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Background: Rheumatic and musculoskeletal disorders (RMDs) affect a significant portion of the global population, with an estimated 1.63 billion people worldwide suffering from these conditions in 2020 [1]. RMDs are the second leading cause of non-fatal disability and are projected to increase in prevalence. Despite their significant impact on quality of life, RMDs are often unrecognised by patients and undiagnosed by healthcare professionals, leading to delayed treatment and poor patient outcomes. Identifying and addressing the interactions of RMD patients with healthcare organisations (touchpoints) that have unintended negative effects (conflict points) in the patient journeys, is essential for improving care and outcomes for individuals with RMDs.
Objectives: To provide a comprehensive understanding of the patient journeys experienced by individuals with RMDs by characterising the touchpoints and their effects on patient care.
Methods: A systematic search of three medical databases (Medline, Cochrane Library, and Embase) was conducted to identify qualitative and mixed-methods studies reporting patients’ and healthcare providers’ perspectives regarding experiences, challenges, and barriers from RMD symptom onset to routine follow-up. Two independent researchers screened studies, collected data, and performed quality assessments using the Joanna Briggs Institute’s (JBI) Critical Appraisal Checklist for Qualitative Research.
Results: From 1,470 identified records, 36 studies were included in the final analysis. Based on the JBI criteria, the quality of included studies was generally fair, with 14 classified as high quality, 13 as medium-high quality, 3 as medium-low quality, and 6 as low quality. The review protocol was registered on the PROSPERO database (ref: CRD42024512822). Touchpoints and conflict points were categorised according to the patient journey, which was divided into four main phases:
Help-seeking touchpoints:
Patient behaviour: Symptom recognition and interpretation challenges led to delays in seeking medical attention.
Relation with others: Social support and validation influenced help-seeking behaviours.
Medical encounters: Initial healthcare interactions often resulted in misdiagnosis or dismissal of symptoms.
Diagnosis touchpoints:
Diagnostic delays: Median times ranged from 3 months to 12 years across various RMDs.
Knowledge gaps: Limited awareness among healthcare professionals contributed to delayed diagnoses.
Patient experience: High expectations and disappointment with healthcare providers were common.
Treatment and management touchpoints:
Doctor-patient relationship: Effective communication and shared decision-making were crucial for treatment adherence.
Healthcare system barriers: Access to multi-professional teams and treatment options varied.
Patient perceptions: Understanding of treatment goals and side effects influenced adherence.
Cross-sectional factors:
Patient education: Improved knowledge about RMDs empowered patients to self-manage.
Healthcare coordination: Fragmented care and poor provider coordination indered effective management.
Psychosocial impact: Emotional and social consequences of RMDs affected patients’ well-being.
The analysis revealed key factors contributing to delays in RMD diagnosis and treatment, including healthcare system barriers, patient behaviours, disease complexity and unclear symptoms, and factors associated with the doctor-patient relationship. Patients faced challenges to symptoms’ recognition, interpretation and response, leading to prolonged time to diagnosis. Additionally, perceived lack of physicians’ empathy and limited access to specialists, were identified as barriers to timely diagnosis and effective treatment.
Conclusion: This review underscores the importance of understanding patient experiences to improve healthcare delivery for individuals with RMDs. It highlights the need for 1) Enhanced education and training for healthcare providers to improve early recognition and diagnosis of RMDs, 2) Better coordination of care across different healthcare levels and specialities, 3) A more patient-centred approach to treatment, incorporating shared decision-making and addressing psychosocial aspects of RMDs, 4) Improved access to specialised care and multi-professional teams, and 5) Strategies to address diagnostic delays include developing more definitive diagnostic tests and improved referral pathways. Future research should focus on developing and evaluating interventions to address these identified challenges and improve the RMD patient journey.
REFERENCES: [1] Collaborators GBDOMD. Global, regional, and national burden of other musculoskeletal disorders, 1990-2020, and projections to 2050: a systematic analysis of the Global Burden of Disease Study 2021. Lancet Rheumatol 2023;5(11):e670-e82. doi: 10.1016/S2665-9913(23)00232-1 [published Online First: 20231023].
Acknowledgements: This SPIDeRR study was funded by a HORIZON EU Grant Agreement No 101080711.
Disclosure of Interests: Teresa Oton TO’s company has worked as a contracted consultant for laboratories among other institutions, such as BIOHOPE SCIENTIFIC SOLUTIONS FOR HUMAN HEALTH S.L, BMS, Fresenius Kabi, Galápagos, GSK, Lilly, Novo Nordisk Pharma SA, Nordic Pharma, NOVARTIS, Pfizer, Sandoz, SANOFI, Maria Villalobos Quesada: None declared, Estíbaliz Loza EL’s company has worked as a contracted consultant for laboratories among other institutions, such as BIOHOPE SCIENTIFIC SOLUTIONS FOR HUMAN HEALTH S.L, BMS, Fresenius Kabi, Galápagos, GSK, Lilly, Novo Nordisk Pharma SA, Nordic Pharma, NOVARTIS, Pfizer, Sandoz, SANOFI, Loreto Carmona LC’s company has worked as a contracted consultant for laboratories among other institutions, such as BIOHOPE SCIENTIFIC SOLUTIONS FOR HUMAN HEALTH S.L, BMS, Fresenius Kabi, Galápagos, GSK, Lilly, Novo Nordisk Pharma SA, Nordic Pharma, NOVARTIS, Pfizer, Sandoz, SANOFI.
© The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (