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. 2024 Dec;41(12):e15416.
doi: 10.1111/dme.15416. Epub 2024 Aug 7.

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

Einas H Alkhatib  1 , Lauren Clary  1   2   3 , Angelica Eddington  1   2   3 , Randi Streisand  2   3 , Shideh Majidi  1   3
Affiliations

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

Einas H Alkhatib et al. Diabet Med. 2024 Dec.

Abstract

Aims: Caregiver 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.

Methods: The 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.

Results: A 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).

Conclusion: Clinic 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.

Keywords: caregiver; endocrinology; parent; psychology; screening; type 1 diabetes; youth.

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References

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