Personalizing supportive healthcare for patients with immunological disorders

Abstract

Current insights to personalize supportive care for patients with immunological disorders, especially in the context of medical treatments, remain inadequate. Delivering and guiding supportive care unquestionably contributes to a higher quality of life and better overall healthcare. The 'Subjective Health Experience (SHE) Model' provides a general framework, comprising four segments, to differentiate supportive healthcare in a quick and practical approach. In this report both health care workers and patients tailored the unique needs of patients with immunological disorders to improve their supportive care. Employing qualitative methods, group discussions and individual interviews were conducted with 19 healthcare professionals and 18 patients suffering from Rheumatoid Arthritis/Spondylarthritis, Inflammatory Bowel Disease (Crohn’s disease and Ulcerative colitis), and Psoriasis/Hidradenitis Suppurativa. The aim was to ascertain nuanced insights into the behaviour, questions, and needs of patients with six common immunological conditions guided by the SHE-model, thereby refining the personalized supportive care framework. A detailed description was made for patients with immunological disorders per SHE-model segment. Based on these insights, it was determined for each segment ‘WHAT’ kind of supportive care is needed and ‘HOW’ it should be offered. Notably, patients emphasized the qualitative aspects of their interactions with healthcare professionals (attention, acknowledgment, and empathetic communication), contrasting with professionals’ focus on the treatment plan. This led to a strategic allocation of supportive care interventions across patient segments. This study has significantly advanced our understanding of appropriate supportive healthcare for patients with immunological disorders from the perspective of the SHE-model. These findings not only enrich the existing literature but also equip healthcare professionals with a concrete guide for enhancement of supportive care, as the SHE-model is easy to perform in daily clinical care. Attention, acknowledgment, and listening comprise the foundational elements for offering and guiding supportive care.