Objective
The objective of the present application is to pilot-test Spotlight-AQ for pre-visit planning among adolescents and young adults with type 1 diabetes. This proposal seeks to collect initial data on the acceptability, feasibility, and effectiveness of Spotlight AQ in this vulnerable population. The investigators will specifically recruit 50 adolescents and young adults with T1D from 2 diabetes centers in the U.S. Spotlight AQ will be used to identify patient-defined needs and to guide the topics discussed during 2 consecutive clinical encounters. In all, 10 clinicians will each deploy Spotlight AQ at 2 regularly scheduled, quarterly clinic visits for 5 participants. The investigators will measure acceptability to patients and providers, feasibility (completion rate for all components), glycemic control (Hemoglobin A1c), psychosocial outcomes (e.g., depression, diabetes distress), and engagement with self-management (mealtime insulin BOLUS score and frequent of blood glucose checks or %CGM wear time). Outcomes will be measured at 3months and 6 months post-baseline visit. Where appropriate, outcomes will be compared to baseline measures. A subset of participants and all providers will engage in semi-structured interviews to ascertain perceives barriers and facilitators to the implementation of Spotlight AQ in pediatric care.
Background Rationale
Spotlight-AQ was developed via iterative co-design with 200 adult patients with diabetes and 30 HCPs, followed by a pilot study confirming it is 100% acceptable and feasible, improving consultations without extending consultation length. A sample of n=49 adults participated (n=31 T1D, n=18 female; n=18 T2D n=10 male) in quantitative/qualitative research. 'Psychological burden' was most commonly cited as a priority concern for participants with T1D (n=27, 87.1%) followed by 'gaining more skills' (n=19, 61.3%), 'improving support' (n=8,25.8%) and 'diabetes-related treatment issues' (n=8, 25.8%). Similarly, 'psychological burden' was the primary concern for T2D participants (n=18,100%) followed by 'gaining more skills' (n=7,38.9%), 'improving support' (n=7,38.9%) and 'diabetes-related treatment issues' (n=4;22.2%). Patient and healthcare satisfaction were greatly improved. Consultations were more focused and collaborative. The next logical step in the assessment of Spotlight AQ is to implement it in the care of adolescents and young adults with type 1 diabetes, and to evaluate its acceptability and feasibility of deployment among those persons with diabetes as well as their healthcare providers.
Description of Project
The lack of understanding of the psychosocial burden of diabetes and the evolving consequences results in a negative impact on clinical practice with consequential negative outcomes for patients and increasing frustration for healthcare providers (HCPs). Routine visits focus on biomedical outcomes (e.g., hemoglobin A1c and glucose levels) using a didactic medical model. Complex and detailed algorithms are supplied by various guidelines for the management of blood glucose, lipids, blood pressure and long-term complications, but these relate only to medical management. Even goals which have been mutually agreed upon are often not followed up, leaving patients frustrated and HCPs struggling to provide tailored support. Typically, physicians interrupt their patients 11 seconds after they start talking; half of patients’ concerns are not discussed, and in half of health care visits, patients and physicians disagree on the central problem presented. Disagreement about treatment goals, inconsistency among healthcare teams and confusion about treatment priorities are associated with poorer outcomes.
Spotlight-AQ is a structured pre-visit planning technology that includes electronic assessments for the patient to complete, and a toolkit to guide the clinician on how to respond to each identified need. Spotlight AQ has been co-designed with people with diabetes from its inception. It is founded on an underpinning published psychosocial theoretical model of care and has been rigorously assessed in pilot and UK feasibility studies among adults with type 1 diabetes (T1D). Data show that Spotlight-AQ can reduce consultation length by 13-21% by making consultations more focused on the priority concerns of the individual and providing safe, evidence-based resources to meet those needs whether they be psychological, social or self-management or therapy-related. Previous research has shown that the most common priorities identified are knowledge gaps and psychological burden. These can, in the vast majority of cases, be addressed quickly in routine care. By applying an evidence-based and patient-centered approach to pre-visit planning, Spotlight AQ reduces the chances of problems exacerbating and requiring professional psychology support.
While Spotlight AQ has been applied to adults with T1D with positive outcomes, it is unknown whether it is translatable to the care of adolescents and young adults with T1D. This proposal seeks to collect initial data on the acceptability, feasibility, and effectiveness of Spotlight AQ in this vulnerable population. The investigators will specifically recruit 50 adolescents and young adults with T1D from 2 diabetes centers in the U.S. Spotlight AQ will be used to identify patient-defined needs and to guide the topics discussed during 2 consecutive clinical encounters. In all, 10 clinicians will each deploy Spotlight AQ at 2 regularly scheduled, quarterly clinic visits for 5 participants. The investigators will measure acceptability to patients and providers, feasibility (completion rate for all components), glycemic control (Hemoglobin A1c), psychosocial outcomes (e.g., depression, diabetes distress), and engagement with self-management (mealtime insulin BOLUS score and frequent of blood glucose checks or %CGM wear time). Outcomes will be measured at 3months and 6 months post-baseline visit. Where appropriate, outcomes will be compared to baseline measures. A subset of participants and all providers will engage in semi-structured interviews to ascertain perceives barriers and facilitators to the implementation of Spotlight AQ in pediatric care.
Anticipated Outcome
The anticipated outcome of the present research is demonstration of the acceptability and feasibility and initial effectiveness of Spotlight-AQ for pre-visit planning with adolescents and young adults with type 1 diabetes. The investigators will collect both quantitative and qualitative data. The investigators will specifically recruit 50 adolescents and young adults with T1D from 2 diabetes centers in the U.S. Spotlight AQ will be used to identify patient-defined needs and to guide the topics discussed during 2 consecutive clinical encounters. In all, 10 clinicians will each deploy Spotlight AQ at 2 regularly scheduled, quarterly clinic visits for 5 participants. The investigators will measure acceptability to patients and providers, feasibility (completion rate for all components), glycemic control (Hemoglobin A1c), psychosocial outcomes (e.g., depression, diabetes distress), and engagement with self-management (mealtime insulin BOLUS score and frequent of blood glucose checks or %CGM wear time). Outcomes will be measured at 3months and 6 months post-baseline visit. Where appropriate, outcomes will be compared to baseline measures. A subset of participants and all providers will engage in semi-structured interviews to ascertain perceives barriers and facilitators to the implementation of Spotlight AQ in pediatric care.
Relevance to T1D
Many individuals with type 1 diabetes- including adolescents and young adults- find that that their quarterly clinic visits fail to effectively address the barriers they experience in engaging in optimal daily self-management, achieving target glycemic control, and maintaining optimal quality of life. Spotlight-AQ has the potential to transform the experience of persons with type 1 diabetes and their HCP during the delivery of outpatient care, improving the effectiveness of care and satisfaction with care. Spotlight AQ also has high potential, given prior evidence in adults with diabetes, to improve glycemic, psychosocial, and quality of life outcomes.