Understanding the current discourse Myeloproliferative Neoplasms (MPNs) online.
More specifically:
We extracted around 1.2M search data points, 1000 Tik Tok videos,4000 tweets, and 4000 Reddit posts within the geography of the US from June 2021 to May 2023, using curated keywords and hashtags.
Using our proprietary in-house AI text classification model, we were able to classify the list of keywords into different themes based on each stage of a MPN patient’s journey. These were then sized to find out where bulk of the searches belonged to.
Using unsupervised machine learning, our proprietary in-house AI clustered linguistically related inputs into concept clusters. Our team of analysts then interpreted these clusters, teasing out nuanced discourses on the topic.
Finally, from studying the discourses, we picked apart key themes and attitudes, combined data points with other relevant information surfaced during our research, and synthesized the findings into this report.
Poorer quality of life
MPNs cause various physical symptoms, which greatly affect patients' quality of life leading to more stress and anxiety.
Lack of answers and offline
Limited understanding of their condition, such as frustrations with inaccurate or conflicting online information.
Unsure of causes of MPNs
Patients with MPNs express frustration over the lack of clear answers regarding the symptoms or causes of MPNs.
Unaware of support groups, resources
Patients face difficulties in engaging with support groups and online communities, causing feelings of isolation and distress.
Alternative meds and Jakafi efficacy
Patients expressed struggles and frustrations with the efficacy of their treatments, leading to the exploration of alternative approaches.
Limited knowledge of anemia and MPNs
Patients with MPNs have a limited understanding of the connection between anemia and their condition.
Complexities of adverse effects
Complexity of MPNs can leave patients feeling uncertain and overwhelmed by the multitude of treatments and their potential adverse effects.
Positive outcome of clinical trials
Patients participating in Jakafi clinical trials have experienced cost savings, improved quality of life, and satisfaction with the drug's efficacy.
Differentiation And Efficacy Of Jak Inhibitors
HCPs demonstrate their understanding of benefits offered by each inhibitor in specific clinical scenarios.
Different Moas Of Jak Inhibitors
Knowledge gap is evident in online discussions where HCPs often rely on sharing speeches or research and studies from other specialists.
Lack Of Conversations Online On Toxicity Profiles
Majority of posts on this topic were shared by research institutes or online medical pages, on understanding, managing, and accounting for the differences in toxicity profiles.
Challenges And Possibilities Of Disease Modification
Disease modification is a topic of great interest among HCPs, despite the belief that it remains an elusive goal.
Various Practices In Monitoring Jak2 V617F
HCPs follow various practices in monitoring JAK2 VAF. At the same time, there is ongoing research that explores the potential of JAK2 VAF as a marker for disease progression.
Ongoing Studies Exploring Inflammatory Pathways
MPN specialists are investigating JAK-STAT-independent pathways, such as IRAK1 and ROCK, which play roles in MF inflammation.
The discourse surrounding alternative medications and the efficacy of Jakafi, as well as the complexities of adverse effects, are the dominant topics of searches, accounting for 35% and 25% respectively. While their growth has been modest, it emphasizes the importance of addressing and managing the adverse effects of MPN treatments, and finding the most effective treatment options.
Furthermore, the fastest-growing discourse themes are the lack of answers online and offline, as well as the unawareness of support groups and resources, with growth rates of +28% and +64% respectively. This signifies a sense of urgency among patients to seek answers to their pressing questions regarding various aspects of managing their conditions.
MPNs presents patients with a range of physical symptoms that significantly impact their quality of life, which can include fatigue, weakness, shortness of breath, unexpected bruising, swelling in joints, bone pain, itching and night sweats.
Based on patients’ personal recounts, fatigue, weakness and pain seem to cause the greatest challenges to their daily lives, since it significantly affects their ability to perform everyday tasks such as work or engaging in social activities.
This subsequently affects their mental wellbeing, leading to increased level of stress and anxiety.
Patients with MPNs express concerns about the limited understanding of their condition, especially uncertainties about its progression. During consultations, many encounter doctors who are unfamiliar with the disease and hesitant to provide necessary diagnostic tests. Difficulties in booking appointments with MPN specialists or obtaining referrals further exacerbate these challenges.
