Abstract
Introduction:
The American Diabetes Association recommends screening for diabetes distress in individuals with diabetes and their caregivers. We evaluated the clinical utility of the Problem Areas in Diabetes–Parent Revised version (PAID-PR) distress screener in caregivers of young children with type 1 diabetes mellitus (T1DM) and examined associations between diabetes distress, demographic and clinical characteristics, and diabetes technology use.
Methods:
In this prospective survey study, caregivers of children with T1DM aged <8 years completed the PAID-PR during multidisciplinary diabetes clinic visits. The PAID-PR scores and clinical data were collected. Associations between diabetes distress, clinical characteristics, and diabetes technology use were assessed using the Fisher exact, Wilcoxon rank sum, and 2-sample t tests. Distress related to theoretical vs immediate burdens was compared using paired t tests.
Results:
Thirty caregivers (73.3% mothers) of children with T1DM (mean age [SD] = 5.4y [1.9], 70% non-Hispanic White, 60% commercially insured) completed the PAID-PR. Child median diabetes duration was 1.5 years (interquartile range [IQR] = 0.6, 2.3), median HbA1c 7.6% (IQR = 6.9, 8.1). All children used continuous glucose monitors, 73.3% Omnipod 5, 6.7% Tandem Mobi, and 20% multiple daily injections. The median distress score was 30.6/100 (IQR = 22.2, 36.1; the lowest 75th percentile of distress = 24.3 [12.5, 31.9]; the highest 25th percentile = 42.9 [38.6, 52.8]). Scores did not differ by demographics, clinical characteristics, or diabetes technology use. Caregivers indicated significantly greater distress from theoretical vs immediate burdens (P < .0001).
Conclusions:
Caregivers of young children with T1DM experience greater distress related to anticipated future (theoretical) burdens than with immediate diabetes management. Understanding these distress patterns can help guide psychosocial supports.
Keywords: automated insulin delivery systems, caregivers, diabetes distress, diabetes technology, PAID-PR, young children
Introduction
Diabetes distress refers to the negative emotions (fear, grief, sadness, guilt, frustration, anger, overwhelm, and burnout) arising from having, living with, and managing diabetes.1,2 Studies suggest that 33% to 60% of adolescents with type 1 diabetes mellitus (T1DM) have diabetes distress. Furthermore, approximately 27% of caregivers of children with T1DM experience elevated levels of diabetes distress.1-3 The American Diabetes Association (ADA) 2026 Standards of Care recommend “at least annual screening for diabetes distress in people with diabetes, caregivers, and family members.” 4
In children, the responsibility of diabetes management often falls to the caregiver. Crucial tasks of management include carbohydrate counting, insulin administration, prevention and treatment of glucose fluctuations, managing supplies/refills, and navigating financial barriers, all with the goal of maintaining safety and preventing long-term complications. High levels of caregiver diabetes distress may contribute to premature transfer of diabetes management responsibilities before children are developmentally ready, potentially resulting in suboptimal glycemic health. 5 Parental diabetes distress has been associated with higher HbA1c, greater diabetes-specific family conflict, and lower quality of life 5 and may be a stronger predictor of HbA1c than insulin administration modality, or even the child’s own diabetes distress level. 6 Automated insulin delivery (AID) systems and continuous glucose monitors (CGMs) have also been found to improve glycemic outcomes (HbA1c and time in range), promote treatment satisfaction, and increase quality of life in caregivers and children with T1DM.7-9 Diabetes technology has also been shown to decrease levels of diabetes distress in adults with diabetes and pediatric caregivers,7-9 although in a recent meta-analysis, this decreased distress was only seen in caregivers and not in children’s own levels of distress. 9
The Problem Areas in Diabetes (PAID) survey was initially developed to evaluate diabetes-related burden in adults with type 1 or type 2 diabetes. 10 Since then, various age-appropriate versions have been developed for the pediatric population and their caregivers.5,11,12 The Problem Areas in Diabetes–Parent Revised version (PAID-PR) is an 18-item self-report measure of distress among caregivers of children, ages 8 to 18 years with T1DM. It assesses distress affecting both immediate/daily life and concerns and burden relating to the future.1,5 The majority of literature surrounding the PAID-PR comes from investigations of diabetes distress in caregivers of older children in the research setting; however, some centers have recently adopted the PAID-PR for routine diabetes distress screening clinically in caregivers of children ages 5 or 6 years and older.1,13 The PAID-PR has also been used in technology studies in caregivers of preschool-age children, ages 2 to 6 years such as the MiniMed 780G study. 14 However, few publications assess diabetes distress in caregivers of very young children in the clinical setting, with no studies to our knowledge including caregivers of children younger than 2 years of age.
