Abstract
Objective
To determine the degree of diabetes-specific distress in children with type 1 diabetes mellitus (T1DM) and its association with demographic characteristics, family and educational situation indicators, glycemic control, complications, and disease duration.
Study design
A cross-sectional study (Jan-Mar 2025) in Argentina and Chile included 143 T1DM patients (8-17 years, ≥1-year duration). Diabetes distress was measured using the Problem Areas in Diabetes (PAID) questionnaire (0-80; high distress ≥40).
Results
One hundred forty-three children (53.8%; 77 females), median age 13.4 years (IQR 11.5-15.8 years), T1DM duration 4.4 y (IQR 3.3-6.6 years), hemoglobin A1c (HbA1c) 8.5%, 69.8 mmol/mol (IQR 7.4%-9.4%), were included. The median PAID score was 25 (IQR 15-42), with 28% (95% CI: 20.6-35.3) experiencing high distress (PAID ≥ 40). HbA1c was higher in children with high distress 9.00% (IQR: 8.1%-10.4%) than in moderate 8.5% (IQR: 7.5%-9.7%) or low distress 7.8% (IQR: 7.0%-8.9%). There was a higher prevalence of children living with only one parent among those with high or moderate distress (33.3%, 95% CI: 24%-34%) compared to those with low distress (9.8%, 95% CI: 2%-18%). Multiple logistic regression analysis revealed that higher HbA1c values were significantly associated with being in the high distress group (OR = 1.48; 95% CI: 1.12-1.96 per % point HbA1c), adjusted for confounding variables.
Conclusions
Diabetes distress was linked to higher HbA1c in Latin American children with T1DM. This suggests that addressing diabetes distress may contribute to improved glycemic control.
Keywords: Latin American children, type 1 diabetes, distress
Background
Managing type 1 diabetes mellitus (T1DM) requires following complex and demanding treatment regimens, including frequent monitoring of blood glucose levels, tracking carbohydrate intake, administering insulin, and adjusting doses according to glucose levels, diet, and physical activity.1 Adhering to such an intensive regimen can be stressful. It may lead to emotional distress for both children with T1DM and their caregivers, leading to considerable psychosocial stress and a negative impact on overall quality of life.2,3 Diabetes-specific distress refers to the adverse emotional reactions associated with having diabetes, including the stress, concerns, and fears that arise from the diagnosis and the ongoing demands of managing the condition.4 Unlike general emotional stress, such as depression or anxiety, diabetes distress is specifically tied to the daily challenges of living with T1DM.5 It is essential to address these emotional concerns, as adolescence is a period marked by psychological vulnerability, behavioral shifts, body image issues, and family conflicts.6 These challenges heighten the emotional burden and alter metabolic control, making it more difficult to meet glycemic targets during this stage.7
Diabetes distress has been associated with reduced self-care behaviors and elevated hemoglobin A1c (HbA1c) levels. Diabetes distress can be evaluated using a questionnaire-based tool called the Problem Areas in Diabetes Survey (PAID),8 originally developed and validated in the 1990s to assess the emotional burden of diabetes in adults. Since then, adapted versions of the PAID have been developed and validated for use in children and adolescents aged 8-17 years.9 The PAID scale encompasses a wide range of emotional concerns and has also been validated in 17 languages.10 A Spanish-language version of the PAID-Peds is available for children aged 8-17.11 The results from this tool can be effectively utilized to enhance the clinical management of pediatric patients with T1DM.11 PAID distress does not discriminate between acute and chronic distress. Nonetheless, as to its retrospective questionnaire, it is likely to show chronic distress, which means the emotional distress due to living with diabetes.8, 9, 10, 11 Furthermore, diabetes distress may differ across countries and ethnic groups.11 An integrated approach that combines both medical and psychological care may be essential to alleviate stress in these patients, ultimately contributing to improved metabolic control in children with T1DM.12 As far as we know, there is no research focused on assessing psychosocial distress in Latin American children and adolescents living with T1DM. Therefore, this study aimed to determine the degree of diabetes-specific distress in children with T1DM and its association with demographic characteristics, family and educational situation indicators, glycemic control, complications, and disease duration.
