Educational and Emotional Needs of Patients with Myelodysplastic Syndromes: An AI Analysis of Multi-Country Social Media

Abstract

Introduction Myelodysplastic syndromes (MDS) comprise a heterogeneous group of myeloid malignancies characterized by high symptom burden and limited treatment options. A central challenge to caring for patients with MDS is assessing their needs throughout the different phases of the disease. Patients and caregivers frequently consult online sources to address informational and emotional support needs. Methods We conducted a social listening analysis of publicly available online forums to identify unmet needs of patients with MDS and their caregivers in the USA, the UK, Spain, Canada, France, and China. We used artificial intelligence (AI) and natural language processing (NLP) to group categories of posts into seven overarching motivations for online engagement (Clinical, Emotional, Treatments, Transplant, Education and Logistics, Physical, and Diet and Lifestyle). Results Posts from the USA and China commonly discussed clinical topics such as MDS diagnosis, disease monitoring, and progression. Posts from Canada and France were frequently about treatments and treatment options. Emotional concerns were key drivers of posts from Canada, Spain, and the UK. Additionally, we also identified topics associated with negative language at key phases during the treatment experience where patients and caregivers exhibited increased online engagement, revealing educational and emotional support gaps at the time of diagnosis, when patients are deciding between treatment options, and when treatment options fail. Conclusion In this research, based on social media listening analyzed using AI and NLP, potential information gaps and unmet needs among patients with MDS were identified. Addressing these gaps through targeted patient education and guidance to emotional support options during these phases could reduce the disease burden and emotional distress experienced by patients with MDS.

Experiences and Support Needs of Caregivers of Patients with Higher-Risk Myelodysplastic Syndrome via Online Bulletin Board in the USA, Canada and UK

“…This stress was amplified when HCPs were perceived to lack knowledge/expertise about MDS, resulting in an additional burden to patients and caregivers as they sought more appropriate care. Additionally, the incomplete picture of MDS provided by clinicians to patients and their families often leads to online information and emotional seeking behaviour [ 32 ].…”

“…Pressures on HCPs and their availability to spend time with patients may be more challenging in the UK healthcare system, especially in smaller and non-specialist healthcare settings. A multicountry social healthcare listening research conducted to identify why patients with MDS and their caregivers go online identified that the highest motivator in the UK was emotional topics (vs clinical topics in the USA and treatment topics in Canada) [ 32 ]. This research suggests a need for more emotional support for UK patients/caregivers, which is not being met by HCP interactions or within their care setting.…”

Perception of cure in prostate cancer: human-led and artificial intelligence-assisted landscape review and linguistic analysis of literature, social media and policy documents

“…Social media can inform on the perception of medical information by patients, caregivers and patient advocates who seek additional support or information that is not shared during medical visits. 6 Analysis of social media can identify the gaps in educational and support programmes or misalignment between patients’ and HCPs’ perspectives and expectations from their disease experience. However, capturing patients’ voice in social media with traditional methods, such as statistical analysis, visualisation or systematic reviews, is challenging because data in social media are unstructured.…”