Adolescents and Young Adults With Cancer
Conditions
Keywords
PRO-AYA: Patient-Reported Outcomes for Adolescents and Young Adults, Psychometric and Linguistic Validation
Brief summary
The purpose of this study is to evaluate a questionnaire called PRO-AYA: Patient-Reported Outcomes for Adolescents and Young Adults.
Interventions
OTHERPatient-Reported Outcome Surveys
PRO-AYA , Patient-Reported ECOG PS, EORTC QLQ-C30, Demographic/Clinical Characteristics
OTHERSpanish version of PRO-AYA and the cognitive interview
Revised Spanish PRO-AYA, Demographic/Clinical Characteristics
Sponsors
Memorial Sloan Kettering Cancer Center
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
15 Years to 39 Years
Healthy volunteers
No
Inclusion criteria
* English- or Spanish proficient o As assessed by two items: How well do you speak English? What is your preferred language for healthcare? * Between the ages of 15-39 * Diagnosed with cancer or the recurrence of a cancer as per clinician report and/or received active treatment for cancer between the ages of 15-39 * Able to complete questionnaires by themselves or with assistance as per self-report * For Cohort 1 ONLY: * 3 months from last treatment without plan to initiate any form of cancer-directed treatment in the next 3 months OR * On chronic cancer-directed therapy for the last 3 months without plan to change cancer-directed therapy in the next 3 months AND * ECOG Performance Status (0-4) or KPS/Lansky Score (0-100)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Test-retest reliability | up to one month | The test-retest reliability will be based on the intraclass correlation (ICC) coefficients between the baseline and follow-up domain scores of PRO-AYA. |
| Linguistically validate PRO-AYA or patients who prefer their healthcare be delivered in Spanish. (Cohort 2) | up to a month | The primary goal of these cognitive interviews is to ensure that the wording and/or phrasing of the instructions, questions and answer choices are appropriate for native Spanish-speakers. The wording and phrasing are a result of direct translation of the English version of the PRO-AYA to a Spanish version. |
Countries
United States
Contacts
CONTACTThomas Atkinson, PhD
CONTACTMarie Barnett, PhD
PRINCIPAL_INVESTIGATORThomas Atkinson, PhD
Memorial Sloan Kettering Cancer Center
Outcome results
None listed