Our multidisciplinary diabetes clinic embeds psychology and social work services to support the psychosocial needs of youth with diabetes and their families, providing family-centered care, screening for social determinants of health, and coordinated psychosocial support. 15 As part of a quality improvement initiative, our psychology and social work team routinely screens caregivers of children aged <8 years with T1DM for diabetes distress using the PAID-PR. Building on this initiative, the present study aimed to evaluate the clinical utility of the PAID-PR in caregivers of young children with T1DM and to investigate the relationships between diabetes distress, demographic and clinical characteristics, and use of diabetes technologies, including CGMs and AID systems.
Methods
Study Design and Participants
This prospective survey study was conducted as part of an ongoing quality improvement initiative to routinely screen caregivers for diabetes distress at an academic pediatric diabetes center in Baltimore, Maryland. The PAID-PR was administered to caregivers of children (<8 years) at the child’s routine diabetes care visit from December 2024 to December 2025.
Caregivers of children less than 8 years of age with T1DM were eligible for inclusion. Caregivers of patients with prediabetes, type 2 diabetes mellitus (T2DM), cystic fibrosis–related diabetes (CFRD), steroid-induced diabetes, and non-English speakers were excluded. The study was approved by the Johns Hopkins Institutional Review Board, with a waiver of informed consent.
Study Procedures
Psychology and social work services are embedded in our multidisciplinary diabetes clinic and are available to meet patients as needed but are recommended annually. Eligible caregivers of youth age <8 years were given the PAID-PR survey on paper when meeting with psychology or social work at routine diabetes clinic visits. Although families are encouraged to meet with psychology or social work annually, not all families are able to do so due to time restrictions or resource availability. Caregivers filled out the survey during clinic visits, and total scores were recorded in the child’s electronic medical record (EMR) with individual question scores recorded in the Research Electronic Data Capture (REDCap) tool. 16 Each question is scored from 0 “agree” to 4 “disagree.” Lower scores on individual questions indicated more agreement with the statement and greater distress. After being reverse-scored, PAID-PR scores range from 0 to 100, with higher scores indicating more distress and burden. 5
Surveys were reviewed by members of the behavioral psychology team (ie, licensed psychologists, postdoctoral fellows) and/or a social worker prior to meeting with the family. These clinicians discussed the surveys with caregivers during their consultation, reviewed items that were endorsed by the caregiver, and provided mental health psychoeducation, brief intervention, resources, and referrals as indicated.
Data Collection
Caregivers’ sex, age, race, ethnicity, insurance type, household income, and education levels were self-reported. Self-reports and EMR were reviewed to collect child’s demographics (sex, age, race, and ethnicity), parental relationship status, number of caregivers and children in the household, diabetes duration, HbA1c, and diabetes management history, including use of CGM, insulin injections, or AID systems. All the data including results from paper surveys were recorded in (REDCap), 16 and 2 independent study team members reviewed the data.
Statistical Analysis
Summary data are presented as frequencies and percentages for categorical variables, as means and standard deviation (SD) for normally distributed continuous variables, and as medians and interquartile ranges (IQRs) for non-normally distributed continuous variables.
Each item on the PAID-PR is reverse-scored, and the total score ranges from 0 to 100. A higher total score indicates greater distress. In a prior study of the PAID-PR by Tinsley et al, 17 a cut-off of ≥56 was used to identify “referrable distress” based on the highest 25th percentile of distress within their cohort. 17 Similarly, we identified a cut-off score of ≥36.1 based on the highest 25th percentile (and lowest 75th percentile) of distress in this cohort. This cut-off reflects our patient population of younger children with shorter durations of diabetes and overall lower levels of distress. The PAID-PR questions were also separated into “immediate” (the daily, current, and practical burden of diabetes) and “theoretical” burdens (worries regarding the future) based on factor analysis proposed by Markowitz et al. 5
Differences in demographics, clinical characteristics, and diabetes technology usage between the lowest 75th percentile and the highest 25th percentile groups were tested using the equal-variance 2-sample t test or Wilcoxon rank-sum tests for continuous variables and chi-square, or the Fisher exact tests, as appropriate, for categorical variables. Paired t tests assessed differences between mean scores for theoretical vs immediate burdens of diabetes. A P value of < .05 indicated statistical significance.
