Diabetes mellitus (hereafter diabetes) is one of the most significant global public health concerns causing 916 Disability-Adjusted Life-Years (DALYs) per 100,000 population in 2019 worldwide (1). Despite the previous efforts, diabetes remains the second most significant cause of reduced healthy life expectancy (2). The International Diabetes Federation (IDF) estimated that unless effective prevention methods are employed, the prevalence of diabetes will increase by 54% in 2045 (3). On the national scale, the prevalence of diabetes has risen roughly 30% in Iran in the last decade, which is alarmingly higher than the global estimations (4).

The presence of diabetes is associated with increased mortality from infections, cardiovascular diseases, stroke, chronic kidney diseases, chronic liver diseases, and cancers (5). Uncontrolled diabetes can impose high direct and indirect costs on patients and healthcare systems. The annual costs attributable to diabetes were estimated to be US$1.31 trillion worldwide or 1.8% of the global gross domestic product (GDP), two-thirds of which were direct medical costs, and the one-third were indirect costs (6). In the meantime, diabetes costs are expected to grow considerably, disproportionately affecting low- and middle-income countries, where 80% of patients with diabetes live (7).

Delivery of essential medications, blood glucose management, cardiometabolic risk factors elimination, and early screening for complications via well-organized care reduce acute and chronic complications and extends healthy life expectancy among patients with diabetes (8, 9). Nevertheless, the comprehensive, evidence-based diabetes care delivery is suboptimal even in well-resourced health systems (10). Notably, multicomponent quality improvement programs have been beneficial in achieving diabetes care goals (11). In this sense, investigating healthcare quality and costs for diabetes is essential to make evidence-based decisions to lower the costs and increase the quality of care.

Thus, the objective of this study was to investigate the journey of patients with diabetes in the healthcare system via assessing the healthcare utilization, quality, and costs on a national level in Iran based on the results of the Iran Quality of Care in Medicine Program (IQCAMP). IQCAMP is a series of longitudinal surveys focusing on seven high-prevalence and high-cost diseases, including chronic obstructive pulmonary disease, congestive heart failure, diabetes mellitus, end-stage renal failure, major depressive disorder, myocardial infarction, and stroke (12). We believe this study serves as guidance on assessing the care for diabetes at the national level in a minimal but sufficient way, particularly in countries with a similar context. It could also shed light on the likely scenarios of diabetic patients go through where the healthcare system resembles Iranian healthcare architecture.

The final sample included 158 patients, among whom 91 (57.6%) were women. All patients underwent three successive monthly follow-ups, summing up to 474 patient months. The sociodemographic characteristics of participants are presented in Table 1 .

This study is the first nationally representative research that collects cost and quality information directly from patients at the national level. Medication purchases and outpatient medical visits were the most utilized healthcare services. Most direct costs were for medications and inpatient and outpatient services. Medication purchases and inpatient and outpatient services imposed the most significant proportion of out-of-pocket costs. The healthcare system's primary focus was on glycemic control rather than a fair distribution of services across preventive and therapeutic care according to standard guidelines for diabetes management (18).

Approximately 80% the direct health-related costs of diabetes were for medication purchases, inpatient services, and outpatient services. Similarly, it has been reported that inpatient and medication costs were the most expensive aspects of diabetes care in low- and middle-income countries (19). On average, out-of-pocket share constituted 78% of the total direct costs, primarily due to medication purchases. Evidence shows that change in out-of-pocket share for diabetes medications across various payer policies impacts diabetes medication usage. Patients sharing fewer drug payments tend to have a significantly higher number of months with apparent active medication coverage, a proxy for medication adherence (20).

Continuous medical care is required to achieve optimal glycemic control among patients with diabetes and prevent diabetes complications. The respondents reported receiving inpatient or outpatient healthcare services at least two times during the previous year. While home care could lead to improved diabetes-related outcomes among patients (21), it was among the least utilized services by respondents. It has been reported that some one-third of the inappropriate all-causes hospitalization stays in Iran were due to lack of home care, 35% of which was attributable to diabetes complications (22). Thus, establishing appropriate home care in the health system as well as covering home care expenses by insurance could optimize hospital bed use, reduce costs, decrease readmission rates, and prevent hospital-related complications.

More than half of the respondents said they were not asked about hypoglycemia episodes by their consulting physician during their routine follow-up visits in the last year. Based on patients’ reports, healthcare professionals did not train the patients in self-management of hypoglycemia episodes. Nevertheless, intensive antidiabetic treatments could impose patients at increased risk of hypoglycemia. While hypoglycemia-associated risk factors are yet to be adequately understood (23), the frequency and severity of hypoglycemia could be decreased via structured patient education (24). Telemedicine, as a novel and accessible tool, could be along with proper patient education to monitor blood glucose, thus reducing the risk of hypoglycemia (25).

Despite the clear benefit of weight loss in glycemic management (26), only a tiny percentage of patients with diabetes can maintain substantial weight loss (27). Notably, frequent follow-up visits can better achieve weight management (28). In our study, less than half of the respondents reported that they underwent weight measurement by healthcare professionals during the follow-up visits. However, 70% of respondents had been advised for regular physical activity and 60% for proper dietary habits.

