Cancer
Conditions
Keywords
Childhood Survivor, survivors, Young Adult Cancer Survivors, Childhood cancers, 09-001
Brief summary
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.
Interventions
BEHAVIORALinterview
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.
BEHAVIORALFocus 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.
BEHAVIORALQuestionnaire
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.
Sponsors
Memorial Sloan Kettering Cancer Center
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
15 Years to 25 Years
Healthy volunteers
No
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.
Design outcomes
Primary
| 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
| Measure | Time frame |
|---|---|
| Conduct a prospective longitudinal assessment of identity development and peer and family relationships among survivors diagnosed during adolescence. | 3 years |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORMarie Barnett, PhD
Memorial Sloan Kettering Cancer Center
Outcome results
None listed