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New document helps young adults voice End-of-Life wishes

NCT ID NCT02108028

Knowledge-focused Sponsor: National Cancer Institute (NCI) Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Sep 02, 2026 · Updated 13 times

Summary

This study tested a document called Voicing My CHOiCES, designed to help young adults (ages 18-39) with serious illnesses like cancer or HIV discuss their care preferences. Participants filled out questionnaires about anxiety, social support, and communication, then reviewed the document with a healthcare provider. A month later, they repeated the questionnaires and shared whether they had discussed their wishes with loved ones. The goal was to see if the tool reduces anxiety and improves communication about end-of-life care.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
Voicing My CHOiCES document
What this could lead to
If successful, this tool could help young adults with serious illness feel more supported and less anxious about discussing their care wishes.
What could go wrong
This is an early exploratory study with no control group, so results may not prove the tool is effective. It also relies on self-reported outcomes.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

272 people

The number who actually took part.

Started

Apr 2014

Finished

Jul 2024

Lead sponsor

A government research agency

The lead sponsor is the US National Institutes of Health.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients between 18-39 must be diagnosed with cancer or other chronic illness and enrolled on an NIH protocol or treated at a participating site. Non-Patient participants must be family/friend and/or health care providers of patients diagnosed with cancer or other chronic illness and enrolled on an NIH protocol or treated at one of the participating sites.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

* ELIGIBILITY CRITERIA FOR PATIENT PARTICIPANTS (COHORT 1A, 1B, 2A, 2B, 3A \& 3B): 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. * Cohorts 1B and 2B must be English speaking only. 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 4): 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.

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Conditions

The condition(s) this trial relates to.

cancer chronic granulomatous disease combined immunodeficiency due to DOCK8 deficiency Death HIV infectious disease neoplasm

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Cancer Chronic granulomatous disease Dock 8 deficiency HIV

Contacts and locations

Locations

  • Children's Hospital at Montefiore

    The Bronx, New York, 10467, United States

  • Children's Hospital of Orange County

    Orange, California, 92868, United States

  • Childrens National Medical Center

    Washington D.C., District of Columbia, 20010, United States

  • Cook Childrens Hospital

    Fort Worth, Texas, 76104, United States

  • Dana Farber Cancer Institute

    Boston, Massachusetts, 02115, United States

  • Moffitt Cancer Center

    Tampa, Florida, 33647, United States

  • National Institutes of Health Clinical Center

    Bethesda, Maryland, 20892, United States

  • Rhode Island Hospital (Lifespan)

    Providence, Rhode Island, 02903, United States

  • The Johns Hopkins Hospital

    Baltimore, Maryland, 21287, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.