Only a quarter of respondents reported undergoing foot examination by healthcare professionals, and less than one-tenth said their footwear had been evaluated for diabetic foot prevention. Moreover, less than one-third of respondents reported being trained in the regular self-foot examination and the features of an optimized shoe for patients with diabetes. The lifetime incidence of foot ulcers among patients with diabetes could be as high as 25%. There is strong supporting evidence for screening all patients with diabetes to identify those at risk for foot ulceration. High-risk patients could benefit from prophylactic interventions, such as patient education and prescription footwear (29).

Less than 10% of respondents reported receiving an influenza vaccine during the previous year, and only 1.4% said being vaccinated against pneumococcal infection during the last five years. Reasons for low utilization of vaccines among patients could be improper knowledge (30), lack of vaccine recommendations by physicians, mistrust of vaccine safety, inconvenience of vaccination procedure, supply, and accessibility (31).

Neglecting optimal long-term diabetes management can result in a higher prevalence of diabetes complications, reducing the patient’s quality of life and increasing healthcare expenditure. So far, there has been suboptimal diabetes management in the country, as reflected in poor glycemic control (32). Nevertheless, the issue is not specific to Iran, as less than 10% of patients with diabetes in low-income and middle-income countries receive guideline-based comprehensive diabetes treatment (33). Even in countries with well-established economies like the US, improving diabetes control at the national level is a new challenge (34). Part of this challenge is justified by the complicated nature of the patient-provider relationship in setting diabetes control goals when a patient visits the physician (35).

These concerns about diabetes care are a call for concerted efforts toward scaling up the capacity of healthcare systems to follow a complete, integrated care model for the management of diabetes, which provides patient-centered, holistic, and continuous healthcare services for patients with diabetes. Holistic approaches towards diabetes management could consist of multidisciplinary teams (36), close follow-ups (37), regular home visits (38), and medication review (39). Education should become an integral part of diabetes management to empower patients to take control of their disease. Telehealth technology could be utilized for continuous disease monitoring, delivering education materials, and lifestyle promotion as a novel approach. In particular, access to telehealth in addition to in-person visits can promote access to and use of diabetes care and consequently improve health outcomes and quality of life for people with diabetes (40).

The Middle East and North Africa (MENA) region is estimated to have the second-highest global growth rate in the number of affected individuals with diabetes (41). Since 2004, the National Program for Prevention and Control of Diabetes (NPPCD) of Iran has made endeavors toward diabetes prevention and sustained care for patients with diabetes (42, 43). Despite adequate access to core medications for diabetes care, significant heterogeneity remains in comprehensive diabetes management, especially in glycemic control and complications management (44). While 81% of cities in Iran could cover essential diabetes services, 19% could not provide even the lowest coverage level (45). Without a national system for integrated diabetes control, researchers have attempted to provide quality and cost measures of diabetes care with mostly indirect estimations (46–48).

This study presented a patient-centered disease-specific collection of insights on healthcare utilization, quality, and costs of diabetes in Iran. In developing countries, where integrated health record systems do not exist, such surveys usually consist of small samples from limited geographic areas. However, this study delivers information collected from a diverse geographic area of the country using a model-based clustering method to represent the country. The study’s follow-up modules confirmed the self-reported costs with the medical bills. Nevertheless, the small sample of this demonstration study hindered sound subgroup analyses statistically. While self-reports of service utilization and care quality guarantee the patient-centeredness nature of the responses, self-reports always suffer from various biases, such as recall. This study had a small but representative sample from the entire country. It successfully provided a frame of action and a methodological blueprint for a more extensive national-level study of the exact nature with a larger sample in the future, both in developing and developed countries.

Healthcare services have focused on glycemic control, and the comprehensive management of diabetes is compromised by insufficient continuity of services for diabetes control. Medication purchases and outpatient medical services were the most utilized healthcare services among patients with diabetes. The most direct costs were medication purchases and inpatient and outpatient services. Medication purchases and inpatient and outpatient services imposed the most out-of-pocket costs.

The raw data supporting the conclusions of this article will be made available by the authors without undue reservation upon request.

The studies involving human participants were reviewed and approved by the Ethics Committee of the Tehran University of Medical Sciences. The patients/participants provided written informed consent to participate in this study.

Conceptualization, SK and SSh. Data curation, FM, MM, NS, YF, SSe, FG, SRa, SK, and SSh. Formal analysis, MA-K, S-HG, NA, YF, MA, SRo, SSe, FG, and SSh. Funding acquisition, SSh. Investigation, MA-K, YF, SSe, NR, SK, and SSh. Methodology, FM, YF, MA, SSe, NR, SK, and SSh. Project administration, FM, YF, SSe, NR, and SSh. Resources, NR and SSh. Software, YF, MA, HZ, MKh, and FG. Supervision, YF, NR, and SSh. Validation, YF, NR, SK, and SSh. Writing – original draft preparation, MA-K, S-HG, and SSh. Writing – review and editing, MA-K, FM, S-HG, MM, NS, NA, YF, MA, SRo, HZ, MKh, SSe, MKe, FG, SRa, NR, SK, and SSh. All authors contributed to the article and approved the submitted version.