Community physician's role in case management of children with chronic illnesses.

There is general agreement that case management should be provided to children with chronic illnesses, yet it is not clear who should provide this service. A survey of physicians and parents of children with chronic illnesses was conducted to evaluate the practice and views of pediatricians and compare their assessments with those of parents. Surveys were mailed to 360 physicians and 519 families with response rates of 39% and 63%, respectively. The majority of physicians (74%) thought that the primary care physician should provide case management. When compared with parents, physicians underestimated the parental need for information about the child's diagnosis (8% vs 52%, P less than .001), treatments (3% vs 54%, P less than .01), and prognosis (30% vs 78%, P less than .01). They also overestimated parental needs for information regarding financial aid (70% vs 58%, P less than .01), vocations (78% vs 54%, P less than .01), and insurance (62% vs 51%, P less than .05). Four services ranked by need by parents in the top 10 were not ranked in the top 10 by physicians. Rural physicians noted that services were more difficult to obtain than did those in nonrural areas. The physicians surveyed made several recommendations for steps that could be implemented to facilitate their role as case managers. If primary care physicians are to be effective case managers, alterations in the current system of care will be required including continuing education related to chronic illness, information about community resources, reimbursement for the time required to perform case management, and better communication between physician and parents.

Enhancing infant development and parent-practitioner interaction with the Brazelton Neonatal Assessment Scale.

Studies performed in low socioeconomic populations have shown that the demonstration of a newborn's developmental capacity to his mother during the first few days post partum enhances subsequent mother-infant interactions. This study was undertaken to determine whether demonstrating the Brazelton Neonatal Assessment Scale to white middle-class mothers would result in similar outcomes. Mothers of 75 neonates were randomly assigned to either an experimental group or to one of two control groups. Direct observation, subjective assessment of mother-infant interactions, and maternal questionnaires were used 1 and 3 months later to assess outcomes on several dimensions. Mothers in the experimental group spent more time playing with, talking to, and looking at their infants than did those in either control group, and were less likely to use feeding as a method of interacting with their infants. Experimental group mothers also were more likely to ask developmentally related questions. However, no differences were found in most indices of maternal-infant interaction used. The results of this study and a review of the literature indicate that the recommendation that such a demonstration be performed with all neonates must be weighed against the other methods available for enhancing infant development and healthy parent-child interaction.

Ensuring high-quality alternatives while ending pediatric inpatient care as we know it.

Child advocates recognize pediatric hospitalization as an issue of great concern because of the serious morbidity it reflects and the adverse psychosocial effects of inpatient experience on children and families. Accounting for almost 50% of child health care costs, estimated at $49.8 billion in the United States in 1987, pediatric hospitalization also represents a substantial financial burden. Studies of the variation in childhood hospitalization rates among geographic areas, however, suggest a large portion of these hospitalizations are avoidable. In individual level analysis, admitting pediatricians judged 28% of acute, general pediatric hospitalizations to be potentially avoidable had specified alternative services been available. Furthermore, evidence supports the safety of care in alternative settings for selected acute illness episodes. Hospitals share incentives for reducing inpatient services as they join managed care organizations that capitate hospital costs. At a time when health care cost reduction has become a dominant theme in industry and politics, concern seems warranted that cost considerations might prevail over quality considerations in shaping change. The concern of child advocates is heightened by the fact that costs are measured as dollars while measures of quality remain comparatively vague.

Effects of providing comprehensive ambulatory services to children with chronic conditions.

OBJECTIVE: To document the effects of a comprehensive program of care on the resource utilization and cost of care for children with chronic conditions. DESIGN: Descriptive study of 10715 admissions between 1984 and 1995 with analyses of costs based on charges. Comparisons were made with data from a national consortium of academic medical centers and from a national survey of hospitals. A 2-week survey of staff was conducted to identify their use of time in the care of these patients. PATIENTS: Children aged birth through 18 years meeting International Classification of Diseases, Ninth Revision, Clinical Modification criteria for chronic conditions. Patients with acute conditions were used as controls. INTERVENTION: A program of expanded care funded since 1989 by a regional insurance company. RESULTS: Between 1984 and 1995, mean length of stay for children with chronic conditions decreased from 83.9 to 10.6 days; mean annual admissions decreased from 2796 to 1622. Median hospital inpatient charges, adjusted for cost of living, decreased from $26.1 to $14.6 million. A $77.7 million savings occurred for inpatient care, with total expenditures from the insurance program of $3.6 million (a 21:1 ratio). Almost half the professional activities provided for these children were for services that could not be reimbursed in a fee-for-service model. Median adjusted inpatient charges were lower in Rochester, NY ($8746) than in other academic medical centers ($12773) or in a national survey of hospitals ($12462), and fewer children were readmitted within 30 days in Rochester (12.7%) than in other academic medical centers (15.0%). CONCLUSIONS: An investment of funds by a regional insurance company was associated with reduced costs, admissions, and lengths of stay for children with chronic conditions, and resulted in significant savings for the company. This model may be applicable to other centers.

