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Barbara J Daly

Publications and source records attributed to Barbara J Daly.

At least 19 recordsLinked to original sources
PubMed2007

Psychosocial registry for persons with cancer: a method of facilitating quality of life and symptom research.

Research focused on the psychosocial aspects of the experience of persons with cancer and their family caregivers is hampered by the methodological challenges inherent in quality of life research. A data registry offers a potential solution to many of these problems in providing a large, comprehensive database, using standardized instruments. We report here our preliminary experience with establishing a Psychosocial Registry designed to advance research in the psychological, social, and spiritual aspects of quality of life of newly diagnosed cancer patients and their family caregivers. The first six months of enrollment demonstrated that the majority of newly diagnosed patients approached for consent (68%) and their primary family caregiver (92%) were willing to participate in the registry; of these, 80% also agreed to be contacted in the future for additional studies. Face-to-face interview was the preferred method of data collection. Our preliminary experience suggests that continuation of the registry with the current modest level of resources would generate a sample of approximately 1000 patients in three years. The long-range goal is to establish a national psychosocial data registry that will enroll patients at diagnosis and follow them through the entire cancer experience, including end of life or survivorship.

Aged↗
PubMed2006

Gynecologic oncology patients' satisfaction and symptom severity during palliative chemotherapy.

BACKGROUND: Research on quality and satisfaction with care during palliative chemotherapy in oncology patients has been limited. The objective was to assess the association between patient's satisfaction with care and symptom severity and to evaluate test-retest of a satisfaction survey in this study population. METHODS: A prospective cohort of patients with recurrent gynecologic malignancies receiving chemotherapy were enrolled after a diagnosis of recurrent cancer. Patients completed the Quality of End-of-Life care and satisfaction with treatment scale (QUEST) once upon enrollment in an outpatient setting and again a week later. Patients also completed the Mini-Mental Status Exam, the Hospital Anxiety/Depression Scale, a symptom severity scale and a demographic survey. Student's t-test, correlation statistics and percent agreement were used for analysis. RESULTS: Data from 39 patients were analyzed. Mean (SD) quality of care summary score was 41.95 (2.75) for physicians and 42.23 (5.42) for nurses (maximum score was 45; p = 0.76 for difference in score between providers). Mean (SD) satisfaction of care summary score was 29.03 (1.92) for physicians and 29.28 (1.70) for nurses (maximum score was 30; p = 0.49 for difference between providers). Test-retest for 33 patients who completed both QUEST surveys had high percent agreement (74-100%), with the exception of the question regarding the provider arriving late (45 and 53%). There was no correlation between quality and satisfaction of care and symptom severity. Weakness was the most common symptom reported. Symptom severity correlated with depression (r = 0.577 p < 0.01). There was a trend towards a larger proportion of patients reporting pain who had three or more prior chemotherapy regimens (p = 0.075). Prior number of chemotherapy regimens or time since diagnosis was not correlated with symptom severity score. Anxiety and depression were correlated with each other (r = 0.711, p < 0.01). There was no difference in symptom severity score at enrollment between those patients who have since died (n = 19) versus those who are still alive. CONCLUSION: The QUEST Survey has test-retest reliability when used as a written instrument in an outpatient setting. However, there was no correlation between this measure and symptom severity. Patient evaluation of care may be more closely related to the interpersonal aspects of the health care provider relationship than it is to physical symptoms.

Aged↗
PubMed2006

Assessing nutritional status in chronically critically ill adult patients.

BACKGROUND: Numerous methods are used to measure and assess nutritional status of chronically critically ill patients. OBJECTIVES: To discuss the multiple methods used to assess nutritional status in chronically critically ill patients, describe the nutritional status of chronically critically ill patients, and assess the relationship between nutritional indicators and outcomes of mechanical ventilation. METHODS: A descriptive, longitudinal design was used to collect weekly data on 360 adult patients who required more than 72 hours of mechanical ventilation and had a hospital stay of 7 days or more. Data on body mass index and biochemical markers of nutritional status were collected. Patients' nutritional intake compared with physicians' orders, dieticians' recommendations, and indirect calorimetry and physicians' orders compared with dieticians' recommendations were used to assess nutritional status. Relationships between nutritional indicators and variables of mechanical ventilation were determined. RESULTS: Inconsistencies among nurses' implementation, physicians' orders, and dieticians' recommendations resulted in wide variations in patients' calculated nutritional adequacy. Patients received a mean of 83% of the energy intake ordered by their physicians (SD 33%, range 0%-200%). Patients who required partial or total ventilator support upon discharge had a lower body mass index at admission than did patients with spontaneous respirations (Mann-Whitney U = 8441, P = .001). CONCLUSIONS: In this sample, the variability in weaning progression and outcomes most likely reflects illness severity and complexity rather than nutritional status or nutritional therapies. Further studies are needed to determine the best methods to define nutritional adequacy and to evaluate nutritional status.

