A Mixed-Methods Analysis of the Insurance Experiences of Patients Undergoing Stem Cell Transplantation for Severe Crohn's Disease

Introduction: Stem cell transplantation (SCT) is a treatment for severe Crohn’s Disease (CD) which has shown promise but implementation can be complex due to insurance barriers. The objective of this study was to qualitatively examine insurance experiences of patients with severe CD who were undergoing stem cell transplantation. Methods: N=12 patients with severe CD were recruited from a single tertiary care center to participate in a mixed-methods study. They were recruited from a clinical trial in which patients agreed to undergo SCT for management of their CD. There was a multidisciplinary team available to support them through transplantation, including navigating insurance processes. A qualitative semi-structured interview was completed. Interviews were coded independently by 3 coders to identify themes. Results: Table 1 describes patient demographics. 9 themes emerged from the interviews (Figure 1). IBD Themes included: Patients chose to undergo SCT as they had run out of all other treatment options (12 of 12 patients), they experienced trauma due to the severity of their IBD (7 of 12), and subjective quality of life improved after SCT (12 of 12). Insurance themes included: Insurance denials were common and led to delays in care (9 of 12) lasting weeks to over a year, patients experienced trauma (emotional and physical) due to insurance denials (6 of 12), patients were resilient and determined to improve their health (12 of 12), and struggled to navigate insurance processes irrespective of health literacy (11 of 12). Themes highlighting opportunities for improvement included: Patients desired increased transparency in communication with insurance companies (4 of 12) and patients with advocates within insurance companies had better experiences navigating the insurance process (4 of 12). Conclusion: Patients in our study had severe CD and were willing to undergo SCT after enduring years of severe disease as they had run out of treatment options. Due to prior experience with adversity they were resilient, however repeated insurance denials led to significant delays in care and further trauma despite the support of a multidisciplinary team. Patients who described positive experiences with insurance tended to have patient advocates within insurance companies to keep them informed of the approval process. In order to avoid further trauma, insurance companies should consider policy reform to improve transparency of approval processes with the help of insurance-company-based patient advocates.Figure 1.: Interview Themes and Associated Patient Quotes. Table 1. - Patient Demographics, Disease Characteristics, and Quality of Life Scores (N=12) Patient Demographics Median Age 33 Gender Male 6 (50%) Female 6 (50%) Race White 11 (92%) Hispanic 1 (8%) Inflammatory Bowel Disease Characteristics Median age at IBD Diagnosis 15.5 Crohn's Activity Disease Index 309.09 (SD 72.2) Baseline C-reactive Protein 39.7 (SD 28) Simple Endoscopic Activity Score CD 18 (SD 9) Harvey Bradshaw Index 12.8 (SD 4.83) Karnofsky Performance Status 0.767 (SD 0.049) Crohn's Disease Location Ileal 1 (8%) Ileocolonic 7 (58%) Ileocolonic and Upper 4 (33%) Disease Characteristics Stricturing 3 (25%) Penetrating 8 (67%) Non-stricturing 1 (8%) Perianal Disease Yes 11 (92%) No 1 (8%) Past Medication Use ASA 1 (8%) Steroid 8 (67%) Immunomodulator 12 (100%) Anti-TNF 12 (100%) Anti-Integrin 11 (92%) Anti-IL12/23 12 (100%) Quality of Life Scores Inflammatory Bowel Disease Questionnaire - 32 128Scores for patients in remission generally 170-190 PHQ-8 10Normal (0-2), Mild (3-5)Moderate (6-8), Sever (9-12) Promis Global Health 7 All Promis data reported as T scores with mean of 50 and SD of 10 29.2 Promis Pain Interference 4a 68.3 Promis Sleep Disturbance 8b 53.4 Promis Satisfaction with Social Roles and Activities 4a 37.8