Diabetologia最新文献

Aims/hypothesis: Children with early-stage (pre-symptomatic) type 1 diabetes are currently identified primarily via research-based screening programmes in Australia. Once identified, families live with the knowledge that their child has an increased chance of developing symptomatic, lifelong, insulin-requiring type 1 diabetes but have no specific clinical pathway available to them in Western Australia (WA) for accessing tailored support or education. This project aimed to co-design a new clinical pathway to address this unmet need.

Methods: Experience-based co-design (EBCD) methodology was applied, comprising three phases undertaken consecutively over 12 months. Recruitment for each phase was via open invitation with voluntary participation. Phases 1 and 2 involved facilitated community conversations and focus groups conducted separately for type 1 diabetes community members and healthcare professionals (HCPs). Data from these phases were analysed using deductive and inductive content analysis to identify key categories of information and a prototype clinical pathway was developed incorporating these. For phase 3, a combined workshop was held with all stakeholders to obtain feedback on the prototype, and refine it accordingly.

Results: In phase 1, 16 community members (people living with type 1 diabetes, families whose child or children had been screened for type 1 diabetes) and 36 HCPs (doctors, nurse educators, social workers, dietitians, a mental health nurse and administrative staff from Perth Children's Hospital) participated in separate community conversations. The following three key categories were identified: (1) the need for education; (2) the need for support and strategies for managing uncertainty; and (3) the need for information on disease-modifying therapies and access to clinical trials. In phase 2, seven community members and 11 HCPs participated in separate focus groups. The following key priorities were identified: (1) the need for access to HCPs skilled in supporting patients to manage uncertainty; (2) the need for flexibility in delivery modes (telehealth/in-person); (3) the need for early referral to relevant clinical trials; and (4) the need for reliable and up-to-date resources. In phase 3, three community members and three HCPs attended a combined workshop to provide feedback on a prototype clinical pathway and their feedback was incorporated into a final version.

Conclusions/interpretation: Application of EBCD methodology enabled the development of a new clinical pathway tailored to the needs of WA families with a child living with early-stage type 1 diabetes.

Aim/hypothesis: We aimed to assess perceived stress and influencing factors in mothers with children at risk of type 1 diabetes and coeliac disease who did, or did not, develop islet autoantibodies (IA) or coeliac autoantibodies (CA) by 4 years of age.

Methods: Maternal perceived stress was assessed postpartum and when their child was approximately 4 years of age using the Perceived Stress Scale (range 1-56) in mothers followed prospectively in the multicentre Environmental Determinants of Islet Autoimmunity (ENDIA) pregnancy-birth cohort. Data were analysed using linear mixed models.

Results: In total, 818 mothers were included (642 children had no detected IA or CA [Ab negative], 97 had IA detected [IA positive] and 79 had CA detected [CA positive]). The development of IA or CA in young children did not add significantly to the perceived stress of their mothers at a median of 1.8 [IQR 0.8-2.5] and 1.6 [IQR 0.9-2.3] years later, respectively (Ab negative, adjusted predicted mean score 23.8 [95% CI 22.7, 24.9]; IA positive, 22.8 [21.0, 24.6]; CA positive, 25.2 [23.3, 27.2]). Maternal type 1 diabetes did not alter this result. On exploratory predictor analysis a higher perceived stress score at 4 years was associated with a history of mental health illness (β=4.66 [95% CI 3.30, 6.02]) and mental health medication use (β=2.71 [0.64, 4.78]), independent of child autoantibody status or maternal type 1 diabetes status.

Conclusions/interpretation: Detection of IA or CA in their child did not increase ongoing maternal perceived stress after 1-2 years in a cohort that received consistent support and education. History of mental health illness and mental health medication use were associated with increased perceived stress in mothers regardless of their child's autoantibody status.