factors, among which lymph node density has emerged as being more informative than nodal status of TNM staging. We combined clinical data from two major cancer centres in the USA and identified patients with an adequate lymphadenectomy and no perioperative chemotherapy to understand the natural history of the disease. Using this information, we created prognostic tools incorporating lymph node density that can be used for risk stratification, patient counselling and clinical trial design. OBJECTIVE: • To develop a clinical tool based on lymph node density (LND) for patient counselling after radical cystectomy and for design of clinical trials of adjuvant therapies after radical cystectomy. PATIENTS AND METHODS: • Using pooled data from two comprehensive cancer centres, we identified patients with lymph node metastases after radical cystectomy who received an adequate lymph node dissection according to existing literature (resection of eight or more nodes). • Only patients who had not received neoadjuvant or adjuvant chemotherapy were included to ensure that prediction models were based on the natural course of the disease. • Thresholds for LND ranging from 5% to 35%, in 5% increments, were used to dichotomize the study population. Within each set of two groups, the Kaplan-Meier product-limit estimator was used to estimate disease-specific survival (DSS) for each group, and Cox proportional hazards regression was used to test the significance of differences in DSS between the group with higher LND and the group with lower LND. • Tables and graphs showing the relationship between LND categories and 2-year and 5-year estimated DSS were created to aid in clinical decision-making. RESULTS: • LND was valuable as a tool for stratifying node-positive patients into different risk groups based on expected survival. • At each LND threshold from 10% to 35%, patients with higher LND had significantly worse DSS than patients with lower LND (P ≤ 0.001). • As expected, DSS in the higher-LND group worsened with each 5% increase in LND threshold: patients with LND > 35% had a 5-year DSS rate of 4%. • Using our data as a tool, multiple cut-offs can be employed to categorize patients into various risk groups with different risk. For example, patients with LND ≤ 10% have an estimated 5-year DSS rate of 61.9%, whereas patients with LND > 15% have an estimated 5-year DSS rate of 19.2%. CONCLUSIONS: • Patients with node-positive bladder cancer have poor outcomes, and survival varies widely according to LND. • Categorical LND should be used to risk-stratify patients for counselling regarding prognosis. • Furthermore, categorical LND should be used as a tool for designing and reporting on clinical trials of adjuvant therapies.

Caring for the caregiver.

PURPOSE/OBJECTIVES: To describe the quality of life (QOL) and well-being of caregivers of patients receiving outpatient chemotherapy for leukemia and to identify strategies to promote the best possible QOL and well-being for the caregivers. DESIGN: Descriptive, cross-sectional study. SETTING: Ambulatory treatment center of a major comprehensive cancer center in the southern United States. SAMPLE: Convenience sample of 194 caregivers of patients receiving chemotherapy for leukemia. METHODS: Participants completed the Caregiver Quality-of-Life-Cancer Scale, the Caregiver Well-Being Scale, and the Learning Needs Questionnaire developed by the authors. Descriptive statistics were used to summarize the demographic characteristics of the caregivers, and exploratory factor analysis was performed to identify meaningful factors. MAIN RESEARCH VARIABLES: QOL, well-being, and learning needs. FINDINGS: Caregivers identified burden as their most important concern for QOL. Key factors identified with caregivers' well-being were expression of feelings and household maintenance. Caregivers identified giving medications and managing the side effects as crucial to learning needs. Communication, positive attitudes, support, and education were important in promoting QOL for the caregivers. CONCLUSIONS: Caregiving for a patient receiving chemotherapy for leukemia influences the QOL and well-being of the caregiver. IMPLICATIONS FOR NURSING: This study highlights the need for better nurse-caregiver communication and education, particularly in the areas of symptom management and medication administration. Additional research should focus on factors that affect caregivers' QOL, their educational needs, and improved interventions for delivering new information or reinforcing old information.

Predictors of inpatient mortality in an acute palliative care unit at a comprehensive cancer center.

