Background/Objectives: The multifactorial nature of immune-mediated inflammatory diseases (IMIDs) requires integrating pathophysiological understanding with subjective patient experiences. Patient-reported outcome measures (PROMs) are a useful tool for incorporating this in routine clinical practice. However, current PROMs do not fully encompass the complete subjective health experiences (SHE) of patients and are thus insufficient for guiding truly personalised care. The SHE model provides insights into SHE through the determinants of disease acceptance and perceived control. While validated across various demographics, its predictive power in IMIDs cohorts remains unexplored. This study aims to assess whether acceptance and perceived control in the SHE model predict health experiences in patients with IMID and how these immunological conditions compare. Methods: Questionnaires regarding health perception, acceptance, control, and subjective health experiences were distributed to 450 Dutch citizens. Descriptive statistics, reliability checks, and partial least squares structural equation modelling were used to examine relationships between variables. Results: Health perception strongly predicts SHE through acceptance and control. Across all conditions, the pathway moves from health perception to control, then to acceptance, and finally to SHE. However, the roles of acceptance and control differ by condition. In burdensome diseases like inflammatory bowel disease and rheumatoid arthritis, acceptance plays a greater role, while control has a stronger influence in conditions like psoriasis. Conclusions: This study supports the predictive validity of the SHE model for IMIDs, showing that disease acceptance and control affect health experiences differently across conditions. These insights improve the understanding of psychological factors in health experiences and call for tailored interventions for patients with IMID.

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.

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.

Purpose: Patients with immune-mediated inflammatory diseases (IMIDs) often experience substantial impairments in health-related quality of life that cannot be fully explained by clinical disease activity alone. The Subjective Health Experience (SHE) model offers a framework, capturing how patients experience their health through the psychological constructs of disease acceptance and perceived control. This study aimed to refine the SHE model for clinical use in IMIDs by identifying demographic, disease-related, and psychosocial characteristics associated with distinct patient segments based on acceptance and perceived control. Patients and Methods: In this cross-sectional study, 500 patients with IMIDs (inflammatory bowel disease, psoriasis, rheumatoid arthritis, and axial spondyloarthritis) completed questionnaires assessing demographics, subjective health experience, health-related quality of life, psychological distress, disease activity, and disease impact. Based on sample-specific median thresholds for acceptance and control, patients were classified into four SHE segments. Differences between segments were examined using ANOVA, chi-square tests, and multinomial logistic regression. Results: Similar distributions of the four SHE segments across IMIDs supported the disease-agnostic applicability of the model. Patients in the high acceptance/high control segment reported better subjective health experience, higher health-related quality of life, less psychological distress, and lower disease activity and impact than those in the low acceptance/low control segment. In adjusted multinomial regression analyses, worse subjective health experience was associated with membership of all three other segments compared with the high acceptance/high control segment (OR 0.51– 0.71), while worse health-related quality of life was independently associated with the high acceptance/low control and low acceptance/low control segments (OR 1.19 and 1.27, respectively). Conclusion: Segmenting patients by acceptance and perceived control revealed meaningful differences in quality of life, psychological distress, and disease impact across IMIDs. These findings provide clinically actionable profiles that can inform targeted supportive strategies and support more personalised care pathways and efficient allocation of healthcare resources.

Background: Patients with immune-mediated inflammatory diseases (IMIDs) who score low on both acceptance and perceived control are classified as segment 4 in the Subjective Health Experience (SHE) model. They represent the most psychologically vulnerable group. Prior work in oncology has identified heterogeneity within this segment, but whether similar differentiation exists in IMIDs remains unknown. Therefore, the present study examines heterogeneity within SHE segment 4 in IMIDs by comparing moderate and severe subgroups on psychological and disease-related outcomes. Methods: A cross-sectional survey was conducted among 500 Dutch adults with physician-confirmed IMIDs. Of these, 166 were classified in segment 4 and subdivided into moderate ( n = 96) and severe ( n = 70) subgroups based on median acceptance and control scores. Group differences in psychological (i.e., subjective health, Health-Related Quality of Life (HRQoL), psychological distress) and disease-related outcomes (i.e., self-reported disease severity and activity) were assessed using t -tests and chi-square analyses. Multiple linear regression analyses were performed to determine whether subgroup differences remained after adjustment for demographic and clinical characteristics. Results: The severe subgroup reported a significantly poorer subjective health, lower HRQoL, and higher levels of anxiety, depression, and overall psychological distress, compared with the moderate subgroup. These associations remained significant after adjustment for age, gender, education, diagnosis, and comorbidity burden. No significant differences were observed in disease activity, disease impact, or comorbidity burden. Exploratory diagnosis-specific analyses suggested that subgroup differences were present across diagnoses, although subgroup sizes were limited. Conclusion: Meaningful psychological heterogeneity exists within SHE segment 4 in IMIDs and appears to be primarily related to psychological distress and quality of life rather than disease-related factors. These findings support the potential value of the SHE model for identifying patients who may benefit from personalized supportive care.

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