Methods
We carried out a cross-sectional, observational, multicenter study in 7 pediatric diabetes units in Argentina and Chile between January and March 2025. These clinics are part of the publicly accessible health care systems in both countries and offer comprehensive care for children and adolescents with T1DM, including medical consultations and the provision of insulin, glucometers, test strips, and other essential medications. The majority of the patients served come from low-to middle-income backgrounds.
All 7 health centers included were referral health care institutions located in Latin America that provide care for all types of children with type 1 diabetes. These centers are either exclusively pediatric or serve as pediatric referral centers with access to a full range of pediatric specialties. All centers are part of the public health care system or academic institutions providing specialized diabetes care. These health centers were grouped to obtain 3 categories based on standard features, including geographic location and level of urbanization. The categories and their proportions were as follows: Rural provinces (n = 61, 42.7%; includes Chaco, Corrientes and Misiones (Argentina)), Urban 1 (n = 59, 39.2%: Buenos Aires city, and Buenos Aires suburbs, Argentina), and Urban 2 (n = 26, 18.2%: Santiago, Chile). This grouping aimed to address potential differences in outcomes influenced by the centers or regions. The population density and infrastructure of Urban Center 1 (Buenos Aires) and Urban Center 2 (Santiago de Chile) are significantly different. The Buenos Aires metropolitan area, the largest urban agglomeration in Argentina, has approximately 15.6 million people, while Santiago, Chile's largest city, has a population of roughly 7.1 million. These differences in urbanization and infrastructure impact access to health care services, transportation systems, and the complexity of care delivery.
The inclusion criteria required participants to be between 8 and 17 years old, have a confirmed diagnosis of T1DM, and have disease duration of at least one year. Children with comorbid conditions such as celiac disease, genetic syndromes, intellectual disabilities, or polyendocrinopathies were excluded. All children aged 8-17 years with a diagnosis of T1DM for over one year who attended clinic visits between January 1 and March 30, 2025, were invited to participate in the study. Only 2 patients were excluded due to missing data or intellectual disabilities, resulting in the inclusion of 143 patients.
The institutional ethics committee approved the study at each participating center before initiation (PRIISBA BA (Platform for the Digital Registration of Health Research.) number 14851). Participant confidentiality was maintained throughout the study, and all collected data were pseudonymized using coded identifiers. The study adhered to national and international ethical standards, including the principles outlined in the Declaration of Helsinki. All participants received a detailed information sheet, and informed consent was obtained from both the children and their parents before participation.
Data collected from participants included age, sex, duration of diabetes, parental and child education levels, family structure, type of school attended (public or private), episodes of diabetic ketoacidosis within the past year, body mass index (BMI), the most recent 3 HbA1c values (%), use of continuous glucose monitoring, use of an integrated insulin pump, presence of retinopathy or nephropathy, and daily insulin requirements per kilogram of body weight. An HbA1c level below 7% was considered indicative of well-controlled diabetes.13
Children's height and weight were measured following standard protocols. Body Mass Index (BMI) was calculated using the formula: weight (kg)/height (m2). Age- and sex-specific Z-scores for height, weight, and BMI were determined using the Centers for Disease Control and Prevention reference values.14 Glycemic control was assessed by measuring HbA1c levels using the high-performance liquid chromatography method, with a reference range of 4%-5.6%.
