Survey results show that 79% of adults with T1D and 83% of caregivers of children under 18 with T1D feel overwhelmed and unprepared when they first learn of their or their loved one's T1D diagnosis. It has been shown that the way I live my life has changed because I felt that way.
68% of adults with T1D who did not get tested said they regret not getting an autoantibody test to better understand their risk of developing T1D.
San Mateo, California, June 5, 2024 /PRNewswire/ — A new research study titled “The Cost of Not Knowing” by Beyond Type 1, a mission-driven organization that helps people with diabetes survive and thrive, explores the impact of a type 1 diabetes (T1D) diagnosis in adults. is being quantified. Aimed at parents of children 18 years and older with T1D and children under 18 years of age with T1D, it focuses on emotional, social, and financial health. Most notably, 68% of adults with T1D who were not screened regretted not getting autoantibody testing earlier to understand their risk of developing the disease. This finding is particularly distressing considering that nearly nine in 10 (88%) required emergency treatment for T1D symptoms before or during diagnosis. “The Cost of Not Knowing” was commissioned by Sanofi US.
“Working at organizations on the front lines of T1D awareness, we constantly hear from adults with T1D and their caregivers about the significant and often invisible toll that an unexpected diagnosis can take.” said. christian hurleySenior Vice President of Programs, Advocacy, and Health Equity at Beyond Type 1. The Cost of Not Knowing pulls back the curtain on these significant impacts and highlights the value of early detection for a person's economic, social and emotional health. ”
The cost of diagnosis
Our findings show that not knowing about the risk of developing T1D comes at a cost, including significant emotional, social, and financial burdens.
- Emotional: 64% of adults with T1D say their mental health deteriorated when they were first diagnosed. 61% who experienced emotions such as sadness, fear, anger and anxiety at the time of diagnosis said these feelings would have been reduced if they had known about their risk sooner.
- Socializing: Nearly nine in 10 caregivers (87%) abandoned some of their interests or future plans when they learned of their loved one's diagnosis. This is also true for 71% of adults with T1D when they learn of their diagnosis.
- Finance: Half (50%) of adults with T1D have at least $5,000 Almost one in four (24%) received at least one emergency treatment for T1D symptoms before or during diagnosis. $10,000.
The need to “know”
For both adults with T1D and their caregivers, early detection has a particularly clear impact on their lives. Specifically, 79% of adults with T1D and 83% of caregivers changed the way they lived their lives when they first learned of their loved one's T1D diagnosis because they felt overwhelmed and unprepared. But 85% of people with T1D say their lives might have been different if they had been tested and known about their diagnosis sooner, and more than one in three (34%) would have felt more in control of their health. 28% said they could have felt more prepared, 28% said they could have had more time to prepare, and 20% said they could have avoided the stress of not knowing. did.
Usher, an award-winning singer, songwriter, actor, entrepreneur, and philanthropist, has experienced first-hand the weight of a diagnosis through the eyes of a parent after his own child was diagnosed at the age of six, and has been inspired by it. Since then, he has loudly advocated the importance of early treatment. T1D screening. Sanofi has hired USHER as spokesperson for the 1 Pledge Campaign. He is a spokesperson for “The Price of Not Knowing” and is part of a contingent scheduled to speak to lawmakers on Capitol Hill about the importance of early testing.
“As the parent of a child with T1D, I deeply understand how this diagnosis can turn your world upside down in an instant,” said USHER. “As part of our family journey, I wish I had known about the availability of early testing and how it can help us prepare for the future. That's why I believe so strongly in the importance of these discoveries and am excited to use my voice and platform to encourage people to get tested early for T1D. I'm passionate about it. ”
Today is over 1.45 One million people in the United States have T1D. T1D is an autoimmune disease in which the immune system attacks insulin-producing cells in the pancreas. T1D can occur in anyone at any age. ~90% None of those diagnosed have a family history. However, for many individuals and their families, a T1D diagnosis is a complete shock, and many find out about their condition after experiencing severe symptoms in an emergency situation. Although screening for T1D autoantibodies can indicate the risk of developing T1D autoantibodies before symptoms appear, this study confirms that screening remains uncommon and emphasizes the urgency of this new research. The importance of early screening was emphasized.
Perceived barriers to access
Although early detection is critical, autoantibody screening remains uncommon. This is mainly due to awareness and awareness of access barriers. Only 14% of adults with T1D said they had undergone an autoantibody test before diagnosis, given that 72% of adults who did not undergo screening had no idea that autoantibody screening was available. please. Of those who knew, 40% said their insurance would not cover the cost and 28% said their health care provider did not provide the cost. Still, 92% of adults with T1D and 96% of their caregivers say they would recommend that their friends and family get an early T1D autoantibody test to understand their risk of developing T1D.
Beyond Type 1 and USHER plan to share more about these findings at an upcoming summit. Washington DC above June 12thsponsored by Sanofi.
The key points of “The Price of Not Knowing” are: https://beyondtype1.org/type-1-diabetes-news.
USHER is a paid spokesperson for Sanofi.
Research method
This study was conducted by Wakefield Research (www.wakefieldresearch.com) conducted through two survey instruments – one among 1,000 U.S. adults with type 1 diabetes and the other among 1,000 U.S. caregivers of children under age 18 with type 1 diabetes. Ta. From March 15th to March 29th, 2024using email invitations and online surveys.
Results for any sample may vary due to sampling. The magnitude of variation is measurable and is influenced by the number of interviews and the level of percentages representing the results. For the interviews conducted in this particular study, there is a 95 in 100 chance that the findings do not differ, positively or negatively, by more than 3.1 percentage points from the results obtained if all participants were interviewed. The universe represented by samples. The distribution of key demographic characteristics of both audiences, such as gender and age, was monitored during data collection to be consistent with available information provided by the CDC and NIH.
About Beyond Type 1
Founded in 2015, Beyond Type 1 is a global nonprofit organization dedicated to the diabetes community. With a mission to help people living with diabetes thrive and thrive, the organization serves the largest digital audience of any diabetes nonprofit. Through peer support programs, global campaigns, and digital platforms, Beyond Type 1 unites the global diabetes community across all types of diabetes and helps transform what it means to live with a chronic disease. In 2019, the organization launched the Beyond Type 2 community, dedicated to people living with type 2 diabetes. For more information, please visit: beyondtype1.org or beyondtype2.org.
About Wakefield Research
Wakefield Research is a leading independent provider of quantitative, qualitative, and hybrid market research for thought leadership and strategic insight. Wakefield Research is a partner of the world's leading brands and agencies, including 50 of the Fortune 100 companies. We conduct research in approximately 100 countries and our research is regularly published in leading media outlets. Click here for more information. www.wakefieldresearch.com.
Contact: Oluwatna Campbell [email protected]
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