Adult↗
PubMed2005

Futility: clinical decisions at the end-of-life in women with ovarian cancer.

OBJECTIVE: The purpose of this article is to provide a review of the clinical meaning of futility, discuss current normative uses of futility assessments and propose guidelines for clinicians to use in dialogue regarding treatment decisions for patients with advanced ovarian cancers. METHODS: We performed a MEDLINE literature search of relevant clinical articles for this review that discussed futility and the application to women with ovarian cancer. RESULTS: Medical futility refers to treatments that serve no physiologic, quantitative or qualitative meaningful purpose. Despite the growth in options focused on symptom management rather than disease eradication, including hospice programs and the more recent development of palliative care programs, there is evidence that many patients continue to receive aggressive interventions, including chemotherapy, until days before their death. While the legal and moral acceptability of treatment limitation is well established, clarity in establishing goals of care, timing of the transition from cure to palliation and communication of specific decisions to withhold further aggressive interventions remain problematic for both patients and clinicians. CONCLUSIONS: There continues to be a distinct need for both better understanding of the dynamics of patient choice and increased education of physicians in addressing end-of-life care planning. It is essential that we continue to test specific communication and supportive interventions that will improve our ability to help patients avoid the burden of futile therapy while maintaining hope.

Female↗
PubMed2005

Benefits and challenges in developing a program of research.

The ultimate goals of nursing research are knowledge generation and improvement in nursing practice. Designing studies that provide the evidence needed for practice change and that have clear implications for immediate application to current practice environments is particularly challenging. Research programs that consist of sequential studies, each building on and expanding on the results of the previous work, offer the greatest promise for generating understanding of the human phenomenon relevant to nursing practice. The authors review their experience with a series of studies of inpatient and postdischarge needs and interventions associated with chronic critical illness to illustrate the benefits of developing a longitudinal research program as well as the importance of strategies that will foster application of results. Recommendations for developing such a program are discussed.

Chronic Disease↗
PubMed2005

Trial of a disease management program to reduce hospital readmissions of the chronically critically ill.

BACKGROUND: Patients requiring prolonged periods of intensive care and mechanical ventilation are termed chronically critically ill. They are prone to continued morbidity and mortality after hospital discharge and are at high risk for hospital readmission. Disease management (DM) programs have been shown to be effective in improving both coordination and efficiency of care after hospital discharge for populations with single-disease diagnoses, but have not been tested with patients with multiple-disease diagnoses, such as the chronically critically ill. STUDY OBJECTIVES: To test the effect of a DM program on hospital readmission patterns of chronically critically ill patients during the first 2 months after hospital discharge and to estimate the cost-effectiveness of the DM program. DESIGN: Randomized, controlled trial. SETTING: Academic medical center, extended care facilities, and participant homes. PARTICIPANTS: Three hundred thirty-four consenting adults from one academic medical center who underwent > 3 days of mechanical ventilation and survived to hospital discharge. INTERVENTION: Two hundred thirty-one patients in the experimental group received care coordination, family support, teaching, and monitoring of therapies from a team of advanced-practice nurses, a geriatrician, and a pulmonologist for 2 months post-hospital discharge. MEASUREMENTS: Rehospitalization rate, time-to-first rehospitalization, duration of rehospitalization, mortality during rehospitalization, and associated costs. RESULTS: Patients who received DM services had significantly fewer mean days of rehospitalization (11.4; 95% confidence interval [CI], 9.3 to 12.6) compared with the control group (16.7 days; 95% CI, 12.5 to 21.0; p = 0.03). There were no other significant differences between experimental and control groups, although all measures of rehospitalization risk for the experimental group were in a positive direction. Total cost savings associated with the intervention were approximately $481,811 for the 93 subjects who were readmitted to the hospital. CONCLUSIONS: Chronic critical illness may have a natural trajectory of continued morbidity following hospital discharge that is not affected by the provision of additional care coordination services. Nevertheless, given the high cost of rehospitalization and the additional burden it imposes on patients and families, interventions that can reduce the duration of rehospitalization are cost-effective and merit continued testing.

Chronic Disease↗
PubMed2005

Impact of a disease management program upon caregivers of chronically critically ill patients.

