Jane R. Schubart

Caring for the brain tumor patient: Family caregiver burden and unmet needs

The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.

Implementation of an institutional program to improve clinical and financial outcomes of mechanically ventilated patients: one-year outcomes and lessons learned.

ObjectiveTo determine the effect of an institutional approach to the care of patients requiring mechanical ventilation for longer than three consecutive days in five adult intensive care units (ICU) on clinical and financial outcomes. DesignA multidisciplinary team was selected from five adult ICUs to design the approach. Planning occurred from August 1999 to September 2000. The process was called outcomes management (OM) and included an evidence-based clinical pathway, protocols for weaning and sedation use, and the selection of four advanced practice nurses (called outcomes managers) to manage and monitor the program. SettingThe project was completed in a 550-bed mid-Atlantic academic medical center. The ICUs included the following: coronary care, medical ICU, neuroscience ICU, surgical trauma ICU, and thoracic cardiovascular ICU. PatientsThe sample included 595 pre-OM patients and 510 post-OM patients mechanically ventilated for greater than three consecutive days. InterventionsFull implementation of the OM approach occurred in March 2001. Retrospective baseline (18 months pre-OM) and prospective (12 months OM) clinical and financial data were compared. Measurements and Main ResultsStatistically significant differences in clinical outcomes were demonstrated in the managed patients compared with those managed before the institutional approach. Outcomes include ventilator duration (median days declined from ten to nine; p = .0001), ICU length of stay (median days declined from 15 to 12; p = .0008), hospital length of stay (median days declined from 22 to 20; p = .0001), and mortality rate (declined from 38% to 31%, p = .02). More than

Assessing medical residents’ usage and perceived needs for personal digital assistants

3,000,000 cost savings were realized in the OM group. ConclusionsThis institutional approach to the care of patients ventilated >3 days improved all clinical and financial outcomes of interest. To date, few similar initiatives have demonstrated similar results. The approach and lessons learned in this process improvement project may be helpful to other institutions attempting to improve outcomes in this vulnerable population.

Practices Associated with Weight Loss Versus Weight-Loss Maintenance Results of a National Survey

Health care professionals need information delivery tools for accessing information at the point of patient care. Personal digital assistants (PDAs), or hand-held devices demonstrate great promise as point of care information devices. An earlier study [The Constellation Project: experience and evaluation of personal digital assistants in the clinical environment, in: Proceedings of the 19th Annual Symposium on Computer Applications in Medical Care, 1995, 678] on the use of PDAs at the point of care found that hardware constraints, such as memory capability limited their usefulness, however, they were used frequently for accessing medical references and drug information [The Constellation Project: experience and evaluation of personal digital assistants in the clinical environment, in: Proceedings of the 19th Annual Symposium on Computer Applications in Medical Care, 1995, 678]. Since this study was completed in 1995, hand-held computer technology has advanced rapidly, and between 26 and 50% of physicians currently use PDAs [Physicians use of hand-helds increases from 15% in 1999 to 26% in 2001: Harris interactive poll results, Harris Poll. 8-24-2002 (electronic citation); ACP-ASIM survey finds nearly half of U.S. members use hand-held computers: ACP-ASIM press release, American College of Physicians, 9-3-2002 (electronic citation)]. This use appears higher among residents, with one recent study finding that over two-thirds of family practice residencies use hand-held computers in their training programs [J. Am. Med. Inform. Assoc. 9 (1) (2002) 80]. In this study, we systematically evaluate PDA usage by residents in our institution using quantitative and qualitative methods. Our evaluation included a brief on-line survey of 88 residents in seven residency programs including primary care and specialty practices. The surveys were completed between 26 October 2001 and 30 April 2002. Follow-up interviews with 15 of the surveyed residents were then conducted between 24 April 2002 and 13 May 2002. The original contributions of this study are the evaluation of residents in primary and specialty programs and evaluation of both medical application software and the conventional personal organizational software (such as calendars and to-do lists). This evaluation was also conducted using significantly advanced hardware and software compared with previous studies [The Constellation Project: experience and evaluation of personal digital assistants in the clinical environment, in: Proceedings of the 19th Annual Symposium on Computer Applications in Medical Care, 1995, 678]. Results of our survey and follow-up interviews of residents showed most residents use PDAs daily, regardless of practice or whether their program encourages PDAs. Uses include commercial medical references and personal organization software, such as calendars and address books. Concerns and drawbacks mentioned by these residents included physical size of the PDA and the potential for catastrophic data loss. Another issue raised by our results suggests that security and Health Information Portability and Accountability Act (HIPAA) compliance need to be addressed, in part by resident education about securing patient data on PDAs. Overall, PDAs may become even more widely used if two issues can be addressed: (a) providing secure clinical data for the current patients of a given resident, and (b) allaying concerns of catastrophic data loss from their PDAs (e.g. by educating residents about procedures to recover information from PDA backup files).

