Improved preventive care for asthma: a randomized trial of clinician prompting in pediatric offices

OBJECTIVE: To determine whether clinician prompting regarding a child's symptom severity and guideline recommendations at the time of an office visit improves the delivery of preventive asthma care. DESIGN: Randomized controlled trial. SETTING: Two inner-city pediatric practices in Rochester, NY. PARTICIPANTS: Two hundred twenty-six children with persistent asthma (aged 2-12 years) presenting to the clinics for well-child care, asthma care, or non-asthma-related illness care.Intervention We assigned children randomly to a clinician-prompting group (single-page prompt including the child's symptoms and guideline recommendations given to the clinician at the time of the visit) or a standard-care group (no prompt given). Interviewers called parents after the visit to inquire about preventive measures taken, and medical charts were reviewed. MAIN OUTCOME MEASURES: Any preventive action related to asthma taken at the visit. RESULTS: Children in the clinician-prompting group were more likely to have had any preventive measures taken at the visit compared with children in the standard-care group (87% vs 69%). Specifically, visits for children in the clinician-prompting group were more likely to include delivery of an action plan (50% vs 24%), discussions regarding asthma (87% vs 76%), and recommendations for an asthma follow-up visit (54% vs 37%). In a regression model, children in the clinician-prompting group had 3-fold greater odds of receiving any preventive action compared with the standard-care group. CONCLUSION: Clinician prompting regarding asthma severity and care guidelines at the time of an office visit significantly improved the delivery of preventive asthma care.     

Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer

BACKGROUND: In the present study, we investigated the situation of children who had succumbed to their malignancy in Germany as perceived by their parents. Specifically, we were interested in bereaved parents' perspective on five essential areas: 1) symptoms and quality of life, 2) characteristics of the child's death, 3) anticipation of their child's death and care delivery, 4) end-of-life decisions and 5) impact of the child's death on the parents and perceived social support by the health care team. MATERIALS AND METHODS: We contacted all existing departments for paediatric oncology in the German federal state of Nordrhein Westfalen and asked them to contact all parents for participation in our study who had lost their child to cancer in 1999 and 2000. Upon agreement, we interviewed the parents utilising a validated semi-structured interview on distressing symptoms and quality of life of their children during the end-of-life care period. RESULTS: Six of the 19 departments agreed to participate. Parents of 48 children (31 boys, 17 girls) were interviewed. The main distressing symptoms were fatigue, pain, loss of appetite, and dyspnoea according to the parents. While parents perceived pain and constipation to have been treated successfully, loss of appetite and anxiety were not treated effectively. 75% of the children died due to a progression of their malignancy. Of these, 50% obtained cancer-directed therapy at the end of life, which was negatively rated by the parents in hindsight. 48% of the children died at home even though 88% of the parents chose 'at home' as the most appropriate locale of death in hindsight. Parents anticipated their child's death on average 9 weeks prior to the child's death. 41% of the parents provided palliative home care for their child and the majority (88%) rated the quality of care as good or very good. 64% discussed end-of-life decisions with the health care team, 36% did not have a discussion. Parents were clearly affected by their child's death. However, 15% of the parents were not contacted by the health care team following the child's death. CONCLUSIONS: The present study demonstrated that psychological symptoms (e.g. anxiety) are frequent symptoms in the end-of-life care period and cause severe suffering in the children. Questions in terms of benefits and costs of cancer-directed therapy in the end-of-life care period need to be addressed in future prospective studies. Parents' perspective on their child's death and related end-of-life decisions highlighted the importance of communication between parents and the health care team. Future studies need to investigate potential barriers in the communication between parents and the team to optimise end-of-life decisions and hence, reduce parents' long-term distress. In line with the previous, the present data demonstrated that there is still a lack of routine contact from the health care team following the child's death despite existing guidelines. Research is therefore needed into the implementation of guidelines for routine contact into clinical practice following a child's death.     

A potential pitfall in provider assessments of the quality of asthma control.

