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Transition to adult care for adolescents with sickle cell disease: results of a national survey.

The objective was to present the 'voice' of adolescents with sickle cell disease (SCD) as part of the discussion of transition issues by identifying and documenting their expressed concerns and expectations, as well as what program priorities they perceive would facilitate a smooth transition to adult care. Cross-sectional data were collected by means of structured questionnaire interviews, using standard instruments. A volunteer sample of 172 adolescents with SCD aged 14 years and older still in pediatric care within community-based and medical center SCD programs across the United States was recruited. Statistically significant results indicated the top concerns of adolescents were: lack of information relating to their transition to adult care; fear of leaving the healthcare provider with whom they were already familiar, fear that adult care providers might not understand their needs; belief that an SCD transition program was needed and that it should focus on provider support; information provision about adult care programs; ways to meet adult care providers; and ways to help healthcare providers understand their needs. We conclude that many adolescents with SCD have concerns and fears about their transition to adult care. Based on findings from this study, it is recommended that transition programs address structural and interpersonal issues of adolescents and providers if they are to be successful. Strategies by which this can be achieved are recommended, including the need to encourage, support and provide assistance for peer education, outreach programs and peer-led instructions, since these hold great promise as approaches that are adolescent-centered and adolescent-delivered.

Adolescent↗

In defense of a department of geriatrics.

Departmental status for geriatrics offers many advantages, all of which are related to strengthening academic and clinical programs in aging. The training programs and the content of medical school curriculum in geriatrics remain inadequate under the current structures. A department of geriatrics can provide a stronger faculty base and allow effective interaction with other departments (including but not limited to internal medicine) that need geriatric training. A department of geriatrics also focuses on a model of care that involves working closely with other disciplines, such as nursing and social work. This interdisciplinary model helps expert providers work efficiently throughout the spectrum of care, strengthening continuity. The department can include other medical specialists, such as family practitioners, psychiatrists, and physiatrists, who work with caregivers and patients throughout a course of treatment to manage chronic illness and help maintain and enhance function and independence as long as possible. Comprehensive care and proper care management also substantially benefit institutions by expanding the patient population, reducing length of stay, and avoiding unnecessary hospitalization of older patients through effective discharge planning and transitional care. This requires strong relationships with long-term care providers, a characteristic strength of geriatricians. Although not all research in aging needs to be housed in a department of geriatric medicine, the presence of a critical mass of basic and clinical researchers creates an environment that can stimulate new initiatives and attract external funding. Additional research bridging basic translational and clinical phases relevant to the elderly population is best encouraged by maintaining relationships with other basic science and clinical departments.

Academic Medical Centers↗

High-risk pregnancy: postpartum rehospitalization.

OBJECTIVE: Examine frequency, timing, and reasons for maternal postpartum rehospitalizations and acute care visits 1 year postpartum after a high-risk pregnancy. STUDY DESIGN: Secondary analysis of data collected during a randomized clinical trial of advanced practice nurses gives transitional care for women with high-risk pregnancies. The 171 women were primarily African American, never married, Medicaid eligible, diagnosed with pregestational diabetes (20), gestational diabetes (23), either diagnosed (48) or at risk (44) for preterm labor, and chronic hypertension (36). RESULTS: Of the total rehospitalizations (17%) and acute care visits (32%), over one third occurred in the first 8 weeks postpartum. Chronic hypertensives and gestational diabetics had the highest rate of rehospitalization and proportion of acute care visits. Six women were rehospitalized for subsequent pregnancies. CONCLUSION: Women with high-risk pregnancies have continued high health care resource use over the first postpartum year demonstrating the need for more intensive patient education and follow-up to improve outcomes and reduce resource use.

Adult↗

Access to health care for young adults with disabling chronic conditions.

OBJECTIVE: To assess health insurance status and health care access of young adults with disabilities attributable to a chronic condition. DESIGN AND SETTING: We analyzed data from the National Health Interview Survey from 1999 to 2002. We present bivariate analysis and multiple logistic regression of reported health care access barriers in the United States stratified by health insurance status. PARTICIPANTS: The study population included 1109 survey respondents with and 22 481 without disabling chronic conditions, aged 19 to 29 years. MAIN OUTCOME MEASURES: Delayed or unmet health needs owing to cost, no contact with a health professional in the prior year, and no usual source of care. RESULTS: Thirty-five percent of respondents with and 15% without disabling chronic conditions reported an unmet health care need owing to cost (P< .001). Uninsurance rates for young adults with and without disabling chronic conditions were similar (26% vs 28%, respectively), and uninsurance was significantly associated with unmet health care needs. More than two thirds of uninsured respondents with a disabling chronic condition reported an unmet health need and 45% reported no usual source of care. After adjusting for sociodemographic factors, uninsured young adults with disabling chronic conditions had 8 times greater odds of reporting unmet health care needs and 6 times greater odds of having no usual source of care relative to insured respondents with disabling chronic conditions. CONCLUSIONS: Despite increasing attention to issues of health care transition for young adults with disabling chronic conditions, this study suggests that uninsurance is as common among these young adults as nondisabled peers and is significantly associated with health care access barriers in this population.

