Experiences of adults with adult-onset type 1 diabetes: a cross-sectional study

Type 1 diabetes (T1D) is a chronic, autoimmune disease where the pancreas does not produce enough insulin. T1D requires ongoing management across the lifespan through insulin regulation, monitoring of blood glucose levels, and adherence to strict diet and exercise plans. The most recent National Diabetes Services Scheme Australian Diabetes Map indicates that 129 210 Australians currently have T1D. Traditionally considered a childhood disease, more than half of all T1D diagnoses actually occur in adults aged >20 years. The aim of this study was to examine the experiences of individuals living with adult-onset T1D in relation to their diagnosis experience, access to health care, and post-diagnostic wellbeing.

An exploratory, cross-sectional study was undertaken. Participants completed an online survey delivered via Qualtrics detailing their experiences with adult-onset T1D. The survey contained four domains: (1) demographic information; (2) diagnosis experience; (3) access to care; and (4) post-diagnostic wellbeing, including the Hospital Anxiety and Depression Scale (HADS); and the Diabetes Distress Scale (T1-DDS). Data analysis was conducted using STATA SE (v16). Descriptive statistics (means, counts) were used to describe continuous data, and frequencies and odds ratios were used to describe categorical data.

One hundred and twenty adults (mean age 49 years; 78% female) with adult-onset T1D (mean age at diagnosis 37 years) completed the survey. The most common symptoms prior to diagnosis were excess thirst, fatigue, frequent urination, and unintended weight loss. Half (50%) the sample received their T1D diagnosis from a general practitioner (GP). Several participants reported being misdiagnosed by their GP initially, representing an unadjusted odds ratio of 3.1 (95% CI 1.5, 6.2). Nearly half of all participants presented with anxiety (mean 7 (s.d. 4)) on the HADS, and most reported moderate levels of diabetes-related distress according to the T1-DDS.

These findings provide a starting point to understanding the experiences of adults living with adult-onset T1D and can be used to raise awareness of their challenges and needs. These exploratory findings can also be used to inform a larger, population-based study.