Objective
The present study has three objectives. Aim 1 will adapt the 3-Act Model for GOC discussions with caregivers of youth with T1D utilizing stakeholder input including psychologists specializing in T1D care, pediatric endocrinologists, and social workers. Psychology providers will be trained to conduct goals of care interviews. Aim 2 will involve conducting goals of care interviews, determining feasibility and efficacy of conducting GOC interviews with caregivers of youth with T1D, and deploying the 3-Act model in T1D clinical setting. Interviews will be recorded, transcribed, and analyzed using qualitative software and methods. Aim 3 will establish goals of care for caregivers of youth with T1D. Goals of care will be described and associations between goals of care and patient/caregiver characteristics will be explored.
Background Rationale
Type 1 diabetes (T1D) is one of the most prevalent chronic illnesses impacting youth in the United States. Approximately 187,000 youth under age 20 live with T1D in the U.S., with incidence both in the U.S. and worldwide increasing rapidly (CDC, 2020). The American Diabetes Association (ADA) establishes treatment targets for youth with T1D. It is recommended that youth with T1D maintain an HbA1c <7% to minimize long-term sequelae, including microvascular and macrovascular complications (American Diabetes Association Professional Practice Committee, 2021). Managing T1D and reducing HbA1c in youth requires caregivers to make timely and continuous health-related decisions for their children. Caregivers of youth with T1D must monitor their child's blood glucose levels, estimate foods' carbohydrate content, administer insulin, and more. These responsibilities, and subsequently, achieving normoglycemia, can occur in various ways. Caregivers select modalities of information gathering (i.e., using food labels, books, or the Internet to calculate carbohydrate content and suggested insulin dose), blood glucose monitoring (i.e., manually or via continuous glucose monitor), and insulin administration (i.e., multiple daily injections, insulin pump, hybrid closed loop system). These decisions may significantly impact youths' immediate and long-term diabetes-related health, and caregivers' and youths' quality of life.
Goals of care (GOC) discussions explore a patient's values, beliefs, and priorities in the context of a clinical decision or encounter (Comer et al., 2020). Existing studies have examined GOC to assess the alignment of a patient's values and the medical care they receive via facilitating GOC discussions. When GOC discussions are absent and patients receive medical care incongruent with their values, patients can experience healthcare over-utilization, significant distress, and report worse overall quality of life (Wright et al., 2008). In the context of palliative or end of life care, novel approaches to narrative based GOC discussions have been evaluated and reported. The 3-Act Model is a patient-centered, narrative approach to GOC and includes a prologue, three acts, and an epilogue. Results of the study revealed improvements in GOC communication while increasing trainees' proficiency in facilitating these conversations. As a result, training in the 3-Act Model was permanently embedded into the medical residency curriculum.
The utility of facilitating GOC discussions with caregivers of youth with T1D is multifaceted. Existing literature posits that individuals with T1D make 180 health-related decisions per day (Digitale, 2014). Evaluating caregivers' goals of care in T1D management allows clinicians to better understand caregivers' decision-making on behalf of their children. Understanding a person's value system, perception of health and health management, awareness of treatment options, expectations/hopes for interacting with the healthcare system, and unique aspects of the child's condition and functioning impact caregivers' goals. Ultimately, their goals influence health-related behaviors and treatment decisions. Facilitating GOC discussions in T1D aligns with the ADA Standards of Care (2023) recommendation to provide diabetes care using a communication style that uses “person-centered, culturally sensitive, and strength-based language and active listening; elicits individual preferences and beliefs; and assesses literacy, numeracy, and potential barriers to care" (ElSayed et al., 2023).
Understanding GOC allows clinicians to assess caregivers' knowledge, awareness, and understanding of the condition and its treatment options. Evaluating GOC also allows for assessing values, hopes, and expectations for treatment. While treatment targets and medically-focused GOC for youth with T1D (i.e., normoglycemia, HbA1c <7%) exist, no study has established person-centered GOC or conducted GOC discussions with caregivers of youth with T1D. This study aims to apply a modified 3-ACT approach to facilitate GOC discussions with caregivers of youth with T1D and understand patient-and caregiver GOC in a diverse population of youth with T1D.
Description of Project
Type 1 diabetes (T1D) is one of the most prevalent chronic illnesses impacting youth in the United States. Approximately 187,000 youth under age 20 live with T1D in the U.S., with incidence both in the U.S. and worldwide increasing rapidly (CDC, 2020). Management of T1D is complex, and individuals with T1D make 180 health-related decisions per day (Digitale, 2014). The American Diabetes Association (ADA) establishes treatment targets for youth with T1D, but goals of care assessing patient/caregiver values, hopes, and expectations for treatment have not been established.
Evaluating caregivers' goals of care in T1D management allows clinicians to better understand caregivers' decision-making on behalf of their children. Understanding a person's value system, perception of health and health management, awareness of treatment options, expectations/hopes for interacting with the healthcare system, and unique aspects of the child's condition and functioning impact caregivers' goals. Ultimately, their goals influence health-related behaviors and treatment decisions. This study aims to adapt the 3-Act Model, a narrative, person-centered approach to facilitate GOC discussions, to caregivers of youth with T1D and to understand patient-and caregiver GOC in a diverse population of youth with T1D.
Anticipated Outcome
The present study's anticipated outcomes are fourfold. First, the 3-Act Model will be adaptable to caregivers of youth with T1D and psychology providers will be proficient in conducting GOC interviews. Next, the tailored 3-Act Model will be feasible and acceptable in the T1D setting. Third, qualitative themes of GOC will emerge and goals of care will be established. Finally, goals of care themes will be associated with demographic and disease outcome characteristics, including youth race/ethnicity, age, HbA1c, diabetes duration, caregiver sex, household income, and religious/spiritual preferences.
Relevance to T1D
This study will develop and evaluate the adaptation, feasibility, and implementation of the 3-Act Model for T1D, a tailored narrative-based approach to evaluating GOC for caregivers of youth with T1D. Existing literature posits that individuals with T1D make 180 health-related decisions per day (Digitale, 2014). The utility of facilitating GOC discussions with caregivers of youth with T1D is multifaceted. Evaluating caregivers' goals of care in T1D management allows clinicians to better understand caregivers' decision-making on behalf of their children. Understanding a person's value system, perception of health and health management, awareness of treatment options, expectations/hopes for interacting with the healthcare system, and unique aspects of the child's condition and functioning impact caregivers' goals. Ultimately, their goals influence health-related behaviors and treatment decisions. Facilitating GOC discussions in T1D aligns with the ADA Standards of Care (2023) recommendation to provide diabetes care using a communication style that uses “person-centered, culturally sensitive, and strength-based language and active listening; elicits individual preferences and beliefs; and assesses literacy, numeracy, and potential barriers to care" (ElSayed et al., 2023). Further, the current aims align with the JDRF mission of supporting efforts that combine research and clinical work and the Johns Hopkins mission to integrate patient preferences into clinical care in inpatient and outpatient settings. The proposed study’s translational benefits include using novel methods to enhance scientific inquiry and promote communication between patents, families, and providers. Translating patient voices into tangible interventions to support decision-making has the potential to inform psychological science, technology development, and health policy, with the ultimate goal of reducing the cognitive burden of T1D.