Adult↗

Right hemisphere dysfunction: therapeutic intervention from acute care to home health.

This article discusses clinical practice variances in speech-language treatment of patients with right hemisphere dysfunction by therapeutic milieu. With an eye toward enhanced cost effectiveness, a model of intervention is presented that takes a patient from acute care management through rehabilitation. Issues discussed include assessment, family training, goal setting, and documentation. A right hemisphere screening tool is included in an appendix for use in acute and transitional care settings where in-depth testing might be inappropriate because of time constraints or the acute or transitory nature of the patient's symptoms.

Acute Disease↗

Supportive care pathway comforts the terminally ill.

The supportive care pathway at Brookwood Medical Center in Birmingham, AL, is a different kind of pathway, de-emphasizing length of stay in favor of streamlining the care of terminally ill patients. The path differs from traditional pathway efforts in four respects: lack of tests and interventions, focus on both the patient and the family, utilization of phases of the dying process rather than days or hours, and a focus on the psychosocial, spiritual, and emotional aspects of care for the patient and family. The three phases of the pathway are admission (decision is made for palliative care), transition (symptom management), and terminal (peaceful death).

Alabama↗

Nutritional support: formulas and delivery of enteral feeding. II. Delivery systems.

As interest in enteral feeding formulas and techniques grows, the hardware (tubes, bags, pumps) is becoming increasingly sophisticated. Newer materials have eliminated earlier problems with feeding tubes, and different lengths and lumen sizes have made access to the gastrointestinal tract more efficient. Patients can be fed via nasoenteric access or directly via gastrostomy or jejunostomy. Enteral nutrition can be administered safely if a protocol for feeding patients and monitoring them regularly is followed. If done carefully, transitional feedings can also be carried out effectively.

Enteral Nutrition↗

Early discharge and home care after unplanned cesarean birth: nursing care time.

OBJECTIVE: This study examined the mean nursing time spent providing discharge planning and home care to women who delivered by unplanned cesarean birth and examined differences in nursing time required by women with and without morbidity. DESIGN: A secondary analysis of nursing time from a randomized trial of transitional care (discharge planning and home follow-up) provided to women after cesarean delivery. SETTING: An urban tertiary-care hospital. PATIENTS: The sample (N = 61) of black and white women who had unplanned cesarean births and their full-term newborn was selected randomly. Forty-four percent of the women had experienced pregnancy complications. INTERVENTIONS: Advanced practice nurses provided discharge planning and 8-week home follow-up consisting of home visits, telephone outreach, and daily telephone availability. OUTCOME MEASURE: Nursing time required was dictated by patient need and provider judgment rather than by reimbursement plan. RESULTS: More than half of the women required more than two home visits; mean home visit time was 1 hour. For women who experienced morbidity mean discharge planning time was 20 minutes more and mean home visit time 40 minutes more. CONCLUSIONS: Current health care services that provide one or two 1-hour home visits to childbearing women at high risk may not be meeting the education and resource needs of this group.

Adolescent↗

Strategies for promoting a viable rural health care system.

Strategies for promoting a viable rural health care system in the context of the rapidly changing rural health care environment are presented. Also included is a series of guiding principles that support rural health care. They focus on the need for cooperation rather than competition among rural communities and health providers; the need for leadership and empowerment in rural communities; the dependence of rural health on generalists; the need to transform the reimbursement system to reward rural health services; the importance of quality of care for rural providers; the challenge of providing health and social services to the aged; and the instability caused by uncertain government attention to rural concerns. Examples of current activities that exemplify the effective use of these principles with respect to rural hospitals are discussed. These include the proposed demonstration of a new health care institution called the Medical Assistance Facility, the development of rural hospital consortia, the establishment of a rural health care transition grants program, and the activities of the New York State Legislative Commission on Rural Resources.

Community Participation↗

Pulmonary rehabilitation after acute COPD exacerbation.

