Personalising Supportive Healthcare for Immune-Mediated Inflammatory Disorders: A Qualitative Exploration of Patient Needs and Behaviours Based on the Subjective Health Experience Model

TL;DR

This study explores how to personalize healthcare for patients with immune-related disorders by understanding their unique needs and behaviors.

Contribution

The study introduces a framework for tailoring supportive care based on patient segments derived from the Subjective Health Experience model.

Findings

Patients across immune-mediated inflammatory disorders consistently emphasized the need for attention and acknowledgment.

Healthcare professionals highlighted the importance of structured and planned care delivery.

A structured framework was developed to align supportive care with patient segments, enhancing personalization.

Abstract

Current insights into how to personalise supportive care for patients with immune-mediated inflammatory disorders (IMIDs) remain limited. Enhancing supportive care can significantly improve patients’ quality of life and overall healthcare. The Subjective Health Experience (SHE) model offers a practical framework for segmenting patients based on disease acceptance and control, potentially guiding tailored supportive care.

This qualitative study had two aims: explore patient characteristics (behaviours, questions, and needs) within each SHE Segment; and determine required supportive care per Segment by identifying the what (specific types of supportive healthcare) and the how (approach of healthcare delivery).

Group discussions and individual interviews were conducted with 19 healthcare professionals in rheumatology, gastroenterology, and dermatology, and 18 patients diagnosed with rheumatoid arthritis/spondyloarthritis, Crohn’s disease/ulcerative colitis, or psoriasis/hidradenitis suppurativa.

Findings revealed consistent patterns across IMIDs regarding healthcare needs. Patients emphasised the importance of attention and acknowledgement, while healthcare professionals focused on structure and planning. Detailed Segment descriptions supported development of a structured framework aligning supportive care types and delivery approaches with each SHE Segment.

Overall, these results support the SHE framework as a guidance for coordinating supportive care across conditions, professionals, and care levels, enhancing its operational use in IMID care to improve personalisation and continuity.

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