- Cancer survivors need high levels of patient engagement and education in order to continue to manage their care, mitigate any lingering treatment effects, and prevent relapse. However, patient engagement often falls short for adolescent and young adult (AYA) cancer survivors, who have a unique set of post-cancer care needs.
According to a recent case study published in the Journal of Medical Internet Research, age-specific programs that foster better patient and clinician education and communication can help these patients better navigate their post-cancer care.
AYA survivors aged 15 to 39 years old tend to have lower survivorship rates than other age groups, and experience unique lifestyle issues such as anxiety, culture shock, and educational setbacks due to their treatment. This specific set of needs requires a targeted approach to help close gaps in cancer survivorship care.
The research team looked at the After Cancer Care ends, Survivorship Starts for Adolescent Young Adults (ACCESS AYA) program at Seton Healthcare Family in Austin, Texas. This program offers educational opportunities for clinicians and caregivers to help them identify the unique issues this age population may face in cancer survivorship.
The program also offers a digital tool for patients geared toward educating them about post-cancer treatment, including information about how to navigate their care plans going forward. Survivors and their families can connect with others who share similar experiences through two-day educational seminars, helping to quell any isolation these patients might feel.
Ultimately, the researchers say that this program works to identify the unique issues this patient population might face. Cancer survivorship is different for teens and young adults compared to young children or older adults, the researchers asserted, and ACCESS AYA aims to address that gap:
Educational emphases include topics such as the management of cancer survivorship and late effects including awareness of concerns for fertility and body image issues; recognition of the unique context of psychosocial growth and development among AYA survivors; assessment of and attention to cognitive, psychiatric, and psychosocial effects and needs; improved transition to off treatment care, including education of community provider; and referral to available age-appropriate information and support services when indicated.
Through a series of qualitative phone interviews with 18 program participants – including clinicians, survivors, and caregivers – the researchers found that ACCESS AYA is a viable option for increasing patient engagement and education amongst clinicians, AYA cancer survivors, and their support systems.
All clinicians involved in the interviews reported positive experiences with the program, stating that it offered useable educational opportunities that would help them interact with and engage their patients better. However, some clinicians did state that the program was not well marketed and that they did not always have the time to attend educational sessions given their workloads.
Patients and families likewise offered positive reviews for ACCESS AYA. Survivors particularly enjoyed the educational materials and the care plan navigation materials.
Equipped with more knowledge and informative resources, patients displayed more self-efficacy when interacting with their providers, fostering better communications and engagement.
Increasing patient education amongst this population also instilled a sense of social advocacy, with several survivors and families reporting a desire to get involved in cancer advocacy on a community level. According to the research team, this further highlights the success of the ACCESS AYA program.
“The survivors’ self-avowed increased social and political awareness and desires for activism is also an indicator of increased self-efficacy,” the research team explained. “An unexpected consequence of the ACCESS AYA programing that emerged as part of the evaluation was the increased desire among AYA survivors to engage in self and community advocacy.”
Going forward, healthcare organizations should consider implementing programs similar to ACCESS AYA to help address the specific concerns of a young adult cancer survivor population.
When healthcare organizations take the time to address the specific needs of unique patient populations, clinicians and caregivers alike can close any engagement and education gaps, helping to improve outcomes and self-efficacy for patients.