Journey PRO’s is a clinical research app designed to better understand patients with chronic anemia, specifically as a result of beta thalassemia (BT), myelodysplastic syndrome or myelofibrosis. The goals of this project were to:
Gain insight into the lived experience and understand factors that impacted quality of life for people with chronic anemia, specifically as these relate to the blood transfusion cycle.
Provide a tool that allows participants to visually map their story over time and to gain insights into their unique experience with chronic anemia.
Give clinical researchers data that is aligned with the lived experiences of people living with chronic anemia.
Provide researchers with a wealth of data for better understanding chronic anemia including a comprehensive view of participants’ physical and mental health through surveys, mental and physical activities, and lab/transfusion reports.
One user group in particular, BT, gave very vivid and impactful descriptions of the impact the disease had on their daily lives. People have BT their whole lives — it is a part of them. BT requires constant disease management including taking daily medication to control iron levels and scheduling lab work and blood transfusions as frequently as biweekly. Participants talked extensively about the role transfusions had in their quality of life and the ups and downs that resulted from being transfusion-dependent. They described a slow decrease in energy, “week close to infusion behind on everything. Things accumulate due to exhaustion.” As they got closer to their scheduled transfusions and a feeling of ‘filling the tank’ with energy post-transfusion, “day after transfusion is like a car filled with gas.”
Life with chronic anemia is a journey. Some days the path might feel easy. Other days, it might as well be quicksand. On top of it, managing overall health – medications, appointments – can feel like a heavy pack to carry. Journey PRO hopes to smooth the road and lighten the load for people with chronic anemia.
The app helps people see, track, and understand their story of living with chronic anemia through daily check ins that provide a snapshot of participants’ daily health. It also has a system to document and manage key health events such as doctor appointments, lab results, and blood transfusion details. Through weekly physical and mental challenges and surveys participants see how the disease affects their cognitive and physical abilities, and researchers gain new insights into chronic anemia. Sharing stories and details of their experience also provides a way for participants to clearly explain their ups and downs with their healthcare providers and family members. “(Seeing your own stories) would be great for creating an environment about knowing more about my disease history and what is going on with my body/health.”
By addressing the needs of people with chronic anemia, we not only improve the way they manage this condition, but we also provide researchers with valuable data to potentially inform new treatments and research initiatives in this area.