Highlights
· Diabetes-related distress was common among people with type 1 diabetes and other pancreatic endocrine dysfunction in Korea, with emotional burden being the most prominent domain.
· Nearly all participants (97.1%) supported disability registration, primarily citing expected reductions in treatment costs and other economic benefits.
· Higher diabetes-related distress was associated with more favorable views on disability registration, suggesting that perceived psychosocial burden may shape perspectives on formal disability recognition.
Introduction
Diabetes is a rapidly expanding global public health challenge; its prevalence has more than doubled worldwide over the past 3 decades and is expected to continue increasing [1]. The global prevalence among adults aged 20–79 years was estimated at 10.5% in 2021 and is expected to reach 12.2% by 2045 [2]. In Korea, diabetes affects approximately 5 million adults, with a prevalence of 15.5 % among individuals aged ≥30 years [3].
Among those aged <30 years, national epidemiologic data indicate that the incidence of type 1 diabetes increased from 3.02 per 100,000 population in 2008 to 3.75 per 100,000 in 2021, while its prevalence more than doubled during the same period [4].
Pancreatic endocrine dysfunction (PED), including type 1 diabetes and status after total pancreatectomy, results in a permanent loss of essential pancreatic endocrine function required for survival [5]. Most people with type 1 diabetes have near-complete loss of endogenous pancreatic endocrine activity and require lifelong insulin therapy [6]. Beyond the complex demands of daily self-management, individuals with PED often experience persistent physical fatigue, psychological distress, and patient-reported financial burden related to diabetes management.
People with type 1 diabetes frequently report emotional distress, anxiety, and fear related to disease management, which may adversely affect self-esteem, quality of life, and educational or occupational functioning [7-10].
Despite this lifelong and multifaceted burden, PED has not been consistently recognized within the internal disability framework in Korea. By contrast, several countries have adopted broader and more functional definitions of disability that encompass insulin-deficient diabetes. In the United States, the Americans with Disabilities Act Amendments Act of 2008 expanded the interpretation of disability, providing people with diabetes legal protection against discrimination [11].
In Canada, individuals with type 1 diabetes are eligible for the federal Disability Tax Credit, recognizing insulin dependence as a life-sustaining therapy [12]. Similarly, in Australia, diabetes is regarded as a disability within the educational system, mandating reasonable accommodations and structured support for affected students [13]. These international precedents reflect increasing recognition of insulin-deficient diabetes as a condition associated with functional and psychosocial burden.
However, empirical evidence supporting the recognition of PED as an internal disability in Korea remains limited. Few studies have systematically evaluated diabetes-related psychosocial distress or examined perspectives on disability recognition among people with PED. Therefore, in this multicenter web-based convenience survey, we aimed to quantify diabetes-related distress, assess perspectives on disability registration among people with PED and their caregivers in Korea, and identify factors associated with both outcomes.
Materials and methods
1. Data source and study population
A multicenter web-based convenience survey was conducted. Eligible participants included individuals with type 1 diabetes, a history of pancreas transplantation, or other pancreatic diseases (including patients who had undergone pancreatectomy). Individuals with type 2 diabetes were excluded.
Recruitment notices were distributed through diabetes education centers across 20 hospitals and via the websites of 2 diabetes-related organizations (Supplementary Table 1). Participants voluntarily accessed the survey using a QR code provided in the recruitment notices and completed an anonymous online questionnaire between September 13 and October 31, 2024. All participants provided informed consent prior to enrollment.
For participants aged ≤18 years, additional consent was obtained from their caregivers. The study was approved by the Institutional Review Board of Seoul National University Bundang Hospital (approval No. B-2409-926-302).
2. Data collection and outcomes
The collected variables included respondent type, sex, birth year, insurance type, area of residence, diagnostic category (type 1 diabetes, pancreas transplantation, or other pancreatic diseases [including pancreatectomy]), duration of diabetes, history of diabetes-related complications, diabetes management devices, and monthly out-of-pocket costs related to diabetes management. Out-of-pocket costs were defined as the patient-reported average monthly expenses during the previous year, including medical expenses, medication costs, and personal expenses for diabetes-related supplies but excluding insurance-covered amounts and the initial purchase cost of insulin pump devices. Diabetes-related complications were assessed from participant- or caregiver-reported histories of complications.
Participants were categorized into pediatric (≤18 years) and adult (≥19 years) groups.