Results
Patient Clinical Characteristics and Demographics
A total of 30 caregivers of children with T1DM were included in the study, with a median caregiver age 35.0 (IQR = 31.0, 40.0) years. In this cohort, of the 25 caregivers with known education status, 64% had education beyond high school, and of the 21 with known income data, 86% of families had an annual household income of $50,000 or more. In total, 80% of households had more than 1 caregiver, with 56.7% of households having 2 or fewer children. As shown in Table 1, the mean child age was 5.4 (SD = 2.0) years; 50% were female; 70% of patients identified as White, 3.3% were Hispanic, and 60% had commercial insurance. Median diabetes duration was 1.5 (IQR = 0.6, 2.3) years with a median HbA1c of 7.6% (IQR = 6.9, 8.1). All children (100%) were using CGMs—73.3% were using Omnipod 5, 6.7% were using Tandem Mobi, and 20% were using multiple daily injections (MDI) for diabetes management. In this cohort, age did not differ between children using AID systems and those using MDI. However, all children with a diabetes duration >1 year were using AID systems compared with approximately half of those with a diabetes duration of ≤1 year (100% vs 54%, P = .003). Of the 30 children, 10% regularly attended psychotherapy.
Table 1.
Characteristics of Participants Completing PAID-PR.
| PAID-PR score | P value | |||
|---|---|---|---|---|
| Highest 25th percentile (≥36.1) | Lowest 75th percentile (<36.1) | Total number of participants | ||
| (N = 8) | (N = 22) | (N = 30) | ||
| Child characteristics | ||||
| Child’s age at baseline, mean (SD) | 4.7 (2.47) | 5.6 (1.80) | 5.4 (1.99) | .33 a |
| Child’s female sex, n (%) | 4 (50.0%) | 11 (50.0%) | 15 (50.0%) | .99 b |
| Child’s race, n (%) | .27 c | |||
| White | 4 (50.0%) | 17 (77.3%) | 21 (70.0%) | |
| Black | 3 (37.5%) | 4 (18.2%) | 7 (23.3%) | |
| Asian | 1 (12.5%) | 1 (4.5%) | 2 (6.7%) | |
| Child’s ethnicity, n (%) | .99 c | |||
| Non-Hispanic/Latino | 8 (100.0%) | 21 (95.5%) | 29 (96.7%) | |
| Hispanic/Latino | 0 (0.0%) | 1 (4.5%) | 1 (3.3%) | |
| Insurance status, n (%) | .99 c | |||
| Medicaid | 3 (37.5%) | 8 (36.4%) | 11 (36.7%) | |
| Commercial/private | 5 (62.5%) | 13 (59.1%) | 18 (60.0%) | |
| Military | 0 (0.0%) | 1 (4.5%) | 1 (3.3%) | |
| Duration of diabetes at baseline, median (IQR) | 1.3 (0.6, 2.1) | 1.6 (0.6, 2.3) | 1.5 (0.6, 2.3) | .94 a |
| HbA1c, median (IQR) | 7.1 (6.9, 8.0) | 7.8 (6.9, 8.1) | 7.6 (6.9, 8.1) | .32 a |
| CGM use, n (%) | 8 (100.0%) | 22 (100.0%) | 30 (100.0%) | |
| Insulin delivery method, n (%) | .63 c | |||
| Omnipod 5 | 6 (75.0%) | 16 (72.7%) | 22 (73.3%) | |
| Tandem Mobi | 1 (12.5%) | 1 (4.6%) | 2 (6.7%) | |
| Injections | 1 (12.5%) | 5 (22.7%) | 6 (20.0%) | |
| Does the patient attend psychotherapy?, n (%) | .55 c | |||
| No | 8 (100.0%) | 19 (86.4%) | 27 (90.0%) | |
| Yes | 0 (0.0%) | 3 (13.6%) | 3 (10.0%) | |
| Caregiver characteristics | ||||
| Caregiver’s age, median (IQR) | 34.0 (30.0, 36.0) | 35.0 (31.5, 42.5) | 35.0 (31.0, 40.0) | .39 a |
| Female caregiver, n (%) | 6 (75.0%) | 16 (72.7%) | 22 (73.3%) | .90 b |
| Education, n (%) | .54 c | |||
| High school or less | 1 (12.5%) | 8 (36.4%) | 9 (30.0%) | |