BACKGROUND: Pediatricians elicit information about asthma control from parents to help formulate management plans. If parents of children with significant asthma symptoms inappropriately indicate good control, physician recommendations may not be optimal. We examined whether a single general question about asthma control might lead to inaccurate assessment of severity. DESIGN/METHODS: Children 3-7 years of age who met the National Heart, Lung, and Blood Institute (NHLBI) criteria for mild persistent to severe asthma were identified from 40 urban schools. A phone survey of their parents provided demographic information, symptom frequency, medication use, and general interpretation of their child's asthma control. Chi-square analyses compared the parent's general interpretation of control with demographic characteristics and measures of asthma severity. RESULTS: One hundred sixty of 224 eligible children participated in this study. Seventy-eight percent were described as in good asthma control. General assessment of asthma control did not vary by demographic characteristics. Parents were as likely to describe children with daily asthma symptoms in good control as they were to describe children with less frequent symptoms in good control. Parents were less likely to report good control in children using daily rescue medications when compared with children with less frequent medication use (65% vs 82%, P =.03), but the majority of children in both groups was described as having good control. CONCLUSIONS: Most parents underestimated the severity of their child's asthma and reported good control with their global assessment. Parents frequently reported good control even when the children had daily asthma symptoms. Pediatricians should ask about specific asthma symptoms during patient encounters because a global question about asthma control likely will result in underestimations of asthma severity.     

Symptom reporting in childhood asthma: a comparison of assessment methods.

BACKGROUND: One barrier to receiving adequate asthma care is inaccurate estimations of symptom severity. AIMS: To interview parents of children with asthma in order to: (1) describe the range of reported illness severity using three unstructured methods of assessment; (2) determine which assessment method is least likely to result in a "critical error" that could adversely influence the child's care; and (3) determine whether the likelihood of making a "critical error" varies by sociodemographic characteristics. METHODS: A total of 228 parents of children with asthma participated. Clinical status was evaluated using structured questions reflecting National Asthma Education and Prevention Panel (NAEPP) criteria. Unstructured assessments of severity were determined using a visual analogue scale (VAS), a categorical assessment of severity, and a Likert scale assessment of asthma control. A "critical error" was defined as a parent report of symptoms in the lower 50th centile for each method of assessment for children with moderate-severe persistent symptoms by NAEPP criteria. RESULTS: Children with higher severity according to NAEPP criteria were rated on each unstructured assessment as more symptomatic compared to those with less severe symptoms. However, among the children with moderate-severe persistent symptoms, many parents made a critical error and rated children in the lower 50th centile using the VAS (41%), the categorical assessment (45%), and the control assessment (67%). The likelihood of parents making a critical error did not vary by sociodemographic characteristics. CONCLUSIONS: All of the unstructured assessment methods tested yielded underestimations of severity that could adversely influence treatment decisions. Specific symptom questions are needed for accurate severity assessments.     

Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health

OBJECTIVE: To assess the extent to which parents of children with autism compared with parents of children with asthma or other special health care needs report receiving primary care for their child consistent with the American Academy of Pediatrics medical home model. DESIGN: Population-based cross-sectional study. SETTING: National Survey for Children's Health 2003-2004 telephone interview. PARTICIPANTS: Parents of 495 children with autism, parents of 6716 children with asthma, and parents of 11,403 children with other special health care needs without asthma. Main Exposures Autism and other special health care needs including asthma. MAIN OUTCOME MEASURES: Medical home score and components of care, as follows: personal provider and preventive; family-centered, compassionate, and culturally appropriate; accessible; comprehensive; and coordinated. RESULTS: The odds of parents reporting care consistent with that in a medical home were less likely for children with autism (odds ratio, 0.45; 95% confidence interval, 0.30-0.66) and more likely for children with asthma (odds ratio, 1.17; 95% confidence interval, 1.06-1.30) compared with children with other special health care needs (1 [reference]). These differences persisted even after controlling for condition severity, personal characteristics, and insurance status. Specific components of a medical home less prevalent among children with autism than among children with other special health care needs included family-centered, comprehensive, and coordinated care. CONCLUSION: Although we could not evaluate the reasons why, a large percentage of children with autism do not receive primary care consistent with that in a medical home.     

