P134 Barriers to care in adult morphoea: a UK and Ireland nationwide study

Abstract

Although rare, morphoea (localized scleroderma) is associated with significant physical and psychological morbidity. Previous literature has reported significant delays to diagnosis and treatment for those with the condition. However, as yet, limited research has been conducted into the responsible factors in the adult population. This nationwide study evaluated barriers to care faced by the UK and Ireland adult population with morphoea and that had the most significant bearing on access to specialist morphoea diagnosis and treatment. In this cross-sectional study, a 35-item questionnaire was completed by adult patients at the largest connective tissue disease centres in the UK and Ireland between November 2024 and September 2025. We reviewed 15 barriers to morphoea care, including access to specialist dermatologists, primary care knowledge of morphoea, and distance from appropriate care facilities. We subsequently performed descriptive and multiple regression analyses on this dataset. Of 108 respondents, the majority (n = 95, 88%) were female and white British/Irish (n = 92, 85%), with (n = 58, 54%) university educated or higher. The mean age was 47 years (SD 18.3). Patients identified several barriers to care, including finding reliable information about morphoea, long wait times or distances for a dermatology appointment, balance of work and healthcare needs, and identifying effective medications. The barrier most commonly identified as a major problem was lack of knowledge about morphoea in the community. Household income < £100 000 was associated with specific barriers to care. Diagnosis and commencement of systemic treatment occurred > 1 year from initial presentation in 56% of patients. The dominant barrier identified was lack of knowledge about morphoea in the community. There was a mean delay of 4.0 years (SD 10.0) between symptom onset and diagnosis. This was consistent across all income groups and education levels. We suggest a concerted public health approach is required to improve community medical education on morphoea, thus improving patient outcomes.