| More than high school | 5 (62.5%) | 11 (50.0%) | 16 (53.3%) | |
| Unknown | 2 (25.0%) | 3 (13.6%) | 5 (16.7%) | |
| Income, n (%) | .99 c | |||
| ≥$50 000 | 5 (62.5%) | 13 (59.1%) | 18 (60.0%) | |
| <$50 000 | 1 (12.5%) | 2 (9.1%) | 3 (10.0%) | |
| Unknown | 2 (25.0%) | 7 (31.8%) | 9 (30.0%) | |
| Number of primary caregivers, n (%) | .65 c | |||
| >1 | 6 (75.0%) | 18 (81.8%) | 24 (80.0%) | |
| =1 | 2 (25.0%) | 4 (18.2%) | 6 (20.0%) | |
| Number of children in the household, n (%) | .99 c | |||
| >2 | 3 (37.5%) | 10 (45.5%) | 13 (43.3%) | |
| ≤2 | 5 (62.5%) | 12 (54.5%) | 17 (56.7%) | |
| Parental relationship status, n (%) | .99 c | |||
| Married | 6 (85.7%) | 13 (76.5%) | 19 (79.2%) | |
| Separated | 1 (14.3%) | 1 (5.9%) | 2 (8.3%) | |
| Cohabiting | 0 (0.0%) | 2 (11.8%) | 2 (8.3%) | |
| No/minimal relationship with second caregiver | 0 (0.0%) | 1 (5.9%) | 1 (4.2%) | |
| Missing | 1 | 5 | 6 | |
| Total score, median (IQR) | 42.9 (38.6, 52.8) | 24.3 (12.5, 31.9) | 30.6 (22.2, 36.1) | <.0001 a |
Wilcoxon rank sum.
Chi-square.
Fisher exact test.
Distress Screening Scores and Association With Clinical Characteristics and Technology Use
The median distress score was 30.6 (IQR = 22.2, 36.1) with 2 families having referrable distress (scores >56). As shown in Table 1, there were no statistically significant differences in distress scores by demographics or clinical factors. There were no differences in distress scores when comparing patients with diabetes duration of ≤1 year (n = 13) to patients with a duration >1 year (n = 17) (P = .49). Furthermore, there was no difference in distress scores between those using AID systems and patients on MDI, including when adjusted for age.
In this cohort, caregivers with distress scores in the lowest 75th percentile (score < 36.1, n = 22) had a median distress score of 24.3 (12.5, 31.9) compared with 42.9 (38.6, 52.8) among caregivers in the highest 25th percentile (n = 8 caregivers) (Table 1). When evaluating the lowest 75th percentile of distress and highest 25th percentile of distress with respect to insulin delivery method, there was no statistically significant difference (P = .63). In addition, among caregivers in the highest 25th percentile of distress, there was no difference in the proportion of patients using AID systems compared to those using MDI (P = .99). There were also no significant differences between responses to individual or subgroups of questions on the PAID-PR based on MDI vs AID systems.
Immediate vs Theoretical Burdens
The PAID-PR questions can be separated into “immediate” (the daily, current, and practical burden of diabetes) and “theoretical” burdens (worries regarding the future). 5 Caregivers indicated significantly greater distress from theoretical compared to immediate burdens [2.3 (0.84) vs 3.4 (0.43), P < .001], with lower individual question scores reflecting greater burden (Table 2). In addition, those in the highest 25th percentile of distress had an even greater difference between theoretical and immediate burden questions (−1.7, 95% CI, −2.3 to −1.2, P = .008) compared to those in the lowest 75th percentile of distress (−0.9, 95% CI, −1.1 to −0.6, P < .001).
Table 2.
