Adolescents and Young Adults With Cancer: Their Preferred Involvement in Decision Making

Stanford University100 enrolled

Overview

The purpose of this mixed-methods study is to determine Adolescent and Young Adult (AYAs) decision making preferences post cancer diagnosis using vignettes designed to assess their preferred involvement in decisions about their cancer treatment and variables associated with these treatment decision-making (TDM) preferences.

Study Type

INTERVENTIONAL

Allocation

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

100

Conditions

Adolescent Behavior

Interventions

Clinical Decision-Making Scenarios and Preferences AssessmentBEHAVIORAL

Participants complete a socio-demographic questionnaire and decision-making preferences scale, including hypothetical clinical scenarios, to identify their preferred decision-making role (active, collaborative, or passive) and the influence of providers or family. Delivered electronically via secure link; reminders sent as needed.

Eligibility

Sex: ALLMin age: 15 YearsMax age: 29 YearsHealthy volunteers:

Medical Language ↔ Plain English

Inclusion Criteria: * Age (15-29 years) * Cancer diagnosis and on therapy, end-of-life or survivors (within 1 year) * Speaks English * Reads English * Cognitively and physically able to participate Exclusion Criteria: * Unable to participate in study due to developmental delay or developmental disorder

Locations (1)

Stanford University

Palo Alto, California, United States

RECRUITING

Outcomes

Primary Outcomes

Distribution of Decision-Making Roles in Clinical Scenarios

Proportion of participants who select an active, collaborative, or passive role in hypothetical clinical decision-making scenarios. Each role will be counted and compared across participant subgroups.

Time frame: Within 2 weeks of survey link delivery

Secondary Outcomes

Association Between Sociodemographic Characteristics and Decision-Making Role

This outcome assesses the association between sociodemographic characteristics (e.g., age, race/ethnicity, gender, education level, and employment status) and adolescents' and young adults' preferred treatment decision-making role. Role preference (active, collaborative, or passive) is assessed using the modified Control Preferences Scale. Sociodemographic variables are self-reported via electronic questionnaire. The unit of measure is the chi-square test statistic or ANOVA output, depending on the variable type.

Time frame: At time of electronic survey completion

Concordance Between Interview Responses and Scenario-Based Decision-Making Roles

Proportion of interview responses that align with or differ from role preferences identified in hypothetical scenarios. Qualitative responses will be coded and categorized into roles for comparison.

Time frame: At time of interview, within 4 weeks of survey completion

Correlation Between Healthcare Encounters and Decision-Making Role Preference

This outcome measures the correlation between the number of cancer-related healthcare encounters and adolescents' and young adults' preferred treatment decision-making role. Healthcare encounters will be abstracted from the electronic health record and include clinic visits, procedures, hospitalizations, ICU stays, and emergency department visits. Decision-making role preference (active, collaborative, or passive) will be assessed using the modified Control Preferences Scale. The unit of measure is the Pearson correlation coefficient.

Central Contacts

Swathi Alagandula

CONTACT

650-725-1976 drswathi@stanford.edu

Data from ClinicalTrials.gov

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