Research Consortium on Children with Chronic Conditions (RCCCC): a vehicle for interdisciplinary collaborative research.

To describe the evolution, accomplishments, and limitations of a research consortium after 25 years of existence. A narrative historical account supplemented by data documenting citations to all group papers. In 1980 the Research Consortium on Children with Chronic Conditions was established. Since then, we have met 2-3 times a year to discuss issues related to research and policies for children with special health care needs. We describe the origin of the Consortium, its operation, and some of its accomplishments, as well as the difficulties it encountered. Our interactions helped promote and sustain research on an emerging topic and did so in an interdisciplinary manner. We include a citation analysis suggesting that group papers published by Consortium members are reasonably well cited by others. We believe our work has been of value in developing influencing research, clinical practice, and policy. This paper is intended to serve as a guide for others who believe that this type of interaction can do much to promote an emerging field. However, it also highlights some of the difficulties in forging and maintaining a productive, research-focused relationship over an extended period of time. The most important lesson learned is that a small group of committed individuals able to meet on a regular basis can accelerate movement in a new field. However, unless stable funding can be secured, maintaining a consortium is truly challenging.

Impact of a celebrity death on children's injury-related emergency room visits.

OBJECTIVES: To determine whether a sharp increase in Emergency Room (ER) visits at the Montreal Children's Hospital (MCH) during the week following the death of Natasha Richardson from a skiing-related head injury was a) statistically significant and b) related to media coverage of the event. We postulated that there would be less coverage in the French media and in centres west of Quebec. METHODS: We compared the number of visits to the MCH ER for 10 weeks beginning March 5 and recorded the number for head-related injuries. These data were also compared with averages for the MCH for the same weeks in the previous 16 years; with visit figures from Hôpital Ste-Justine (HSJ); and with those from 3 other pediatric hospitals in provinces west of Quebec for the same period. RESULTS: We found a 60% increase in injury visits to the MCH ER compared to the baseline week (p < 0.001) and a 66% difference when compared with the 16-year average. HSJ also recorded a sharp increase during the study week but the rise did not persist. Smaller increases were recorded in the more western children's hospitals. At the MCH nearly half of the visits were for head injuries, but there was no change in the number judged to be severe. CONCLUSIONS: These data suggest that the media coverage of this celebrity death may have generated anxiety among parents, prompting those who might not otherwise have sought medical care to bring their children to the ER.

Expected diabetic control in childhood and psychosocial functioning in early adult life.

This study examined relationships between the extent to which doctors seek to achieve good (i.e., tight) diabetic control during childhood and the frequency of psychosocial problems in later life. A sample of 225 young adults with insulin-dependent diabetes mellitus was studied by use of a systematic interview. A measure of the level of control the doctor was attempting to achieve was developed from questionnaires administered to the doctors who provided most of the patient's care during childhood. The results were compared with scores on three indices of psychosocial functioning based on responses given in structured interviews with the patients. Although potentially important psychosocial problems were found for 10-20%, there was no statistically significant relationship between any of these problems and the doctors' desired levels of control. Thus, efforts to achieve good control during childhood, whether successful or not, may not be followed by psychosocial problems in later life. This finding should help support clinicians' attempts to obtain the levels of control during childhood judged to be essential in preventing serious organic complications.

Pediatricians and general practitioners: a comparison of the management of children with febrile illness.

To assess the relative competence of pediatricians and general practitioners in managing febrile illnesses in childhood, a prospective study was undertaken of 259 children less than 10 years of age seen consecutively at the emergency room of a children's hospital and a general hospital. Both groups of patients were similar in demographic characteristics, age, sex, presenting complaints, and height and duration of fever. Of the 148 patients entered in the study at children's hospital and the 111 at general hospital, 90% and 94%, respectively, were interviewed by telephone within two weeks of their emergency room visit to determine outcomes based on duration of the acute illness episode and further physician contacts or admissions to hospital. Although no significant differences in the measured outcomes of febrile illnesses seen by pediatricians or general practitioners were found, a trend in favor of those cared for by pediatricians was discernible with respect to two key measures: unresolved symptoms at one week (8.3% vs 12.5%) and subsequent hospitalization (0.8% vs 3.0%). The overall frequency of laboratory use and antibiotic prescriptions was the same in both groups; however, significant differences were noted in the type of laboratory test used: general practitioners ordered three times more roentgenograms than pediatricians and one fifth the number of microbiologic tests. Larger prospective studies are needed to test how these findings may be generalized in view of their importance for quality assurance in the primary care of children.

