Search

A program that provides comprehensive services to families of chronically ill children may satisfy previously unmet needs, especially in the areas of psychological and social concerns. Chronic illness in children includes a wide variety of conditions such as asthma, diabetes, sickle cell anemia, leukemia and juvenile rheumatoid arthritis. Of 209 chronically ill children up to 12 years old, half were assigned to Pediatric Home Care (PHC), a comprehensive care program, and half received standard care. PHC included care in the home or other convenient location, coordination with specialists as needed, patient and family education and counseling, and liaison with social services or other outside agencies. The mothers were interviewed before the study and six months and one year later. The most significantly improved area of service with PHC was having someone listen to concerns about caring for a sick child. Coordination with other agencies was also better under the PHC plan., Objectives. To test whether a program of outreach and comprehensive health care for children with chronic disorders provides more complete care and reduces unmet health needs compared with traditional care. Design. A pretest-posttest randomized control trial. Setting. An inner-city municipal teaching hospital. Sample. Two hundred nineteen systematically enrolled mothers of children with diverse chronic physical health conditions. Interventions. A comprehensive outreach program, Pediatric Home Care (PHC), contrasted with Standard Care. Measurements and Results. Nine elements of comprehensive care established in the literature as components of a basic package of care for those with chronic conditions. The PHC intervention addressed gaps in services and improved both the acquisition and maintenance of elements of comprehensive care. Conclusions. These data suggest mechanisms through which comprehensive care programs may contribute to the improvement in psychological and social outcomes previously reported for those in the PHC intervention. Pediatrics 1994;93:602-607; unmet health needs, chronic illness, comprehensive care, home care, intervention, randomized trial.

A new approach needs to be developed for the definition and classification of chronic health conditions in children and adolescents. The number of children and adolescents with chronic health conditions is increasing. The old method for identifying children with chronic conditions is a condition-specific or categorical approach. It is based on the presence of an individual condition that is expected to be or is of long duration. These conditions include diabetes, asthma and cerebral palsy. A generic or non-categorical approach may be more practical. This approach would focus more on the impact of a condition on the child and less on the condition itself. It would also take into consideration the variations that can occur among children with the same condition., The need for a widely applicable definition of chronic conditions for research, policy, and program development has led to an extensive review of the development of such definitions, the considerations involved in their use, and some recommendations for a new approach. This paper examines some of the methodologic and conceptual issues related to defining and classifying chronic conditions and describes some consequences resulting from decisions made about these issues. While most examples are taken from child health applications, the basic concepts apply to all age groups. The dominant method for identifying and classifying children as having a chronic condition has relied on the presence of an individual health condition of lengthy duration. This condition-specific or "categorical" approach has increasingly seemed neither pragmatically nor conceptually sound. Thus, the development of a "generic" approach, which focuses on elements that are shared by many conditions, children, and families, is recommended. Such a definition might reflect the child's functional status or ongoing use of medical services over a specified time period. In addition, it is suggested that conditions be classified based on the experience of individual children, thus emphasizing the tremendous variability in expression of seemingly similar conditions. Pediatrics 1993, 91:787-793; chronic illness, chronic condition, special health care needs.

In the case of Sullivan vs. Zebley, the Supreme Court struck down the criteria used to determine the eligibility of disabled children for Supplemental Security Income (SSI). This 1990 decision held that existing regulations discriminated against children because they were required to meet a stricter standard than did adults; a liberalized access for children to SSI has been mandated by the court. The SSI program was primarily designed to improve the financial standing of aged, blind, or disabled people. It also infers automatic eligibility for Medicaid in many states, thus providing access to otherwise unavailable essential health services. The intent of SSI for adults was to partially replace income lost as a result of inability to work, while the intent for children was less clear. Congress stipulated that the standards for eligibility of children be comparable to that for adults, but was not specific. Of about 290,000 children currently receiving SSI, 42 percent are mentally retarded. Others have nervous system diseases, congenital anomalies, mental disorders, cancers, or other problems. Rules governing family income and resources are complex. Criteria for diagnostic listings are very specific; often require a child to have very great delays in development or other areas; are poorly updated to meet current understanding; and do not deal with the frequent coexistence of multiple conditions. These very technical rules were not in step with the reality of disabling childhood conditions, which was recognized by the court. Unlike adults, children were ineligible for further assessment of residual functional capacity, which does not deal with specific diseases or disorders. The plaintiff in this class action decision was denied SSI benefits despite being developmentally delayed, having cerebral palsy, and speech and hearing problems. Improvements in assessing disabled children have been made, but policy, fiscal, and legal issues still need to be addressed. Establishing linkages between the Social Security Administration and other governmental and private agencies that deal with disabled children may provide major cost savings as well as enhancing collaboration. (Consumer Summary produced by Reliance Medical Information, Inc.)