Diabetes-related distress was assessed using the 17-item Diabetes Distress Scale (DDS), originally developed by Polonsky et al. [14] and translated into Korean by Choi [15], with permission from the original and Korean authors. Although the Korean version was originally evaluated in adults with type 2 diabetes, we used this instrument because it assesses diabetes-specific distress related to the ongoing burdens of insulin management, self-care, and psychosocial challenges, all of which are also relevant to individuals with type 1 diabetes. The DDS comprises 4 domains: emotional burden (items 1, 3, 8, 11, 14), physician-related distress (items 2, 4, 9, 15), regimen-related distress (items 5, 6, 10, 12, 16), and interpersonal distress (items 7, 13, 17).
For participants aged ≤18 years, caregivers were instructed to complete the questionnaire based on their child’s experiences and perspectives. No modifications were made to the wording of the DDS items for caregiver respondents. Respondent type (self-report or caregiver-report) was recorded for each questionnaire.
Each item is rated on a 5-point Likert scale from 1 (“not a problem”) to 5 (“a very serious problem”). The overall DDS score was calculated as the mean of the 17 individual items, and each domain score was calculated as the mean of its corresponding items. Missing items were omitted from score calculations, with no prespecified completion threshold; only 1 participant had a missing item (16 of 17 items completed).
Overall and domain scores ≥3 were classified as elevated diabetes-related distress according to the predefined scoring approach [16,17]. Perspectives on disability registration were assessed using study-developed questions. Before answering these questions, participants were provided with explanatory information regarding potential benefits of disability registration.
Participants were first asked whether they would register if PED were recognized as a disability (“yes” or “no”). Those who answered “yes” were asked to select up to 3 expected benefits of registration, whereas those who answered “no” were asked to select up to 3 concerns regarding registration. No neutral or undecided response option was provided.
The detailed questionnaire items are provided in Supplementary Table 2.
3. Statistical analysis
Continuous variables are presented as medians (interquartile ranges [IQRs]), and categorical variables as frequencies and percentages. Differences between pediatric and adult groups were assessed using the Mann-Whitney U-test for continuous variables and the χ² test for categorical variables. Factors associated with diabetes-related distress were examined using multivariable linear regression models, and results are reported as unstandardized coefficients (B) with 95% confidence intervals (CIs).
The models examining factors associated with diabetes-related distress were adjusted for age, sex, metropolitan residence, duration of diabetes, diabetesrelated complications, diabetes management devices, and respondent type (self-report vs. caregiver-report). Factors associated with perspectives on disability registration were analyzed using Firth’s bias-reduced (penalized) multivariable logistic regression models because of the small number of participants opposing disability registration; results are presented as odds ratios (ORs) with 95% CIs. Candidate covariates were selected based on clinical relevance.
Alternative models were evaluated using adjusted R² for linear regression and the Akaike information criterion for logistic regression, and the final models were selected based on model fit and clinical interpretability. Given the small number of participants opposing disability registration, the overall-cohort model was considered the primary analysis, whereas age-stratified analyses were considered exploratory and interpreted cautiously. Domain-specific analyses of perspectives on disability registration were therefore restricted to the overall cohort.
The same covariate set was applied across the overall, adult, and pediatric analyses of the total DDS score to facilitate subgroup comparisons. Regression model assumptions, including residual normality, homoscedasticity, influential observations, and multicollinearity, were assessed. All variables included in the final regression models had complete data; therefore, all eligible participants were included in the regression analyses.
Domain- and subgroup-specific analyses were performed as secondary analyses, and no adjustment for multiple comparisons was applied. A 2-sided P<0.05 was considered statistically significant. The internal consistency of the DDS was assessed using Cronbach α coefficients for the total scale and each domain.
These analyses were also performed according to age group and respondent type. All analyses were conducted using R ver. 4.4.1 (R Foundation for Statistical Computing, Vienna, Austria).
Results
1. Participant characteristics
A total of 852 participants (37.7% men; median patient age 19.0 years [IQR, 13.0–28.0 years]) were included in the analysis, of whom 49.2% were aged ≤18 years. Of the 852 participants, 322 (37.8%) completed the questionnaire themselves, whereas 530 questionnaires (62.2%) were completed by caregivers. Caregiver responses were more common among pediatric participants than among adults (92.1% vs.