As the patients in this study are from Spanish-speaking Latin American countries, we deemed the validated Spanish version of the PAID-Peds, designed for children with T1DM aged 8-17 years, the most appropriate tool.11
The PAID questionnaire, consisting of 20 items designed to assess diabetes-related distress over the past month, was administered to participating children by a health care professional during a clinical consultation. In some instances, an adult or facilitator (such as a parent or a research team member) was present to clarify any questions that arose. However, care was taken to ensure that facilitators did not influence participants' responses in any way. Each item was rated using a 5-point Likert scale, ranging from 0 to 4, where 0 indicated "not a problem," 1 indicated "a minor problem," 2 showed "a moderate problem," 3 indicated "a somewhat serious problem," and 4 indicated "a serious problem." Higher scores on the scale indicate a greater perceived burden associated with diabetes.11 Scores were divided into 3 categories that reflected the child's emotional distress.12 The PAID cutoff score demonstrates acceptable sensitivity, specificity, and negative predictive value, supporting its potential utility in both clinical research and practice.12 These categories help interpret how emotionally affected the patient feels about diabetes: Low Emotional Distress (0-19 points), Moderate Emotional Distress (20-39 points), and High Emotional Distress (40-80 points).12
Data Analysis
Data analysis was conducted using SPSS version 22 (IBM Corp). Descriptive statistics—including percentages, 95% confidence intervals, means, medians, and interquartile ranges—were used to summarize age, anthropometric measures (weight, height, and BMI expressed as z-scores based on Centers for Disease Control and Prevention child growth standards), HbA1c, demographic variables, family and educational indicators, and disease duration, stratified by PAID distress score categories. Comparisons between 2 groups with normally distributed data were conducted using the Student's t-test. For comparisons involving more than 2 groups, a one-way ANOVA was performed, followed by the Student–Newman–Keuls post hoc test when appropriate. The Bonferroni correction was applied to control for the increased risk of Type I errors associated with multiple testing. When the assumption of homogeneity of variances was violated, the Brown–Forsythe test was used as an alternative. Multiple regression models were included to determine the associations between PAID diabetes distress and age, sex, family structure, and HbA1c.
Results
In the study, we included 7 pediatric referral hospitals that provide care to children with diabetes referred from emergency departments and primary health care services. These hospitals are located in diverse regions, including the City of Buenos Aires (28 children), Misiones (25 children), Corrientes (22 children), Chaco (14 children), 2 centers in the Province of Buenos Aires (14 children each), and Santiago de Chile (26 children), yielding a total of 143 participants. Children are typically seen every 3 months, during which their treatment plans are reviewed and adjusted as needed. Diabetes supplies are dispensed on-site, and routine clinical evaluations are conducted. Educational support is also provided at each visit, with a focus on diabetes management and nutrition. Care is delivered through a multidisciplinary team, with referrals to additional services, including psychological support, made when clinically indicated.
A total of 143 children (77 (53.8%) females) were included. The median age was 13.4 years (IQR, 11.5-15.8 years), and the population had a median duration of T1DM of 4.4 years (IQR, 3.3-6.6 years) at the time of inclusion. The median HbA1c was 8.5% (IQR 7.4%-9.4%), which is equivalent to 69.8 mmol/mol. Overall, 30.5% (95% CI: 23%-38%) of participants were overweight or obese, 3.0% (95% CI: 0.10-5.82) had nephropathy, and 1.5% (95% CI: −0.5 to 3.5) had retinopathy. Only 18.8% (95% CI: 12.2-25.4) had a most recent HbA1c value below the recommended threshold of 7%, and this was also the case for just 17.8% (95% CI: 11.2-24.4) for their previous HbA1c value. The median PAID score was 25 (IQR 15-42), with 28.0% (95% CI: 20.6-35.3) experiencing high distress (PAID ≥ 40).
Children were classified into 3 levels of PAID, defined based on previously published thresholds.12 The prevalence of low PAID distress was 35.7% (n = 51), moderate distress 36.4% (n = 52), and high distress 28.0% (n = 40). When calculating the median scores for each PAID item stratified by low, medium, and high distress levels, children in the high distress group consistently showed significantly higher median responses across all items.
