Status:

COMPLETED

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

Lead Sponsor:

National Cancer Institute (NCI)

Conditions:

Neoplasms

Eligibility:

All Genders

16-30 years

Brief Summary

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 effect...

Detailed Description

Background: * Discussing end of life (EoL) care with adolescents and young adults can be one of the most difficult aspects of living with a life threatening disease. * Few established resources exist...

Eligibility Criteria

Inclusion

  • INCLUSION CRITERIA:
  • Age: 16 to 30 years
  • Patients at NIH or participating site must have 1) a diagnosis of metastatic, recurrent, or progressive cancer with a mean survival rate of 2 years or less or 2) a diagnosis of perinatal or early life transfusion associated HIV infection. The treatment protocol PI or attending physician must consent to have a patient entered into this protocol. Newly diagnosed patients must have completed at least three cycles of chemotherapy.
  • For patients less than 18 years of age, a legal guardian must provide informed consent and the patients must sign an assent document.
  • Patients greater than 18 years of age must give informed consent.
  • Patients less than 18 years of age must have a score of 40 or higher on Lanksy/Karnofsky, as determined by the medical team at the time of enrollment.
  • Patients greater than 18 years of age must have a score of 3 or less on the Eastern Cooperative Oncology Group Performance Status Scale (ECOG PS) at the time of enrollment.
  • 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.
  • 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

Exclusion

    Key Trial Info

    Start Date :

    January 26 2007

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ACTUAL

    End Date :

    September 25 2014

    Estimated Enrollment :

    70 Patients enrolled

    Trial Details

    Trial ID

    NCT01445145

    Start Date

    January 26 2007

    End Date

    September 25 2014

    Last Update

    December 12 2019

    Active Locations (2)

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    Page 1 of 1 (2 locations)

    1

    Georgetown University

    Washington D.C., District of Columbia, United States, 20007-2197

    2

    National Institutes of Health Clinical Center, 9000 Rockville Pike

    Bethesda, Maryland, United States, 20892