Immediate vs Theoretical Burden Scores: Highest 25th Percentile vs Lowest 75th Percentile of Caregivers.
| Theoretical burdens | Immediate burdens | Difference (theoretical minus immediate) (95% CI) | P value | |
|---|---|---|---|---|
| Lowest 75th percentile of distress score (N = 22) | 2.7 (0.6) | 3.5 (0.4) | −0.9 (−1.1 to −0.6) | <.001 |
| Highest 25th percentile of distress score (N = 8) | 1.3 (0.6) | 3.1 (0.4) | −1.7 (−2.3 to −1.2) | .008 |
| Total | 2.3 (0.8) | 3.4 (0.4) | −1.1 (−1.4 to −0.8) | <.001 |
Paired t tests comparing theoretical vs immediate mean scores. Lower value indicates more agreement/more distress. Theoretical vs immediate burden categorization per Markowitz et al. 5
Specific theoretical burden questions that showed significantly greater distress in the highest 25th percentile vs the lowest 75th percentile of distress included (1) “I worry about my child having a low blood sugar” (0.6 [0.7] vs 2.3 [1.2], P = .001); (2) “I feel like the diabetes police” (1.4 [1.1] vs 3.4 [0.9], P < .0001); (3) “I feel upset when my child’s blood sugars are out of range” (1.0 [1.1] vs 2.4 [1.2], P = .0093); (4) “I feel angry when I think about my child having/living with diabetes” (1.9 [1.5] vs 3.4 [1.0], P = .0036); (5) “I worry about the future and the possibility of serious complications for my child” (1.0 [1.1] vs 2.6 [0.9], P = .0004); (6) “I feel upset when my child’s diabetes management is off track” (0.9 [1.1] vs 2.6 [0.9], P = .0004); and (7) “I worry that my child will not be taken care of when away from home” (1.0 [0.8] vs 2.7 [1.2], P = .0008).
Similarly, for immediate burdens questions, (1) “I feel that diabetes takes up too much mental and physical energy” (1.6 [0.7] vs 3.0 [0.9], P = .0005) and (2) “I feel burned out by the constant effort to manage diabetes” (2.3 [1.0] vs 3.3 [0.8], P = .00721) demonstrated significantly greater distress in the highest 25th compared to the lowest 75th percentile (Table 3).
Table 3.
PAID-PR Theoretical vs Immediate Burden Questions and Scores (Lowest 75th Percentile vs Highest 25th Percentile of Caregivers).
| Question | Highest 25th percentile of distress (N = 8) | Lowest 75th percentile of distress (N = 22) | Total (N = 30) | P value a | Mean difference | |||
|---|---|---|---|---|---|---|---|---|
| Theoretical burdens | Mean | SD | Mean | SD | Mean | SD | ||
| I worry about my child having a low blood sugar. | 0.6 | 0.7 | 2.3 | 1.2 | 1.9 | 1.3 | .001 | 1.7 |
| I feel like the diabetes police. | 1.4 | 1.1 | 3.4 | 0.9 | 2.9 | 1.3 | < .001 | 2.0 |
| I feel upset when my child’s blood sugars are out of range. | 1.0 | 1.1 | 2.4 | 1.2 | 2.0 | 1.3 | .009 | 1.3 |
| I feel angry when I think about my child having/living with diabetes. | 1.9 | 1.5 | 3.4 | 1.0 | 3.0 | 1.3 | .004 | 1.5 |
| I worry about the future and the possibility of serious complications for my child. | 1.0 | 1.1 | 2.6 | 0.9 | 2.2 | 1.2 | < .001 | 1.5 |
| I feel upset when my child’s diabetes management is off track. | 0.9 | 0.8 | 2.3 | 1.2 | 1.9 | 1.2 | < .001 | 1.4 |
| I worry that my child will not be taken care of when away from home. | 1.0 | 0.8 | 2.7 | 1.2 | 2.3 | 1.3 | .001 | 1.7 |
| I feel scared when thinking about my child having/living with diabetes. | 1.9 | 0.6 | 2.5 | 1.0 | 2.4 | 1.0 | .09 | 0.7 |
| I feel constantly concerned about what my child eats. | 2.1 | 1.5 | 2.5 | 1.4 | 2.4 | 1.4 | .53 | 0.4 |
| Immediate burdens | ||||||||
| I feel that diabetes takes up too much mental and physical energy. | 1.6 | 0.7 | 3.0 | 0.9 | 2.6 | 1.0 | .001 | 1.4 |
| I feel burned out by the constant effort to manage diabetes. | 2.3 | 1.0 | 3.3 | 0.8 | 3.0 | 1.0 | .007 | 1.1 |
| I feel discouraged with my child’s diabetes treatment plan. | 3.6 | 0.5 | 3.9 | 0.6 | 3.8 | 0.6 | .35 | 0.2 |
| I have difficulty dealing with school staff (eg, nurses, teachers, principals). | 3.3 | 0.5 | 3.6 | 0.7 | 3.6 | 0.6 | .31 | 0.3 |
| I feel that my child is deprived regarding food and meals. | 3.3 | 0.9 | 3.8 | 0.5 | 3.6 | 0.7 | .057 | 0.5 |
| I feel that my child is excluded from activities/events because of his/her diabetes. | 3.5 | 0.8 | 3.4 | 1.2 | 3.4 | 1.1 | .77 | −0.2 |
| I feel alone in managing my child’s diabetes. | 3.1 | 0.8 | 3.5 | 0.8 | 3.4 | 0.8 | .27 | 0.4 |
| I feel that other family members are not supportive in managing my child’s diabetes. | 3.5 | 1.4 | 3.5 | 1.0 | 3.5 | 1.1 | .94 | 0.0 |
| I worry whether or not my child will remember to eat his/her snack. | 3.4 | 0.9 | 3.7 | 0.6 | 3.6 | 0.7 | .21 | 0.4 |
Equal-variance two-sample t test.
