Adolescent and Young Adult Cancer Survivors: Identity Development
This study is currently recruiting participants.
Verified February 2013 by Memorial Sloan-Kettering Cancer Center
Sponsor:
Memorial Sloan-Kettering Cancer Center
Information provided by (Responsible Party):
Memorial Sloan-Kettering Cancer Center
ClinicalTrials.gov Identifier:
NCT00832325
First received: January 28, 2009
Last updated: February 21, 2013
Last verified: February 2013
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Purpose
The purpose of this study is to better understand how the illness has affected the identity and what needs the survivor may have. We hope that this information will help us provide better care to future adolescent and young adult cancer survivors.
| Condition | Intervention |
|---|---|
|
Cancer |
Behavioral: interview Behavioral: Focus groups Behavioral: Questionnaire |
| Study Type: | Observational |
| Study Design: | Observational Model: Cohort Time Perspective: Prospective |
| Official Title: | Adolescent and Young Adult Cancer Survivors: Identity Development |
Resource links provided by NLM:
Further study details as provided by Memorial Sloan-Kettering Cancer Center:
Primary Outcome Measures:
- Conduct a comprehensive qualitative assessment through individual interviews and focus groups of identity development, peer and family relationships, and psychosocial concerns among survivors diagnosed during adolescence. [ Time Frame: 3 years ] [ Designated as safety issue: No ]
Secondary Outcome Measures:
- Conduct a prospective longitudinal assessment of identity development and peer and family relationships among survivors diagnosed during adolescence. [ Time Frame: 3 years ] [ Designated as safety issue: No ]
| Estimated Enrollment: | 300 |
| Study Start Date: | January 2009 |
| Estimated Study Completion Date: | January 2014 |
| Estimated Primary Completion Date: | January 2014 (Final data collection date for primary outcome measure) |
| Groups/Cohorts | Assigned Interventions |
|---|---|
|
1 individual interviews
The patient will be asked to come in to the Counseling Center at MSKCC (641 Lexington Avenue, 7th Floor) and participate in an individual interview at their convenience.
|
Behavioral: interview
The doctor and/or one of her trained research study staff will ask the patient about their experience as an adolescent/young adult cancer survivor, their health and quality of life. It should take (approximately 1-1 ½ hours)to complete. Interviews will be audiotaped and transcribed by a professional transcription service.
|
|
2 Focus Groups
The patient will be asked to come in to the Counseling Center at MSKCC (641 Lexington Avenue, 7th Floor) and participate in a focus group at their convenience.
|
Behavioral: Focus groups
The patient will participate with 6-8 other adolescent/young adult cancer survivors. The doctor and/or her trained research study staff will ask about their experience as an adolescent/young adult cancer survivor, their health and quality of life. It should take about one-and-a-half hour to complete. Focus groups will be audio taped and transcribed by a professional transcription service.
|
|
3 Questionnaire
The patient will be asked to participate in three 60-90 minute telephone interviews scheduled at their convenience.
|
Behavioral: Questionnaire
The patient will be asked to participate in three 60-90 minute telephone interviews conducted by the doctor and/or her trained research study staff scheduled at the patient's convenience, the second interview approximately 6-8 months after the first and the last interview approximately 12-16 months after the first. The questionnaire will ask about their experience as an adolescent/young adult cancer survivor, their health and quality of life.
|
Eligibility| Ages Eligible for Study: | 15 Years to 25 Years |
| Genders Eligible for Study: | Both |
| Accepts Healthy Volunteers: | No |
| Sampling Method: | Probability Sample |
Study Population
adolescent survivors from MSKCC
Criteria
Inclusion Criteria:
- Current age greater than and including 15 and up to and including 25 years of age at time of consent
- Diagnosis of a first cancer > or = to 14 and up to and including 21 years of age
- At least 6 months post-treatment according to participant's self-report.
- Able to provide informed consent (or parent or legal guardian consent and participant assent for those participants under 18 years of age)
- Able to speak English. This inclusion criterion is included because study assessments were designed and validated in English and many of them are not currently available in other languages. Translation of questionnaires into other languages would require reestablishing the reliability and validity of these measures. Therefore, participants must be able to communicate in English to complete the assessments.
Exclusion Criteria:
- Will exclude survivors with severe cognitive impairment that precludes them from being able to give information consent and/or complete the questionnaires.
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00832325
Contacts
| Contact: Jennifer Ford, PhD | 646-888-0042 | |
| Contact: Charles Sklar, MD | 212-639-8138 |
Locations
| United States, New York | |
| Memorial Sloan-Kettering Cancer Center | Recruiting |
| New York, New York, United States, 10065 | |
| Contact: Jennifer Ford, PhD 646-888-0042 | |
Sponsors and Collaborators
Memorial Sloan-Kettering Cancer Center
Investigators
| Principal Investigator: | Jennifer Ford, PhD | Memorial Sloan-Kettering Cancer Center |
More Information
Additional Information:
No publications provided
| Responsible Party: | Memorial Sloan-Kettering Cancer Center |
| ClinicalTrials.gov Identifier: | NCT00832325 History of Changes |
| Other Study ID Numbers: | 09-001 |
| Study First Received: | January 28, 2009 |
| Last Updated: | February 21, 2013 |
| Health Authority: | United States: Institutional Review Board |
Keywords provided by Memorial Sloan-Kettering Cancer Center:
|
Childhood Survivor survivors Young Adult Cancer Survivors Childhood cancers 09-001 |
ClinicalTrials.gov processed this record on May 19, 2013