Equity, expense, and expertise in biologic commissioning: adding the patient to the equation.

INTRODUCTION: Immune-mediated inflammatory diseases (IMIDs) are increasingly managed effectively with biologic medicines. However, with relatively high unit costs, there remains a meaningful pressure to ensure streamlined, equitable, and inclusive prescription of biologics in the UK. Despite an increased awareness of the benefits of patient-centric shared decision making, patients remain on the periphery of biologic selection for the treatment of IMIDs. AREAS COVERED: We provide a patient perspective on core issues in the commissioning, prescription, and decision making around biologics for IMIDs in the UK, focusing on England. In particular, the crucial aspect of determining 'value' for different stakeholders, who necessarily have different priorities, is considered. EXPERT OPINION: There are disparities in commissioning, access to, and prescription of biologics for IMIDs in the UK. This creates an unequal treatment model and drives patient dissatisfaction with an 'experience lottery' for the management of disease. A more transparent approach to prescribing decisions, made in close consultation with patients, is essential for improving equity and experience with biologic treatment of IMIDs.

The LUCID study: living with ulcerative colitis; identifying the socioeconomic burden in Europe.

BACKGROUND: Ulcerative colitis (UC) is an inflammatory bowel disease with increasing prevalence worldwide. Current treatment strategies place considerable economic and humanistic burdens on patients. The aim of this study was to determine the socioeconomic burden of UC in adult patients in European countries in a real-world setting. METHODS: In this retrospective, cross-sectional and observational pan-European study, patients with moderate or severe UC were assigned to ARM 1 and patients who had moderate or severe UC but achieved mild or remission status 12 months before index date (or clinical consultation date), were assigned to ARM 2. Clinical and medical resource use data were collected via electronic case report forms, and data on non-medical and indirect costs, and health-related quality of life (HRQoL) were collected via patient and public involvement and engagement (PPIE) questionnaires. Per-patient annual total costs per ARM and per country were calculated using the collated resource use in the last 12 months (between the start of the documentation period and patient consultation or index date) and country specific unit costs. Quality of life was described by arm and by country. RESULTS: In the physician-reported eCRF population (n = 2966), the mean annual direct medical cost was €4065 in ARM 1 (n = 1835) and €2935 in ARM 2 (n = 1131). In the PPIE population (ARM 1, n = 1001; ARM 2, n = 647), mean annual direct cost was €4526 in ARM 1 and €3057 in ARM 2, mean annual direct non-medical cost was €1162 in ARM 1 and €1002 in ARM 2, mean annual indirect cost was €3098 in ARM 1 and €2309 ARM 2, and mean annual total cost was in €8787 in ARM 1 and €6368 in ARM 2. HRQoL scores showed moderate to high burden of UC in both groups. CONCLUSIONS: The cost and HRQoL burden were high in patients in both ARM 1 and ARM 2 indicating unmet needs in the UC active population.

Ulcerative colitis: understanding the impact of ulcerative colitis on everyday life and exploring the unmet needs of patients.

BACKGROUND: Ulcerative colitis (UC) is a life-long disease characterised by flare ups and periods of remission. This market research sponsored by Janssen-Cilag Ltd was designed to gain an understanding of the impact of UC from the patient's perspective and to establish the main unmet needs associated with it. METHODS: The market research was conducted by telephone among 30 patients in the UK with a diagnosis of moderate to severe UC. RESULTS: Delayed referral from primary care to secondary care was identified as the key unmet need. Hospital appointments were often unavailable for months and in some cases, it was 6 months before a procedure was performed. Specialists rarely involved the patient in discussions regarding diagnosis and initial treatment. Communications improved when treatment changes became necessary but gaps still existed particularly regarding the continued emotional impact of UC. All patients required treatment changes to regain or maintain control and the response to medications varied between patients. Patients who had transitioned through multiple treatments feared they would run out of options and therefore require surgery. The UC "journey" was highly individualized and patients experienced many emotional "ups and downs". CONCLUSIONS: Healthcare bodies should aim to improve earlier referral to secondary care and waiting times for investigation need to be reduced significantly. Patients felt that specialists could support them in understanding their condition by discussing it with them immediately following diagnosis and by involving them in the development of their individual treatment plans. There is a need for more effective and better tolerated medications to expand the armamentarium and thus reduce the need for surgery.