Discussion
This study demonstrates the value of implementing routine diabetes distress screening among caregivers of young children with T1DM in a multidisciplinary pediatric diabetes clinic. To our knowledge, this study is among the first to evaluate caregiver diabetes distress in a real-world clinical setting among families of very young children, including those younger than 2 years of age.13,18 Caregivers reported greater distress related to anticipated future diabetes burdens than immediate day-to-day demands of diabetes management. Notably, diabetes distress was not associated with demographic characteristics, HbA1c, or other clinical parameters. Our findings support the feasibility and importance of integrating caregiver diabetes distress screening into routine pediatric diabetes care, regardless of technology usage, and may provide additional insight into caregiver experiences that are not otherwise captured during standard diabetes care.
The PAID-PR has been extensively used in pediatric T1DM research9,19 and has been validated for clinical use in caregivers of children ages 8 to 18 years.1,5 Our study is novel in assessing diabetes distress in caregivers of very young children, with our cohort having a median age of 5.5 years. Consistent with prior work demonstrating lower caregiver distress with younger child age, 1 our cohort had substantially lower rates of referrable diabetes distress (7%) than previously reported (21%-27%),1,20 This is possibly due to the younger age of our population allowing greater caregiver control over diabetes management, as well as high diabetes technology usage in our study population, which has been associated with reduced fear of hypoglycemia, better sleep quality, improved glycemic outcomes, and lower caregiver distress.9,19
Although prior studies reported reduced caregiver distress when children switched from MDI to AID systems (eg, Omnipod 5),9,19 we did not observe differences in distress between caregivers of youth using MDI vs AID systems, although our study was underpowered for this comparison. It is possible there are ongoing distress-inducing challenges associated with AID use, including alarm burden, the ongoing need for caregiver oversight, unpredictable hypoglycemia (including pump overtreatment of hyperglycemia),21,22 pump site failures, and the overwhelming nature associated with managing large amounts of diabetes data. The American Diabetes Association (ADA) recommends the use of AID systems for all patients with T1DM. 4 However, caregiver distress may persist despite AID use, highlighting the need for effective psychosocial support for caregivers of youth regardless of technology use to help families derive the greatest benefit from AID technology.
Unlike prior studies reporting higher distress with longer diabetes duration, 22 we found no association between distress and disease duration. However, in our study, the overall distress scores were lower, and our population had a shorter median diabetes duration of 1.5 years.1,13 Lower caregiver distress may reflect our comprehensive new-onset program and multidisciplinary clinic structure, which includes 2 to 3 days of intensive inpatient diabetes education from diabetes educators/nurses, the endocrinology team, registered dietitians, social workers, and behavioral psychologists, daily phone follow-up for 1 to 2 weeks after discharge, and two multidisciplinary outpatient visits within 1 to 2 months of diagnosis, followed by multidisciplinary outpatient visits every 3 months. At these outpatient visits, families are often seen by our team of diabetes educators, social workers, psychologists, and nutritionists. Patients are typically started on CGMs within 2 weeks following diagnosis. Similar reductions in caregiver distress were reported after a multidisciplinary pilot intervention of regular diabetes education and nutrition. 23
In our analysis, caregivers showed higher levels of distress on theoretical burdens compared to immediate burdens, suggesting that anticipated challenges associated with a child’s future, such as fear of the child having and living with diabetes, worrying about the child having complications, or not being taken care of when outside the home, were more distressing to families than immediate concerns including current management plans, familial support, or dealing with school staff. This difference was even greater in those with higher overall distress levels, ie, in our highest 25th percentile of distress. Understanding these nuanced differences could allow for diabetes care teams to tailor counseling efforts, provide targeted psychosocial support, and develop specific resources or interventions to alleviate caregiver distress related to a child’s future with diabetes.