Children with chronic physical illness are more likely to develop psychological and social problems, which sometimes persist into adulthood. It is not clear whether interventions or treatment programs can improve these complications of chronic physical illness in childhood. The Pediatric Home Care program, also referred to as the Pediatric Outreach Program, was designed to provide medical and psychosocial care and community-based services to chronically ill children. The program was implemented in 1970 and staffed by pediatricians, pediatric nurses, and a social worker, who provide care in the home, office, hospital, school, or community. The program provides the child and family with information about the chronic condition and with training in self-care skills, and consists of both hospital-based and outpatient services. The long-term effects of this pediatric home care program were assessed four and a half to five years after the initiation of the program. Sixty-eight percent of the patients who started with the program were available for follow-up. The program was previously shown to reduce psychological problems among chronically ill children at six months and one year after the start of the program. These short-term benefits persisted and were more pronounced at follow-up. These findings show that a family-oriented program which combines medical and psychosocial care can provide long-term benefits for the mental health of children with chronic physical illness. (Consumer Summary produced by Reliance Medical Information, Inc.)

The Pediatric Home Care (PHC) program is a treatment program that provides medical and psychosocial care and community-based services to chronically ill children. The program was started in 1970 and is staffed by pediatricians, pediatric nurses, and a social worker, who can provide care in the home, office, hospital, school, or community. The program supplies the child and family with information about the chronic condition and with training in self-care skills, and coordinates health services and social and community resources. The mental health benefits of the PHC program were evaluated at six months and one year after its implementation. The results were compared with those of a standard care program, which consisted of services provided by a university-affiliated hospital, its clinic system, and related community services. The PHC program resulted in greater improvement in the child's psychological adjustment, and in the mother's psychiatric symptoms and satisfaction with care as compared with the standard care program. However, the effects of chronic illness on the family and child's functional condition were similar for all patients. The differences in benefit gained from the PHC program were assessed in various subgroups of patients. The patients who benefited most from the PHC program were those with mild chronic illness, but with low coping resources, such as social, educational, financial, and personal support. In cases where the chronic illness was mild and coping resources were ample, the patient benefited more from standard care than from PHC. Results varied among patients with more severe chronic illness. These findings suggest that patients with immense needs may not derive the greatest benefit from intervention programs. Medical and social factors should be taken into consideration when planning the distribution of resources. (Consumer Summary produced by Reliance Medical Information, Inc.)

In a ideal world, effective programs would be disseminated on a large scale, but many obstacles block program diffusion. To date, little guidance has been provided by program designers on how to implement the program in different sites with different personnel and client populations. This article discusses the debate between the 'fidelity camp' and the 'reinvention camp' and suggests an approach that reconciles the two positions: fidelity should be maintained to the program's mechanism of operation; reinvention is permitted in implementation if the causal mechanism is preserved. Such an approach is essential for effective dissemination of preventive interventions that are successful in controlled trials.

Internal and external validity problems permeate all intervention studies but are accentuated in primary preventive intervention research, particularly when studies target or recruit individuals based on their risk for psychopathology. Since many people who are at risk do not yet experience distress, they may not perceive the need for intervention. Recruitment tactics based on explaining extent of risk are unlikely to be persuasive and may have negative consequences. If respondents are not motivated to participate, a small or biased subset of the target population will participate in the intervention. Bias is of special concern when those enrolled represent only part of the continuum of risk. Selective enrollment may compromise both internal validity (the interpretation of the research results) and external validity (the generalizability of the findings) of intervention trials in primary prevention. This article discusses the effects of partial enrollment and the resultant bias. It suggests several strategies for increasing the enrollment of the target population and examines some of their ethical ramifications. It also stresses the importance of collecting systematic data documenting how the participants in the intervention differ from the target group as a whole.

US children in comparison to other industrial and even transitional countries are not keeping good health indicating that an increasing proportion of children will be ill prepared to compete in a highly technology-dependent society and are at longer-term risks as adults. It is suggested that assessment of child health requires a developmental perspective with attendant implications for health in subsequent stages in life.