GOALS OF WORK: Predicting inpatient mortality has clinical and financial implications and helps improve the care of patients with advanced cancer and their families. Models with excellent validity and reliability are available for mortality prediction in intensive care units. The purpose of the current study was to determine factors associated with increased likelihood of mortality in an acute palliative care unit (APCU). PATIENTS AND METHODS: We retrospectively reviewed the medical records of 500 patients admitted to the APCU. Basic characteristics and information on symptom intensity, vital signs, relevant laboratory tests, and the presence or absence of delirium were obtained from the records of the consultation that preceded the APCU admission. Univariate and multivariate analyses were conducted to compare characteristics of patients who died in the APCU with characteristics of those who were discharged alive. MAIN RESULTS: Of the 500 patients admitted to the APCU, 124 (25%) died. Factors that were jointly prognostic for death, using multivariate analysis were younger age (odds ratio [OR] for older patients [>/=65] 0.43, 95% confidence interval [CI], 0.25-0.73, p < 0.001), admission from another oncology floor (OR 5.64, 95% CI, 1.82-17.44, p = 0.003), hyponatremia (OR 3.02, 95% CI, 1.76-5.17, p < 0.001), hypernatremia (OR 4.14, 95% CI, 1.25-13.75, p = 0.020), high blood urea nitrogen (BUN) (OR 1.95, 95% CI, 1.15-3.30, p = 0.013), high heart rate (>/=101 bpm) (OR 1.72, 95% CI, 1.01-2.93, p = 0.047), high respiration rate (>/=21/min) (OR 1.67, 95% CI, 1.00-2.79, p = 0.048), and supplemental oxygen use (OR 2.69, 95% CI, 1.60-4.52, p < 0.001). CONCLUSIONS: We observed a significant association of certain factors with increased likelihood of APCU death in patients with advanced cancer. These findings need to be validated in a larger prospective study to develop a model for predicting APCU mortality for patients with advanced cancer.

Evaluation of intervention to prevent hypomagnesemia in cervical cancer patients receiving combination cisplatin and radiation treatment.

PURPOSE: The purpose of this study was to evaluate the impact of increasing the magnesium (Mg(2+)) supplementation in the pre- and posthydration of patients receiving cisplatin plus radiation (CisXRT) to prevent chemotherapy-induced hypomagnesemia (CIH) events. MATERIALS AND METHODS: The study was conducted on newly diagnosed cervical cancer patients receiving CisXRT. The first prospective intervention to prevent CIH was to increase the pre- and posthydration Mg(2+) from 1 to 2 g. After completion of the first intervention, the analysis demonstrated the persistent occurrence of CIH on cycle 3, and later, a second intervention was implemented to increase Mg(2+) to 3 g in the pre- and posthydration. Patients that failed to complete at least five cycles or received cisplatin in combination with another chemotherapy regimen were excluded from the study. Baseline group included 70 patients that had received CisXRT prior to any changes in magnesium supplementation. RESULTS: There were 62.8% (44/70) and 32.6% (22/70) of patients with episodes of CIH in the baseline and first intervention groups, respectively (P = 0.007). In the second intervention group, a 49.6% decrease in the total number of episodes compared to control group was observed. Patients in the second intervention group showed a 100% improvement incidence of persistent CIH over the two other cohorts (P = 0.001). CONCLUSIONS: The increase of Mg(2+) to 2 g for the initial two cycles and then to 3 g with the third cycle of CisXRT therapy prevented episodes of CIH and decreased associated treatment delays.

Use of palliative sedation for intractable symptoms in the palliative care unit of a comprehensive cancer center.

BACKGROUND: There is wide variation in the frequency of reported use of palliative sedation (PS) to control intractable and refractory symptoms in terminally ill patients. The aim of this study was to determine the frequency and outcomes of PS use and examine patterns of practice after establishment of a policy for the administration of midazolam for PS in our palliative care unit (PCU). MATERIALS AND METHODS: This retrospective study reviewed PCU admissions for 2004 and 2005 and pharmacy records to identify patients who received chlorpromazine, lorazepam, or midazolam for PS in the PCU. Data on indication for PS, drug used, and discharge outcome were assessed for each patient. RESULTS: During the period studied, there were 1,207 PCU admissions. Of these patients, 186 (15%) received PS; and 143 (41%) of the 352 patients who died in the PCU received PS. The median age of PS patients was 58 (range, 20-84) years, and 106 (57%) were male. The most common indications for PS were delirium, 153 cases (82%); dyspnea, 11 (6%); and multiple indications, 12 (6%). Midazolam was used in 18 PS cases (10%). Six (55%) of 11 patients with dyspnea received midazolam for PS, compared with 12 (7%) of 175 patients with other indications for PS (p < 0.001). Forty-three (23%) of 186 PS patients were discharged alive, compared with 812 (80%) of 1,021 patients who did not receive PS (p < 0.001). CONCLUSIONS: PS was required in 15% of PCU admissions, and 23% of PS patients were discharged alive. Our findings suggest a potential for significant underreporting of overall PS. If our institution's policy on midazolam use for PS were less restrictive, midazolam use might increase. More research is needed to define the optimal agent for inducing rapid, effective, and easily reversible PS.