Clinical and demographic characteristics according to PAID scores are summarized in Table. Higher PAID scores were significantly univariately associated with both BMI and HbA1c levels. The 3 last HbA1c levels were higher among children with high-distress PAID scores compared to those with moderate or low distress. The figure illustrates that the 2 most recent HbA1c values were significantly higher in children in the higher PAID diabetes-distress categories (Figure). Girls were more likely to be in the moderate or high distress PAID score categories. Parental education was significantly lower in the high-distress group, with only 10% of parents holding university degrees, compared to 15% in the moderate and 30% in the low-distress group. Additionally, a smaller proportion of children with high PAID distress attended private schools compared to the moderate or low PAID group. Children in the high and moderate-distress group were significantly more likely to live with only one parent than those in the low-distress group. The percentage of participants with at least one DKA episode in the past year was significantly higher in the high distress group compared to the moderate and low distress groups.
Table.
Clinical and demographic characteristics by PAID distress
| Variables | Low 35.7% (51) | Moderate 36.4% (52) | High 28% (40) |
|---|---|---|---|
| Age current (y) | 13.8 (10.6-16.6) | 13.4 (12.1-14.9) | 13.2 (12.1-15.7) |
| Age at onset (y) | 7.9 (6.2-10.7) | 8.4 (5.8-10.9) | 8.4 (6.5-10.3) |
| Sex (females) (% 95% CI)∗ | 37.3 (23.5-51) | 63.5 (50-75) | 62.5 (47.5-77.5) |
| Weight(kg) at onset | 51.8 (36-59.4) | 52.0 (42-64) | 49.2 (10.4-62.3) |
| Height (m) at onset | 1.58 (1.4-1.7) | 1.55 (1.5-1.6) | 1.53 (1.4-1.6) |
| BMI (kg/m2) at onset | 19.67 (17.5-21.8) | 21.85 (18.9-24.1) | 21.1 (18.1-23.6) |
| BMI percentile | 58.76 ± 24.64 | 69.8 ± 26.71 | 67.93 ± 25.52 |
| Ph at onset | 7.3 (7.1-7.3) | 7.3 (7.2-7.3) | 7.2 (7.1-7.3) |
| Bicarbonate (mEq/L) at onset | 13 (7.8-18.8) | 15.8 (7-20.7) | 9.5 (6.2-14.5) |
| Diabetes duration (y) | 4.7 (2.9-6.3) | 4.3 (3.5-6.7) | 4.5 (3.7-8.2) |
| A1c (last) (%)∗ | 7.8 (7.0-8.9) | 8.5 (7.5-9.7) | 9.0 (8.1-10.4) |
| A1c second (%)∗ | 7.7 (7.0-8.7) | 8.7 (7.4-9.6) | 8.9 (8.0-10.1) |
| A1c first (%) | 7.1 (7.5-8.9) | 8.7 (7.3-10.2) | 8.6 (7.3-9.5) |
| Private school∗ | 35.3 (22.2-48.4) | 38.5 (25.2-51.7) | 12.8 (2-23) |
| Parental structure∗ | 84.3 (74-94) | 58.8 (45-72) | 74.4 (61-88) |
| DKA episodes (%)∗ | 2.3 (−2.2 to 6.8) | 14.6 (4.6-24.6) | 21.6 (8.4-34.9) |
| PUDegree (% 95% CI)∗ | 30.0 (17-43) | 14.9 (5-25) | 10.3 (7-19) |
| Insulin Pump (% 95% CI) | 6 (−0.6 to 12.6) | 11.6 (12.1-21.2) | 0 (0) |
| CGM (% 95% CI) | 64.7 (51.6-77.8) | 71.1 (58.8-83.5) | 57.5 (42.2-72.8) |
| PAID score | 11 (7-16) | 27.5 (23-31.7) | 50 (43.2-60.2) |
Data are presented as mean ± SD, median (interquartile range), or percentage (95% CI).
