Decision-Making Involvement for Young Adults with Cancer

Overseen By Swathi Alagandula

Age: < 65

Sex: Any

Trial Phase: Academic

Sponsor: Stanford University

Disqualifiers: Developmental delay, disorder

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 2

100 Participants Needed

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial aims to understand how young adults with cancer prefer to make treatment decisions. Participants will answer questions about various treatment scenarios to determine their desired level of involvement from healthcare providers, family, and friends. The goal is to identify factors that help or hinder shared decision-making between patients and their support networks. This trial is open to individuals aged 15-29 who have been diagnosed with cancer, are currently in treatment, and can communicate in English. As an unphased trial, it offers a unique opportunity for participants to contribute to improving decision-making processes for young cancer patients.

Do I need to stop my current medications to join the trial?

The trial information does not specify whether you need to stop taking your current medications. It focuses on decision-making preferences for young adults with cancer.

What prior data suggests that this method is safe for assessing decision-making preferences in young adults with cancer?

Previous studies have examined how young adults with cancer decide on their treatment, focusing on the level of control and involvement they desire in making these choices. The research aimed to understand their preferences rather than test a new drug or medical device.

As this study centers on decision-making and preferences, it does not present safety concerns typical of drug trials. It involves collecting information on how young adults wish to engage in their care. This type of study is very safe, as it only involves answering questions and discussing decisions, without administering any treatment or medication. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about this trial because it focuses on understanding how young adults with cancer prefer to make decisions about their treatment. Unlike standard approaches that often prioritize medical perspectives, this trial highlights the importance of involving patients in the decision-making process alongside healthcare providers and family. By examining how these young patients want to participate in their care, the study aims to uncover barriers and facilitators to shared decision-making, ultimately paving the way for more personalized and patient-centered cancer care.

What evidence suggests that this decision-making assessment is effective for understanding young adults' preferences in cancer treatment decisions?

Research has shown that when teenagers and young adults (AYAs) participate in decisions about their cancer treatment, outcomes can improve. In this trial, participants will engage in the AYA Decision-Making Role Assessment, which involves completing an electronic socio-demographic questionnaire and responding to hypothetical clinical decision-making scenarios. Studies indicate that 58% of AYAs prefer to share decision-making with their doctors. This collaboration often increases their satisfaction and involvement in their treatment. Additionally, including AYAs in these decisions aligns with patient- and family-centered care practices, which are known to have positive effects. Overall, involving AYAs in decision-making helps tailor their care to fit their preferences and needs, leading to more personalized and effective treatments. ^{4 6 7 8 9}

Who Is on the Research Team?

Kimberly Pyke-Grimm

Principal Investigator

Stanford University

Are You a Good Fit for This Trial?

This trial is for Adolescents and Young Adults (AYAs) who have been diagnosed with cancer. It aims to understand their preferences in making decisions about their treatment.

Inclusion Criteria

Speaks English

Reads English

I was diagnosed with cancer and am currently receiving treatment, in palliative care, or am within one year of completing my treatment.

Exclusion Criteria

Unable to participate in study due to developmental delay or developmental disorder

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

1-2 weeks

Assessment

Participants complete an electronic socio-demographic questionnaire and hypothetical clinical decision-making scenarios

2 weeks

1 visit (virtual)

Follow-up

Participants' decision-making roles are assessed through interviews and healthcare encounter analysis

4 weeks

1 visit (virtual)

What Are the Treatments Tested in This Trial?

Interventions

• Clinical Decision-Making Scenarios and Preferences Assessment

Trial Overview The study uses clinical scenarios and assessments to explore how AYAs want to be involved in decision-making post-cancer diagnosis, examining factors that influence these preferences.

How Is the Trial Designed?

Group I: AYA Decision-Making Role Assessment Experimental Treatment 1 Intervention

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.

Who Is Running the Clinical Trial?

Stanford University

Lead Sponsor

Trials

2,527

Recruited

17,430,000+

Citations

1. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC9198895/

Cancer-Related Decision-Making Among Adolescents, Young ... Decision-making among adolescents and young adults with cancer (AYA) is often complex, ongoing, and multifaceted, involving caregiver and oncology provider ...

2. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC7384435/

Treatment Decision-Making Involvement in Adolescents and ... Involvement in treatment decision making (TDM) is considered a key element of patient- and family-centered care and positively impacts outcomes.

3. journals.sagepub.com journals.sagepub.com/doi/10.1089/jayao.2018.0116?int.sj-abstract.similar-articles.1

Identifying and Quantifying Adolescent and Young Adult ... Identifying and Quantifying Adolescent and Young Adult Patient Preferences in Cancer Care: Development of a Conjoint Analysis-Based Decision-Making Tool.

4. researchgate.net researchgate.net/publication/332517325_Adolescent_and_Young_Adult_Cancer_Patients'_Experiences_With_Treatment_Decision-making

Adolescent and Young Adult Cancer Patients' Experiences ... Results: A majority of AYAs (58%) wanted to share responsibility for decision-making with oncologists; half (51%) preferred limited involvement from parents.

5. clin.larvol.com clin.larvol.com/trial-detail/NCT07035418

Their Preferred Involvement in Decision Making This outcome measures the correlation between the number of cancer-related healthcare encounters and adolescents' and young adults' preferred treatment decision ...

6. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC7640748/

Exploration of Decisional Control Preferences in Adolescents ... This study describes the degree of decisional control AYA patients preferred in complex medical decisions.

7. sciencedirect.com sciencedirect.com/science/article/pii/S0020748925000860

A mixed methods systematic review To examine the experiences and perspectives regarding developmentally appropriate cancer services for adolescents and young adults with cancer.

8. journals.sagepub.com journals.sagepub.com/doi/10.1177/27527530211068718

Day-to-Day Decision Making by Adolescents and Young ... Exploration of decisional control preferences in adolescents and young adults with cancer and other complex medical conditions. Journal of ...

9. ctv.veeva.com ctv.veeva.com/study/adolescents-and-young-adults-with-cancer-their-preferred-involvement-in-decision-making

Their Preferred Involvement in Decision Making The purpose of this mixed-methods study is to determine Adolescent and Young Adult (AYAs) decision making preferences post cancer diagnosis ...