Development and Validation of an Educational Book on Self-Management in Inflammatory Bowel Disease Based on Patient Preferences and Expert Opinions: A Methodological Study

Norouzkhani, Narges; Bahari, Ali; Faramarzi, Mahbobeh; Shokri Shirvani, Javad; Eslami, Saeid; Tabesh, Hamed

doi:10.3390/jcm12247659

Cited by 4 publications

(2 citation statements)

References 39 publications

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“…Several studies have acknowledged that informational needs are the top priority ones in IBD patients [ 12 , 42 , 43 ]. From the patients’ point of view, information is needed in various areas including, but not limited to, medical, self-management, receiving care (preventive or supportive), and communication with the health care team.…”

Section: Discussionmentioning

confidence: 99%

Inflammatory bowel disease patients’ perspectives of non-medical needs

Norouzkhani,

Faramarzi,

Bahari

et al. 2024

BMC Gastroenterol

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Background 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). Methods 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). Results 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. Conclusions 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.

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Section: Discussionmentioning

confidence: 99%

Inflammatory bowel disease patients’ perspectives of non-medical needs

Norouzkhani,

Faramarzi,

Bahari

et al. 2024

BMC Gastroenterol

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“…Creating patient-centered materials such as detailed pamphlets, diagrams, and illustrations can simplify the complexity of ASUC care. 42,43 These resources would not only delineate the stepwise approach to management but also clearly de ne what constitutes a therapeutic response versus failure. For instance, visual aids could illustrate the timeline of expected outcomes following initiation of rst-line therapy, the decision points for considering rescue treatments, and the potential pathways leading to surgery.…”

Section: Discussionmentioning

confidence: 99%

Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis

Romain,

Larson,

Kathuria

et al. 2024

Preprint

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Introduction: Acute severe ulcerative colitis (ASUC) is a life-treating presentation of ulcerative colitis (UC) that requires prompt initiation of treatment to avoid complication. Unfortunately, outcomes for ASUC are suboptimal, with as many as 20-30% of patients requiring colectomy. This can be challenging for patients and highlights the need to understand patient experiences and perspectives navigating ASUC. Methods: A qualitative descriptive study utilizing semi-structured interviews was conducted to understand perspectives and experiences of patients navigating ASUC. Adult patients hospitalized for ASUC between January 2017 and March 2024 were eligible. Interviews were conducted both retrospectively among patients with a recent hospitalization and prospectively among patients within 24 hours of hospitalization for ASUC. Interviews were analyzed using a well-established hybrid inductive-deductive approach. Results: Thirty-four patients (44.2% response rate) hospitalized for ASUC were interviewed. Hybrid thematic analysis uncovered five major themes: 1) the pervasive impact of UC on QoL and mental health, 2) challenges associated with navigating uncertainty 3) prioritizing colon preservation, 4) bridging the divide between outpatient expectations and inpatient realities, and 5) balancing rapid symptom improvement with steroid safety. Our findings advocate for transparent approach to care, emphasizing the need for effective communication, education, and better alignment with patient values and expectations. Conclusions: Five key themes were identified, each with significant implications for developing a more patient-centered approach to ASUC care. These themes captured meaningful insight into patient perceptions and experiences, identifying multiple areas for actionable interventions to improve care.

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Effect of a gamified mobile‐based self‐management application on disease activity index, quality of life, and mental health in adults with inflammatory bowel disease: A protocol of a randomized controlled trial study

Norouzkhani,

Faramarzi,

Bahari

et al. 2024

Health Science Reports

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Background and AimsInflammatory bowel disease (IBD) is a chronic inflammatory gastrointestinal tract disease subdivided into Crohn's disease (CD) and ulcerative colitis (UC). There is currently no cure for IBD, and individuals with IBD frequently experience a lower health‐related quality of life (HRQOL) than the general population. Gamification has become an increasingly popular topic in recent years. Adapting game design concepts to nongaming contexts represents a novel and potential approach to changing user engagement. This study will be conducted with the aim of evaluating the effect of a gamified mobile‐based self‐management application on disease activity index, quality of life, and mental health in adults with IBD.MethodsA multicenter, parallel, two‐arm, exploratory randomized controlled trial with a 6‐month follow‐up per patient will be designed to compare the impact of the gamified mobile‐based tele‐management system on primary and secondary health outcomes and outpatient visits in 210 patients with all types of IBD which are divided equally into a control group with standard care and an intervention group which will use the developed mobile application named MY IBD BUDDY. All patients will attend study visits at baseline, 12 and 24 weeks, and routine IBD clinic visits or telephone consultations based on randomization group assignment. Disease activity or disease activity index, mental health (anxiety and depression) symptoms, quality of life, self‐efficacy, and IBD‐specific knowledge will be measured at baseline with two follow‐ups at 12 and 24 weeks.ConclusionsIn sum, the outcomes of our trial will demonstrate the impact of the gamified mobile‐based self‐management system on disease activity, quality of life, and anxiety and depression by means of interactive care and patient empowerment.Trial RegistrationIRCT: IRCT20200613047757N1. Registered November 16, 2021. Prospectively registered and visible at OSF (https://doi.org/10.17605/OSF.IO/AWFY9).

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Development and Validation of an Educational Book on Self-Management in Inflammatory Bowel Disease Based on Patient Preferences and Expert Opinions: A Methodological Study

Cited by 4 publications

References 39 publications

Inflammatory bowel disease patients’ perspectives of non-medical needs

Inflammatory bowel disease patients’ perspectives of non-medical needs

Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis

Effect of a gamified mobile‐based self‐management application on disease activity index, quality of life, and mental health in adults with inflammatory bowel disease: A protocol of a randomized controlled trial study

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