Providers underestimate symptom severity among urban children with asthma

BACKGROUND: Guidelines recommend that children with mild persistent to severe persistent asthma receive maintenance anti-inflammatory medications. However, providers may not be aware of the severity of their patients' symptoms. The underestimation of severity may contribute to poor adherence to asthma care guidelines. OBJECTIVES: To describe the use of preventive medications among a group of urban children with mild persistent to severe persistent asthma and to evaluate the degree to which their health care providers are aware of their asthma severity. DESIGN: Children (ages 4-6 years) from urban schools in Rochester, NY, were eligible if their parents reported mild persistent to severe persistent asthma symptoms. Each child's health care provider was asked to assess the child's asthma severity and use of medications based both on their knowledge of the child and review of the medical record. Parent and provider assessments were compared. Bivariate and regression analyses were used to identify factors associated with concordant classifications of asthma severity. RESULTS: Ninety children with parent-defined mild persistent to severe persistent asthma participated (64% boys, 67% black, 73% receiving Medicaid). Only 40% of the children were described accurately by their providers as having mild persistent to severe persistent asthma, and only 50% of the total had been prescribed maintenance medications. Thirty-six percent of families reported that their child used maintenance medications daily. In contrast, most of the children who were classified by their provider as having mild persistent to severe persistent asthma were prescribed a maintenance medication (83%), and 58% used them daily. Sociodemographic characteristics and asthma severity were not associated with provider accuracy. CONCLUSIONS: Most children in this study were not accurately classified by their providers as having mild persistent to severe persistent asthma and had not been prescribed maintenance medications. When providers were aware of their patient's asthma symptoms, most of the children were prescribed maintenance medications. Attempts to improve adherence to asthma guidelines should take into consideration provider underestimations of asthma severity.     

Quality of care at a children's hospital: the parent's perspective.

OBJECTIVES: To develop a measure of parental perceptions of pediatric inpatient quality of care, to identify processes of care that influence these perceptions, and to describe these perceptions of care. DESIGN: An interdisciplinary team modified an existing measure of inpatient care for adults using focus groups and expert review. The resulting survey was administered by telephone. SETTING: Tertiary care pediatric hospital. PATIENTS: Trained telephone interviewers obtained reports from parents of children discharged from the hospital during specified months. This report is based on the answers to 122 questions provided by 3622 (77%) of 4724 parents who responded when surveyed from 1991 through 1995. MAIN OUTCOME MEASURES: Parents provided reports about specific clinical experiences, overall ratings of care, and patient demographic and illness characteristics 2 weeks after patient discharge from the hospital. The analysis classified reports about pediatric care as either problems or not problems. Problems in different areas of care were averaged to create scores for the dimensions. RESULTS: Parents most often noted problems related to hospital discharge planning (18%) and pain management (18%) and less often reported problems concerning communication about surgery (10%) or transmission of information to children (6%). Problems in communication between clinicians and parents correlated most strongly with overall quality ratings by parents (r=0.59). Parents' specific reports of problems with care accounted for 42% of the variation in their overall assessments of the inpatient care experience. CONCLUSIONS: Parental assessment of inpatient pediatric care rests heavily on the quality of communication between the clinician and parent. Specific processes of care strongly influence overall assessments. Such reports could be used to focus the quality-improvement activities of hospitals and increase the accountability of providers of care to children and families.     

The language of breathlessness: do families and health care providers speak the same language when describing asthma symptoms?

