Feasibility of caregiver diabetes distress screening in routine clinical care of youth with type 1 diabetes

Abstract

AbstractAimsCaregiver diabetes distress (DD) consists of feeling overwhelmed, sad, and/or concerned; one‐third of parents of youth with type 1 diabetes (T1D) report severe distress up to 4 years after T1D diagnosis. PAID‐PR (Problem Areas in Diabetes Survey—Parent Revised) assesses DD primarily in research settings; however, less is known about its clinical utility. We aimed to identify the feasibility of implementing PAID‐PR screening at a diverse, academic US paediatric diabetes center during routine clinic follow‐up visits through quality improvement methodologies.MethodsThe PAID‐PR was intended to be offered in English to caregivers at all paediatric T1D appointments, by the front desk during appointment check‐in, or through REDCap prior to telehealth appointments or at local sites to all eligible caregivers. Adult psychosocial resources were provided to all, regardless of score. Forms were scored after appointments; scores ≥80 were referred to Diabetes Psychology providers for follow‐up.ResultsA total of 391 caregivers completed the PAID‐PR, though only half of eligible caregivers received it in person. Response rates were highest in person (90%), compared to REDCap (25%). In total, 27% (n = 107) scored ≥56 (DD). Of those with DD, 21% (n = 23) scored ≥80 and were referred to psychology. Demographics are reported in Table 1. PAID‐PR score was positively correlated to A1c (p = 0.038) and inversely to child age (p = 0.014).ConclusionClinic caregiver DD screening was implemented with higher response rates in person; however, expanding in‐person screening to all eligible caregivers is necessary. Furthermore, since the PAID‐PR was in English, some caregivers with DD were likely missed. Future directions include screening in additional languages.