Early intervention for infants with Down syndrome: a controlled trial.

The mental development of 37 infants with Down syndrome, allocated either to an experimental or control group, was assessed over a six-month period by an independent evaluator. The experimental group participated in biweekly therapy sessions designed to stimulate normal development while the control group received no intervention. The Griffiths Mental Developmental Scales were used to assess changes in the developmental status in the two groups, which were shown to be equal initially on a variety of variables. No statistically significant differences in mental development between the experimental and control groups were found. The early intervention regimen investigated in this study was not efficacious in altering the pattern of mental development in those Down syndrome infants participating in the program.

Child automobile restraints: evaluation of health education.

An experimental design was used to test the effectiveness of three modalities of instruction in pediatricians' offices. Parents in the experimental and control groups were asked if their children wore a car seat restraint on the way to the office. The parents in the experimental group were encouraged to have their children use restraints via one of the following methods: a pamphlet alone; a pamphlet and verbal instruction by the pediatrician; or a pamphlet, verbal instruction, and a brief slide-tape show. The parents were contacted by telephone, mail, or in person two weeks later and asked if their child used a restraint on their last car trip. There were no statistically significant changes in behavior in any of the gourps. Although the group that received all forms of instruction had the highest mean score, the greatest increase occurred with the control group.

Decline in mortality among young Americans during the 20th century: prospects for reaching national mortality reduction goals for 1990.

A review of mortality data for persons younger than 25 years of age in the United States reveals striking declines in death rates since the turn of the century. Mortality among infants during their first year of life decreased from 1 in 6 in 1900 to 1 in 100 in 1986. Between 1900 and 1984 the annual death rate for children 1 through 4 years of age decreased from 1 in 50 to 1 in 2,000, for children 5 through 14 years of age, from 1 in 250 to 1 in 4,000, and for persons 15 through 24 years of age, from 1 in 165 to 1 in 1,000. Public health measures, advances in medical science, legislative initiatives, and the organization and delivery of health care have all contributed to these improvements in varying degrees during different decades. For the decade 1975 through 1984, the overall death rate decreased by 20%, with declines for all causes except suicide, cardiovascular diseases, and renal diseases. All of the surgeon general's mortality reduction goals for 1990 for America's youth should be reached except those for infant mortality and suicide. Improvement in these death rates will require better access to health care by those in need and reductions in environmental stress.

Long-term psychosocial sequelae of chronic physical disorders in childhood.

OBJECTIVE: This study was designed to examine the long-term psychosocial sequelae of chronic physical disorders that begin during childhood. DESIGN: We analyzed data from a national birth cohort. 12,537 children were followed until age 23 years--76% of all born in Britain during one week in 1958. Of these, 1667 had a chronic disorder before age 16 and 1279 were included in the 23-year follow-up. MEASURES: Outcome measures included self-reported psychological disturbances between ages 16 and 23, scores on the Malaise Inventory, social class, educational qualifications, unemployment, and social activities. RESULTS: The total cumulative incidence rate before 16 years was 109.5 per 1000. Demographic comparisons showed that the group with chronic physical disorders was similar to those free of chronic disorders in all respects except the sex ratio. Men with chronic physical disorders had significantly higher relative risks for abnormal scores on the Malaise Inventory (1.52, confidence interval [CI] 1.13, 2.05); specialist psychological care (1.43, CI 1.00, 2.03); poor educational qualifications (1.26, CI 1.08, 1.47); periods of unemployment (1.20, CI 1.03, 1.41); and less social drinking (1.36, CI 1.15, 1.60). In contrast, women only had a significantly elevated risk for having seen a mental health specialist (1.32, CI 1.02, 1.71). Among the men some of the risks were further elevated for those in specific diagnostic groups. These findings are examined in the light of postulates about the impact of chronic physical disorders as a whole and in an attempt to explain the striking sex differences. For clinicians they provide further reason to justify concern about the psychosocial aspects of care for children with chronic disorders.

