Rachmadianti S. Hanifa, Sudewi M. Khoirunnisa, Rizka Maulida, Firas F. Alkaff, Maarten J. Postma, Jurjen van der Schans
Objective: Understanding the diabetes patient journey, from awareness, screening, diagnosis, treatment, adherence and control, is crucial for improving outcomes. However, in many low- and middle-income countries, including Indonesia, data across this continuum of care remain limited due to limited health information exchange capacity. This study aimed to map and estimate the prevalence of true diabetes and key touchpoints along the patient journey to identify gaps in diabetes management in Indonesia. Methods: We applied an evidence gap mapping approach by systematically searching relevant literature published between 1 January 2014, and 27 March 2025, in PubMed, Web of Science, Scopus and Embase, complemented by unstructured searches of government websites. Evidence was visualised using a chord diagram, bar chart and heatmaps. Random-effects meta-analyses were used to estimate pooled prevalence, stratified by study setting and sample representativeness relative to the national population. Results: Among 94 records, none fully applied diabetes patient journey frameworks and most of the evidence was assessed as low quality. Screening was the least studied touchpoint and awareness missed nationally representative data. Pooled prevalence estimates were: true diabetes 13% (95% confidence interval (CI): 9%–17%), awareness 71% (95% CI: 54%–85%), screening 19% (95% CI: 0%–55%), diagnosis 15% (95% CI: 6%–27%), treatment 89% (95% CI: 80%–95%), adherence 59% (95% CI: 49%–69%) and control 31% (95% CI: 25%–36%). Prevalence rates were generally lower in studies conducted in the general population using nationally representative samples. Pooled prevalence across touchpoints and subgroups decreased after excluding low-quality studies, although heterogeneity within subgroups remained high. Conclusion: Evidence gap mapping offers a practical approach to generating local patient journey data in countries with limited health information exchange capacity. Specifically for Indonesia, a comprehensive consideration of the diabetes patient journey is lacking. Barriers exist across all touchpoints, particularly in the general population. © 2026 The Author(s). Tropical Medicine & International Health published by John Wiley & Sons Ltd.
Department of Health Sciences, University Medical Center Groningen, Groningen, Netherlands; Department of Pharmacy, Institut Teknologi Sumatera, Lampung Selatan, Indonesia; Department of Epidemiology, Faculty of Public Health, Universitas Indonesia, Depok, Indonesia; Division of Pharmacology and Therapy, Department of Anatomy, Histology, and Pharmacology, Faculty of Medicine, Universitas Airlangga, Surabaya, Indonesia; Division of Nephrology, Department of Internal Medicine, University of Groningen, University Medical Center Groningen, Groningen, Netherlands; Department of Economics, Econometrics, & Finance, University of Groningen, Faculty of Economics & Business, Groningen, Netherlands; Center of Excellence for Pharmaceutical Care Innovation, Universitas Padjadjaran, Bandung, Indonesia