Diabetes distress in Indian children with type 1 diabetes mellitus and their mothers

Abstract

BackgroundChildren and their mothers, who are usually the primary caregivers, are likely to be distressed due to type 1 diabetes (T1DM).Objectives(1) To assess diabetes-specific distress (DD) perceived by children and adolescents with T1DM and their mothers and association of distress between children and mothers. (2) To study the association of diabetes distress with glycemic control and disease duration.SubjectsChildren and adolescents with T1DM over eight years and their mothers.MethodsClinical data were recorded. DD was assessed by Problem Associated in Diabetes-Pediatric (PAID-Peds) (range 0–80) and Problem Associated in Diabetes-Parents Revised (PAID-PR) (range 0–72) questionnaires (higher scores indicate higher distress); administered to children and mothers, respectively. Sub-dimensions in questionnaires included diabetes-related emotional problems, and treatment-, food-, and social support-related problems. Correlation analysis (Spearman’s) was performed, and a paired t-test was used to compare PAID-Peds and PAID-PR (SPSS 25).ResultsMean PAID-Peds and PAID-PR scores in 67 children and mothers were 24.4 ± 18.1 and 31.9 ± 21.5, respectively (p=0.009), and a significant correlation was noted between their scores (R=0.45, p=0.001). PAID-Peds score was positively associated with HbA1c (R=0.25, p=0.04). Diabetes-related emotional problems of mothers and children (R=0.38, p=0.003), treatment problems (R=0.5, p=0.001), and food problems (R=0.24, p=0.05) correlated positively. Subdimension scores were significantly different in children and mothers except in the social support domain.ConclusionDD was higher in mothers than children; higher distress in children was associated with poor metabolic control. Evaluation of DD needs to be performed in children with T1DM.

The prevalence of diabetes distress and its association with glycaemia in young people living with insulin‐requiring‐diabetes in a regional centre in Australia

“…Our study demonstrated a high proportion of children, adolescents and carers experience diabetes distress, consistent with previous studies 8,10,15,16,18 . The mean percentage scores in our study ranged from 32 for children, to 44 for parents‐of‐adolescents, with a maximum possible percentage score being 100 (i.e.…”

“…However, other similar, though not identical, PAID questionnaires have used various thresholds between 34 and 50/100 to identify 'severe distress'. 8,15,16,[18][19][20] The mean distress scores reported by our cohort suggest that a large portion are experiencing moderate to severe diabetes distress.…”

“…While each questionnaire utilised a consistent Likert scale (1–6), they differed in the total number of questions asked. In order to compare total scores between groups, questionnaire results were transformed so that the results were presented as a standardised percentage score (0–100), methodology consistent with previous studies 15,16 …”

“…As such, in addition to the total score, the distress measures were assessed in this study for frequency of serious concerns (score 5–6) across the whole questionnaire, as well as within identified sub‐themes of diabetes distress. While these questionnaires utilise variable age‐appropriate language, they consistently feature questions addressing four specific themes: negative emotions, daily demands, long‐term outcomes, and the impact of diabetes on relationships 14,15 . Frequency of ‘serious concerns’ was compared to assess for differences in these themes of diabetes distress among children, adolescents and parents/carers.…”

“…In order to compare total scores between groups, questionnaire results were transformed so that the results were presented as a standardised percentage score (0-100), methodology consistent with previous studies. 15,16 In this clinical setting, it was common for the treating team to look not only at the total score, but also to scan for individual questions or themes causing severe distress, even when the total score described low-moderate levels of overall distress. As such, in addition to the total score, the distress measures were assessed in this study for frequency of serious concerns (score 5-6) across the whole questionnaire, as well as within identified sub-themes of diabetes distress.…”