Acute COPD exacerbation provides a window of opportunity for providing teaching, supportive care, and rehabilitation to a group of patients at high risk for complications and re-admissions. This article has attempted to make a case for the unique needs of this group of patients. Treatment of exacerbation is often viewed as "routine" by hospital staff and generally has focused upon the pharmacologic regimen of oxygen therapy, bronchodilators, antibiotics, and steroids. Within a few days, the patient is usually less dyspneic and is discharged with a combination of MDIs and a plan for steroid taper. All too often, the patient returns home with no idea of how to regain lost function or prevent future exacerbations. The use of the MAC provides a more complete picture of the unique needs and capabilities of COPD patients and brings together the collective expertise of the entire health team in designing a plan of rehabilitative care. Planned monitoring of the patient after discharge is an integral component to the success of the rehabilitation approach and the ability of the patient and family to move toward self-management of this chronic disease. Transitional care programs, community nurse referrals, telephone contacts, and outpatient visits are all appropriate methods for providing the type of support required to sustain rehabilitation. Traditionally, nurse researchers have examined psychosocial and functional performance outcomes of rehabilitation, however, nurses are in an ideal position to explore the methods of rehabilitation that yield the most positive outcomes over time and are sustainable over the course of the disease. Nursing can and should assume a leadership role in such initiatives.

Exercise Therapy↗

Exceptional CHF program is built on best practices, benchmarks.

Advocate Health Care in Oak Brook, IL, has built an exceptionally successful congestive heart failure (CHF) program based on best practices. Advocate's 90-day readmission rate for CHF patients is half the national average. A new part of the program, transitional care, has a readmission rate of just 4%. It is based on telephone follow-up and ongoing patient education. Advocate managers are building an internal database for their program, which will allow emergency department staff to access patients' latest labs, EKGs, blood serums, and other information.

Aftercare↗

Nurse case manager role attributes: fifteen years of evidence-based literature.

Nurse case management has been shown to provide quality patient care. Transition into the nurse case manager (NCM) role has presented administrators with a strategy to retain highly experienced registered nurses. An evidence-based literature review was pursued to examine provider and patient satisfaction associated with NCMs in acute and community care practice delivery settings. Qualitative and quantitative empirical findings were gathered to determine consistent role attributes. Autonomy was described as high by NCMs with interdisciplinary collaboration seen as an important practice activity. Mixed results were uncovered in nurse case management's effect upon staff nurse practice as well as patient and provider satisfaction. From the findings generated, recommendations were developed to improve the practice and expectations of the NCM role.

Attitude of Health Personnel↗

A course on the transition to adult care of patients with childhood-onset chronic illnesses.

Children with special health care needs born today have a 90% chance of surviving into adulthood, making their transition to adult systems of care an issue that will affect almost all physicians. However, many adult generalists and specialists are not familiar with the management of chronic diseases that begin in childhood. While the public health system has made transition to appropriate adult care a priority, and many specialty organizations have endorsed this concept, there are no published studies addressing how the concept of transition can be taught to medical students or residents. The authors describe a one-week course for medical students, begun in 2001 at their institution, that addresses the transition for youth with special health care needs, emphasizing patient and family-centered care, cultural competence, and decision making in end-of-life issues. Cystic fibrosis, a common genetic disease with increasing life expectancy, is used as the model for the course. Involvement of interdisciplinary faculty, interviews with youth with special health care needs and family caregivers, readings from academic and nonacademic literature, and group discussions are presented as teaching methods. Key insights based on experience with the course are the need to include the voices of patients and families, the use of faculty from various professions and specialties to model interdisciplinary care, and the insight that problems specific to transition offer into contemporary health care financing. Future studies should measure the impact of such courses on students' knowledge of transition issues, and determine essential information required for physicians in practice.

Adolescent↗

Heart failure in older adults. Providing nursing care to improve outcomes.

Heart failure continues to be a challenge for older patients and their health care providers. This article is based on work by advanced practice nurses in a nursing study funded by the National Institute of Nursing Research of the National Institute of Health. Mary Naylor, RN, PhD at the University of Pennsylvania School of Nursing through grant #1RO1-NR04315 is using a transitional care model to provide advance practice nurse intervention for older adults with heart failure in a randomized controlled trial. Effects of the intervention being addressed include quality of life, functional status, rehospitalizations, and costs of care. Working with the patient in the acute hospital setting and following patients to the home care setting for 3 months, the advance practice nurse develops a visit pattern and intervention plan individual to the patient's needs. Key to a successful intervention plan is the right treatment for systolic versus diastolic failure. Although the patient's symptoms and some physical findings may be similar, the drugs used to treat systolic versus diastolic heart failure are different. Thus the nursing interventions to promote symptom management and avoid rehospitalizations have a different approach. In this article, care of elderly individuals with systolic versus diastolic heart failure is compared and contrasted using physical examination and diagnostic techniques, medication management, and nursing intervention. Case studies of a typical patient with systolic and diastolic heart failure will be used to illustrate the differences in approach to this common group of patients with complex needs.

Activities of Daily Living↗