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Sara L Douglas

Publications and source records attributed to Sara L Douglas.

10 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↗
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↗
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↗
PubMedDate not supplied

Research partners: two teams, one study population.

BACKGROUND: Two large research projects funded by the National Institutes of Health, the Disease Management project and the Thrive study, which examine different phenomena in the chronically critically ill population, have combined research teams. Each study has its own project manager and maintains a separate database and budget. Operational tasks for both grants are streamlined through the collaboration and cross-training of all team members. METHODS: The Disease Management project is a randomized clinical trial testing the effectiveness of a care program in improving outcomes for chronically critically ill patients and their caregivers during the first 2 months after discharge. The Thrive study is a prospective longitudinal investigation that aims to describe the weaning patterns of chronically critically ill patients as well as the patterns of illness-related variables. RESULTS: To date, many participants (n = 400) have been enrolled in each study. The results of both studies will be available through future publications. CONCLUSIONS: Although much information has been gleaned from gathering longitudinal data across one study population and examining two rich data sets, there are some limitations to this collaboration.

Chronic Disease↗
PubMedDate not supplied

Use of advance directives in the chronically critically ill.

Although it would be ideal that all patients have the presence of an advance directive documented in their medical chart, it is especially important in the chronically critically ill, a patient population with an in-hospital mortality rate of 40%. How has the documentation of advance directives in the medical chart of chronically critically ill patients changed from 1997 to 2003? This article describes the patient characteristics and patterns of death in chronically critically ill patients, with or without an advance directive, enrolled in 2 consecutive studies.

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