An analysis of sickle cell disease content on tiktok Free

Introduction:

Sickle cell disease (SCD) is a hereditary hemoglobinopathy affecting approximately 100,000 individuals in the United States. It predominantly affects African American populations, and accounts for a substantial global burden of disease and mortality (Lee et al., 2019). The condition is characterized by chronic anemia, recurrent pain crises, and end-organ complications. It is associated with a reduced life expectancy by 20 – 30 years compared to the general population (Lubeck et al., 2018; Thien et al., 2016). SCD requires thorough patient education, lifelong care, and regular follow-up. Nevertheless, patients often experience barriers to care. Socioeconomic factors, fear of medical bias, and lack of health literacy can all impact patients' continuity of care. Thus, patient education is key to increasing follow-up and ensuring proper treatment.

Multidimensional healthcare, such as education, support groups, and patient perspectives, are often featured on social media platforms, such as TikTok. This study aims to examine the quality of existing TikToks as they pertain to sickle cell disease, identify gaps in educational content, assess patient attitudes, and improve the quality of information shared on social media.

Methods:

Using TikTok, researchers searched three different hashtags: #sicklecelldisease, #sicklecellanemia, and #sicklecell, and analyzed the first thirty videos based on interaction, understandability, and content. Exclusion criteria included published videos that were specific to sickle cell trait.

Videos were categorized into six groups based on author type (nurses, doctors, other (healthcare), patient, family, and other (non-healthcare) and video type (i.e., education, point of view, humor, and raising awareness for the disease).

The Global Quality Score and mDISCERN tools were used to evaluate the overall content within the video. The mDISCERN tool has five parameters to determine clarity and reliability. Researchers were asked to agree, scored as 1, or disagree, scored as 0, with each parameter. A maximum score for each video is five and a minimum score of zero. The Global Quality Score has five statements ranging from low video quality/not beneficial to excellent quality and information flow. It is graded on a 5-point Likert scale with 1 being the minimum and 5 the maximum. Three researchers were tasked to review each video and their GQS and mDISCERN scores were averaged together.

Results:

Among the videos analyzed (n = 90), the most common author type was patients, making up approximately 57.8% (n = 52) of the total. Regarding the type of video, the overwhelming majority of the videos were educational, 42.2% (n = 38) of the total, followed by patient perspective (38.9%, n = 35), humor (14.4%, n = 13), and raising awareness (13.3%, n = 12).

For analysis, videos were categorized into two groups based on author type, healthcare and non-healthcare. In the healthcare group, authors were sub-divided as doctor, nurse, other (healthcare professional), and in the non-healthcare group, authors were sub-divided as patient, family of patient, and other (non-healthcare professional). The average GQS score for the healthcare group was 3.08 and for the non-healthcare group was 1.96 (p < 0.001). The average mDISCERN score for the healthcare group was 2.66 and for the non-healthcare group was 1.49 (p < 0.001). Analysis is limited by small sample size.

Discussion:

Our study found that most content on TikTok surrounding sickle cell disease aims to be educational, and the majority of the content is created by patients themselves. However, the educational videos created by healthcare professionals were more accurate and reliable based on both GQS and mDISCERN scores. The content created by non-healthcare professionals was of lower quality, with less clarity and decreased flow of information. Therefore, it is important for sickle cell disease patients who are seeking health information to speak to healthcare professionals directly or seek content created by healthcare professionals. Professional engagement in digital media may also help improve patient education. TikTok videos created by non-healthcare professionals on the topic of sickle cell disease are more strongly suited for building community and fostering patient-to-patient support.