Abstract
Background
In 2018, the American College of Gastroenterology published guidelines for Crohn’s disease management that emphasized the importance of addressing the patient’s quality of life (QOL). Due to the unique challenges that they face, afflicted patients and their families benefit from support groups that provide psychosocial support. Hospitals have traditionally preferred in-person support group meetings, but there has recently been a great increase in the need for online meetings amidst the COVID-19 pandemic. With increasing usage of the Internet for health advice and assistance, it is important to assess the availability of information on support groups online.
Methods
Two independent investigators queried the terms “Crohn’s support group” using the Google search engine. The first 100 websites were analyzed and categorized into either informational websites (IW) or professional websites (PW) depending on their association. The mode of support group meetings was categorized as either online or in-person. Websites that included outdated events, were inaccessible, did not specify the mode of meeting, required additional contact, or were irrelevant were excluded. Statistical analyses were performed using the chi-squared test of independence with significance level at p<0.05.
Results
A total of 56 websites (33 IW, 23 PW) met our inclusion criteria. IW offered online meetings more often than PW (60.6% and 39.1%, respectively; p=0.11). In contrast, PW offered in-person meetings more often than IW (73.9% and 69.7%, respectively; p=0.73). Excluded websites (30 IW, 14 PW) were further analyzed for their reason for elimination. For IW, the most frequent causes of exclusion in descending order were as follows: irrelevance (30.0%), outdated (26.7%), inaccessible (20.0%), did not specify the mode of meeting (13.3%), and redirected for further information (10.0%). Listing of outdated sessions was the most common reason for exclusion of PW from the study (57.1%), and the proportion was significantly higher than IW (26.7%) (p=0.01).
Conclusion
Crohn’s disease patients face unique challenges that require special attention. Support groups are an important means of alleviating stress, depression, and anxiety in order to improve their QOL. Yet, due to the COVID-19 social distancing policies, many are refrained from participating in in-person sessions. This study illustrates that more online support group meetings are needed and that professional websites should improve on making regular updates for future meeting sessions.
Educational and Psychosocial Support Needs in Lynch Syndrome: Implementation and Assessment of an Educational Workshop and Support Group
