Patients with sickle cell disease feel ‘ignored’ during visits with health care providers
Key takeaways:
- Patients with sickle cell disease appear more truthful about symptoms online than during in-person health care visits.
- Social media listening shows a fractured relationship between patients and care providers.
SAN DIEGO — Social media listening can provide clinicians with a novel and valuable method of identifying challenges and unmet needs of patients with sickle cell disease that they otherwise might not share during medical visits.
According to data presented at ASH Annual Meeting and Exposition, social media listening through Instagram, Twitter, YouTube and more gave researchers additional insight into patient and caregiver concerns on topics such as living with sickle cell disease, support, family planning, raising awareness of sickle cell disease and more.
“When I first embarked on this project, I expected to find that when people were seeking medical care that they were having a negative experience, but actually this problem is far greater than that,” Oliver Shastri, MBBS, leader for the rare diseases team at Pfizer UK, told Healio.
“This actually goes into most areas of daily life. I was particularly surprised by that,” Shastri added. “What we’ve learned from the sickle cell community is that they feel that they’re not really being listened to.”
Background and methodology
Sickle cell disease is a life-long hereditary condition affecting approximately 15,000 to 20,000 individuals in the United Kingdom. The disease is associated with reduced life expectancy and worse quality of life, with long-term complications that include high infection rate, stroke, severe anemia and more.
Online conversations between patients with chronic conditions allow researchers and clinicians the opportunity to receive feedback from outside of medical visits that provides insight into patients’ health-related concerns and caregiver experiences.
Researchers conducted a qualitative, netnographic study within the United Kingdom using a search term syntax containing certain disease- and treatment-related keywords, hashtags and relevant website addresses.
Researchers used the third-party social media listening tool TalkWalker to gather all relevant sickle cell disease-related conversations across publicly accessible social media and digital channels during a 12-month historical search.
They assembled a randomized sample from the amassed 45,864 posts with 687,302 engagements (likes, shares, comments, etc) to further isolate posts discussing patient and/or caregiver experience for a more specific dataset. That dataset included 513 posts (1.1% of total amassed data), of which 93% came from patients and 7% from caregivers or other sources.
Results and next steps
AI-powered theme detection in natural language procession and qualitative sentiment analysis grouped the randomized sample of posts into six common themes:
- Experiences with management of sickle cell disease and within the National Health Service in the UK (72.5% of posts: 8.6% positive, 34.1% negative, 57.3% neutral);
- Living with sickle cell disease and understanding the condition (70.8% of posts: 13.2% positive, 41.3% negative, 45.5% neutral);
- The importance of community, support and family planning (60.6% of posts: 19.0% positive, 21.9% negative, 59.2% neutral);
- Understanding the burden of sickle cell disease through accounts over a lifetime (45.4% of posts: 17.6% positive, 26.6% negative, 55.8% neutral);
- Talking about and raising awareness of sickle cell disease (40.9% of posts: 14.3% positive, 17.1% negative, 68.6% neutral); and
- Access to or experiences with treatment (27.1% of posts: 6.5% positive, 29.5% negative, 64.0% neutral).
Researchers observed what they described as “a lack of empathy” from healthcare professionals when seeking treatment for their disease, Shastri said.
They also noted patient reports of pain crises, attempts to understand triggers and underestimation of healthcare professionals of the real-life impact of sickle cell disease, thus leading to symptom dismissal and a stigma associated with a need for painkiller among those with the disease. Another common theme from patients and caregivers highlighted current treatments as unsatisfactory, burdensome and difficult to access.
Patient outcry on social media highlights the current unmet need of satisfactory and easy to access worthwhile treatments for this population, while also shedding light on a current poor relationship between patients with sickle cell disease and healthcare professionals in general when discussing symptoms, according to Shastri.
“For too long, sickle cell patients feel that they’ve been ignored. Hopefully... this type of research and plain language summaries will help us get the message out there that we are listening,” Shastri said. “We realize that, in the past, things haven’t gone to plan, but we are trying to turn the tide on this thing now. There’s a historic distrust of the medical community among this patient population because they are harder to reach and harder to access, but their community nonetheless is very well established, which has led to the online communication being such a strong factor here.”
Collapse
Shastri O, et al. Abstract 1057. Presented at: ASH Annual Meeting and Exhibition; Dec. 9-12, 2023, San Diego.
Read more about