The management of children with spinal dysraphism.

Improvements in technology have dramatically increased the survival of children with spinal dysraphism. Because this complex condition affects multiple organ systems as well as the psychosocial functioning of the child and family, these children require care from a host of specialists in order to achieve optimum functioning. This article reviews the pathophysiology and discusses the current management of the medical and psychosocial effects of spinal dysraphism. It also briefly discusses strategies for intervention, long-term outcomes, and some controversies regarding care and screening.

The child who has severe neurologic impairment.

The formulation of a diagnosis in a child who has neurologic impairment should not (except in extreme circumstances) be made on the basis of a single finding. For example, the presence of delayed milestones, primitive or exaggerated reflexes, abnormal muscle tone, abnormal posture, abnormal neurologic examination, and temporal course should all be used to make the diagnosis of cerebral palsy. Furthermore, because each condition has a spectrum of disabilities from mild to severe involvement, determination of the child's abilities and impairments should be part of the diagnostic process. Because the child lives in a number of different environments, assessment of the child's functional abilities and evaluation of the environments should be made. Finally, evaluations by specialists in physical therapy, occupational therapy, speech therapy, psychology, special education, and nutrition may be necessary to complete the child's diagnosis. The ability to examine the child over a period of time (i.e., continuity of care) allows the practitioner to provide a more accurate prognosis for future development. It also enables easier diagnosis of the child when he or she is acutely ill. This also allows a more trusting relationship to develop with the parent and enhances the ability to influence the psychosocial conditions that affect outcomes. Finally, all these children should have care coordination (case management) (i.e., someone who can ensure that they receive the care they need, without duplication) across all settings, including home, school, hospitals, and ambulatory facilities.

Behavioral problems in deaf children: methodologic and theoretical considerations.

Problems in methodologic and theoretical approaches to the study of behavioral problems in deaf children are discussed. The most serious and prevalent methodologic deficiencies include inaccurate definitions, poor operationalization of "deafness," and the use of inadequate comparison groups. Many of the theories developed to explain findings in this area fail to consider individual differences among the children and/or their environments. Suggestions are presented with the goal of encouraging more exactness in methodology and the development of an electric theoretical approach to research in this area. It is argued that a valid understanding of the occurrence and "causes" of behavioral problems in this group, based on sound methodology, is essential to logical decision making and to any attempts at intervention.

Diagnostic clusters in infants as child health outcomes. Variation among socioeconomic areas in one community.

Objectives were to examine geographic variation in rates of infant hospitalization for diagnostic clusters in Monroe County (Rochester), New York and to assess these clusters as indexes of child health. ICD-9 codes were used to cluster all 7,883 hospitalizations of infants (< 24 months) between 1985 and 1991 on the basis of their avoidability. Environmentally sensitive clusters accounted for 63% of admissions. These clusters included environmental, environmental/constitutional, and other infectious disease. Disparities in morbidity between inner city and suburbs were greatest for the environmental cluster, followed by the environmental/constitutional, and other infectious disease clusters. For the constitutional and quality indicator clusters, differences between inner-city and suburban risk were minimal. Environmental interventions may be more important than improved health services to reducing racial and economic disparities in child health. Analysis of morbidity clusters, ascertained from available administrative data bases and aggregated for small geographic areas, may guide child health policy well.

Tethered spinal cord: update of an analysis of published articles.

Two hundred and fifteen papers written in English between 1943-1994 addressing the issue of tethered spinal cord (TSC) were reviewed using established criteria for research design. Of 127 articles that were not reviews or case reports, 64% specified the diagnostic criteria used for TSC: only 6% discussed the representativeness of the sample. Observer bias was addressed in 6%: reliability in a mere 5%. Only 16% of the 43 articles dealing with clinical trials used a control group: in no case was it randomly chosen. Only 20% of the 25 articles addressing clinical course/prognosis utilized an inception cohort. A "gold standard" diagnostic test was used in 66% of the 44 studies dealing with the issue, but only 21% employed an independent blind comparison. Critical questions such as: What is the optimal surgery to prevent TSC? What is the optimal technique to repair TSC? Should surgery be performed on all asymptomatic children with TSC? Are changes in the appearance of the spinal cord associated with neurological deterioration? What is the role of TSC in scoliosis? cannot be answered because reliable data to answer them does not exist.

