Among 10 different psychosocial needs, diet and a lack of clear-mindedness were the ones most patients with inflammatory bowel disease felt were affected by their disease, a study reports.
Inflammatory bowel disease (IBD) is made up of a group of autoimmune disorders, including Crohn’s disease and ulcerative colitis, that cause inflammation of the gastrointestinal (GI) tract. IBD incidence has been steadily increasing over the past few years and is now estimated to affect about 1.5 million adults in the U.S. and 2 million in Europe.
Although previous studies have shown that IBD has a negative impact on patients’ quality of life, no study ever analyzed how IBD affects their psychosocial needs, which are those that related to emotional and mental well-being.
“This is an important area to explore due to the chronicity of the illness, its high incidence in a younger population, the often-embarrassing nature of its presentation and the limited public awareness of the disease. These factors combined present daily challenges to sufferers, many of whom are in the critical years of social and professional development,” the researchers wrote.
In this study, these researchers from the University of the West Indies and their collaborators set out to determine which psychosocial needs are most affected in IBD patients and how they relate to patients’ beliefs regarding their own health, known as their illness perception.
The cross-sectional study involved a total of 115 IBD patients — 66 (57%) diagnosed with ulcerative colitis and 49 (43%) with Crohn’s — who were asked to complete a survey containing questions about clinical details and 10 different psychosocial needs the authors found relevant: diet, hygiene, incontinence, self-esteem, unattractiveness, social relationships, fear of intimacy, limitations to leisure and hobbies, lack of clear-mindedness, and loss of independence. Patients’ illness perception was determined using a five-point Likert scale.
Results showed that most IBD patients felt their disease had a negative impact on their diet (87%), followed by lack of clear-mindedness (61%) and limitations placed on their leisure and hobbies (57%). The psychosocial need patients thought was least affected was the ability to maintain good hygiene (32%).
Overall, 56% of the patients reported difficulties in coping with their disease, while 44% did not. Regarding social support adequacy, 79% of the participants felt they received proper support, whereas 21% thought they lacked adequate support.
Further analysis revealed a significant association between patients’ illness perception and all 10 psychosocial factors analyzed. On the other hand, patients’ illness perception was not linked to demographics or other clinical characteristics.
“This study can be used to bolster further research into innovative ways to identify and deal with unmet psychosocial needs of patients living with IBD,” the researchers wrote. “The key strategies can include routine psychological assessment for patients, dietary consultations and healthcare professionals proactively inquiring about issues such as sexual health and bowel incontinence.
“Evidence-based dietary guidelines for patients with IBD are needed to address the overwhelming concern of patients with diet. Secondly, the organization of awareness campaigns for the general public as well as employers are useful adjuncts to patient support groups,” they added.