33.3%). Most participants were covered by National Health Insurance (90.8%), and 49.4% resided in metropolitan areas. Type 1 diabetes accounted for 98.5% of cases, whereas pancreas transplantation and pancreatectomy accounted for 1.3% and 0.2%, respectively.
Among all participants, the median duration of diabetes was 7.0 years (IQR, 2.4–15.0 years), and 19.8% reported diabetes-related complications. Regarding diabetes management, 62.1% used continuous glucose monitoring (CGM) alone, 1.5% used continuous subcutaneous insulin infusion (CSII) alone, and 22.3% used both modalities. The median monthly out-of-pocket diabetes-related costs were 200,000 Korean won (IQR, 100,000–300,000 Korean won) (Table 1).
2. Diabetes-related distress
Overall, diabetes-related distress was common, with 552 participants (64.8%) reporting a DDS score ≥3. Questionnaires concerning adult participants had higher DDS scores than those concerning pediatric participants (median 3.4 [IQR, 2.8–3.8] vs. 3.2 [IQR, 2.6–3.6], P=0.002) and more frequently had DDS scores ≥3 (69.8% vs.
59.6%, P=0.002). Across DDS domains, emotional burden had the highest domain score (median 4.0 [IQR, 3.4–4.6]; 88.5% scoring ≥3), followed by regimen-related distress (3.2 [IQR, 2.6–3.6]; 62.8%), interpersonal distress (3.0 [IQR, 2.3–3.7]; 57.2%), and physician-related distress (2.5 [IQR, 1.8–3.5]; 40.8%). Questionnaires concerning adult participants also had higher median scores than those concerning pediatric participants in the emotional burden (4.2 [IQR, 3.4–4.6] vs.
4.0 [IQR, 3.2–4.6], P=0.008), regimen-related distress (3.2 [IQR, 2.6–3.8] vs. 3.0 [IQR, 2.6–3.6], P=0.043), and interpersonal distress domains (3.3 [IQR, 2.3–3.7] vs. 3.0 [IQR, 2.2–3.3], P<0.001).
Interpersonal distress scores ≥3 were also more frequent among questionnaires concerning adult participants than among those concerning pediatric participants (64.1% vs. 50.0%, P<0.001) (Table 2).
Item-level analyses showed that the most frequently reported distressing experiences were feeling that diabetes consumed excessive mental and physical energy (97.9%), feeling that diabetes controlled daily life (93.8%), and experiencing emotional distress when thinking about living with diabetes (93.7%) (Table 3). The internal consistency of the DDS was high in the overall cohort (Cronbach α=0.906). Similar internal consistency was observed in adult and pediatric participants (α=0.903 and α=0.908, respectively) and in self-report and caregiver-report respondents (α=0.908 and α=0.906, respectively).
Domain-specific Cronbach α coefficients ranged from 0.663 to 0.888 (Supplementary Table 3).
3. Perspectives on disability registration
Overall, 97.1% of participants (n=827) supported disability registration for PED. The most frequently selected expected benefits were reduced treatment costs (85.9%), economic benefits (61.9%), and employment-related benefits (40.1%), with similar patterns across age groups (Table 4). Only 25 participants (2.9%) opposed disability registration.
Common concerns among those opposed included being perceived as “disabled” (56.0%), reluctance to self-identify as having a disability (44.0%), potential employment disadvantages (44.0%), and social stigma associated with perceived reduced ability (40.0%) (Supplementary Table 4).
4. Factors associated with diabetes-related distress and perspectives on disability registration
Older age was associated with higher DDS scores in the overall cohort (B=0.013; 95% CI, 0.008–0.018) and among adults (B=0.011; 95% CI, 0.005–0.017). Shorter duration of diabetes was associated with higher DDS scores in the overall cohort (B=-0.012; 95% CI, -0.020 to -0.005) and among adults (B=-0.017; 95% CI, -0.026 to -0.008). The presence of diabetes-related complications was independently associated with higher DDS scores in the overall cohort (B=0.395; 95% CI, 0.267–0.524), and in both adult (B=0.375; 95% CI, 0.226–0.525) and pediatric subgroups (B=0.509; 95% CI, 0.244–0.775).
Among pediatric participants, device use was significantly associated with DDS scores: compared with no device use, use of CGM alone (B=-0.268; 95% CI, -0.451 to -0.084) and combined use of CGM and CSII (B=-0.343; 95% CI, -0.564 to -0.121) were associated with lower distress. Caregiver-reported questionnaires were associated with higher DDS scores in the overall cohort (B=0.186; 95% CI, 0.061–0.310) and among adults (B=0.224; 95% CI, 0.074–0.374) (Table 5).
