Introduction
Inflammatory bowel disease (IBD) is known as one of the major chronic and recurrent intestinal disorder that is manifested in two main forms of ulcerative colitis (UC) and Crohn’s disease (CD). They are followed by a wide variety of complications in developed countries and its incidence rate is rising in developing regions [
1,
2]. UC causes superficial mucosal inflammation in the colon that leads to ulcerations, toxic mega colon, profuse bleeding, and acute severe colitis (ASC). On the other hand, CD affects all parts of the digestive tract often discontinuously, and is characterized by transmural inflammation, which results in certain problems like abscesses, fibrotic strictures, and fistulas [
3]. North America, Europe, and Asian industrialized countries have a higher prevalence rate of UC [
4]. Moreover, people over 30 years old are at higher risk of developing UC [
5]. In contrast, nearly one-fourth of CD diagnosis occurs during adolescence [
6].
Patients with IBD suffer from a wide range of symptoms such as abdominal pain, fatigue, weight loss, diarrhea, and bloody stools or rectorrhagia [
7,
8]. The vastness of such kind of problems causes psychological and social impairments that severely disrupts the patient’s normal life [
9]. Subsequently, patients experience reduced quality of life because of low self-esteem, poor body image, difficulty in intimate relationships, and decreased productivity [
10]. In such circumstances, it is necessary that patients and their caregivers receive adequate and appropriate information and training to deal with the disease and control its sequels [
9]. Furthermore, IBD patients are usually on long-term use of medications and invasive interventions. This condition exacerbates the need for extra support and information [
11].
Previous studies have shown that the majority of IBD patients prefer to receive their required information through gastroenterologists and the Internet [
12,
13]. However, half of the patients have perceived deficiencies in the received information, and thereby, look for more reliable sources [
14]. Also, limited data is currently available regarding preferences of IBD patients for different types of needs. Therefore, the present study aimed to establish the preferences of IBD patients for informational and supportive needs besides sources of obtaining information via Confirmatory Factor Analysis (CFA) and Exploratory Factor Analysis (EFA).
Discussion
IBD, a chronic immune-mediated illness of the gastrointestinal tract, adversely modifies the mental and physical health of the affected patients [
37]. The chronic nature of IBD and the complexities in managing the disease make it essential to provide support and necessary information in different required aspects such as treatment options, symptom improvement, safe medication use, and maximum comfort [
38‐
40]. Patients with IBD use different resources and have various preferences to meet such needs [
41,
42]. Exploratory and confirmatory analysis determine those important needs and preferences of IBD patients. In the present study, a model was established based on 12 important factors identified by EFA:
five factors in the
information needs section including self-management information (factor 1), preventive and supportive care information (factor 2), lifestyle and risky behavior information (factor 3), medical information (factor 4), and health care provider information (factor 5);
two factors in the information source section including scientific resources and support service (factor 1) and health care provider team (factor 2);
two factors in the methods of information’s presentation section including educational media (factor 1), social Media and telephone information service (factor 2); and finally,
three factors in the
supportive needs section including patient-communication needs (factor 1), psychosocial support (factor 2), and facilities supports (factor 3). The aforementioned factors in the model have explained at least 60% of the total variance. Also, the confirmatory factor analyses approved the current model as the general one for different needs of patients with IBD.
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. Unfortunately, such information is either lacking or not received properly to the patients [
41,
44]. To overcome these challenges, health policymakers should take regular measures in order to improve the methods of receiving acceptable information to the patients by implementing innovative ways.
Majority of the patients eagerly seek to establish a consistent patient-physician communication in order to meet their informational needs [
12,
41]. Having sufficient amounts of information improves self-management in IBD patients [
12]. Easy access to proper information has a positive impact on therapeutic outcomes and quality of life, and is related to emotional adjustment [
45‐
47]. Information can be presented to the patients in various formats via books, brochures, social media, and direct contact with specialists through phone or email [
48].
Supportive needs are also of critical importance since they help patients to deal with the illness and its consequences [
49]. IBD patients face with different financial, psychological, and social problems, which shows the value of supportive needs. For instance, many patients with IBD have lost their jobs due to disease sequels such as depression and anxiety [
50,
51], and supportive help of psychiatrists is effective in reducing the upcoming financial burden imposed to IBD patients [
52]. Hence, patients need to receive pertinent support from insurance and health organizations, and psychosocial support from their relatives and healthcare providers.
In one study, patients’ experiences of living with IBD were studied with a focus on information and support needs. Patients were frustrated about prolonged diagnosis process, which becomes exacerbated by misdiagnosis and negative impact on quality of life. Loss of trust between healthcare professionals and increased feelings of fear results from lack of information that causes negative effects on patients’ self-management of the disease. Also, the study highlighted the importance of emotional and practical support from partners and family members. Moreover, support that was provided from nurses and surgeons was considered as the highly valued ones. Patients declared that access to information and support improves their life and helps to regain trust in healthcare practitioners [
14].
In a recent study, initial medical unmet needs were explored in UC patients. Out of 18, four needs were attributed to inability to lead a normal life. It was declared that better understanding of patients’ view is essential for handling the impact of UC on the life. A further three of them related to the importance of early diagnostic and therapeutic approaches. Another three needs were about new treatment alternatives in these patients. Seven unmet needs dealt with drawbacks of current treatments. Other remaining needs have focused on education of healthcare practitioners and raising awareness regarding development, publication, and dissemination of scientific research for different treatment options. At the end, the authors stated that there are considerable number of critical problems for management of UC that need to be addressed in future research [
53].
In another study, challenges of patients with IBD for living and managing of the disease were investigated. Physical symptoms like pain, frequency of bowel motions, urgency, and diarrhea were identified as the one of the major challenges. Accordingly, subsequent impacts of these challenges on different aspects of patients’ life such as social isolation, psychological fragility, and reduced educational and professional opportunities were noted. Also, findings revealed that patients experienced the absence of meaningful support as a serious life challenge mainly from family and friends, not that from healthcare professionals. However, further researches were needed for elucidation of support interventions from healthcare providers and the effect of such helps on self-management of the challenges [
54].
Limitations of this study should be acknowledged too. One of the inherent limitations of such studies, self-report assessment, is reporting bias. However, high response rate attenuates this weakness and promotes this notion that the sample population is a good representative of the overall IBD patients. Furthermore, only IBD patients who agreed to fill the questionnaire were included, and this may cause selection bias. Generalizability of the findings may be restrained by unique characteristics of the population. Needs, preferences, and beliefs of one population are not similar to other peers from other countries, societies, and cultures. As the questionnaire of the study was filled through online system other than manually, some difficulties and errors may be occurred for the users in terms of fidelity and careful responding to the items.
Needs and preferences of IBD patients that have been identified in this study should be evaluated with regard to effectiveness of information resources and presentation methods. Future investigations should be focused on how factor structure of the needs and preferences identified in the current study can be extended to other populations. Needs and preferences of IBD patients in younger age or under the legal age of 18 could be also the subject of future studies.
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