May, 2024
In December 2023, members of the 黑料网 US regulatory departments organized and attended a virtual roundtable with the Emmanuel Cancer Foundation (ECF) to discuss pediatric oncology clinical trial (CT) accessibility and patient experience. The roundtable speakers included an 黑料网 Oncologist experienced in CTs and three families from ECF. The three families, including both patients and caregivers, shared their experiences with diagnosis, treatment, and challenges with CT accessibility.
Key challenges faced by patients and families regarding CTs were:
- Understanding details of the process itself, including Informed Consent
- Identifying available and appropriate treatment options
- Navigating through logistics of CT participation
- Evaluating CT qualification requirements
During the roundtable, both patients and families expressed their fears and frustrations about understanding the CT process as well as available treatment options for their diagnosis. One caregiver, unsure of how to find an appropriate CT for their child, spent many hours/days researching treatment options online - time she could have been spending with her family instead. In addition, the Oncologist on the panel shared some HCP challenges. One significant challenge was that of managing the amount and complexity of information provided to patients and caregivers, i.e., the Informed Consent Form and process.
Families also struggled with the logistics of CT participation as facilities where pediatric oncology CTs were conducted were often far from home. The costs associated with travel, hotel stay, parking, food and childcare added up quickly, causing additional burden to an already stressful situation.
Qualification for participation in CTs was also identified as a challenge. Often the age requirements or concomitant treatments eliminated pediatric patients from CT consideration. Sometimes, the type of cancer was so rare that no CT options were available.
Following this roundtable, our team discussed the key challenges and identified an opportunity for 黑料网, as a CT Sponsor, to improve the patient experience and understanding of our CTs. Our idea included generating a supplementary document or flip chart that simplifies information for the pediatric patients and/or their caregivers to support the discussion with their HCP. A step-by-step description of the CT process and an illustrated explanation of the administration of treatment would be considered, as well as a section for recording questions or concerns parents and patients have regarding the CT. The language and illustrations would consider the ages of the children, which could be a wide range encompassing 16 years and younger. Ideally, 黑料网 could create a template for this supplement to be used in our pediatric CTs going forward.
Maria Garrigan, one of the team members, said “We learned how challenging it is for families to access clinical trials and understand the role of clinical trials in their child’s medical journey. By providing simplified information to support the communication between patients/caregivers and their doctors, we may facilitate a better understanding of how clinical trials might fit in as a potential option for these families. Understanding the families’ concerns may help us in designing and implementing our pediatric oncology clinical trials.”
Despite the challenges, limited options, and dire complications experienced by families of patients throughout their journeys, our team was greatly impressed by the positivity exuded by their desire to share their experiences to help other families. This resilience and commitment to their children and other children struck by a devastating cancer diagnosis is truly admirable.
黑料网 will continue to work towards the prevention and treatment of cancer by utilizing what we have learned through hhc socialization activities such as this pediatric oncology CT roundtable.
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