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| ID | Type | Description | Link |
|---|---|---|---|
| NCI-2024-00875 | Registry Identifier | National Cancer Institute Clinical Trials Reporting Program |
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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| AYA Decision-Making Role Assessment | Experimental | Participants will complete an electronic socio-demographic questionnaire followed by a set of hypothetical clinical decision-making scenarios to assess preferred decision-making roles and involvement of healthcare providers and family/friends. Responses will inform understanding of facilitators and barriers to shared decision-making. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Clinical Decision-Making Scenarios and Preferences Assessment | Behavioral | 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. |
| Measure | Description | Time Frame |
|---|---|---|
| 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. | Within 2 weeks of survey link delivery |
| Measure | Description | Time Frame |
|---|---|---|
| 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. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Swathi Alagandula | Contact | 650-725-1976 | drswathi@stanford.edu |
| Name | Affiliation | Role |
|---|---|---|
| Kimberly Pyke-Grimm | Stanford University | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Stanford University | Recruiting | Palo Alto | California | 94304 | United States |
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| ID | Term |
|---|---|
| D000294 | Adolescent Behavior |
| D009369 | Neoplasms |
| ID | Term |
|---|---|
| D001519 | Behavior |
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| 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. | 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. | At time of interview, within 4 weeks of survey completion |