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.

Medication use and health care contacts among symptomatic children with asthma.

OBJECTIVE: Asthma morbidity and mortality continue to increase despite the availability of improved therapies. Little is known about the degree to which children with asthma use medications and health care services during symptomatic periods. This study documents prospectively the use of medications and health care contacts among children with active asthma symptoms. METHODS: Children age 6--19 years from 11 primary care settings in upstate New York were eligible for this study if they had 3 or more asthma-related medical visits during the prior year. We collected extensive information on asthma symptoms, medication use, and contacts with health care providers from biweekly phone interviews and daily diaries during a 3-month period. Symptoms were evaluated as the average number of symptomatic days per week. We tabulated the proportion of children using anti-inflammatory medications and having health care contacts according to the frequency of their symptoms during this 3-month period. Chi-square and regression analyses were used. RESULTS: One hundred sixty-five children participated (67% White, 24% Black, 9% Other). Sixty-five percent of the children in this sample had an average of more than 2 symptomatic days per week or more than 2 symptomatic nights per month during the 3-month study period and thus had mild persistent to severe asthma. Among these children, 25% received prednisone, and 46% reported the use of an inhaled maintenance medication during the monitoring period. Ten percent of children in this sample experienced an average of 6 or more symptomatic days per week during the study period. Among these highly symptomatic children, only 19% received prednisone, and 56% used a maintenance medication. Further, the proportion of children having contact with a health care provider during this 3-month period was 50% or less, even among the children experiencing the most frequent asthma symptoms. There were no differences in the proportion of children with health care contacts, prednisone use, or maintenance anti-inflammatory use among different gender or race categories or with different insurance types or places of residence. CONCLUSIONS: Even among children experiencing almost daily asthma symptoms, inadequate anti-inflammatory therapy is common, and few contacts with health care providers occur. These children are silently suffering at home and likely are experiencing preventable morbidity.

Symptom perception and evaluation in childhood asthma.

BACKGROUND: Inaccuracies in symptom perception may contribute to morbidity and mortality in childhood asthma. OBJECTIVE: To systematically examine the accuracy of symptom perception on the part of children with asthma and their parents, as well as their interpretation and evaluation of the symptoms. METHOD: Twenty-eight patient/parent pairs from suburban and underserved urban pediatric populations participated in a 5-week protocol tracking subjective assessments of asthma severity (visual analog scales) and peak expiratory flow rates. Relationships between perceptual accuracy and demographic and disease factors were investigated. RESULTS: Adolescents were more accurate than school-aged children, more accurate children had better morbidity outcomes, and African American parents were more accurate than Caucasian parents. Socioeconomic status did not affect accuracy. Both children and parents missed early symptoms and waited too long prior to intervening in an exacerbation. CONCLUSIONS: There are multiple opportunities for error in symptom perception and evaluation. Identification of the source of error is critical to the effective utilization of education on self-management.

Standards and practice guidelines as the foundation for clinical practice.

The structure and organization of health care delivery are in the midst of rapid change. Health care providers from a variety of disciplines are being challenged to define their practice and the expected patient outcomes resulting from their processes of care delivery. Standards and clinical practice guidelines are important tools for enhancing the quality of health care delivery and for documenting care. The article describes a process for developing standards and clinical practice guidelines and presents an organizational scheme for them. Based on recommendations from diverse national groups, a format for practice guidelines is presented, and a system for implementation and ongoing evaluation is recommended.

An asthma management program for urban minority children.

Morbidity and mortality continue to increase for children with asthma. Minority children have disproportionately higher rates of adverse outcomes on almost all disease measures. An asthma management program for urban minority children was developed with research-based intervention strategies and insights gained from the child and family perspectives on illness and health care delivery. The goal of the intervention program was to deliver care that was culturally sensitive, focused on decreasing barriers to appropriate self-management, and committed to promoting partnerships among children, families, the health care system, and the broader community.

Illness narratives of children with asthma.

A child's own story of the illness experience is a necessary starting point for intervention strategies and outcomes research. A descriptive study of perceptions of asthma among 28 children (6-18 years old) with moderate or severe asthma was part of a larger study of symptom perception of asthma in childhood. The study sample included 36% Caucasian, 46% African American, and 18% other ethnic groups, encompassing a range of socioeconomic groups. Open-ended, semi-structured interviews were used to elicit children's perceptions of the impact of asthma on their lives, things that bothered them about having asthma, and worries they experienced. Visual analogue scales were used to assess several values. Themes that emerged in data analysis included (a) "I can't," (b) restrictions, (c) symptoms and treatments, (d) death, and (e) adaptation. Overall, asthma had a profound impact on study children, and certain themes were more predominant among subgroups of race and age; notably, the death theme was more prominent among African-American children.

Child rearing beliefs in the African-American community: implications for culturally competent pediatric care.

Cultural competence is increasingly acknowledged as an essential component of nursing care within the heterogeneous society our nation has become. A necessary antecedent to competence is an understanding of, and respect for, the beliefs and priorities of the families being served. Literature from a variety of disciplines in the areas of attachment, socialization agendas, discipline, and parental teaching is reviewed to provide a description of the cultural context for child rearing in African-American families. Implications for clinical practice are discussed.

Children's illness concepts: old and new paradigms.

Determining what children know and are able to comprehend about illness is an important component of clinical care. This article reviews and critiques the cognitive and developmental approach to children's illness concepts and proposes an alternative paradigm. The author discusses the expert/novice model and methodology and its implications for education and clinical interventions.