The cancer pain experience of Israeli and American patients 65 years and older.

With the aging of the world's population, cancer pain will become an increasingly important health issue. The purpose of this study was to describe the cancer pain experience of Americans (n = 60) and Israelis (n = 39) 65 years and older. Outpatients in teaching hospitals in the U.S. and in Israel completed study questionnaires. Thirty percent of the total variance of worst pain was explained by age, symptom severity, and cancer stage, and 40% of the total variance of pain interference was explained by whether they were American or Israeli, symptom severity, and sense of coherence. Israeli patients had significantly higher scores on worst pain and pain interference, and significantly lower pain management index (PMI) and knowledge and attitudes toward pain and pain control scores. Studies with larger samples and across different cultures are needed to confirm these findings in order to develop culturally appropriate interventions.

Delphi survey of nursing research priorities.

PURPOSE/OBJECTIVES: To identify oncology nurses priorities for topics and issues to be addressed by developing a clinical nursing research program at a large comprehensive cancer center. DESIGN: Delphi survey, completed in two rounds. SETTING: A large comprehensive cancer center in the southern United States. SAMPLE: All 1,500 RNs employed at the cancer center. Round I asked nurses to identify topics they believed needed to be studied, and 642 nurses responded. In round II, 567 nurses ranked these priorities. METHODS: Surveys were distributed to all nurses who work in a variety of settings at the cancer center. Open-ended responses from round I were content analyzed, round II rankings of importance were described, and factor analysis was performed. MAIN RESEARCH VARIABLES: 120 topics were identified from a content analysis of research areas described by nurses in the cancer center. FINDINGS: 120 research priorities were identified. Factor analysis revealed three factors: clinical care, nurses and skills, and administrative aspects. CONCLUSIONS: The top five research priorities identified at the cancer center were, in rank order, acute and chronic pain, infection rates and control, job satisfaction, nurse-patient ratios and staffing, and nurse retention. This study's survey included items similar to those on the recently conducted Oncology Nursing Society research priority survey. Pain and issues with infection were among the top five priorities in both surveys. IMPLICATIONS FOR NURSING: Conducting a survey to identify nurses perceptions of research was useful in involving nurses in the conduct of research, and the results were useful guides to beginning a coordinated program of nursing research.

The activity of taxanes in the treatment of sex cord-stromal ovarian tumors.

PURPOSE: To determine the efficacy and side effects of taxanes, with or without platinum, for the treatment of sex cord-stromal tumors of the ovary. PATIENTS AND METHODS: We conducted a retrospective review of all patients seen from 1985 to 2002 at The University of Texas M.D. Anderson Cancer Center with ovarian sex cord-stromal tumors. Eligible patients underwent pathology confirmation and clinical evaluation at M.D. Anderson and received a taxane for initial or recurrent disease. RESULTS: Of 222 patients identified, 44 were eligible for analysis. For nine patients treated in the first-line adjuvant setting, median progression-free survival (PFS) was not reached at 51 months. Of two patients treated for measurable disease in the first-line setting, one had a complete response. Median PFS was 34.3 months; median overall survival (OS) was not reached. Median follow-up was 90.3 months (range, 39.4 to 140.5 months). Response rate for 30 patients treated with a taxane +/- platinum for recurrent, measurable disease was 42%. Median PFS was 19.6 months; median OS was not reached. Median follow-up was 100.7 months (range, 8.1 to 361.3 months). The presence of platinum correlated with response in the recurrent, measurable disease setting. The number of patients was insufficient to detect relative efficacy of paclitaxel and docetaxel. Adverse effects of paclitaxel included neutropenia (n = 6), anemia (n = 1), thrombocytopenia (n = 1), myelodysplasia (n = 1), and hypersensitivity (n = 1). CONCLUSION: Taxanes seem to be active agents in the treatment of patients with sex cord-stromal tumors of the ovary. The combination of taxanes with platinum in the treatment of this disease deserves additional investigation.