Over the past couple years, we have learned where our gaps and disparities are for patients/caregivers/families with arterial tortuosity syndrome (ATS). A new ophthalmology finding will affect everyone with ATS, but we need to address several gaps: for example, what quantifies how severe each case will be, what treatments are available, and what support is available for patients/siblings/families. We would also like to increase our understanding of patient-centered outcomes research (PCOR)/comparative effectiveness research (CER), and what new PCOR/CER we can implement. We would like to create PCOR/CER initiatives related to carrier- and gastroenterology-related findings that have not yet been addressed.
Our solution is to host roundtable discussions, breakout sessions, and traditional speaker agendas to further develop patient support and education, create a better understanding of the complex new medical findings, and create and facilitate PCOR/CER initiatives. These activities will be planned and attended by patients and caregivers and other stakeholders. This symposium is planned to be hosted in Tulsa, Oklahoma, in a conference room–type environment. A conference planning committee of patients and stakeholders will further develop the identified gaps and disparities and help create topics for PCOR/CER. The committee will meet by conference call several months before the conference, then bimonthly two months before. The committee will meet after the conference to discuss the findings and determine the best ways to disseminate our outcomes. We will also film the different sessions and discussions, as well as allow ATS patients and stakeholders to tell their stories and use the footage for additional educational and support materials in the future.
The projected outcomes include engaging patients, families, and other stakeholders in PCOR training so that they are better prepared to understand the ATS challenges and be better prepared to participate in PCOR/CER. We hope to better understand the impact of the new medical findings on daily life, treatment options, and additional supports that are available for patients. For example, we want to determine the best time for patients to be seen in a low-vision clinic, have orientation/mobility evaluations, and start learning braille; what adaptive technologies are available. We will determine what research is needed to evaluate patients with gastroenterology issues, determine how prevalent it is, and how to address it.
Our project collaborators will be patients/caregivers/family members, a PCORI ambassador, physicians and researchers interested and specialized in ATS, industry leaders, professionals from low-vision clinics, and other key stakeholders.