Burden of Cancer in Children: A Pilot Study to Investigate the Impact and Content of Video Illness Narratives
1 other identifier
interventional
11
1 country
1
Brief Summary
In order to gain a greater understanding of the full experience of children with life-threatening illness, this study will provide video cameras to ten to fifteen 10-18 years olds in active treatment for cancer, and instruct them to make video illness narratives over the course of 1-3 months. The narratives will be studied as an intervention; each of the participants will be administered a measure of physical symptoms (the Memorial Symptom Assessment scale 10-18) and a measure of self-esteem (the Rosenberg Self-Esteem Scale). The video narratives will also be analyzed for content by theme in order to understand the participants' experiences in their own words. Our hypothesis is that these narratives will provide insight into the lives of children with cancer, increase their self-esteem, and decrease symptom distress, and improve communication between patients and their doctors.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at below P25 for not_applicable cancer
Started Nov 2008
Shorter than P25 for not_applicable cancer
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
November 1, 2008
CompletedFirst Submitted
Initial submission to the registry
November 18, 2008
CompletedFirst Posted
Study publicly available on registry
November 19, 2008
CompletedPrimary Completion
Last participant's last visit for primary outcome
June 1, 2009
CompletedStudy Completion
Last participant's last visit for all outcomes
September 1, 2009
CompletedApril 27, 2015
April 1, 2015
7 months
November 18, 2008
April 24, 2015
Conditions
Outcome Measures
Primary Outcomes (1)
Memorial Symptom Assessment Scale
3 months
Secondary Outcomes (1)
Rosenberg Self Esteem Scale
3 mopnths
Study Arms (1)
Video Illness Narrative
EXPERIMENTALsingle arm pilot study
Interventions
Eligibility Criteria
You may qualify if:
- Diagnosed with cancer
- Age 10-18
- In active treatment for cancer
- Followed at the Strong Memorial Hospital/Golisano Children's Hospital
You may not qualify if:
- Non-English Speaker
- Cognitively impaired so as to make data collection difficult
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
University of Rochester School of Medicine and Dentistry, Golisano Children's Hospital at Strong
Rochester, New York, 14642, United States
MeSH Terms
Conditions
Study Officials
- PRINCIPAL INVESTIGATOR
Emily Hahn, BA
Medical Student
- PRINCIPAL INVESTIGATOR
Barbara Asselin, MD
Associate Professor
Study Design
- Study Type
- interventional
- Phase
- not applicable
- Allocation
- NA
- Masking
- NONE
- Purpose
- SUPPORTIVE CARE
- Intervention Model
- SINGLE GROUP
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Pediatrics, Hematology Oncology
Study Record Dates
First Submitted
November 18, 2008
First Posted
November 19, 2008
Study Start
November 1, 2008
Primary Completion
June 1, 2009
Study Completion
September 1, 2009
Last Updated
April 27, 2015
Record last verified: 2015-04