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

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational

Official Title: An Exploratory Study of Voicing My CHOiCES as a Tool for Advanced Care Planning in Young Adults With Cancer and Other Chronic Illnesses

Brief Summary:

Background:

- There are very few documents to help young adults living with advanced cancer discuss their concerns and end-of-life preferences. A new document, Voicing My CHOiCES, allows young adults to explain what kind of care they would want if they became unable to communicate or make medical decisions on their own. Researchers want to study if this document is helpful.

Objective:

- To study if Voicing My CHOiCES can reduce anxiety, improve sense of support, and improve communication about advanced care planning.

Eligibility:

- Adults 18 to 39 years old being treated for cancer.

Design:

  • Participants will answer questions about their age, gender, employment, religion, health, and marital status. They will also complete several brief questionnaires:

    1. General Anxiety Short Form
    2. Peace, Equanimity and Acceptance in the Cancer Experience
    3. Functional Assessment of Social Support
    4. Quality of Communication
    5. Prior Communication about Advanced Care Planning
  • Then a health care professional will introduce Voicing My CHOiCES . Participants will review the document and comment on parts they find relevant. They will also say if any important items are missing. Participants will complete 3 pages of the document with the assistance of a health care provi

    Detailed Summary:

    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.

    Same as current

    Current Secondary Outcome:

    • Helpfulness vs living & parental status [ Time Frame: 2 Months ]
    • Benefit vs Burden [ Time Frame: 2 Months ]
    • Asses VMC version [ Time Frame: 2 Months ]


    Original Secondary Outcome:

    • Helpfulness vs living & amp; parental status [ Time Frame: 2 Months ]
    • Benefit vs Burden [ Time Frame: 2 Months ]
    • Asses VMC version [ Time Frame: 2 Months ]


    Information By: National Institutes of Health Clinical Center (CC)

    Dates:
    Date Received: April 5, 2014
    Date Started: March 13, 2014
    Date Completion: December 1, 2018
    Last Updated: April 21, 2017
    Last Verified: February 15, 2017