Evaluation of a data warehouse in an academic health sciences center.

BACKGROUND Few studies have examined the weight-control practices that promote weight loss and weight-loss maintenance in the same sample. PURPOSE To examine whether the weight control practices associated with weight loss differ from those associated with weight-loss maintenance. METHODS Cross-sectional survey of a random sample of 1165 U.S. adults. The adjusted associations of the use of 36 weight-control practices in the past week with success in weight loss (≥10% lost in the past year) and success in weight-loss maintenance (≥10% lost and maintained for ≥1 year) were examined. RESULTS Of the 36 practices, only 8 (22%) were associated with both weight loss and weight-loss maintenance. Overall, there was poor agreement (kappa=0.22) between the practices associated with weight loss and/or weight-loss maintenance. For example, those who reported more often following a consistent exercise routine or eating plenty of low-fat sources of protein were 1.97 (95% CI=1.33, 2.94) and 1.76 (95% CI=1.25, 2.50) times more likely, respectively, to report weight-loss maintenance but not weight loss. Alternatively, those who reported more often doing different kinds of exercises or planning meals ahead of time were 2.56 (95% CI=1.44, 4.55) and 1.68 (95% CI=1.03, 2.74) times more likely, respectively, to report weight loss but not weight-loss maintenance. CONCLUSIONS Successful weight loss and weight-loss maintenance may require two different sets of practices. Designing interventions with this premise may inform the design of more effective weight-loss maintenance interventions.

Psychotropic medication trends among children and adolescents with autism spectrum disorder in the Medicaid program

OBJECTIVES The Clinical data repository (CDR) at the University of Virginia Health System is a data warehouse that provides direct access to data for clinical research and effective decision making. We undertook an evaluation of the CDR to understand factors affecting its adoption. DESIGN We used a theoretical framework that is based on diffusion of innovation theory. Building on validated survey instruments, we developed a questionnaire and conducted interviews of key executive leaders. Fifty-three individuals with logon ids to the CDR completed our questionnaire. Twelve executive leaders were interviewed. MEASUREMENTS The outcome variables were the initial and continued use of the CDR. Independent variables included attributes suggested by diffusion theory (i.e. relative advantage, complexity), knowledge and skills expected to correlate with computer usage, and the influence of communication channels. RESULTS Our overall response rate was 82%. We identified characteristics of users associated with the initial decision to use the CDR. Compatibility with an individuals skills and work style was associated strongly with satisfaction and continued use. Secondly, the importance of organizational culture and the need for data was illuminated by management interviews. CONCLUSIONS We have shown that diffusion of innovation theory can be used to help understand factors contributing to the success of a data warehouse in a healthcare setting. Our results suggest areas for future research and inquiry as the CDR evolves.

Cost-effectiveness of the National Surgical Quality Improvement Program.

This study characterized psychotropic medication use among Medicaid-enrolled children and adolescents with autism spectrum disorders by examining trends over time, including length of treatment and polypharmacy using 4 years of administrative claims data from 41 state Medicaid programs (2000–2003). The data set included nearly 3 million children and adolescents who were 17 years or younger. Approximately, 65% of children with autism spectrum disorder received a psychotropic medication. The results indicate an increasing overall trend in the use of psychotropic drugs among children and adolescents with autism spectrum disorders. Among the different classes of psychotropic drugs, antipsychotics were the most common. Increasing trends in polypharmacy were observed both within and between medication classes.

Pressure ulcer prevention and management in spinal cord-injured adults: analysis of educational needs.

Objective:The purpose of this study was to compare the cost-effectiveness of the National Surgical Quality Improvement Program (NSQIP) at an academic medical center between the first 6 months and through the first and second years of implementation. Background:The NSQIP has been extended to private-sector hospitals since 1999, but little is known about its cost-effectiveness. Methods:Data included 2229 general or vascular surgeries, 699 of which were conducted after NSQIP was in place for 6 months. We estimated an incremental cost-effectiveness ratio (ICER) comparing costs and benefits before and after the adoption of NSQIP. Costs were estimated from the perspective of the hospital and included hospital costs for each admission plus the total annual cost of program adoption and maintenance, including administrator salary, training, and information technology costs. Effectiveness was defined as events avoided. Confidence intervals and a cost-effectiveness acceptability curve were computed by using a set of 10,000 bootstrap replicates. The time periods we compared were (1) July 2007 to December 2007 to July 2008 to December 2008 and (2) July 2007 to June 2008 to July 2008 to June 2009. Results:The incremental costs of the NSQIP program were

The Effects of Race and Ethnicity on Thyroid Cancer Incidence

832 and

Cancer Survivorship: A New Challenge for Surgical and Medical Oncologists

266 for time periods 1 and 2, respectively, yielding ICERs of