Understanding Decisions for Pediatric Cancer Clinical Trials
This study aims to understand what factors parents consider when deciding whether their child with newly diagnosed cancer will participate in a clinical trial. Researchers will collect information about families' backgrounds, including their social and economic situations, and their attitudes towards clinical trials. The goal is to see how these factors influence a parent's decision to enroll their child in a therapeutic (treatment) clinical trial. This study is for parents or legal guardians of children aged 0-18 who have recently been diagnosed with cancer and are part of the Affiliate network. It does not involve any specific treatments or medications, but rather focuses on understanding decision-making.
- Study design
- This is an observational study aiming to enroll 400 participants. It involves surveys to understand sociodemographic characteristics and decision-making factors.
- What's involved
- You would complete surveys, either verbally administered by a research assistant or via an electronic link. These surveys would cover your background, social factors, and attitudes towards clinical trials.
- Compensation
- Not stated in the trial record.
- Follow-up
- Information will be collected at Day 1, approximately 1 month, and approximately 3 months after enrollment.
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The Decision To Enroll In Therapeutic Clinical Trials In A Pediatric Cancer Clinical Network
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Dylan Graetz, MD · PRINCIPAL_INVESTIGATOR · St. Jude Children's Research Hospital
Who to contact
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Do you actually qualify for this trial?
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Inclusion
Exclusion
What this trial measures
- Sociodemographic characteristics of patients treated through the Affiliate networkDay 1, or during a future contact (approximately 1 month)
Sociodemographic information will be analyzed descriptively. Full home address data will be geocoded to generate area deprivation information for each participant. Cumulative hardship will be calculated using previously established measures and scoring.These scores will be analyzed descriptively. Exploratory comparative analysis will be done to determine if there are differences between the sub-group of patients eligible for clinical trial enrollment versus those who are not eligible.
- The correlation between social determinants and individual preferences among parents/LARs and the decision to enroll on a therapeutic clinical trial.Day 1, or during a future contact (approximately 2 months)
Data collected from survey #1 for this subgroup of patients will be used to statistically describe the sociodemographic information for patients who are eligible to enroll on a clinical trial and comparative analysis will be conducted to examine differences and potential associations between the group of parents/LARs who do enroll their child on a clinical trial, and those who do not. Responses from survey #2 will be analyzed descriptively to provide an overall understanding of decision-making preferences and roles, as well as clinical trial attitudes amongst parents/LARs whose children are eligible for a clinical trial. Comparative analysis will be used to determine if there are differences in these individual preference items between the group of parents/LARs whose children do enroll on a clinical trial, and those who do not.
- The correlation between social determinants, decision-making factors, trial related attitudes among parents/LARs and the decision to enroll or not enroll on a therapeutic clinical trial.Approximately 3 months after enrollment
Qualitative data from semi-structured interviews will be transcribed and formally analyzed using thematic content analysis.
- Differences between parent/LAR individual preferences as expressed to parent interviewers compared to non-parent interviewersApproximately 3 months after enrollment
Qualitative data will be formally analyzed using thematic content analysis comparing data collected by parent interviewers to data collected by non-parent interviewers.
- Acceptability of a parent navigator program in the Affiliate networkAfter initiation of the Parent Navigator Program approximately 4 years after start of study
Acceptability: we will determine that the navigator program is acceptable if the median score on the acceptability scale is \> 3. Likert scale 1-5 will be used (1=Completely disagree, 2=Disagree, 3=Neither, 4=Agree, 5=Completely agree)
- Feasibility of a parent navigator program in the Affiliate networkAfter initiation of the Parent Navigator Program approximately 4 years after start of study
Feasibility: we will determine that the navigator program is feasible if the median score on the feasibility scale is \> 3. Likert scale 1-5 will be used (1=Completely disagree, 2=Disagree, 3=Neither, 4=Agree, 5=Completely agree)