The relationship between vigilance deficits and traffic injuries involving children.

OBJECTIVE: This study was designed to determine whether there is an increased frequency of deficits in impulse control, vigilance, or both, among child bicyclists or pedestrians who have been injured in traffic accidents, as assessed using objective measures and parent and teacher reports. RESEARCH DESIGN: This was a case-control study, in which cases were children injured as pedestrians or bicyclists (excluding those with severe head injuries) and controls were those injured as passengers or in some other manner in which the child's behavior was unlikely to be a factor. SETTING: Children ages 5 to 15 years presenting to the emergency room of the Montreal Children's Hospital. PARTICIPANTS: For each of 286 cases, two controls were selected, making a total of 848 subjects. Among the cases, 172 were injured as pedestrians and 114 as bicyclists. MEASURES: Children were assessed using the Continuous Performance Task and the Delayed Response Test, both parts of a computerized test battery. Parents and teachers completed the Conners Abbreviated Symptom Questionnaire to assess hyperactivity. RESULTS: Cases and controls were similar on most sociodemographic and clinical measures but showed statistically significant differences in mean scores on the Continuous Performance Task measures of omissions and commissions, pointing to differences in vigilance, and on the Delayed Response Test measures of impulsivity. Mean Conners scale scores of both parent and teacher were significantly higher for cases than controls, and those of parents were higher than those of teachers. CONCLUSIONS: Among children whose behavior may have been a factor in the occurrence of an injury, there is subjective evidence of increased hyperactivity and objective evidence of deficits in vigilance and attention when compared with closely matched controls. These findings have important implications for prevention.

Chronic illness in childhood: a regional survey of care.

Patterns of care provided by primary physicians for children with chronic physician illnesses are examined. Pratices of pediatricians are compared with those of general practitioners in a ten-county region in Upstate New York. Data collected from 82 physicians surveyed in nine rural counties and one urban area indicate that, on the average, 7.4% of all children seen annually have one or more chronic conditions. Most such children are referred to subspecialists for part or all of their care; the frequency of referral, however, depends chiefly on the nature of the disorder. Primary responsiblity for the broader aspects of care is more often assumed by rural than urban physicians and more often by general practitioners than pediatricians. Nevertheless, mental, social, and some technical services are generally underutilized by groups of primary physicians.

The use of alternative medicine by children.

OBJECTIVE: Alternative medicine (AM) is of growing interest to the general public. Although several studies have been published concerning its use in adults, the use by children is less well known. The purpose of this study is to determine the frequency with which alternative medicine is employed in a pediatric population that also uses conventional medicine. A second goal is to investigate the sociodemographic factors that influence the choice of these forms of therapy. METHODS: Parents of children consulting the general outpatient clinic of a university hospital completed a self-administered questionnaire asking about previous use of AM for themselves or their children. RESULTS: Based on 1911 completed questionnaires, 208 children (11%) previously consulted one or more AM practitioners. Chiropractic, homeopathy, naturopathy, and acupuncture together accounted for 84% of use. Children who used AM differed significantly from those who only used conventional medicine in that they were older than the nonusers, their mothers were better educated, and their parents also tended to use AM. CONCLUSION: The findings indicate that AM is an aspect of child health care that no longer can be ignored. Being aware of these practices will enable physicians to discuss alternative therapies with parents in order to ensure the continuity of essential conventional treatments.

Effects of nephrotic syndrome on the family: a controlled study.

The hypothesis that the parents and siblings of children with nephrotic syndrome are more likely to develop psychosocial problems than those of healthy children was tested. Seventy-nine siblings from 36 such families were compared with 79 healthy children from closely matched families using interviews, parent rating scales, teachers' reports, and psychological tests. Although few striking differences were found between the two groups, the findings suggest several areas of increased vulnerability among the parents and siblings of children with nephrosis. Parents often denied the existence of apparently stressful events, but the personality profiles of the siblings suggested decreased social confidence and a lesser degree of self-acceptance. Evidence of inhibition, such as less aggression and poorer academic performance, were also described in response to questions in the interview. These results should prove useful to clinicians in the management of families of children with this or other chronic illnesses.