Previous studies have demonstrated an association between diabetes distress and HbA1c that was not observed in our cohort.2,6,12 This discrepancy may reflect our cohort’s lower median HbA1c, higher use of diabetes technology compared to prior studies, and relatively small sample size. 5 Although the ADA recommends routine screening for both diabetes distress and depression,5,15 diabetes distress screening provides unique value by capturing the emotional burden associated with the day-to-day diabetes management.
Strengths of this study include its diverse patient population, novel focus on caregivers of very young children with diabetes, and inclusion of families across a broad range of diabetes duration, enabling identification of factors associated with diabetes distress in a cohort with high diabetes technology use. Evaluating diabetes distress early in the disease course may identify families who could benefit from additional support, promote healthy adjustment, and reduce long-term caregiver burnout. Analysis of individual PAID-PR questions also provided insight into specific sources of caregiver distress. Nearly all families reviewed their survey results with a psychologist or social worker during the clinic visit, allowing for immediate counseling and referral when indicated.
This study has several limitations. First, it was conducted at a single center with a relatively small sample size, limiting the power of the analyses. Furthermore, we only included English-speaking caregivers, which may limit generalizability. Although survey administration and review by psychology or social work allowed for timely identification of distress and intervention, this may have also introduced selection bias, even though our program recommends annual psychology and social work visits for all families. Finally, caregiver diabetes distress was assessed at a single time point, whereas distress is likely dynamic.
Conclusions
In conclusion, this study demonstrates the feasibility of screening caregivers of preschool and early elementary-aged children with T1DM for diabetes distress using the PAID-PR and provides insight into the specific challenges experienced by these families. Although caregiver distress was not associated with sociodemographic or clinical characteristics in our cohort, responses to individual PAID-PR items highlighted differences between anticipated long-term concerns and the day-to-day burdens of diabetes management. These findings may help inform multidisciplinary care and guide the development of targeted psychosocial interventions to address caregiver needs. Future studies should include larger, more diverse populations, incorporate non-English-speaking caregivers, evaluate alternative survey administration methods (eg, tablets or patient portals), and assess longitudinal changes in caregiver distress and their relationship with clinical and family outcomes.
Acknowledgments
The authors thank the patients and their caregivers for their participation.
Footnotes
Authors’ Note: Prior Presentation: Results of this work were previously presented at the Pediatric Endocrine Society Annual Meeting in May 2026 in San Francisco, CA.
Abbreviations: AID, automated insulin delivery; CFRD, cystic fibrosis–related diabetes; CGM, continuous glucose monitors; EMR, electronic medical record; MDI, multiple daily injections; PAID, Problem Areas in Diabetes; PAID-PR, Problem Areas in Diabetes–Parent Revised version; T1DM, type 1 diabetes mellitus; T2DM, type 2 diabetes mellitus.
ORCID iDs: Elena D. Georges 
https://orcid.org/0009-0002-3151-2060
Neha Parimi
https://orcid.org/0000-0003-1338-8270
Karen Dimentstein
https://orcid.org/0000-0002-8732-845X
Elizabeth A. Brown
https://orcid.org/0000-0002-1137-664X
Risa M. Wolf
https://orcid.org/0000-0001-7674-520X
Author Contributions: EDG and RMW conceived of the study. EDG, KD, and NP collected data. EDG, NP, EAB, and RMW completed the statistical analysis and interpretation. EDG, EAB, and NP created figures and tables. EDG, NP, KD, and RMW wrote the manuscript. All authors made critical contributions to the manuscript. All authors edited, reviewed, and approved the manuscript.
Funding: The authors received no financial support for the research, authorship, and/or publication of this article.
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: RMW reports receiving research support as the site PI of sponsored clinical trials by Novo Nordisk, Lilly Diabetes, and Sanofi and is a consultant for Sanofi and Mannkind, unrelated to this work. KD reports receiving research support from Breakthrough T1D to support the submitted work. NP and EDG have no conflicts of interest.
Guarantor Statement: RMW is the guarantor of this work and, as such, has full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
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