INTRODUCTION: Effective communication about symptoms is a critical prerequisite to appropriate treatment. Study aims were to: (a) document the symptoms that children with asthma and their parents associate with asthma, (b) identify differences between the "professional model "of asthma symptoms and the "lay model," (c) describe the family's proposed action in response to symptoms, and (d) investigate the congruence between parental assessment of "good control" and severity obtained using National Asthma Education and Prevention Program criteria. METHOD: Children with asthma and their parents (N = 228) were recruited from diverse clinical practice sites. Parents and children described symptoms they associated with an asthma exacerbation and their proposed action. Perceived asthma control was compared with a structured assessment of severity. RESULTS: One hundred and thirty-six unique symptoms were reported. While 78% of parents reported at least one standard asthma symptom, 48% also reported nonstandard asthma symptoms. Sixty-five percent of parents whose children's symptoms were consistent with severe asthma reported "good control." DISCUSSION: Improved communication about symptoms would improve asthma care. Proposed strategies include standardized screening questionnaires to assess symptoms, more frequent routine visits for children with persistent asthma, and wide dissemination of realistic goals for symptom control.     

Parent caregiver-related predictors of health care service utilization by children with cerebral palsy enrolled in Medicaid.

INTRODUCTION: This study examined the associations between characteristics of the parent caregiver and health care service utilization by children with cerebral palsy enrolled in Medicaid. METHODS: A questionnaire was administered to the parents of children with cerebral palsy being treated in a North Carolina hospital, and the responses were linked with health services claims data from Medicaid. Data were available for 93 patients who maintained 1 year of continuous enrollment. The impact of selected demographic variables (race, years the child had the condition, employment, transportation) and behavioral variables (belief the child was receiving appropriate care, willingness to use home nursing and respite services, self-assessment of the severity of the child's condition, and use of orthopedic aids) on the frequency and costs of health care services was explored with use of multiple regression analysis. RESULTS: Parents who were willing to use home nursing and respite services were more likely to utilize these services, as well as inpatient facilities and orthopedic care, for their children (P <.05). However, parents who perceived that their child was receiving adequate care were less likely to utilize orthopedic care and home nursing for their children (P <.05). DISCUSSION: The belief of the parents in the adequacy of care received by their child, as well as their willingness to utilize supplemental health care services, were major predictors of health care service utilization by children with cerebral palsy enrolled in Medicaid. Parents who believed that their children receive enough care may need to be targeted for care management and disease management programs to ensure the continuum of treatment and care for these children.     

Do parents of urban children with persistent asthma ban smoking in their homes and cars?

OBJECTIVE: Environmental tobacco smoke (ETS) increases morbidity for children with asthma. One method to reduce children's ETS exposure is to completely ban smoking in the home and car. We sought to evaluate the degree to which urban children with persistent asthma are protected by household and car smoking bans, and to determine whether health care professionals are counseling parents to implement smoking bans. METHODS: We asked parents of children with asthma to complete an in-person interview including questions about asthma symptoms, smokers in the home, smoking bans (home and car), and the receipt of ETS counseling by health care professionals. RESULTS: We included 231 children with persistent asthma symptoms (response rate 94%). Nearly half of the children lived with a smoker. Overall, only 64% of households had complete restrictions on smoking in the home and car. Even among the children with severe persistent symptoms, less than two-thirds were protected by a complete smoking ban. Among households with smokers, only 51% had a ban on smoking in the home and 49% in the car. The majority of caregivers had been questioned by health care professionals about home smoke exposure; less were asked about exposure in the car (40%) or given suggestions to decrease the child's exposure (58%). CONCLUSIONS: To our knowledge this is the first study to establish the prevalence of smoking bans among children with persistent asthma. Many children with asthma, even those with the most severe symptoms, remain exposed to ETS in the home and in cars. Identifying and reducing smoke exposure among these children should be a health care priority.     

Lack of Association of Household Income and Acute Gastroenteritis Disease Severity in Young Children: A Cohort Study

