Study of Voicing My CHOiCES as a Tool for Advanced Care Planning in Young Adults With Cancer

Background:

- Discussing end-of-life (EoL) care is very challenging for young adults (YA) living with
a life threatening disease.

- While many helpful documents exist to facilitate EoL conversations with adults, few
resources exist to aid YA in understanding and accepting their changing physical,
emotional and social needs when treatment is no longer effective.

- Between 2007-2011, the Pediatric Oncology Branch (07-C-0085) explored the helpfulness of
Five Wishes with adolescents and young adults living with HIV or advanced cancer.
Thisresearch led to the development of a new advance care planning (ACP) guide, Voicing
My CHOiCES (VMC). However, Voicing My CHOiCES has not been empirically examined in its
completed form.

Primary Objectives:

- To determine the perceived helpfulness of VMC.

- To determine whether engaging in advanced care planning using VMC is associated with
reduced anxiety, improved social support, increased acceptance of illness, and/or
improved communication about ACP with family, friends, and/or health care providers.

Secondary Objectives:

- To examine the helpfulness of VMC by living status (independent living vs. with family of

origin) and parental status.

- To examine the perceived benefit and burden of completing VMC.

- To assess whether further revisions are needed to VMC for use with YA.

Eligibility:

- Patient Participants:

- Age: 18 through 39 years

- Known cancer or other chronic illness and enrolled on an NIH protocol or treated at one
of the participating sites.

- No prior experience using Voicing My CHOiCES

- Patients and family/friend and health care providers must be English or Spanish speaking

Design:

- Each subject will complete a baseline assessment of their anxiety pertaining to advance
care planning, quality of social support, acceptance of illness,and quality of
communication with family, friends and health care providers. They will be asked to
review the advance care planning document, Voicing My CHOiCES , and to comment on each
section as to whether it can provide an opportunity to address ACP needs for themselves
and for other YA their age living with a serious illness.

- To obtain the perspectives of different YA, the study cohort will include up to 130
participants,

with a minimum of 25 YA who are living independently and 25 YA who have a child(ren) of

their own. In addition, up to 100 family/friends and health care providers of the
participants

will participate in the follow up assessment. A total of up to 230 individuals may
participate

in this study.

- A 1-month pre-post design will be used to assess the utility of the document, anxiety,
quality of social support, acceptance of illness, communication about EoL planning, and
whether the patient participant has shared any of the work completed in the document
with a family member, friend, or health care provider.

- If the participant had shared the ACP preferences that were documented in Voicing My
CHOiCES with a family member or friend, and had consented for us to contact that person,
we will obtain the family member or friend s consent and complete a brief interview
assessing the helpfulness and limitations of Voicing My CHOiCES for ACP. If the
participant had shared the ACP preferences that were documented in Voicing My CHOiCES
with their health care provider and had consented for us to talk with that health care
provider, a brief interview assessing the helpfulness and limitations of Voicing My
CHOiCES for end-of-life planning and whether any changes in the participants health care
was made in response to Voicing My CHOiCES , will be documented.

- ELIGIBILITY CRITERIA FOR PATIENT PARTICIPANTS (COHORT 1):

INCLUSION CRITERIA:

- Patients must be between ages: 18 through 39 years

- Patients must be diagnosed with cancer or other chronic illness.

- Patients must give informed consent.

- Patients must have a score of 3 or less on the Eastern Cooperative Oncology Group
Performance Status Scale (ECOG PS; Appendix

- Patients must be English or Spanish speaking.

EXCLUSION CRITERIA:

- Presence of psychotic symptoms or severe psychological distress, which in the judgment
of the Principal or Associate Investigator or consulting psychiatrist would compromise
the patient s ability to engage in the intervention or is likely to interfere with the
study procedures or results.

- Cognitive impairment which in the judgment of the Principal or Associate
Investigatorwould compromise the patient s ability to understand the VMC material or
is likely to interfere with the study procedures or results.

- Clinically significant, systemic illness (serious infections or significant cardiac,
pulmonary, hepatic or other organ dysfunction) which in the judgment of the research
team would compromise the patient s ability to tolerate or complete this study.

- Participants who have already completed the Voicing My CHOiCES tool.

ELIGIBILITY CRITERIA FOR NON-PATIENT PARTICPANTS (COHORT 2):

INCLUSION CRITERIA:

- Subject must be greater than or equal to 18 years of age

- Family/friend and/or health care providers must be English or Spanish speaking.

- Family/friend and health care providers must provide informed consent.