Inflammatory bowel disease patients' perspectives of non-medical needs

Inflammatory bowel disease (IBD) imposes a huge burden on the healthcare systems and greatly declines the patient's quality of life. However, there is a paucity of detailed data regarding information and supportive needs as well as sources and methods of obtaining information to control different aspects of the disease from the perspectives of the patients themselves. This study aimed to establish the IBD patients' preferences of informational and supportive needs through Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA).

IBD patients were recruited from different centers. Considering inclusion and exclusion criteria, 521 participants were filled a predefined questionnaire. This questionnaire was prepared through literature review of the recent well-known guidelines on the needs of IBD patients, which was further approved by the experts of IBD area in three rounds of Delphi consensus. It includes 56 items in four sections of informational needs (25), supportive needs (15), sources of information (7), and methods of obtaining information (9).

In particular, EFA was used to apply data reduction and structure detection. Given that this study tries to identify patterns, structures as well as inter-relationships and classification of the variables, EFA was utilized to simplify presentation of the variables in a way that large amounts of observations transform into fewer ones. Accordingly, the EFA identified five factors out of 25 items in the information needs section, three factors out of 15 items in the supportive needs section, two factors out of 7 items in the information sources section, and two factors out of 9 items in the information presentation methods. Through the CFA, all 4 models were supported by Root Mean Squared Error of Approximation (RMSEA); Incremental Fit Index (IFI); Comparative Fit Index (CFI); Tucker-Lewis Index (TLI); and SRMR. These values were within acceptable ranges, indicating that the twelve factors achieved from EFA were validated.

This study introduced a reliable 12-factor model as an efficient tool to comprehensively identify preferences of IBD patients in informational and supportive needs along with sources and methods of obtaining information. An in-depth understanding of the needs of IBD patients facilitates informing and supporting health service provision. It also assists patients in a fundamental way to improve adaptation and increase the quality of life. We suggest that health care providers consider the use of this tool in clinical settings in order to precisely assess its efficacy.