Status:

COMPLETED

Trial of Ascertaining Individual Preferences for Loved One's Role in End-of-Life

Lead Sponsor:

Johns Hopkins University

Collaborating Sponsors:

University of Chicago

National Institute of Nursing Research (NINR)

Conditions:

Amyotrophic Lateral Sclerosis

GI Cancer

Eligibility:

All Genders

18+ years

Phase:

NA

Brief Summary

Specific Aims and Hypotheses: Aim 1: To test the effect of the "Trial of Ascertaining Individual preferences for Loved Ones' Role in End-of-life Decisions" (TAILORED) Intervention on family decision-...

Detailed Description

Enhanced patient-family health care decision making is essential to improving the overall quality of end-of-life care (NIH State of the Science Conference Statement on Improving End-of-Life Care, 2004...

Eligibility Criteria

Inclusion

  • Patient Inclusion Criteria
  • Age 18 or older
  • Speaks and reads English
  • Diagnosed by a specialist at either Johns Hopkins Medical Institutions or University of Chicago Medical Center as having ALS or stage III or IV GI or pancreatic cancer.
  • Accompanied to clinic by a family member who may participate in the patient's health care decisions and who patient gives permission to approach for participation in study.
  • Lives within a 2-hour drive of The Johns Hopkins Medical Institutions or The University of Chicago Medical Center
  • G.2. Family Inclusion Criteria
  • Age 18 or older
  • Speaks and reads English
  • Identified by the patient-subject as a family member whom the patient may involve in health care decision making in the present and/or should the patient become too ill to make health care decisions.
  • Person who the patient-subject has granted investigators permission to approach for participation in this study.

Exclusion

  • Patient Exclusion Criteria
  • Severe visual impairment that would limit ability to visualize instrument illustrations
  • Cognitive impairment indicated by a Short Portable Mental Status Questionnaire adjusted error score of \>5
  • Has no family member who might assist in decision making or family member declines to participate.
  • Is not accompanied to the clinic by family member.
  • G.4. Family Exclusion Criteria
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  • Declines to participate.
  • Severe visual impairment that would limit ability to visualize instrument illustrations.
  • Cognitive impairment indicated by a Short Portable Mental Status Questionnaire adjusted error score of \>5

Key Trial Info

Start Date :

August 26 2010

Trial Type :

INTERVENTIONAL

Allocation :

ACTUAL

End Date :

March 26 2014

Estimated Enrollment :

431 Patients enrolled

Trial Details

Trial ID

NCT01160367

Start Date

August 26 2010

End Date

March 26 2014

Last Update

September 5 2018

Active Locations (1)

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1

Johns Hopkins University

Baltimore, Maryland, United States, 21205