Dysautonomia International

A Study of Questionnaires in Adolescents and Young Adults With Cancer

Purpose

The purpose of this study is to evaluate a questionnaire called PRO-AYA: Patient-Reported Outcomes for Adolescents and Young Adults.

Condition

Adolescents and Young Adults With Cancer

Eligibility

Eligible Ages: Between 15 Years and 39 Years
Eligible Sex: All
Accepts Healthy Volunteers: No

Criteria

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 and/or received active treatment
for cancer between the ages of 15-39

- Able to complete questionnaires by themselves or with assistance

- 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 Score (0-100)

Study Design

Phase
Study Type: Observational
Observational Model: Cohort
Time Perspective: Cross-Sectional

Arm Groups

Arm	Description	Assigned Intervention
AYAs with cancer who are at least three months post treatment with no additional treatment planned	Complete via REDCap (at enrollment): PRO-AYA (PRO-AYA - Patient-Reported Outcomes for Adolescents and Young Adults), Patient-Reported ECOG PS, EORTC QLQ-C30, Demographic/Clinical Characteristics, Complete via REDCap (7-10 days later): PRO-AYA, Patient-Reported, ECOG PS	Other: Patient-Reported Outcome Surveys PRO-AYA , Patient-Reported ECOG PS, EORTC QLQ-C30, Demographic/Clinical Characteristics
AYAs(Adolescents and Young Adults) who are fluent or prefer their healthcare be delivered in Spanish	Round 1 Cognitive Interviews Complete via REDCap: Spanish PRO-AYA, Demographic/Clinical Characteristic, Item modification based on patient feedback, Cohort 2b (n = 10) (AYAs who prefer healthcare delivery in Spanish) Round 2 Cognitive interviews, Complete via REDCap: Revised Spanish PRO-AYA, Demographic/Clinical Characteristics	Other: Spanish version of PRO-AYA and the cognitive interview Revised Spanish PRO-AYA, Demographic/Clinical Characteristics