Background/Objective. Treatment of dehydrating gastroenteritis, a major cause of morbidity in children, remains controversial. Practice parameters issued by the American Academy of Pediatrics (AAP) recommend oral rehydration therapy (ORT) as the preferred treatment for losses from both mild and moderate dehydration. The objective of this study was to test the hypothesis that awareness of the AAP practice parameters would be associated with a higher rate of use of ORT among emergency physicians. Methods. A national random survey of emergency physicians selected from the mailing list of the AAP Section on Emergency Medicine was conducted. Respondents were asked about level of awareness of AAP guidelines and preferred route of rehydration for scenarios representing mild ([less than or equal to] 5%), moderate (6%-9%), and severe ([greater than or equal to] 10%) dehydration. Respondents who were very familiar with the AAP practice parameters were designated as the familiar group; those who were less familiar were designated as the unfamiliar group. Differences in proportions of dichotomous variables were tested by [chi square] or Fisher exact test as appropriate. Univariate logistic regression modeling was used to determine the independent influence of awareness of AAP guidelines on the use of ORT. Results. A total of 176 physicians responded (73% response rate). Most were board certified in 1 or more specialties: pediatrics (89%), pediatric emergency medicine (84%), and adult emergency medicine (63%). Median duration of practice was 16 years. Thirty-seven percent of respondents were very familiar with the AAP practice parameters. In contrast to the unfamiliar group, the familiar group was more likely to use ORT in scenarios of mild dehydration (81% vs 66%) and moderate dehydration (25% vs 10%). Logistic regression analysis confirmed that this familiar group overall was nearly 3 times more likely to use ORT (odds ratio: 2.85; 95% confidence interval: 2.46-3.24). Conclusions. This is the first national study to establish a relationship between awareness of the AAP practice parameters and physician practices in the treatment of dehydration. Emergency medicine physicians who were very familiar with the AAP parameters were significantly more likely to use ORT. These findings may have important implications for future efforts directed at increasing the rate of ORT use and for the evaluation of practice parameters in general. Pediatrics 2002;109:259-261; oral rehydration, emergency physicians, policy., ABBREVIATIONS. ORT, oral rehydration therapy; AAP, American Academy of Pediatrics; ED, emergency department; OR, odds ratio; CI, confidence interval. Dehydrating gastroenteritis is a major cause of morbidity in children. Each [...]

CONTEXT. Child psychosocial issues and maternal depression are underidentified and undertreated, but we know surprisingly little about the barriers to identification and treatment of these problems by primary care pediatricians. [...]

