Behaviors and Mental Disorders

All Conditions

Anxiety Disorders

Caregiver Burden

Stress, Psychological

Behavioral Symptoms

After consent, the study visit will occur. The study visit will consist of a brief set of demographic questions and a pre-game play knowledge assessment and anxiety assessment, followed by completion of the OncoWhiz game. Immediately after utilizing OncoWhiz, the participant will complete a knowledge assessment and anxiety assessment, in addition to a satisfaction survey.

OncoWhiz is an online educational tool designed to supplement current institutional caregiver education. OncoWhiz requires low graphical demands, has no-end user downloads, and is compatible with both desktop and mobile phones. Questions are derived from the institutional binder and are written at a fifth-grade reading level for user accessibility.

OncoWhiz

Melanie Fields, M.D.

The goal of this study is to assess the feasibility of using a game-based tool for caregivers of pediatric oncology patients to increase caregiver knowledge about supportive care for oncology patients while simultaneously reducing caregiver anxiety.

Online Educational Tool for Caregivers of Pediatric Oncology Patients

Online Educational Tool to Increase Knowledge and Decrease Anxiety in Caregivers of Pediatric Oncology Patients

Individual participant data that underlies the published results will be available after deidentification.

Anxiety will be quantified by the State-Trait Anxiety Inventory (STAI) Form. Participants will answer 40 questions regarding how they generally feel. There are 2 subscales within this assessment, both consisting of 20 separate items on a 4-point scale. The State Anxiety Scale (Y-1) evaluates the current state of anxiety while the Trait Anxiety Scale (Y-2) evaluates anxiety-proneness as a personality trait. A higher score indicates greater anxiety.

The knowledge assessment consists of 20 multiple choice questions related to caregiving for children with cancer. The percentage of questions answered correctly before and after utilization of the tool will be compared.

Washington University School of Medicine

Neoplasms

Rare Diseases

Glioma

Neoplasms, Neuroepithelial

Neuroectodermal Tumors

Neuroectodermal Tumors, Primitive

Neoplasms, Germ Cell and Embryonal

Neoplasms by Histologic Type

Neoplasms, Glandular and Epithelial

Neoplasms, Nerve Tissue

Neuroepithelioma

Patient participants will fill out questionnaires about emotional and physical health with responses used to develop an individualized survivorship plan conducted through 1x monthly virtual or in-clinic check-ins as well as GROW support meetings as needed for 6 months.

Caregiver participants will fill out questionnaires used to develop patient individualized survivorship plan and participate in 1x monthly check-in meetings with patients or separately for 6 months.

Follow-up survivorship care plan for patients and caregivers

GROW (Glioma Specialists Reaching Out With Support) Support Program

Timothy S Sannes, PhD

This research study is being done to test a participant and caregiver-driven model of follow-up survivorship care,GROW Support (Glioma Specialists Reaching Out With Support), for post-treatment, low grade glioma patients.

This research study is a Feasibility Study, which examines if a supportive intervention for people with low grade gliomas (LGGs) and their caregivers is acceptable and feasible to patients and their caregivers.

The research study procedures include: screening for eligibility and study interventions including filling out questionnaires and virtual or in-clinic supportive follow up visits to identify additional supportive needs that may arise.

Participants will be in this research study for up to 6 months.

It is expected that about 40 people will take part in this research study.

The Levitan-Zabin Fund for GROW Support is supporting this research study by providing funds for research team members to do this study.

GROW (Glioma Specialists Reaching Out With Support) Support

GROW Support (Glioma Specialists Reaching Out With Support): Assessment of a Comprehensive Support Program for Low Grade Glioma Patients Post-treatment

The Dana-Farber / Harvard Cancer Center encourages and supports the responsible and ethical sharing of data from clinical trials. De-identified participant data from the final research dataset used in the published manuscript may only be shared under the terms of a Data Use Agreement. Requests may be directed to: \[contact information for Sponsor Investigator or designee\]. The protocol and statistical analysis plan will be made available on Clinicaltrials.gov only as required by federal regulation or as a condition of awards and agreements supporting the research.

Primary outcome is feasibility as defined by 60% of the eligible participants and their caregivers being recruited into the study and completing the initial assessment and associated survivorship plan

Acceptability of this supportive program ("GROW Support") for patients and their caregivers will be assessed by the Abbreviated Acceptability Rating Profile and based on in-depth semi-structured interview with one of the study investigators.

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Online Educational Tool for Caregivers of Pediatric Oncology Patients	NCT05616572	Caregiver Burde... Care Giving Bur... Pediatric Cance...	OncoWhiz	18 Years -	Washington University School of Medicine
GROW (Glioma Specialists Reaching Out With Support) Support	NCT05233215	Low-grade Gliom... Survivorship Care Giving Bur...	GROW (Glioma Sp...	18 Years -	Dana-Farber Cancer Institute
GROW (Glioma Specialists Reaching Out With Support) Support	NCT05233215	Low-grade Gliom... Survivorship Care Giving Bur...	GROW (Glioma Sp...	18 Years -	Dana-Farber Cancer Institute

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