The journey of Europeans with musculoskeletal complaints: the creation of the SPIDeRR’s personas

Objectives The Stratification of Patients Using Advanced Integrative Modelling of Data Routinely Acquired for Diagnosing Rheumatic Complaints (SPIDeRR) project aims to improve the patient journey for individuals with musculoskeletal (MSK) complaints due to rheumatic and musculoskeletal diseases (RMDs). The primary objective was to understand patients' experiences navigating the healthcare system to achieve timely diagnosis and treatment for RMDs. Secondary objectives included identifying challenges and opportunities for implementing digital tools for help seeking and diagnosis, thus enhancing access to appropriate treatments. Methods Based on the patient experience mapping framework, 3 substudies were conducted as follows: (i) a systematic review and stakeholder surveys to identify key stages and touchpoints; (ii) focus groups to gather additional insights; and (iii) synthesis of findings into visual maps and personas highlighting gaps and potential solutions. Results Substudy 1 (36 studies and 247 survey participants) revealed that navigating the healthcare systems in Europe is complex, facing significant barriers, such as limited specialist access, knowledge gaps, and inconsistent treatment pathways for people with RMDs. Substudy 2 (28 participants with and without RMDs) found that initial symptom management may delay proper care, multiple emotions emerge while waiting for a solution, and preferences for direct specialist access vs general practitioner gatekeeping vary depending on individual and healthcare system. Substudy 3 developed visual representations of 5 evocative patient journeys, outlining stages, obstacles, interactions, and emotions. Conclusions The journey of Europeans with MSK complaints is intricate and country specific, posing challenges for nontailored solutions. Personalised digital tools, improved healthcare provider education, and efficient communication between care levels are recommended to enhance the patient experience and improve outcomes for individuals with RMDs.