When seeking information online, patients become frustrated with the lack of accurate and up-to-date resources, often encountering conflicting information that adds to their confusion and uncertainty.
As patients discuss the various symptoms they experience, they are frustrated over the lack of clear answers of these symptoms, their causes and connections to MPNs.
These patients have varying beliefs about MPN causes. While most attribute it to genetic factors and family history, others also speculated about possibilities of exposure to chemical toxins, viral infections or autoimmune factors.
Due to the complexity and rarity of MPNs, there are still many uncertainties about their specific causes. Patients acknowledge that the exact factors leading to their conditions remain unknown or poorly understood.
Patients diagnosed with MPNs often face challenges in finding and connecting with support groups and online communities tailored to their specific condition, which can contribute to feelings of isolation and distress.
This lack of awareness stems from various factors, including the rarity of MPNs and limited visibility of support networks. Additionally, the complexity of the condition often shifts the focus of patients towards seeking immediate relief rather than connecting with others online.
Younger patients may also struggle to find relatable content online, as the majority of available resources cater to an older demographic.
There were a number of conversations that underscored patient struggles and frustrations with treatment, particularly when it comes to its efficacy.
Many patients experienced positive symptom relief while using Jakafi; however, they faced difficulties in regulating platelet levels and observed diminishing effectiveness over time.
Consequently, patients and their healthcare providers explored alternative approaches, including the introduction of additional medications like Hydroxyurea and Aspirin, or switching to alternative therapies such as Pegasys or Besremi.
Patients possess a modest understanding of anemia and its connection to MPNs. Despite conducting their own research around their abnormal test results such as anemia or iron deficiency, enlarged spleen and liver, and peripheral blood smear abnormalities, they still lack clarity regarding the relationship between these findings and MPNs.
When sharing their concerns with healthcare providers, responses vary, with many dismissing the possibilities due to rarity or deviations from typical patterns.
Nevertheless, there is a recognition that specific MPN treatments may intentionally induce mild anemia to regulate cell production.
Managing MPN treatments involves various strategies to address symptoms and side effects, such as starting with a lower dose and gradually increasing it to achieve optimal results, or regular monitoring of spleen size and maintaining hematocrit levels below 45.
When encountering side effects like ocular migraines, or ice-pick headaches, switching to alternative medications such as Pegasys can potentially reduce their frequency and severity. Aspirin is also mentioned as a potential option for symptom management, although its effectiveness may vary.
Given the intricate nature of the condition, many patients can still feel uncertain and overwhelmed by the various treatments and their potential adverse effects.
Patients participating in Jakafi clinical trials have highlighted the significant benefit of not having to bear the high medical costs associated with the medication, unlike cheaper alternatives such as Hydroxyurea.
These trials have resulted in notable improvements in patients' quality of life, particularly in reducing fatigue caused by their conditions. Participants have expressed satisfaction with Jakafi's efficacy in managing MPN symptoms, as they were spared from dealing with placebos or unknown side effects during the trial.
Consequently, many of these patients have continued using Jakafi as a commercially available drug.
HCPs' online discussions regarding the efficacy of JAK inhibitors for MPNs demonstrate their understanding of the distinct benefits offered by each inhibitor in specific clinical scenarios.
They acknowledge the clinical use and effectiveness of various JAK inhibitors, including ruxolitinib, fedratinib, pacritinib, and momelotinib. This indicates the HCPs' awareness of these inhibitors and their respective applications in treating MPNs.
Furthermore, these discussions highlight essential properties of the inhibitors, such as potency, unique erythroid colony formation sparing, and suitability for specific patient populations with varying baseline conditions.
The inclusion of these details signifies the HCPs' knowledge regarding the characteristics and distinctions among these JAK inhibitors.
It is also noteworthy that these HCPs are MPN specialists.
It has been observed that a significant number of HCPs may not possess a complete understanding of the various MOAs of JAK inhibitors. This knowledge gap is evident in online discussions where HCPs often rely on sharing studies or speeches from other specialists who have conducted extensive research on the topic.
