Abstract
Background
Social Media (SM) networks are a major communication tool for patients with inflammatory bowel diseases (IBD) and healthcare professionals (HCPs). In Israel there are several SM platforms, some guided by HCPs while others are patients closed members groups. The largest HCP- patients network is called ‘Camoni’ (‘like me’). We aimed to assess topics of patients’ interest by exploration through SM.
Methods
This study had two phases: I –a qualitative study to assess topics of patients’ interest- screening. Posts of patients with IBD on ‘Camoni’ were evaluated by thematic analysis: identifying patterned meaning, coding based on topic, and categorising major groups. II - an anonymized survey was distributed online through SM networks. The survey was based on the identified topics in the screening, asking the participants to elect and delve only on the five most relevant topics. Satisfaction was assessed by visual analogue scales (VAS) of 0–100 points.
Results
Screening included 2,123 posts published on Camoni between 2014–2019. The analysis revealed 18 different topics (Figure 1). The online survey was launched on November 2019 and had 329 responders: male 47.9%, age 38 years (IQR 29–51), disease duration 10 years (IQR 4–20), active disease 43%, using medications 80.9%: steroids 8.9%, anti-TNFs 31.6%, anti-integrins 9.1%, ustekinumab 4.6%, tofacitinib 2.1%. Crohn’s disease 63.4%, perianal disease 40.8%, extraintestinal manifestations 27%, history of surgery 36.4%, care in hospital outpatient clinics 67.8%. The distribution of satisfaction VAS scores was asymmetric with skewness to the right (Figure 3). Median (IQR) for general satisfaction of the treating physician - 87.5 (73–99), accessibility to HCPs - 77.5 (48.5–92), HCP professionalism 90 (75–99), degree of understanding patients’ concerns 81 (51–96), effectiveness of communication with HCPs 81 (59.7–96). The first five elected-topics of interest were: diet, lifestyle, complementary and alternative medicine, interpretation of medical results, and referral of patients to specialists and reviews (Figure 2). Most responders (85.1%) prefer to be active on an SM network that is guided by HCPs; however,, only 22% of online survey responders were active on Camoni.
Conclusion
Patients with IBD with a significant disease burden are highly satisfied from conventional care. However, patients are still in need for further support and information, perceived as not being addressed in the conventional setting. An operative multidisciplinary setting in routine care, incorporating dietitians, IBD-nurses and HCP’s focusing on alternative and complementary medicine is advised.
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