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

Mayo Clinic50 enrolled

Overview

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.

Study Type

INTERVENTIONAL

Allocation

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

Conditions

Advanced Malignant Solid Neoplasm

Eligibility

Sex: ALLMin age: 18 YearsMax age: 39 Years

Medical Language ↔ Plain English

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 advance 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

Outcomes

Primary Outcomes

Feasibility of implementing routine, early Advance Care Planning (ACP)

Feasibility is achieved if 60% of participants can complete the baseline survey, view the pre-appointment educational video, and attend the hour-long ACP appointment. Baseline survey completion will be defined as answering at least 80% of the survey questions. Video viewing will be assessed via a single yes/no survey item presented after the video. Results will be analyzed descriptively.

Time frame: Up to 1 year

Satisfaction with each intervention component (Acceptability)

Acceptability is defined as majority satisfaction with each intervention component. Participants will be asked to rate their experience with the educational ACP video and ACP appointment on a 4-point Likert scale (e.g., very helpful, somewhat helpful, a little helpful, not helpful) using 4 questions regarding each intervention's usefulness and recommendations to peers. Higher scores indicate greater satisfaction and/or greater likelihood of recommending to peers. Descriptive statistics will be utilized to broadly analyze the sample.

Time frame: Up to 1 year

Secondary Outcomes

Advance directive completion rates

Assess by review of medical record to determine whether there was an increase in advance directive completion rates within the electronic medical record, as compared to historical institutional records (control). Descriptive statistics will be utilized to broadly analyze the sample.

Time frame: Up to 1 year

Change in ACP readiness

Assessed using 4 validated multiple-choice questions. Scores range from 0-20, with higher scores indicating increased readiness. In patients indicating that they signed official advance directive paperwork, an additional yes/no question will be asked to assess if any updates were made to advance directive documents (i.e. living will or surrogate decision maker/medical power of attorney) since that time. A mixed linear effect model will be used to analyze longitudinal changes.

Time frame: Baseline; 4 months; 7 months

Change in ACP anxiety

Assessed using a single question on a 4-point Likert scale. A mixed linear effect model will be used to analyze longitudinal changes.

Time frame: Baseline; 4 months; 7 months

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

Overview

Conditions

Interventions

Eligibility

Locations (1)

Outcomes

Primary Outcomes

Secondary Outcomes

Central Contacts