Towards a balanced view of asthma in adolescence: Understanding the quality and divergence of self- and proxy-reports from African American adolescents and their caregivers.

Information obtained by interviewing patients and families is the keystone of history-taking and therapeutic decision-making in clinical settings and many research endeavors. Growing evidence suggests adolescents and caregivers give discordant responses when queried about the adolescent's asthma, although clinicians and researchers lack direction for understanding these discrepancies or making judgments about the relative quality of their reports. Using quantitative and qualitative methods, the aims of the studies comprising this dissertation were to assess agreement between the asthma-related self-reports of African American adolescents and the proxy-reports of their caregivers, and to examine factors that may influence the quality of and differences between the reports obtained. In the first study, cognitive interviews were conducted with 35 pairs of caregivers and adolescents with asthma. Participants were independently asked questions about the adolescents' asthma followed by scripted probes. Agreement was poor for items related to respiratory symptoms and functional status, but greater for questions about health care use. Characteristics associated with greater agreement between adolescent-caregiver reports of symptoms and functioning included older age of the adolescent, well-controlled asthma, and greater parental involvement in decision-making. Caregivers' knowledge into adolescents' day-to-day experiences with asthma was often limited to what they were told by the adolescents or individuals around the adolescent. Adolescents were less confident than caregivers in responding to questions related to medical history. In addition to difficulty recalling some information, respondents ascribed various meanings to the terms used in questions (e.g. wheeze), which may have affected concordance of reports. In the second study, agreement between asthma-related adolescent and caregiver proxy reports was examined using baseline data collected as part of a randomized controlled trial of a self-management program for urban teens (N=215 pairs). Adolescent and caregiver perceptions of symptoms and functioning diverged, while reports of health care use and medical history were more in agreement. Characteristics associated with greater adolescent-caregiver agreement for reports of symptoms and functioning included older age of the adolescent, less severe asthma, and less rescue inhaler use. Taken together, results suggest the self-reports of adolescents may be the best source of information regarding asthma symptoms and functioning, while caregivers are likely better positioned to report on adolescents' medical history. Adolescents and caregivers appear to provide similar information about health care use. Agreement can be affected by factors including age, level of disease control/severity, and the meanings respondents ascribe to questions. These results have implications for intervention and may guide the selection of informants for research and be considered by clinicians in history-taking and patient counseling.Ph.D.Health and Environmental SciencesPublic healthUniversity of Michigan, Horace H. Rackham School of Graduate Studieshttp://deepblue.lib.umich.edu/bitstream/2027.42/127056/2/3328850.pd

Congruence between Urban Adolescent and Caregiver Responses to Questions about the Adolescent’s Asthma

In clinical and research settings, it is increasingly acknowledged that adolescents may be better positioned than their caregivers to provide information in regard to their own health status, including information related to asthma. Very little is known, however, about the congruence between adolescent and caregiver responses to questions about asthma beyond reports of symptoms. We analyzed data for 215 urban, primarily African-American adolescent–caregiver pairs. Adolescents and caregiver reports concerning the adolescent’s asthma-related medical history were moderately correlated and not found to differ at the aggregate level. Correlations between adolescent and caregiver reports of the adolescent’s asthma symptoms and functional status were weak, although these differences deteriorated at the aggregate level. Adolescent–caregiver reports of symptoms and functioning were more likely to be in agreement if the adolescent was older, if school personnel were unaware of the child’s asthma, and if the adolescent’s asthma was classified as mild intermittent. For questions concerning the frequency of hospitalizations, emergency department visits, and physician visits, moderate correlations between adolescent and caregiver responses were noted, although with some differences at the aggregate level. Findings suggest that, when adolescents and their caregivers are asked about the adolescent’s asthma in clinical and research settings, the extent to which the two perspectives are likely to agree depends on the type of information sought. Clinicians and researchers may obtain more accurate information if questions about symptoms and functional status are directed toward adolescents