Regarding perspectives on disability registration, higher DDS scores were associated with support for disability registration in the overall cohort (OR, 2.89; 95% CI, 1.64–5.11). Age-stratified analyses yielded estimates in the same direction but were considered exploratory because of the small number of participants opposing disability registration within each subgroup (Supplementary Table 5). In the overall-cohort analysis of individual DDS domains, emotional burden was associated with support for disability registration (OR, 3.35; 95% CI, 1.87–6.00), whereas no significant associations were observed for physician-related distress, regimen-related distress, or interpersonal distress (Supplementary Table 6).
Discussion
In this multicenter web-based convenience survey of individuals with PED (predominantly type 1 diabetes) and their caregivers, diabetes-related distress was highly prevalent. Approximately two-thirds of participants had DDS scores ≥3, with a higher prevalence observed among questionnaires concerning adult participants than among those concerning pediatric participants. Emotional burden was the most prominent domain of distress.
Support for disability registration was high, with financial and practical benefits most frequently cited. Older age, shorter duration of diabetes, and diabetes-related complications were associated with higher diabetes-related distress, and in the overall-cohort analysis, higher DDS scores were associated with more favorable views on disability registration.
Diabetes-related distress is a well-recognized and clinically meaningful psychosocial burden among people with type 1 diabetes, distinct from depressive symptoms and reflecting the ongoing demands of disease self-management [18]. In the present study, the proportion of participants with elevated diabetes-related distress (DDS score ≥3) was higher than that reported in previous Western studies, where elevated distress has been observed in approximately one-third of adolescents and 20%–30% of adults [19,20]. Although this difference may reflect variations in healthcare systems, treatment burden, and sociocultural context, it should also be interpreted with caution.
Participation in this study was voluntary, and recruitment was conducted through diabetes education centers and patient organizations, which may have preferentially included individuals with greater engagement in care or a higher perceived burden. In Korea, preferential reimbursement for CGM and CSII in pediatric populations may also contribute to differences in distress patterns between age groups, potentially reflecting disparities in access to diabetes technologies and the associated self-management burden [21].
Emotional burden was the predominant component of distress in this study, consistent with prior research demonstrating that the impact of type 1 diabetes extends beyond glycemic control to sustained psychological strain [14,22]. Among the 4 DDS domains, emotional burden had the highest median score, and nearly 9 out of 10 participants (88.5%) had emotional burden domain scores ≥3. In pediatric populations, diabetes-related distress arises during critical developmental stages and is associated with increased emotional and behavioral challenges [19,23].
In adults, the cumulative demands of long-term disease management may contribute to diabetes burnout, characterized by emotional exhaustion and disengagement from self-care [24]. Across age groups, the emotional aspects of diabetes-related distress have been shown to be closely linked to self-management difficulties and glycemic outcomes, underscoring their clinical importance [19]. These findings support the need for routine assessment of diabetes-related distress and the integration of age-appropriate psychosocial support into standard care [25].
Diabetes-related complications were consistently associated with higher distress across age groups, highlighting the emotional impact of cumulative disease burden. Concerns regarding current complications and future health risks may contribute to increased psychological strain and uncertainty [14,22]. Among adults, older age and shorter duration of diabetes were associated with higher distress, suggesting a dynamic pattern in which distress may be elevated both during early adaptation to diagnosis and at later stages characterized by accumulated burden and complications [19,20,26].
Notably, device use was associated with lower distress only in pediatric participants, consistent with previous reports linking CGM to reduced diabetes-specific distress in adolescents, possibly reflecting the benefits of real-time feedback and reduced fear of hypoglycemia during this developmental stage as self-management autonomy emerges [27]. These findings support a lifecourse approach to psychosocial care in type 1 diabetes [23,28].
Support for disability registration was highly prevalent in this survey, and in the overall cohort, higher DDS scores were associated with more favorable views of registration. Domain-specific analyses in the overall cohort further indicated that emotional burden was particularly associated with support for disability registration, suggesting that perceived psychological burden may represent an important component of participants’ views on formal recognition and support. Similar trends have been observed internationally, where disability frameworks increasingly incorporate functional and treatment-related burden rather than diagnosis alone [11-13].