Background. Capitation rates for the State Children's Health Insurance Program (SCHIP) funded under Title XXI of the Social Security Act were based on assumptions about the health care needs of children enrolled in this program. It has been suggested that parents are selective in enrolling children who are, in their opinion, most likely to need care, and that families who do not view their children as needing such care are more likely to ignore opportunities to seek or to maintain enrollment in SCHIP insurance. Thus, there have been concerns that enrollees might have more health conditions than a general population of children. Objective. The purpose of this study was to test the hypothesis that children in Title XXI have more ongoing health conditions than expected by comparing health status data from enrollees in 1 state SCHIP program to a nationally representative sample of children in the United States. Methods. This study used statewide data obtained in a survey of Florida SCHIP program enrollees and national data obtained on a subset of the children who were assessed in the 1994 National Health Interview Survey (NHIS). We examined health and demographic data collected by means of a structured telephone survey from parents for a random sample of 2432 children 2 to 18 years old who participated in the Florida Healthy Kids Program during the time period of October 1, 1997 through September 30, 1998. We compared these data to information on a national sample of all 26 845 children in the same age range whose health was assessed by the 1994 NHIS, and to a subset of the 6460 children in the NHIS sample whose family income met the eligibility criteria for SCHIP. To do this, we eliminated those children who were receiving Medicaid and those children whose household income levels were known to be above the eligibility level for SCHIP. We also excluded children whose household income was not reported. Thus, effectively this subsample contained non-Medicaid children, whose family incomes were below 185% of the Federal Poverty Level. In Florida, a parent interview conducted by telephone included the Questionnaire for Identifying Children with Chronic Conditions (QuICCC), and their responses were used to determine if the child had any chronic health conditions. The QuICCC is a validated questionnaire containing 39-item sequences that ask about consequences of health conditions in children. It not only provides an overall classification of whether the child has a chronic condition, but also yields information about the consequences affecting the child within 3 condition-related domains: 1) functional limitations; 2) dependency on compensatory mechanisms or assistance; and 3) service need or use above and beyond routine care for age. The 1994 NHIS Core Interview and Disability Supplement contained a series of questions about children's functioning and service use that simulated the QuICCC, and we applied a previously published algorithm for determining the presence of a chronic condition using these items. Both data sets included comparable information on parental ratings of children's health status (excellent, very good, good, fair, poor), and on school absences, bed days, and restricted activity days in the previous 2 weeks. Results. Children in the Florida SCHIP program were more than twice as likely to have chronic health conditions than similarly aged children in the general population or children in the income restricted national subsample (31% vs 15.9% and 14.6%, respectively) and there also were more SCHIP children with school absences (29% vs 18% and 16.7%, respectively). In contrast, the rating of overall health of SCHIP children was not poorer according to their parents, and they did not have more activity restrictions. Children in Florida SCHIP who had conditions were more likely to experience related consequences within each of 3 domains, and they were nearly 3 times as likely to have all 3 types of consequences (7% in Florida SCHIP sample vs 2.8% and 1.7% in the full national sample and in the income-matched subsample). However, the Florida SCHIP enrollees differed from the age and income-matched national sample in terms of the proportion of Hispanics. Thus, to verify these findings, we weighted the SCHIP sample to match the racial and ethnic proportions found in the national sample and repeated the analyses. The findings were robust, and there was no change in the percentage of children with special health care needs after such weighting. Conclusions. Overall, the results of these analyses support the notion of adverse selection and retention in the SCHIP program. This is unlikely to be the result of aggressive marketing in enrollment sites that serve children with more medical problems, as Florida health care providers rank third as a source of information about the Title XXI program after family and friends and the schools. In addition, Florida has active outreach and single-page application process for Medicaid and an aggressive program to move children to Title V, which also should minimize the numbers of children with special health care needs enrolled in SCHIP. Nevertheless, these findings suggest that the children being enrolled in Florida's SCHIP program are not the largely healthy population that was envisioned. If replicated in other SCHIP programs, these findings raise questions about the basic underlying assumptions concerning the health of potential enrollees and could have implications for the long-term fiscal viability of the program. URL: http://www.pediatrics.org/cgi/ content/full/112/2/e119; children with special health care needs, chronic conditions, health status, insurance, State Children's Health Insurance Program.

Medical training, practice and research are traditionally organized around body systems and disease categories. There is, however, a disciplinary split over the question of whether the clinical diagnosis is the central issue in describing an individual with an illness. Data from two studies, one institutional and one population based (The Pediatric Ambulatory Care Treatment Study and the National Health Examination Survey--Cycles II and III), are used to test the usefulness of diagnostic groupings in examining correlates of illness. A series of analyses of variance with the diagnostic groupings as the independent variable and a range of psychological, social and educational measures as the dependent variables reveal only the number of significant differences expected by chance. The only area in which a pattern of significant differences is found in the family's interaction with the health care delivery system. These results indicate that there is more variability within diagnostic groupings than between them and suggest that diagnosis is not a helpful categorization in the examination of psychological and social variables. While not surprising to social scientists, these data suggest the need for a major reorientation of the research paradigm when examining the psychological, social, rehabilitative and preventive issues raised by chronic illness in children and families.