OBJECTIVES: Few studies have examined the effects of caregiving on the caregivers of chronically critically ill (CCI) patients, and no one has examined the impact of a disease management program (DMP) on physical and psychological outcomes for the caregivers of CCI patients. The purposes of this study of caregivers of CCI patients were as follows: (1) to describe the characteristics of CCI patients and caregivers and to examine the frequency of depression, subjective burden, and physical health; (2) to examine factors related to depression after hospital discharge; and (3) to examine the effects of a DMP on the physical health, depression, and burden of caregivers 2 months post-hospital discharge. DESIGN: Prospective experimental design. SETTING AND PARTICIPANTS: Caregivers of 290 patients who had received > 3 days of mechanical ventilation while in the ICU of a university medical center. MEASUREMENTS: Sociodemographics, caregiver burden, physical health status, and depression were measured using established tools. RESULTS: Interviews of caregivers were conducted at hospital discharge and 2 months later. Seventy-three percent of patients survived, completed the study period, and required caregiving 2 months later. Caregivers of patients residing in an institution reported higher depression (p = 0.0001), higher burden (ie, disrupted schedule, p = 0.0001; lack of family support, p = 0.036), and greater health problem scores (p = 0.0001) than did caregivers of patients residing at home. The DMP did not have a statistically significant impact on any of the outcome variables. However, by 2 months, 54% of caregivers in the experimental group had no depression or mild depression compared with 34.5% of the control group. CONCLUSION: Two months after hospital discharge, approximately 25% of caregivers were classified as depressed with 16.7% of the depressed group classified as moderately or severely depressed. The caregivers of CCI patients are at risk for post-hospital discharge depression, and the caregivers of institutionalized CCI patients are at highest risk of long-term negative effects from caregiving.

Adult↗
PubMed2004

Clinical evaluation and patterns of chemotherapy-induced peripheral neuropathy.

PURPOSE: To determine the pattern of change in peripheral nerve function (as measured by vision, hearing, deep tendon reflexes, vibratory sense, cutaneous sensation, gait and balance, muscle strength, and orthostatic blood pressure) occurring among individuals receiving cancer treatment with known neurotoxic agents. DATA SOURCES: A convenience sample of 16 participants with cancer who were receiving chemotherapy had their peripheral nerve function assessed at baseline and at 4 weeks and 12 weeks of treatment. Data were analyzed using plots and regression slopes to determine change over time in clinical measures of peripheral nerve function. Outcome variables were vision, hearing, deep tendon reflexes, vibratory sense, cutaneous sensation, gait and balance, muscle strength, and changes in orthostatic blood pressure. CONCLUSIONS: This is the first prospective study to use comprehensive clinical measures of peripheral nerve and muscle changes resulting from combination chemotherapy or a biotherapy regimen. Alterations in vision, hearing, deep tendon reflexes, vibratory sense, cutaneous sensation, balance, muscle strength, and orthostatic blood pressure were noted, but gait remained unchanged. IMPLICATIONS FOR PRACTICE: This study provides beginning evidence of the need for careful, ongoing assessment of treatment-induced peripheral neuropathy. Standardized clinical practice procedures that incorporate patient evaluation for peripheral neuropathy must still be developed. In addition, we must educate our patients about the functional changes they may expect, and we must develop strategies to assist them in managing limitations that they experience as a result of peripheral neuropathy.

Adult↗
PubMed2004

Uncertainty and its antecedents in patients with atrial fibrillation.

The aim of this descriptive, correlational, and cross-sectional survey was to explore uncertainty in patients with atrial fibrillation and to examine the relationships between uncertainty and its antecedents, including education, social support, and perceived seriousness of illness in patients newly diagnosed with atrial fibrillation. The theoretical framework of the study was Mishel's middle-range nursing theory of uncertainty in illness. A convenience sample of 81 participants recruited from two academic medical centers over 10 months was interviewed. Uncertainty was moderately high in patients with atrial fibrillation compared to other clinical populations. Among antecedents of uncertainty, higher education was significantly associated with less uncertainty (beta = -.21 to -.25). Except for tangible support, persons with greater social supports perceived less uncertainty (beta= -.25 to -.27), and individuals with greater perceived seriousness of illness reported greater uncertainty (beta= .30 to .33).

Academic Medical Centers↗
PubMed2003

Maximizing benefits and minimizing risks in health services research near the end of life.