Within these online conversations, HCPs frequently exchange information and resources, such as research studies or presentations, to enhance their understanding of the MOAs of JAK inhibitors. They rely on the expertise and findings of specialists who have delved deeper into the subject matter, with insights into MOAs of different JAK inhibitors, their clinical activities, and symptomatic improvements.
Online conversations among healthcare professionals regarding the toxicity profiles of different interferons, such as Pegasys and Besremi, were limited. The majority of posts on this topic were shared by research institutes or online medical pages. These posts aimed to provide information and insights into understanding, managing, and accounting for the differences in toxicity profiles.
The scarcity of conversations among healthcare professionals may suggest a potential lack of knowledge or hesitation to actively engage in online discussions about the topic. This could indicate that healthcare professionals may not have extensively explored or shared their experiences and perspectives regarding the toxicity profiles of various interferons.
Healthcare professionals have varying levels of knowledge and beliefs regarding disease modification. Some are actively discussing and exploring the potential of disease modification in MF, as evidenced by discussions on the use of Navitoclax and Ruxolitinib combination therapy to achieve JAK2 VAF reduction and bone marrow fibrosis improvement.
Conversations also indicates that disease modification is a topic of interest among healthcare professionals working with MPN patients, as evidenced by discussions at conferences and on social media platforms. However, many belief that achieving disease modification remains an elusive goal in the field of MPN treatment.
Furthermore, the passage highlights the importance of biomarker changes and bone marrow biopsies in assessing disease modification in MF and PV. It indicates that the field of treatment for ET and PV is moving towards disease modification, emphasizing the significance of bone marrow biopsies during diagnosis investigations.
Based on conversation and posts online, healthcare professionals follow various practices for monitoring JAK2 VAF (V617F allele burden) in myelofibrosis and polycythemia vera.
These practices include early referral for consultation, assessing JAK2 inhibition response despite cytopenia, molecular monitoring for bone marrow transplant response and relapse, utilizing donor lymphocyte infusion, evaluating spleen size and thrombosis, and actively participating in comprehensive patient care.
Additionally, ongoing research explores the potential of JAK2 VAF as a marker for disease progression, while alternative biomarkers are being investigated to enhance monitoring and management of these conditions.
Based on online conversations, MPN specialists understand that chronic inflammation is observed in myelofibrosis and that it is a complex phenomenon. Inflammatory signals become more aggressive, while anti-inflammatory responses malfunction, contributing to the heterogeneous nature of the disease.
Key inflammatory cytokines and the JAK-STAT inflammatory pathway are involved, but targeting only one pathway may not be sufficient. Doctors are investigating JAK-STAT-independent pathways, such as IRAK1 and ROCK, which play roles in MF inflammation.
Understanding these immune system dysfunctions, including independent inflammatory pathways, is crucial for uncovering the source of disease pathogenesis and developing targeted treatments.
Closing information gaps
There is a lack in awareness, information, and knowledge among patients regarding MPNs such as PV and MF. This includes areas such as understanding the causes, disease progression, available treatments, potential side effects, and associations with other diseases.
Unfortunately, due to the rarity of these conditions, many patients are unaware of the support and resources available to them for finding the help and care they need.
Reliable and effective medical services
Patients with MPNs often struggle to find reliable medical services from healthcare professionals. Many doctors may lack the necessary knowledge and expertise in testing and treating MPNs. Patients often encounter challenges in getting appointments and obtaining referrals for MPN specialists
In addition to these challenges, patients require dependable doctors who can monitor their hematocrit levels or platelet levels and provide recommendations for alternative treatments and medications. This becomes crucial when patients experience diminishing efficacy or encounter side effects from their current medicines.
Resources, care and support for patients
Patients with MPNs not only endure challenging physical symptoms that significantly affects their quality of life, but also negative impacts on their mental well-being, including frustration, fear, and anxiety.
Unfortunately, they face difficulties in finding resources and support groups to effectively manage these issues.
.svg)
.png){kind=spacer}