CI, confidence interval; CDC, Centers for Disease Control and Prevention; CGM, continuous glucose monitoring; DKA, diabetes ketoacidosis; PUDegree, parental university degree.
Parental structure: classified as two-parent, single-parent, or other (eg, grandparent or guardian care). DKA Episodes: Percentage of participants who experienced at least one episode of DKA during the last year. A percentile is a quantitative measure of the deviation of a specific variable from the mean of that population. CDC BMI percentile takes into account age and sex. Significant differences.
P values < 0.05.
Figure.
Mean (95% CI) HbA1c (2 last values) across the 3 PAID diabetes distress categories by sex, adjusted for age and BMI.
Following Bonferroni adjustment for multiple comparisons involving 11 continuous variables, the last 2 HbA1c measurements remained significant. When a Bonferroni adjustment for multiple comparisons was applied to 7 categorical variables, parental structure remained significant.
Multiple logistic regression analysis revealed that the 2 most recent HbA1c values were significantly associated with high-distress PAID scores after adjusting for age, sex, BMI, and parental structure (OR = 1.48; 95% CI: 1.12-1.96). This indicates that for each percentage-point increase in HbA1c, children had a 48% higher likelihood of experiencing high diabetes-related distress.
Multiple linear regression analysis showed that the HbA1c (last 2 readings) was significantly associated with diabetes distress (PAID) (β = 0.26, 95% CI 0.11-0.43; P = .003) adjusted for age, sex, BMI, and parental structure.
Discussion
In this study, we examined diabetes distress in Latin American children and adolescents with T1DM—specifically from Argentina and Chile—a population previously underrepresented in the literature. To our knowledge, no prior studies have assessed PAID diabetes distress in children with T1DM from Argentina and Chile. In multivariate analyses, we found a significant association between HbA1c levels and PAID scores, indicating that higher diabetes distress is linked to poorer glycemic control. Children with elevated PAID scores also had higher average values for their 2 most recent HbA1c measurements, were more likely to attend public schools, live in single-parent households, and have parents with lower educational attainment—factors suggesting increased socio-economic vulnerability. Notably, 28% of participants had PAID scores ≥40, reflecting a substantial burden of emotional distress in this group.
Diabetes management is influenced by environmental, social, behavioral, and emotional factors. In T1DM, lifelong insulin therapy and intensive self-care are essential, but diabetes-related distress can interfere with both and adversely affect treatment outcomes.15 Consistently, the present study showed that the mean HbA1c level in this group was 8.16 ± 3.24%, which exceeds the target of 7% recommended by the ISPAD guidelines.13 Despite significant advances in diabetes management technologies—such as continuous glucose monitors and insulin pumps—,16 a low proportion of adolescents with T1DM achieve the recommended glycemic target of HbA1c levels below 7%.13,17 Accordingly, the present study showed that although 65% of the children used continuous glucose monitoring, only 19% had a most recent HbA1c value below the recommended threshold of 7%, and just 18% had their previous HbA1c within this target range. Additionally, 12.5% of participants reported experiencing at least one episode of DKA in the past year, suggesting poor metabolic control.
