In late 2020, Raymond A. Wood Foundation engaged TREND Community with support of the Craniopharyngioma Survivors Facebook Group to analyze topics discussed in the group to produce the Community Voice Report. The Community Voice Report follows the FDA’s patient input Guidelines for Patient-Focused Drug Development meetings and aims to quantify disease burden, disease management strategies, and possible unmet needs.
According to TREND Community, capturing patient experience data and applying it to the drug development and regulatory process is often lengthy, laborious, and expensive. This can be further complicated for certain rare or emerging diseases. TREND Community provides a solution by analyzing years of real-world experience data shared within social networks to gain valuable insights into the community’s perspective on living with rare disease. These data are de-identified and summarized into a Community Voice Report, which can then lead to Data Explorations and Health Initiatives.
Eugenie Hsu, RAWF board member and craniopharyngioma patient advocate, headed up the engagement and shares her insights into the findings of the report.
Q. What motivated you to initiate this report with TREND?
Eugenie:
Due to the many overlapping phenotypic traits shared with craniopharyngioma, I joined the Prader Willi syndrome (PWS) Facebook group to learn about this “cousin” disorder to my son’s brain tumor. There, I met Maria Picone, mother to a daughter with PWS. Maria shared her story with me in my podcast, Dr. DIY: after joining some online support groups for her daughter’s disease, she was pleasantly surprised to learn a great deal from other caregivers about the management of PWS that she never learned from her daughter’s doctors. This experience made her realize that patients and caregivers possess a collective knowledge that professionals do not have. Her desire to capture and analyze the information shared in these private FB groups inspired her and her husband to start TREND, a digital health web technology company that transforms a social media community’s conversations into quantified data to understand disease burden, disease management strategies, and unmet needs. After learning more about TREND, I thought that it would be interesting and helpful to see what TREND could reveal about craniopharyngioma so I inquired her about doing a Community Voice Report for the craniopharyngioma Facebook group.
Q. What were the main takeaways from the Craniopharyngioma Community Voice Report?
Eugenie:
The Craniopharyngioma Community Voice Report analyzed a total of 16,719 posts, 262,882 comments over a date range between November, 2008 and October, 2020 in a private FB group comprised of 2,811 members. The data are run through TREND’s analytics engine and analysts manually code a sample of the data to validate the algorithms and train the engine to identify deeper insights which then produces a custom Community Voice Report.
Many members discussed the number of years it takes to receive a diagnosis with patients often consulting many physicians before receiving the diagnosis and subsequent treatment. Improving physician education about how to properly diagnosis this brain tumor could reduce lag time to diagnosis and significantly reduce the morbidity of the disease. Notably, even the successful removal of this tumor results in many other problems including the highly demanding task of constantly monitoring many aspects of health. Community members often discussed the daily burdens of having to manage medications, dose changes, fluid intake, urine output, sodium levels, and hormone replacement. It is striking to note how often discussions were related to the burden of needing to constantly monitor so many aspects of health and that these complex medical-management tasks are left to the patients and caregivers. In addition, vision issues, weight gain, and school were often mentioned as topics of conversation.
Q. Did anything surprise you in the report?
Eugenie:
In terms of frequently mentioned words associated with disease burden, after “tumor” and “stress” (which can be taken to mean emotional stress as well as in relationship to the stress hormone), “pain” was the third most mentioned word. “Headache” had its own separate category so I can only surmise that “pain” may include pain other than the headaches that often give the first clues to the existence of the brain tumor. I was surprised by the frequent mention of “pain” (mentioned even more than “tired”, a well-known known and common symptom experienced by many craniopharyngioma patients with hypopituitarism and hypothalamic dysregulation) since it is not often listed as a common symptom of craniopharyngioma and it made me want to better understand its frequent mention: what kinds of pain are experienced by survivors or caregivers?
One topic that seemed to be absent from the report was the topic of psychosocial functioning. I was surprised not to see this topic highlighted in the report since my anecdotal experience with this issue informs me that craniopharyngioma survivors commonly struggle with making friends and relating to their peers.
Another surprising finding was that despite the amount of conversation about weight issues, there was relatively little discussion about diets or food regulation as management techniques. This is indeed a curious finding that may be explained by the existence of other FB groups whose sole focus is on dietary lifestyle management of the weight gain commonly experienced in this brain tumor population.
Q. How can the insights from the Community Voice Report be used to benefit the craniopharyngioma community? What topics needs further investigation?
Eugenie:
The areas highlighted as needing more exploration relate to easing the intense monitoring of the disease for patients and caregivers, improving the management of vision loss and impairment, providing more and better interventions to address weight gain, and understanding and addressing the underlying issues that make school life challenging for the survivor. It would certainly be helpful to understand more details about what conditions require the most intensive monitoring and whether pharmaceutical, procedural, or technological interventions might assist in alleviating the burdens, be they related to vision loss, weight gain, or school-related experiences.
Given the complex and chronic nature of the disease, relatively normal life expectancy of survivors, and the constant monitoring required to manage these conditions, I wonder about longterm survivorship into adulthood, especially for those diagnosed as children. When childhood survivors grow up to become adults, do they manage to live independently, how do they do at managing their chronic conditions, and what is their quality of life? The Community Voice Report is a glimpse into the discussions among craniopharyngioma caregivers and patients; ultimately, a deeper look into this community could help us better understand and address these unmet needs in order to optimize the quality of
life for long term survivors.
Thank you to TREND Community for producing this report and to Eugenie Hsu for spearheading this project.