ObjectiveTo determine if low household income is associated with disease severity following emergency department (ED) discharge in children with acute gastroenteritis (AGE).MethodsWe conducted a secondary analysis employing data collected in 10 US-based tertiary-care, pediatric EDs between 2014 and 2017. Participants were aged 3 to 48 months and presented for care due to AGE. Income status was defined based on 1) home ZIP Code median annual home income and 2) percentage of home ZIP Code households below the poverty threshold. The primary outcome was moderate-to-severe AGE, defined by a post-ED visit Modified Vesikari Scale (MVS) score ≥9. Secondary outcomes included in-person revisits, revisits with intravenous rehydration, hospitalization, and etiologic pathogens.ResultsAbout 943 (97%) participants with a median age of 17 months (interquartile range 10, 28) completed follow-up. Post-ED visit MVS scores were lower for the lowest household income group (adjusted: -0.60; 95% confidence interval [CI]: -1.13, -0.07). Odds of experiencing an MVS score ≥9 did not differ between groups (adjusted odds ratio: 0.91; 95% CI: 0.54, 1.52). No difference in the post-ED visit MVS score or the proportion of participants with scores ≥9 was observed using the national poverty threshold definition. For both income definitions, there were no differences in terms of revisits following discharge, hospitalizations, and intravenous rehydration. Bacterial enteropathogens were more commonly identified in the lowest socioeconomic group using both definitions.ConclusionsLower household income was not associated with increased disease severity or resource use. Economic disparities do not appear to result in differences in the disease course of children with AGE seeking ED care.     

Why Parents Seek Care for Acute Illness in the Clinic or the ED: The Role of Health Literacy

Objective

To explore the decision to seek care and decision-making regarding location of care among parents with low and adequate health literacy.

A randomized trial of primary care provider prompting to enhance preventive asthma therapy

BACKGROUND: Guidelines recommend preventive medications for all children with persistent asthma, yet young urban children often receive inadequate therapy. This may occur in part because primary care providers are unaware of the severity of their patients' symptoms. OBJECTIVE: To determine whether systematic school-based asthma screening, coupled with primary care provider notification of asthma severity, will prompt providers to take preventive medication action (prescribe a new preventive medication or change a current dose). DESIGN: Children aged 3 to 7 years with mild persistent to severe persistent asthma were identified at the start of the 2002-2003 school year in Rochester. Children were assigned randomly to a provider notification group (child's primary care provider notified of asthma severity) or a control group (provider not notified of severity). Primary care providers of children in the provider notification group were sent a facsimile indicating the child's symptoms and recommending medication action based on national criteria. Interviewers blinded to the child's group assignment called parents 3 to 6 months later to determine if preventive actions were taken. RESULTS: Of 164 eligible children with mild persistent or more severe asthma, 151 (92.1%) were enrolled. Children in the provider notification group were not more likely to receive a preventive medication action than were children in the control group (21.9% vs 26.0%; P = .57). Additional preventive measures, including encouraging compliance with medications (33.3% vs 31.3%; P = .85), recommending environmental modifications (39.3% vs 42.4%; P = .86), and referrals for specialty care (6.6% vs 6.0%; P > .99), also did not differ between the provider notification and control groups. At the end of the study, 52.4% of children in both groups with no medication changes were still experiencing persistent symptoms. CONCLUSIONS: School-based asthma screening identified many symptomatic children in need of medication modification. Provider notification, however, did not improve preventive care. Findings suggest that more powerful interventions are needed to make systematic asthma screening effective.     