Factors associated with the development of asthma and hay fever in children: the possible risks of hospitalization, surgery, and anesthesia.

The clinical impression of an allergist that early surgery increases the risk for developing asthma or hayfever was followed up by three studies. First, 115 children with pyloric stenosis were followed up and showed above-average prevalence figures. Second, 47 boys with hernia repairs were followed with similar results. Thirdly, 202 children reporting asthma or hay fever were studied for early hospitalizations. They reported more hospitalizations under the age of 2 than did a control group.

Referral patterns for children with chronic diseases.

A sample of 1377 physicians were surveyed by mailed questionnaire to study to what extent primary care physicians are involved in the long-term care of children with chronic disorders. The sample included all pediatricians practicing in the province of Quebec and a stratified random sample of general practitioners (10% sample in urban areas and 25% sample in rural areas). A response rate of 81% was achieved. Referral patterns were studied for asthma, congenital heart disease, and diabetes. Although pediatricians referred their patients less frequently than general practitioners, referral patterns depended mainly on the clinical condition. "No routine referral" was the most popular management strategy for asthma, whereas for congenital heart disease and diabetes more than 20% of physicians referred their patients for all aspects of care. Rural physicians tended to assume patient care to a greater extent than did urban physicians. Most pediatricians referred patients directly to subspecialists practicing in tertiary care centers, whereas general practitioners often sent patients to pediatricians practicing elsewhere, or to other specialists. These data suggest that the availability of medical resources in the community and accessibility to tertiary care centers also influence physicians' involvement in the long-term care of these children.

Chronic illness and mental health problems in pediatric practice: results from a survey of primary care providers.

The prevalence of chronic physical illnesses and their association with mental disorders was assessed using data collected by primary care pediatricians. A chronic illness was diagnosed in 1573 (15.6%) of 10,058 children aged 4 to 16 years, 945 (9.4%) of whom had a "serious" disorder, 535 (5.3%) had a minor disorder (hay fever or dermatitis), and 121 (1.2%) had a speech or language disorder. Behavioral problems were identified more often among patients with "serious" disorders than among those without chronic illnesses (2.4% vs 1.7%), as were emotional problems (5.0% vs 3.1%). Among those with "serious" conditions involving the central nervous system, the prevalence of behavioral (5.2%) and emotional (10.4%) disorders was still higher. Although children with "serious" disorders not involving the central nervous system also showed elevated prevalence rates of behavioral (2.1%) and emotional (4.5%) disturbances, this increase did not reach statistical significance. No association with "minor" chronic disorders was found. The negative impact of these mental health problems on the child was more severe when a chronic illness was also present, but referrals for mental health services did not reflect his association.

A computerized recall system for office practice.

A computerized system that has been in use in a small group practice since 1980 is described. Although many pediatricians have begun to use personal computers in office practice, most accounts of their experience to date relate primarily to the role of computers in facilitating administrative tasks, such as billing. The procedures involved in establishing the system are described, along with details about the nature of the programming concepts and several of the most important applications. A particular focus was to enable the computer to be used to improve the follow-up of patients with problems requiring recall visits, eg, immunizations. The results indicate that the percent of patients judged to be overdue for immunizations fell from 15.4% prior to the introduction of the computer to 1.3% and 4.3%, respectively, in the following 2 years. The proportion of children with other health problems requiring follow-up, 44.5% of the entire active practice population are also described. It is concluded that the computerized system can enhance the quality of patient care and greatly facilitate office-based research.

A randomized trial of a nursing intervention to promote the adjustment of children with chronic physical disorders.

