Supporting Young Adults with Chronic Conditions
Did you know July is Chronic Disease Month? The awareness-raising observance is a timely reminder of the lifestyle strategies we can all implement to prevent and manage our own chronic conditions, no matter our age.
According to the New York State Department of Health, chronic diseases are the primary cause of death and disability in the country. Heart disease, cancer, diabetes, depression, and asthma are just some of the chronic illnesses affecting countless Americans today.
Young Adults and Chronic Disease
In recent years, young adults have been more commonly diagnosed with these conditions, sparking conversation and concern. If you’re a young adult managing a chronic illness, you are certainly not alone.
One study, published in Preventing Chronic Disease, found that 60 percent (representing nearly 44 million) of young adults reported having 1 or more chronic conditions in 2023. Over one-quarter of young adults reported having more than one chronic illness in the same year. From 2013 to 2023, the frequency of chronic conditions diagnosed in young adults increased by 7 percent. Could this increase be the result of environmental effects, improved screenings, or increased self-advocacy efforts among young adults?
Research from the CDC states that obesity, depression, and high cholesterol are the most commonly reported chronic conditions in young adults (age 18-34). Reports of obesity and depression increased significantly in this age group from 2013-2023, respectively increasing in prevalence from 22.1% to 27.3% and from 16.4 to 25.0%. This recent uptick in pervasiveness, combined with attitudes towards healthcare, raises concerns that a greater number of chronic conditions have gone undiagnosed due to unmet needs, lapses in care, or reduced utilization.
Challenges Unique to Young Adults Managing Chronic Conditions
It can be difficult for young adults to manage chronic conditions and trust healthcare resources when they feel that their needs are not being met. For example, in a survey of 217 young individuals with cancer, nearly half indicated that their needs—including information about cancer diagnosis, nutrition, fitness, alternative services, and health insurance— were unmet. The adult healthcare system may be the only available option for young adults, but providers may not know how to approach or respond to their developmental stage. This lack of specialized support for young adults with chronic disease is, without a doubt, discouraging to those who are struggling with symptoms of chronic diseases, whether diagnosed or undiagnosed.
Additionally, the CDC notes that young people have less consistent access to health insurance, making it increasingly difficult to access screenings, follow-ups, and other preventative care or treatment. Many young people also have concerns about confidentiality, says the CDC. The United States healthcare system can be challenging to navigate and becomes even more so for young adults who lack proper support systems, information, and services.
Perhaps due to these insecurities and struggles, young adults experience large lapses in care and are less likely to utilize the healthcare system. Research shows that young adults utilize healthcare at a significantly lower rate than other groups. In a 2009 survey, individuals in the 18 to 24-year age group had the lowest percentage of healthcare utilization, with only 72% having accessed any type of healthcare. In contrast, children aged 0-11, adults aged 45-64, and adults aged 65+ had the highest utilization by percentage, reaching up to 97%. Similarly, the percentage of individuals with mental health conditions who utilize specialty psychiatric services has fallen from 20% of adolescents to 10% of young adults.
This trend is reflected by lapses in care for young adults. One survey found that, of 360 young adults (ages 19-21), more than one quarter of respondents had not visited a cardiologist since having turned 18. Of 900 adults, 42% reported a lapse of care stretching at least three years, with the most common age for this lapse to occur being 20-years old. These breaks in utilization can be dangerous, both for those with chronic health conditions and for those who may be at risk.
In a handful of ways, the healthcare system is currently struggling to support young adults. Concerns about confidentiality, communication, cost, and other issues cause distrust and discomfort for many young adults, making healthcare difficult to access. The evident increase in chronic conditions among young adults demonstrates the need for supportive efforts. To meet the needs of young adults is to provide them with education, information, and resources to enable and encourage them to seek out healthcare professionals.
Resources and Support for Young Adults with Chronic Conditions
Recognizing this need for support and resources, the Long Island Health Collaborative’s chronic disease-focused Core Cluster organized a webpage of curated resources for young adults living with and managing chronic diseases. Intended to empower young adults to take their healthcare into their own hands, the Resource Guide for Young Adults Managing a Chronic Condition contains information about prevention, health literacy, self-advocacy, health equity, health insurance, privacy, and more.
To provide information and support, the following representatives from LIHC member organizations met monthly throughout 2024 to develop the resource guide:
- Annalea Trask, COE Office Program Coordinator, Cancer Prevention In Action, Stony Brook Cancer Center
- Georgette Beal, MHA, Senior Vice President, United Way
- MelRose B. Corley, MBA, Deputy Director of Program Operations, Economic Opportunity Commission of Nassau County, Inc.
- Danielle Craigg, MD, MPH, Medical Program Administrator, Bureau of Compliance/Patient Care Services, Suffolk County Department of Health
- Janet Romeo, Director of Epilepsy Services, Epilepsy Foundation Long Island
- Linda Mermelstein, MD, MPH, Associate Director, Community Outreach and Engagement, Stony Brook Cancer Center
- Lucy Miller, Community Programs Manager, Marketing & Communication, Memorial Sloan Kettering Cancer Center
- Eileen Pillitteri, Program Manager, Maurer Foundation for Breast Health Education
- Alyssa Zohrabian, MPH, Director, Office of Communications, Nassau County Department of Health
- Muriel Donnelly, Vice President of Public Relations and Marketing, Parker Jewish Institute for Health Care and Rehabilitation
- Jennifer Colbert, LCSW-R, Chief Clinical Officer, EPIC Long Island
To access the LIHC’s free Resource Guide for Young Adults Managing a Chronic Disease, click the following link: https://www.lihealthcollab.org/healthy-resources/resources-for-young-adults-with-chronic-conditions