An analysis of waiting times in a pediatric emergency department.

Waiting times in a pediatric emergency department were studied using direct observations of patients and health providers on 14 separate days. The mean waiting time (from entry to first physician contact) of the 216 children studied was 49 minutes. Time spent in the waiting room was increased by both the nonavailability of a nurse and the nonavailability of an examining room, and was decreased by the severity of the patient's illness. Time spent in the examination room waiting for the physician was related to the availability of the physician and the number of patients concurrently registered in the emergency department as well as the severity of their complaint. Recommendations for decreasing waiting time, based on the observations, are made. Although each setting is unique, the study provides a model for the analysis of waiting patterns in similar facilities.

The role of the pediatrician in caring for children with developmental disabilities: overview.

Pediatricians can help children with developmental disabilities to reach their potential. In addition to the issues relating to direct care outlined above and in the other articles in this issue of Pediatric Annals, clinicians should advocate on a community-wide level. This includes working with neighborhood schools, community health nurses, disease-oriented volunteer groups, and neighborhood agencies to provide access to services, support, and education for children and their families. It also includes championing the cause of children with disabilities with local and state governments. Because of the respect that pediatricians command in the community, they can play a major role in the lives of these children and their families.

Helping families with children with developmental disabilities.

The physician can help the child with developmental disabilities maximize his or her potential and minimize the adverse effects on the family by understanding the emotional and other impacts of a developmental disability; providing information about diagnosis, prognosis, and associated problems; providing nonjudgmental listening; providing information about community resources, including parent-support groups; ensuring adequate communication with everyone involved in the care of the child; and referring the family to appropriate agencies and providers.

Helping adolescents who have disabilities negotiate transitions to adulthood.

Adolescents who have disabilities face unique challenges as they progress through the transitions necessary to achieve optimum functioning in adulthood. These youths often need professional assistance to successfully negotiate these important transitions. Our article describes processes for collaborating with these adolescents, their families, and other professionals to facilitate successful transitions to a more healthy, productive, and satisfying adulthood.

Nurse practitioners' effectiveness in NICU.

The effectiveness of Neonatal Nurse Practitioners (NNPs) in a Level III Neonatal Intensive Care Unit (NICU) was evaluated by using a retrospective medical records review. Two groups of infants received care in a Transitional Care Unit (TCU), one by house officers and the second cared for by NNPs. Medical diagnoses, lengths of stay, hospital charges, discharge/transfer disposition and hospital readmissions were studied. No differences were found in DRG codes, discharge disposition, hospital readmission or number of infants transferred from TCU to NICU because of deteriorating condition. Though the infants cared for by the NNPs had significantly lower birth weight and lower gestational age, they averaged 2.4 fewer days in the hospital and $3,491 less in total hospital charges than the group cared for by house officers. This study confirms that NNPs can provide care comparable to house officers in a Level III NICU and be more cost effective.

Understanding the child with special health care needs: a developmental perspective.

Children with special health care needs and their families are becoming a greater part of pediatric nursing practice, and often present with major health and psychosocial needs that interfere with their ability to function. Optimal intervention with these children requires an understanding of their chronic conditions as well as their unique developmental needs. This paper reviews the characteristics of children with special health care needs and introduces some of the most salient theories of child development in order to provide a perspective from which to view this population. A case example that illustrates some of the features discussed is presented. Because a knowledge of theories of child development can improve the care provided to children with special health care needs, it should be included as part of nursing curricula.

Management of bowel dysfunction in children with spinal cord disease or injury by means of the enema continence catheter.

Because bowel dysfunction in children with spinal cord impairment is a common and disabling problem that does not have adequate treatment, we evaluated the enema continence catheter developed in Toronto, Canada. Thirty-one children and their families were taught to administer a 20 ml/kg saline enema through this device. The children's bowel functions were evaluated 18 and 20 months after the start of the program. Six of the children dropped out of the study in the first 2 weeks and nine dropped out after between 18 and 30 months. For those remaining in the study, the proportion of continent stools rose from 28% to 94% (p less than 0.01); constipated stools dropped from 55% to 15% (p less than 0.01). Satisfaction with the bowel program increased, and five children were able to switch from diapers to lined underwear. No adverse effects were reported, and the amount of time required for toileting did not increase. Although compliance with the regimen was difficult for some families and its use carries potential risks, we believe that it can provide significant improvement in the bowel care of selected persons with spinal cord impairment.