This article explores the ethical issues specific to Health Services Research (HSR) in palliative care, with particular attention to similarities and differences between HSR and institutional quality improvement (QI) initiatives. We focus on the challenges of determining what level of protection is warranted by investigations of health services and programs of care, in contrast to the traditional randomized clinical trial design, and how best to assure subject protection. A decision algorithm regarding the requirements for full IRB review and informed consent is proposed as a mechanism to assure that the level of protection is commensurate with the level of risk.

Ethics, Research↗
PubMed2003

Caregivers of long-term ventilator patients: physical and psychological outcomes.

STUDY OBJECTIVES: The physical and psychological effects of caregiving have been examined in several populations. To date, no one has examined the effects of caregiving on caregivers of patients receiving long-term mechanical ventilation (LTV) [patients who required > 4 days of continuous in-hospital mechanical ventilation] who reside in a home or institutional setting after hospital discharge. The purpose of this study was to describe the characteristics and examine depression, burden, overload, and physical health in this caregiver population over a 6-month period after hospital discharge. DESIGN: This was a prospective longitudinal descriptive study of posthospital outcomes for patients receiving LTV and their caregivers. SETTING AND PARTICIPANTS: Caregivers of 135 patients receiving LTV admitted to the ICUs of a university medical center, a Veterans Administration hospital, and small community hospital were enrolled. MEASUREMENTS AND RESULTS: Interviews of caregivers were conducted at hospital discharge and 6 months later. Descriptive statistics, analysis of variance, and multiple regression analyses were used to analyze the data. Established tools were used to assess caregiver depression, burden, overload, and physical health. Caregivers reported a drop in physical health scores from hospital discharge to 6 months after discharge (p = 0.0001). Caregivers of patients residing in an institution reported higher depression (p = 0.039) and overload scores (p = 0.002) than did caregivers of patients residing at home 6 months after discharge; 51.2% of caregivers at discharge and 36.4% at 6 months after discharge reported symptoms consistent with some degree of depression. In addition, 12.2% of caregivers at hospital discharge and 15.6% at 6 months after discharge were classified as having symptoms consistent with severe depression. Caregiver physical health (p = 0.025) and overload (p = 0.006) made statistically significant contributions to explaining caregiver depression. CONCLUSIONS: Caregivers of patients receiving LTV in our sample have similar characteristics to other caregiving populations. However, our sample had higher depression scores than those reported for many other caregiver groups.

Adult↗
PubMed2002

Survival and quality of life: short-term versus long-term ventilator patients.

OBJECTIVE: Examine postdischarge mortality, quality of life, and charges for care for short-term (>24 and 96 hrs) ventilator patients. DESIGN: Prospective longitudinal descriptive study. SETTING: Posthospital discharge follow-up in homes, nursing homes, and rehabilitation centers. PATIENTS: Intensive care unit patients who required >24 hrs of continuous in-hospital mechanical ventilation were enrolled from February 1997 through March 1999. Patients living to hospital discharge were followed for 1 yr postdischarge. INTERVENTIONS: None. MEASUREMENTS AND RESULTS: A total of 538 patients were studied. In-hospital mortality was 47.4%, with a 1-yr mortality rate of 64.7%; survival analysis showed that the different survival risks for short-term and long-term ventilator patients over time were not statistically significant. Long-term patients were more likely to be discharged to a nursing home (45.2%). Short-term ventilator patients had better overall quality of life at all points postdischarge. Charges to produce a long-term survivor were significantly higher than for short-term patients; on average $86,360 more charges were required to produce a long-term ventilator patient survivor for 1 yr postdischarge. CONCLUSIONS: There were no significant demographic or clinical differences between short-term and long-term ventilator patients. Our results suggest that the likelihood of need for continued care in an extended-care facility for months and the risk of death during the first year postdischarge are sufficiently common features of this population and need to be included in discussions of treatment options with patients and their families.

Aged↗
PubMed2002

Nurse practitioners and preventive screening in the hospital.

The purpose of this study was to investigate a reminder to discuss cervical cancer screening with hospitalized females. A quasi-experimental design was used to compare the association of a reminder intervention for nurse practitioners with two outcomes: prevalence of cervical cancer screening as documented in patients' charts and patients' self-report of cervical cancer screening 4 months after discharge. Data were collected by chart review and phone survey. The sample consisted of nurse practitioners caring for eligible female patients at a university teaching hospital. Chi-square was used to test all research questions. The rate of documentation of cervical cancer screening increased from 2% to 69% after implementation of the reminder intervention. The reminder intervention did not impact patients actually receiving Pap smears after discharge. The significant increase in documentation of screening associated with the use of the single reminder in the patients' charts support the use of this low-cost intervention.

Adolescent↗