Adolescents’ involvement in decision making during specialty care visits for pediatric chronic illness: Development and evaluation of a new measure and implications for self-management

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PROJECT SUMMARY/ABSTRACT Shared decision making (SDM) between providers, parents, and youth is posited to be one of the processes of self-management for a chronic condition. Adequate conceptual models for involving youth in decision making must attend to the youth-parent-provider triad, recognize that there are multiple ways for youth to be involved in the process of decision making, and underscore that parent, provider, and youth decision making behaviors and roles should change with development. The field lacks empirical research to understand the nature of parent-youth-provider interactions about decisions and outcomes of different patterns of behavior over time, including adherence and health outcomes in youth with a chronic illness. This lack of research is due, at least in part, to the absence of feasible, reliable, valid, and conceptually sound measures that assess the complex interplay of decision making behaviors during medical encounters. The primary objective of this proposal is to develop a measure of youths’ involvement in decision making during outpatient visits for pediatric chronic illness (specifically, type 1 diabetes, sickle cell disease, juvenile idiopathic arthritis, and inflammatory bowel disease). Aim 1 is to utilize semi-structured qualitative interviews with youth, parents, and providers (Study 1, Phase 1) and cognitive interviews with youth and parents (Study 1, Phase 2) to develop items for a new measure- the Decision Making Involvement Scale-Medical Encounters (DMIS-ME)- and ensure alignment between participant interpretation and intent of the items. Aim 2 is to evaluate the psychometric properties and validity of the DMIS-ME, utilizing both classical and modern test theory. Validity will be assessed by examining whether DMIS-ME subscales are associated with youth age, decision self-efficacy, perceived global health, self-management skills, and adherence. Secondary Aim 2 is to develop a typology of visit profile classes based on DMIS-ME subscales, using latent class analysis, and examine whether the classes vary based on socio- demographics and variables tested in Aim 2. For Aim 2 (Study 2), we will enroll and assess youth and their parents, immediately after attending an outpatient specialty care visit related to their chronic illness. They will complete the DMIS-ME and measures of decision self-efficacy, perceived global health, self-management skills, and adherence. Aim 3 is to identify and describe ethnic/racial disparities in youths’ perceived involvement in decision making based on data from Aim 1 and 2. The development of the DMIS-ME addresses a critical gap in the field of pediatric self-management and decision making. The DMIS-ME can be used in future research to describe youths’ decision making involvement in a multidimensional way that accounts for the youth-parent-provider triad, identify outcomes of involvement, and inform the development and evaluation of interventions to enhance youth involvement in decision making, and ultimately, health behaviors and outcomes, as they mature.