An Exploratory Study of the Use of Five Wishes as a Tool for Advanced Care Planning in Young Adults With Metastatic, Recurrent, or Progressive Cancer or HIV Infection
Completed
Conditions studied: Neoplasms
In brief
Background: * Few resources exist for helping adolescents and young adults with cancer or HIV disease understand their changing physical, emotional and social needs when treatment is no longer effective. * An advance directive document called Five Wishes has had particular success with the adult population because of the consideration of personal, emotional and spiritual needs in addition to medical and legal concerns. Objectives: -To learn which questions in Five Wishes are useful for adolescents and young adults and to then create a new document that reflects the issues they feel are most appropriate for people with cancer or HIV disease. Eligibility: -Adolescents and young adults 16 to 30 years of age with advanced cancer or HIV disease acquired perinatally or early in life and enrolled in an active NIH treatment protocol. Design: * Stage 1: Participants go through each question in Five Wishes and respond to whether they feel the questions are useful. * Stage 2: Participants are asked to compare each question from Five Wishes to a newly developed document based on the feedback received during first stage of the study. * Participants are enrolled for either Stage 1 or Stage 2 depending on the date they enter the study.
Key facts
- Study ID
- NCT01445145
- Run by
- National Cancer Institute (NCI)
- People needed
- 70
- Starts
- 2007-01-26
- Expected to finish
- 2014-09-25
- Last updated by the study team
- 2019-12-12
Who can join
Age: 16 and older, up to 30. Sex: any. Healthy volunteers: not accepted.
You may not qualify if…
- 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.
- Previously identified cognitive impairment which in the judgment of the Principal or Associate Investigator would compromise the patient s ability to understand the Five Wishes 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 this study
Where it is running
- Georgetown University — Washington D.C., District of Columbia, United States
- National Institutes of Health Clinical Center, 9000 Rockville Pike — Bethesda, Maryland, United States
Full record on ClinicalTrials.gov
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