[PRISM for prioritizing disease-related topics in inpatient systemic sclerosis assessment: A descriptive-qualitative...

PRISM for prioritizing disease-related topics in inpatient systemic sclerosis assessment: A descriptive-qualitative study Abstract: Background: Systemic sclerosis (SSc) is a rare disease characterized by heterogeneous clinical courses. The wide range of disease-related issues is perceived as a complex burden of disease. The Systemic Sclerosis Assessment (SScA) currently lacks a tool that supports patients in independently prioritizing these issues. The Pictorial Representation of Illness and Self Measure (PRISM) could be suitable for this purpose. Aims: This study examines which factors healthcare professionals (HCPs) in nursing, occupational therapy, and management in an inpatient rheumatology setting perceive as influencing the implementation of PRISM into the SScA. Additionally, the experiences of SSc-patients with PRISM in the prioritization of disease-related issues will be highlighted. Methods: In this primarily qualitative, multi-method process evaluation, semi-structured interviews were conducted with five HCPs and 14 patients, along with an in-depth, standardized survey of the interdisciplinary team, followed by a descriptive analysis. Results: The HCPs found PRISM helpful in better understanding the context of the patient's situation. Patients felt that PRISM made them feel seen and taken seriously in shared decision-making. PRISM enabled visual prioritization of topics in the SScA. The sample size allows only for context-specific findings. Conclusions: PRISM shows potential in the SScA for visualizing disease-related topics. Further conceptual clarification regarding standardized application is necessary prior to broader implementation.