Adolescent and Young Adult Cancer Survivors: Identity Development

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.

Study Overview

• Status: Active, not recruiting
• Conditions: Cancer
• Intervention / Treatment: Behavioral: interview; Behavioral: Focus groups; Behavioral: Questionnaire

• Study Type: Observational
• Enrollment (Estimated): 300

Contacts and Locations

Study Locations

• United States
  • New York
    • New York, New York, United States, 10065
      • Memorial Sloan Kettering Cancer Center

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 15 years to 25 years (Child, Adult)
• Accepts Healthy Volunteers: No

• Sampling Method: Probability Sample

Study Population

adolescent survivors from MSKCC

Description

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.

Study Plan

How is the study designed?

Design Details

• Observational Models: Cohort
• Time Perspectives: Prospective

Number of groups / cohorts

3

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
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.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Time Frame
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.	3 years

Secondary Outcome Measures

Outcome Measure	Time Frame
Conduct a prospective longitudinal assessment of identity development and peer and family relationships among survivors diagnosed during adolescence.	3 years

Collaborators and Investigators

• Sponsor: Memorial Sloan Kettering Cancer Center
• Investigators: Principal Investigator: Marie Barnett, PhD, Memorial Sloan Kettering Cancer Center

Publications and helpful links

Helpful Links

• Memorial Sloan Kettering Cancer Center

Study record dates

Study Major Dates

• Study Start: January 1, 2009
• Primary Completion (Estimated): January 1, 2027
• Study Completion (Estimated): January 1, 2027

Study Registration Dates

• First Submitted: January 28, 2009
• First Submitted That Met QC Criteria: January 29, 2009
• First Posted (Estimated): January 30, 2009

Study Record Updates

• Last Update Posted (Actual): March 3, 2026
• Last Update Submitted That Met QC Criteria: March 2, 2026
• Last Verified: March 1, 2026

More Information

Terms related to this study

• Keywords: Childhood Survivor; survivors; Young Adult Cancer Survivors; Childhood cancers; 09-001
• Additional Relevant MeSH Terms: Neoplasms; Health Care Quality, Access, and Evaluation; Investigative Techniques; Epidemiologic Methods; Data Collection; Health Care Evaluation Mechanisms; Quality of Health Care; Public Health; Environment and Public Health; Interviews as Topic; Surveys and Questionnaires; Focus Groups
• Other Study ID Numbers: 09-001 (SIUH IRB)