Acceleration Point Releases Study on Cushing’s Syndrome Patient Journey at ISPOR

Key Takeaways

• Acceleration Point presented Exploring Rare Disease Landscape Using Social Media Listening to Assess Patient Voices at ISPOR 2024 in Atlanta, Georgia.
• The study applied patient social listening to the Cushing's Syndrome patient journey, focusing on quality of life, HCP and peer support, delayed diagnosis, missed diagnosis, and caregiver support.
• Among patients with a Cushing's Syndrome diagnosis, 16% expressed apprehension about treatment and surgery, and many turned to online communities for guidance.
• Cushing's Syndrome is a rare endocrine disorder, with endogenous cases estimated at roughly 2 to 8 per million people each year, which limits the published real-world patient data available to Medical Affairs teams.
• Social media listening can complement clinical evidence by surfacing patient perspectives in rare diseases where structured data collection is difficult.

What is Cushing's Syndrome?

Cushing's Syndrome is a rare endocrine disorder caused by prolonged exposure to elevated cortisol levels. Endogenous cases are uncommon, estimated at roughly 2 to 8 per million people each year, which is one reason published real-world patient data for the condition has historically been limited.

Acceleration Point presented the study Exploring Rare Disease Landscape Using Social Media Listening to Assess Patient Voices at ISPOR 2024 in Atlanta, Georgia.

The study applied patient social listening to examine the patient journey for Cushing's Syndrome (CS), with a focus on unmet patient concerns including quality of life, HCP and peer support, delayed diagnosis, missed diagnosis, and caregiver support.

"As a company dedicated to revolutionizing insight generation for medical affairs teams, I am immensely proud of our team's unwavering commitment to empowering our customers with valuable patient insights," said Acceleration Point SVP Jeff Buchanan. "Historically, obtaining real-world, patient-focused insights has been both time-consuming and challenging, yet it remains crucial. By harnessing social media data, we enable our customers to better understand patients' challenges in diagnosis, treatment, and overall quality of life. Demonstrating this capability in diseases like Cushing's Syndrome provides access to insights where published patient data falls short."

The study found that social media listening can surface meaningful patient perspectives, particularly in rare diseases where structured data collection is difficult. Among patients who had received a Cushing's Syndrome diagnosis, 16% expressed apprehension regarding treatment and surgery, with many turning to online communities for information on navigating their condition. The study also identifies patient-focused information gaps and offers recommendations for improving patient-HCP relationships.

Why it matters for Medical Affairs teams

For Medical Affairs teams, this work points to a practical use of social media listening to better understand rare disease patients: a complementary source of real-world context that sits alongside clinical evidence rather than replacing it. In diseases with limited published patient data, social listening at medical congresses and in online patient communities can help close gaps in understanding that traditional data collection cannot reach.

For more information about this study, connect with our team.

Frequently Asked Questions

What did Acceleration Point study at ISPOR 2024?
Acceleration Point presented Exploring Rare Disease Landscape Using Social Media Listening to Assess Patient Voices at ISPOR 2024 in Atlanta, Georgia. The study used patient social listening to map the Cushing's Syndrome patient journey, including quality of life, HCP and peer support, delayed and missed diagnosis, and caregiver support.

What is Cushing's Syndrome?
Cushing's Syndrome is a rare endocrine disorder caused by prolonged exposure to elevated cortisol levels. Endogenous cases are uncommon, estimated at roughly 2 to 8 per million people each year, which limits the published real-world patient data available to researchers and Medical Affairs teams.

How can social media listening help Medical Affairs teams understand rare disease patients?
Social media listening surfaces patient perspectives from online communities where people discuss diagnosis, treatment, and quality of life. In rare diseases, where structured data collection is difficult, it offers a complementary source of real-world context alongside clinical evidence. In Acceleration Point's Cushing's Syndrome study, 16% of diagnosed patients expressed apprehension about treatment and surgery, and many turned to online communities for guidance.

Further Reading:

• Why Social Media Listening Enhances Medical Affairs' Understanding of Rare Disease Patients → https://www.accelerationpoint.com/resources/social-media-listening-enhances-medical-affairs-understanding-of-rare-disease-patients/
• Mapping the Modern Patient Journey Through Social Listening → https://www.accelerationpoint.com/resources/patient-journey-social-listening/
• Patient Social Listening for Patient-Centric Medical Affairs → https://www.accelerationpoint.com/resources/empowering-medical-affairs-through-patient-social-listening/