Educational Tools for the Improvement of Early Advance Care Planning in Adolescents and Young Adults With Advanced Solid Tumors and High-Grade Brain Tumors

Empowerment Through Preparedness: Improving Advance Care Planning (ACP) in Adolescents and Young Adults (AYAs) With Advanced Solid Malignancies and High-Grade Brain Tumors

This clinical trial studies whether educational tools work to improve early advance care planning (ACP) in adolescents and young adults (AYAs) with solid tumors that may have spread from where they first started to nearby tissue, lymph nodes, or distant parts of the body (advanced) and high-grade brain tumors. The incidence of AYA cancers is on the rise with approximately 90,000 new diagnoses yearly in the United States. Cancer remains the leading cause of disease-related death among AYAs, which could be due to patients having more advanced disease at presentation. It is recommended that AYAs begin ACP conversations at the start of treatment. ACP includes clarifying goals of care, discussions about end-of-life preferences, and completing a legal document that states the treatment or care a person wishes to receive or not receive if they become unable to make medical decisions (advance directive). The educational tools in this study include an early ACP educational video featuring AYAs with cancer and an ACP appointment geared for AYAs. Patients can access and watch the educational video at home prior to their scheduled ACP appointment. During the ACP appointment, a tailored ACP guide made specifically for AYAs is reviewed and questions regarding ACP are answered. This may help to introduce the importance of key ACP concepts, which may improve early ACP in AYAs with advanced solid tumors and high-grade brain tumors.

Inclusion Criteria:

• Age 18-39 at initial cancer diagnosis

  • Patient <18 years of age are not included in this pilot as Mayo Clinic in Arizona (MCA) does not treat pediatric patients

• Recently diagnosed (defined as 12 months or less from initial diagnosis or advance stage relapse) with either a stage III/IV solid malignancy or high-grade brain tumor. This includes patients who have stage III/IV recurrence of previously stage I/II solid malignancy

• Actively receiving primary oncologic care at Mayo Clinic Arizona

• Able to read, understand, and speak English

• Those who have completed prior advanced directive documents are still eligible to participate.

Exclusion Criteria:

• Age < 18 or > 39 at initial cancer diagnosis
• Diagnosed with stage I/II solid malignancy, low-grade brain tumor, or hematologic malignancy
• Not receiving primary oncologic care at Mayo Clinic Arizona
• Unable to read, understand, and speak English
• Patients > 12 months from initial diagnosis or advanced stage relapses, in survivorship or on hospice
• No internet or computer/smart phone access