Diabetes distress is not a psychiatric disorder but rather a response to the challenges and complex emotions that come with living with and managing diabetes, which is a chronic condition that demands continuous self-management.8,18 A review found that one-third of adolescents with T1DM experience diabetes distress—similar to adult rates—and that symptoms may persist without intervention,19 supporting the need for early screening and targeted interventions. Notably, 28% of the children and adolescents in this study showed high PAID diabetes distress (PAID score ≥ 40).11,12 Studies showed that children with high diabetes distress tend to have higher HbA1c levels,20,21 possibly due to poor self-management.22 While some suggest a bidirectional relationship,23 others report weak or no associations,19 highlighting the need for further clarification. The present study showed that the PAID diabetes distress score was significantly associated with poor metabolic control. Furthermore, the multiple regression analysis revealed a significant linear relationship between diabetes distress scores and HbA1c levels across the full spectrum of the PAID scores, highlighting the importance of considering diabetes distress scores at all levels, not just at the higher end, in children with T1DM from Argentina and Chile. Furthermore, multiple logistic regression analysis revealed that higher HbA1c levels were significantly associated with being in the high distress group (OR = 1.48 per % point increase in HbA1c) after adjusting for confounding variables. This indicates that for each one-point increase in HbA1c, children had a 48% higher likelihood of experiencing high diabetes-related distress. However, it is important to note that this association was based on cross-sectional data and did not establish a causal relationship. Although our study was cross-sectional, findings from longitudinal research suggest that individuals experiencing diabetes distress related to diabetes may be more prone to have suboptimal metabolic control.22 Consistent with our findings linking elevated HbA1c to diabetes distress, Grulovic et al. also reported an association between distress and microvascular complications.24 In our cohort, the low prevalence of complications, likely due to young age and short disease duration, precluded analysis of their association with PAID scores.
Demographic factors linked to high diabetes distress remain unclear. While some studies report higher diabetes distress in marginalized racial/ethnic groups,25 others find no such differences.26 Moreover, disparities in diabetes-related complications among marginalized groups have been associated with higher levels of diabetes distress, highlighting the importance of identifying those at higher risk.27 However, research on diabetes distress in Latin American children, who differ in ethnicity and cultural background from those in Europe and the US, remains limited. The present study showed that children with higher distress of PAID scores were more likely to attend public schools, come from single-parent households, and have parents with lower levels of formal education. These findings suggest that children from more vulnerable families may be more likely to experience higher diabetes distress. It is worth noting that in Argentina and Chile, families do not have to worry about the financial burden of diabetes care, as the government and health insurance providers cover all necessary supplies. However, in Argentina, the process of obtaining integrated insulin pumps can be exhausting, especially when dealing with the public healthcare system. Furthermore, in public healthcare settings, providing diabetes supplies alone may be insufficient. Economic hardship may limit families’ ability to afford transportation, adequate food, and other essentials for optimal diabetes care.
This study has several strengths, including its multicenter design, which enhances the generalizability of the findings across diverse clinical settings. The observed associations between metabolic parameters and PAID scores highlight the tool's utility in evaluating psychosocial distress within pediatric diabetes care. While the sample encompasses a broad range of ages, disease durations, and treatment approaches, it may not fully represent the diversity of the broader pediatric T1DM population. Additionally, the use of self-reported measures may be subject to recall bias or social desirability effects. Lastly, the study's cross-sectional nature limits the ability to assess long-term changes in distress or the impact of specific interventions over time.
Diabetes distress was linked to higher HbA1c in Latin American children with T1DM. In addition, parental education, private school attendance, and familiar structure were significantly lower in the PAID high-distress group, indicating increased social vulnerability. Diabetes distress PAID scores may help identify distress and guide care to improve glycemic control. Given limited resources, clinics may prioritize assessing and addressing diabetes-related distress to help improve glycemic control. Further longitudinal studies should be performed to confirm these findings.
CRediT authorship contribution statement
Valeria Hirschler: Writing – original draft, Visualization, Validation, Supervision, Software, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Amanda Benitez: Software, Methodology. Andrea Escalante Marassi: Methodology, Investigation. Angeles Arrigo: Software, Methodology. Eugenia Andres: Software, Conceptualization. Ethel Codner: Investigation, Conceptualization. Juan Pablo Rojas Godoy: Writing – original draft, Methodology, Investigation, Formal analysis, Data curation. Claudia Molinari: Software. Luciana Araujo: Software. Fabio Palacios Porta: Writing – original draft, Validation, Supervision, Methodology, Investigation, Formal analysis, Conceptualization.
Declaration of Competing Interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
Acknowledgments
We would like to thank all the patients for their participation in the study and Dr Laura Taberner for her valuable collaboration.
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