OBJECTIVE: This study was conducted to determine whether a specialized form of nursing could help prevent or reduce psychosocial maladjustment among children, aged 4 to 16 years, with chronic physical disorders. In contrast to other studies, nurses were chosen to provide the intervention based on their central role in health care and the appropriateness of their training for this task. METHODOLOGY: A clinical trial was conducted in which 332 children and their families were randomly assigned either to receive this specialized nursing for a 1-year period, or to remain in the control condition. The children were all active outpatients in nine clinics at the Montreal Children's Hospital. Three measures of psychosocial functioning administered before and after the intervention were the basis for assessing its efficacy. The measures included the behavior problems profile of the Achenbach Child Behavior Checklist, the Personal Adjustment and Role Skills, completed by the parents, and two versions of the Self-Perception Profile (Harter) for children aged 4 to 7 years and 8 to 16 years. RESULTS: Differences between groups were examined both categorically and quantitatively. In the former, the percent of children with clinical scores (those above or below a cut-off indicative of maladjustment) at baseline and postintervention were compared. In the latter, the mean scores at the end of the trial were analyzed using analysis of covariance with the baseline scores as covariates. Statistically significant positive differences were found in the domain of anxiety/depression on the Personal Adjustment and Role Skills, and in the areas of scholastic competence, behavior, and global self-worth on the Harter. CONCLUSION: The results indicate that this intervention helps children with chronic disorders by preventing or reducing maladjustment. Most university-prepared nurses already have the basic skills required to achieve these results; only a modest investment in reorientation may be needed. Thus, other pediatric centers should be able to replicate these findings and thereby take a major step toward improving the lives of children with chronic disorders.

The role of the pediatrician in the delivery of mental health services to children.

Nine pediatricians reported on all patients seen during a four-week period in January and February 1976 in Monroe County, N.Y., to determine the prevalence and nature of mental health problems seen in their practices, the characteristics of the affected children, and the treatment provided to them. Of the 3,742 patients seen, 187, or 5.0%,were reported to have an emotional, behavioral, or school problem. The prevalence rate ranged from 1.4% to 7.8% by pediatrician, with five reporting rates within +/- 1.2% of the mean. High rates were associated with children in the 7 to 14 year age group (9.9%), those on Medicaid (8.6%), those who were not living with a father (10.9%), those whose presenting complaint was a chronic physical condition (11.7%), and children with a disease of the digestive system (16.7%) or with ""symptoms, signs and ill-defined conditions'' (14.3%). Functional impairment was reported to be moderate or severe in 40% of the 187 children with mental health problems. The most frequently reported problems (primary or otherwise) were adaptation reaction (22.5%), specific learning disorder (19.3%), hyperkinetic disorder (19.3%), psychosomatic disorder (12.8%), and conduct disorder (12.8%). The most frequent form of treatment provided was supportive therapy or counseling (85.6%) and suggestions regarding environmental changes (43.3%). Drugs were prescribed for 16.0% of the affected children, with 6.4% receiving methylphenidate or amphetamines. Referral for psychological care or consultation was made for 36.9%. The frequency of mental health problems observed by the pediatricians was about five times the annual rate of Monroe County children contacting a psychiatric inpatient or outpatient setting.

Feeding and temperament as determinants of early infant crying/fussing behavior.

In the first 3 months of life, crying and fussing in normal infants tend to increase until 6 weeks of age and decrease progressively thereafter. To determine whether feeding choice and early infant temperament are predictors of early crying, 374 healthy, full-term infants were observed prospectively from birth to 6 weeks of age. Feeding choice and sociodemographic characteristics were ascertained in the first few days postpartum. Parents completed a 17-item early infant temperament questionnaire at 2 weeks of age and a 24-hour behavior diary for 8 days at 6 weeks of age. Initially breast-fed infants cried and fussed more frequently throughout 24 hours compared with those who were formula fed, and increased frequency and duration of crying and fussing were predicted by "more difficult" temperament. Furthermore, a different pattern of crying and fussing within the day was found for infants who were changed from breast- to formula feeding. However, according to stepwise multiple regression models, daily duration of crying/fussing was significantly predicted only by the temperament score (but not initial feeding choice), which accounted for 7% of the variance. Frequency of crying/fussing were predicted only by socioeconomic status, temperament, and feeding frequency, which accounted for 12% of the variance. Breast- or formula feeding at 6 weeks of age was independently associated with crying/fussing only during the evening. It was concluded that early infant temperament predisposes to early crying and fussing but is of limited use as a clinical predictor. Later crying/fussing behavior is not predicted by initial feeding.(ABSTRACT TRUNCATED AT 250 WORDS)

Issues involved in the definition and classification of chronic health conditions.

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.