OBJECTIVE. The proliferation of policy statements from the American Academy of Pediatrics presents pediatricians with an increasing amount of health advice to deliver, yet no quantitative estimates of pediatric health advice expectations exist in the literature. The objective of this study was to quantify and characterize verbal health advice that pediatricians are expected to deliver to patients/guardians. METHODS. The authors read and coded the 344 American Academy of Pediatrics policy statements that are contained in the American Academy of Pediatrics' Pediatric Clinical Practice Guidelines and Policies, Third Edition, and identified 57 policies that contained health advice directives that are broadly relevant to pediatric practice. We extracted the individual advice text to a database in which we also coded its date of issue, its theme, and whether (1) it was duplicated in another policy, (2) a screening question was required to identify a target population for the advice, (3) handouts or other aids to delivering the advice were referenced in the policy itself, or (4) the text of the statement referred to evidence of the effectiveness of office-based delivery of the advice. RESULTS. These 57 policies were found to contain 192 discrete health advice directives that pediatricians are expected to deliver to patients/guardians. Seven (4%) of these directives originated before 1993, and 185 (96%) were created from 1993 to 2002. After removal of the 30 (16%) duplicates, safety advice composed 67%, media use composed 12%, substance abuse composed 5%, environmental health hazards composed 4%, development/emotional health composed 4%, sexuality and pregnancy composed 3%, nutrition composed 2%, and miscellaneous composed 3%. In 41% of the directives, a screening question was required to identify the target population for the advice. Aids to delivering advice were referenced in 20% of the policies. In no policy statements did the text refer to evidence that office-based counseling was an effective method to achieve the desired health or behavioral outcome. CONCLUSIONS. We examined the American Academy of Pediatrics policy statements and found 162 different verbal health advice directives on which pediatricians should counsel parents and patients throughout childhood. The expectation that delivery of all of this advice can be achieved is unrealistic. Moreover, none of the reviewed statements were found to include an evidence-based discussion of the efficacy of the suggested advice. In light of these findings, we suggest that committees should consider both the feasibility and the evidence of efficacy of office-based health advice when generating future policy statements. KEY WORDS. anticipatory guidance, health supervision. URL: www.pediatrics.org/cgi/doi/10.1542/peds.2006-0652

The home management of asthma in inner-city children does not fully incorporate the guidelines of the National Heart, Lung, and Blood Institute (NHLBI). Researchers interviewed 220 caretakers of asthmatic children and found that only 51% had been given written home-care guidelines and only 30% had peak-flow meters for monitoring asthma symptoms. Antiinflammatory medications were only given to 39% of eligible children, despite guidelines recommending the wider use of these asthma treatment drugs. Most of the families had not taken steps to reduce the levels of asthma-inducing allergens in their home, like encasing mattresses and pillows in mite-proof covers., Objectives. 1) To describe the asthma morbidity, primary care practices, and asthma home management of inner-city children with asthma; 2) to determine the responses of parental caretakers to asthma exacerbations in their child; and 3) to compare these responses to the recommendations of the National Heart, Lung, and Blood Institute (NHLBI) asthma guidelines for home management of acute exacerbations of asthma. Design and Methods. A 64-item telephone survey was administered between July 1996 and June 1997 to 220 parental caretakers of 2- to 12-year-old children who had been hospitalized with asthma at an inner-city medical center from January, 1995 to February, 1996. Sociodemographics, primary care practices, asthma morbidity, and asthma home management were assessed. Parents were asked what they would do if their child "began wheezing and breathing faster than usual." Results. Morbidity measures indicated that there were an average of 2.5 [+ or -] 4.5 emergency department visits for asthma in the last 6 months, 1.6 [+ or -] 2.2 hospitalizations for asthma in the last 12 months, and 18.1 [+ or -] 17.9 asthma-related school absences in the previous school year. Most, but not all, of the families had primary care providers and most had phone access to them. Half of the families (51%) reported having been given a written asthma action plan. Only 30% of families with children age 5 years and older had peak flow meters. In contrast, almost all families (97%) had equipment for inhalation of [Beta]-agonists. Only 39% of the 181 children with persistent symptoms were receiving daily antiinflammatory agents as recommended in the guidelines of the NHLBI. In response to the scenario of an acute exacerbation of asthma, no one mentioned that they would refer to a written plan, only 1 caretaker would measure peak flow and 36% would give [Beta]-agonists. Two percent would give oral steroids initially, and 1 additional person would do so if wheezing continued 40 minutes later. Only 4% responded that they would contact their clinician. Reports of actual practice differed from the scenario responses in that more people began [Beta]-agonists and oral steroids in response to an exacerbation in the past 6 months than said they would in response to the scenario. Conclusion. In this population of previously hospitalized inner-city children with asthma, the NHLBI guidelines for the home management of asthma exacerbations are not being followed. Interventions are needed to affect both clinician and caretaker practices. Pediatrics 1999;103:422-427; asthma, children, morbidity, inner city, management, guidelines, standard of care, scenario, peak flow, oral steroids, [Beta]-agonist, access to care, symptoms, antiinflammatory agents., ABBREVIATIONS. NHLBI, National Heart, Lung, and Blood Institute; HMO, health maintenance organization; ED, emergency department. Asthma is a major cause of childhood morbidity, affecting 4.8 million children in the United [...]