Consistent with guidance from professional societies, disability recognition and reasonable accommodations are increasingly considered important for supporting safe self-management, psychosocial wellbeing, and societal participation among individuals with insulin-dependent diabetes [29-31]. However, given the near-universal support for disability registration, cross-sectional design, and survey-based methodology, these findings should be interpreted as reflecting participant perspectives and perceived needs rather than evidence of causal relationships or direct support for policy change.
This study has several strengths, including its multicenter recruitment across diverse clinical settings and large sample size, providing extensive real-world data on diabetes-related distress and perspectives on disability registration. However, several limitations should be considered. First, the cross-sectional design precludes causal inference and limits the assessment of temporal relationships between distress, clinical factors, and perspectives on disability registration.
Therefore, the observed association between diabetes-related distress and support for disability registration should be interpreted cautiously, as reverse causation and common-method bias cannot be excluded. In addition, only 25 participants opposed disability registration, including 15 adults and 10 pediatric participants. Although Firth’s penalized logistic regression was used to reduce small-sample bias, the limited number of outcome events resulted in imprecise estimates, particularly in the age-stratified analyses.
Accordingly, the overall-cohort analysis was considered primary, and age-stratified findings should be interpreted as exploratory. Additionally, the observed associations were generally modest in magnitude, and statistically significant findings should be interpreted as population-level trends rather than clinically meaningful differences for individual patients. Second, the DDS, although widely applied for assessing diabetes-specific distress, requires further validation in individuals with type 1 diabetes, pediatric participants, and caregiver-reported assessments.
Moreover, the ≥3 cutoff was originally established using a 6-point DDS scale and should be interpreted cautiously in the 5-point Korean version. Reliance on self-reported data without objective clinical measures, such as measures of glycemic control, hypoglycemia frequency, or complication severity, may have introduced reporting bias and limited the evaluation of biomedical contributors to distress. In particular, diabetes-related complications were assessed based on participant-or caregiver-reported history without detailed classification or independent verification of specific complication types.
Furthermore, no adjustment for multiple comparisons was applied for the secondary domain-and subgroup-specific analyses. Therefore, these findings should be interpreted cautiously and require confirmation in future studies. Third, this was a multicenter web-based convenience survey rather than a population-based representative survey, and no sampling weights were applied.
Recruitment through diabetes education centers and patient organizations may have introduced selection bias, potentially favoring individuals with greater disease engagement or perceived burden. Thus, the findings may not be fully generalizable beyond the Korean healthcare context, particularly in light of age-specific reimbursement policies for diabetes technologies. Additionally, the disability-registration questionnaire was developed specifically for this exploratory survey, and no formal pilot testing or cognitive interviewing was conducted.
The questions were preceded by explanatory information regarding potential benefits of disability registration and did not include a neutral response option; therefore, the high proportion of participants supporting registration should be interpreted cautiously because the question framing may have influenced responses. Fourth, responses in the pediatric group were predominantly provided by caregivers. Although caregivers were instructed to respond based on the child’s experiences and perspectives and respondent type was included as a covariate in multivariable analyses, the DDS was originally developed as a first-person self-report instrument.
Moreover, adjustment for respondent type does not establish measurement equivalence between self-reported and caregiver-proxy-reported DDS scores, and caregiver report was itself associated with higher DDS scores in the adjusted analysis. Therefore, caregiver-reported responses may not fully reflect patients’ subjective experiences, and the observed age-group differences in DDS scores should not be interpreted as direct evidence of differences in subjective distress between adult and pediatric patients. Finally, this cohort was predominantly composed of individuals with type 1 diabetes (98.5%), whereas few participants had other forms of PED, including pancreas transplantation and pancreatectomy.
Detailed information on current insulin requirements, graft function, or posttransplant metabolic status among pancreas transplant recipients was not collected; therefore, disease-specific characteristics and subgroup analyses could not be evaluated. Hence, the findings should be interpreted primarily in the context of type 1 diabetes.
In conclusion, diabetes-related distress represents a substantial and clinically relevant burden among individuals with PED, predominantly type 1 diabetes, with emotional burden being particularly prominent. The observed associations with clinical and demographic characteristics highlight the importance of routine psychosocial assessment and targeted support across the disease course. The association between distress and perspectives on disability registration suggests that perceived burden may be related to views of formal recognition and support needs.
These findings may inform clinical practice and contribute to ongoing discussions regarding psychosocial care and supportive frameworks for individuals with insulin-dependent diabetes.