Utilization analysis of an observation unit for children with asthma

BACKGROUND: Short-stay observation unit (OU) care for children with asthma has the potential to reduce hospitalization rates for this common pediatric condition. In the effort to increase the efficiency of such a unit, knowledge of predictive factors for successful discharge is important. OBJECTIVES: 1) To define clinical predictive factors determined at the time of initial presentation in the emergency department (ED) that would identify which children with asthma are most likely to be successfully discharged from an OU. 2) To compare the management provided in the initial 3 hours upon arrival at the ED between the children who are eventually successfully discharged from an OU to those who require an inpatient admission. 3) To compare the length of stay in the OU between the patients who eventually go home to those who require an inpatient admission. DESIGN: Case control study. SETTING: Urban, tertiary-care pediatric ED. PARTICIPANTS: From a collected database of all patients with asthma 1 to 18 years of age, presenting to the ED from July 1, 1993 to June 30, 1994 (n = 2248), a random sample of 350 patients was identified. All children meeting the definition of "case" or "control" from this sample were included. Cases were defined as children with asthma who were successfully discharged after a stay in the OU. Controls were defined as children with asthma who were not successfully discharged; that is, children who required subsequent inpatient admission. RESULTS: Of the 350 children with asthma in the randomly selected subset sample, 47 cases and 21 controls were identified. In both cases and controls, patients had similar characteristics regarding mean age, sex, mean weight, previous history of asthma, and mean length of illness. The use of medications in the 24 hours prior to presentation to the ED was similar between both groups. No differences were found in the mean respiratory rate upon presentation between the cases and the controls (40/min vs. 44/min; P = 0.2), mean oxygen saturation (95 vs. 94%; P = 0.4). However, there was a significant difference in the requirement of supplemental oxygen between cases and controls (15 vs. 43%; P = 0.01; OR = 0.23:0.07 to 0.76). No further differences were found in the first 3 hours of ED management. The number of albuterol and ipratropium nebulizations was similar. The use, dosage, and timing of systemic steroids were also similar between the groups. The cases remained in the OU for a shorter period of time (8.7 hours vs 9.2 hours; 95% C.I.: -2.8 to 1.8) than the controls. CONCLUSION: No clinical predictive factors determined at the time of arrival to the ED were identified for children with asthma who were successfully discharged from the OU except for a lesser need of oxygen supplementation. The patients observed in the OU had similar management in the initial 3 hours of arrival and similar length of stay in the OU, regardless of their disposition outcome. Maximal OU efficiency remains limited by the lack of clear predictive factors for successful discharge. Further study in this area is indicated.     

Traumatic stress in parents of children admitted to the pediatric intensive care unit.

OBJECTIVE: To measure the prevalence of parental acute stress disorder (ASD) and posttraumatic stress disorder (PTSD) and to examine the relationship between ASD symptoms and PTSD symptoms in parents of infants and children admitted to the pediatric intensive care unit (PICU). To examine the correlation between parental perceptions of illness severity and objective measures. To assess the association among demographic, situational, and illness factors and the severity of ASD and PTSD. DESIGN: Prospective cohort study. SETTING: Thirty-eight bed PICU at an urban children's hospital. PATIENTS: The parents of 272 children admitted to the PICU for >48 hrs. INTERVENTIONS: ASD symptoms were assessed using the Acute Stress Disorder Scale during the child's admission. PTSD symptoms were assessed using the PTSD Checklist at least 2 months after discharge. The severity of illness was measured using the Pediatric Risk of Mortality (PRISM III) score. MEASUREMENTS AND MAIN RESULTS: Of the 272 parents completing the initial assessment, 87 (32%) met symptom criteria for ASD. Of the 161 parents completing follow-up, 33 (21%) met symptom criteria for PTSD. PTSD symptoms at follow-up were associated with ASD symptoms assessed in the PICU, unexpected admission, parent's degree of worry that the child might die, and the occurrence of another hospital admission or other traumatic event subsequent to the index admission. Neither ASD nor PTSD responses were associated with objective measures of a child's severity of illness (PRISM III score). CONCLUSION: Traumatic stress symptoms are common among parents in the PICU and may persist long after discharge. There is strong support from these data for continued attention to supporting parents both during and after a child's PICU admission.     

Parenting stress and children with heart disease.

INTRODUCTION: Whereas the stress precipitated by the diagnosis of an infant's congenital abnormality is well recognized, this study examined parenting stress reported by parents of children older than 2 years with heart disease. METHOD: Abidin's Parenting Stress Index was administered to parents of children ages 2 to 12 years with known heart disease during a cardiology outpatient clinic visit. RESULTS: Parents of children with heart disease were more likely than the normative population to report excessive parenting stress, especially related to characteristics of the child that make them difficult to parent. Approximately 1 in 5 parents expressed clinically significant levels of stress. These parents expressed difficulty with setting limits or discipline of the child with heart disease. Parenting stress was not related to the severity of the child's heart disease, family socioeconomic status, or time since most recent surgery. Older age of the child was associated with higher parenting stress scores. DISCUSSION: Clinicians must assess parenting stress at each health care visit to provide appropriate support and anticipatory guidance to families of children with heart disease.