Study Name:
OPTIONS: End of Life Preferences and Outcomes: Patients and Spouses

Principal Investigator:
Rachel Pruchno, PhD

Project Data Analyst:
Maureen Wilson-Genderson, PhD

Project Manager:
Francine Cartwright

Brief Summary of Research Initiative:
The overall goal of this prospective longitudinal study is to gain better understanding of the preferences for end of life treatment on the part of patients with End Stage Renal Disease and their spouses. The study examines these preferences within the contexts of both the marital dyad and the course of chronic disease.

Sample Size:
315 couples (630 participants)

Funding Source:
National Institute of Nursing Research (R01 NR05237)

Dates of Study:
Start: September, 2000      
End: Ongoing

Data Collection:   
Start: May, 2001     
End: June, 2006

Method of Recruitment:
A one-time informational mailing, approved by the Centers for Medicare & Medicaid Services (CMS), to 37,000 beneficiaries in Medicare's End-Stage Renal Disease (ESRD) program generated 1321 responses. Of these 307 couples were eligible and 219 couples enrolled. An additional 96 couples were recruited using non-probability sampling methods such as newspaper ads and referrals.

Method of Data Collection:
Telephone interviewing

Design (Cross-sectional, etc.):
Longitudinal

Published Manuscripts:
Feild, L., Pruchno, R.A., Bewley, J. Lemay, E.P., & Levinsky, N.G. (2006). Using Probability vs. Non-Probability Sampling to Identify Hard-to-Access Participants for Health-Related Research: Costs and Contrasts.Journal of Aging and Health, 18(4): 565-583.

Lemay, E.P., Pruchno, R.A., & Feild, L. (2006). Accuracy and bias in perceiving marriage partners' life-sustaining treatment preferences. Journal of Applied Social Psychology, 36(10): 2337-2361.

Pruchno,R.A., Lemay, E.P., Feild, L.,& Levinsky, N.G. (2006). Predictors of Patient Treatment Preferences and Spouse Substituted Judgments: The Case of Dialysis Continuation. Medical Decision Making, 26(2): 112-121.

Pruchno,R.A., Lemay, E.P., Feild, L., & Levinsky, N.G. (2005). Spouse as Health Care Proxy for Dialysis Patients: Whose Preferences Matter? Gerontologist, 45(6): 812-819.

New Manuscript Submissions:
Title: Stability and Change in Patient Preferences and Spouse Substituted Judgments Regarding Dialysis Continuation
Authors: Rachel Pruchno Ph.D., Director of Research, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey , School of Osteopathic Medicine, Richard McConaghy, J.D., Ph.D., Michael Rovine, Ph.D., Associate Professor, Penn State University

Title: The Effects of Race on Patient Preferences and Spouse Substituted Judgment
Authors : Rachel Pruchno, Ph.D., Director of Research, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey , School of Osteopathic Medicine & Francine Cartwright, Project Manager, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey, School of Osteopathic Medicine

Poster/Presentations at Scientific Meetings:
Title: Stability and Change in Patient Preferences and Spouse Substituted Judgments Regarding Dialysis Continuation
Authors: Rachel Pruchno Ph.D., Director of Research, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey , School of Osteopathic Medicine, Richard McConaghy, J.D., Ph.D., Michael Rovine, Ph.D., Associate Professor, Penn State University
Poster Session: The Gerontological Society of America's 59th Annual Scientific Meeting (2006)

Title: The Effects of Race on Patient Preferences and Spouse Substituted Judgment
Authors : Rachel Pruchno, Ph.D., Director of Research, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey , School of Osteopathic Medicine & Francine Cartwright, Project Manager, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey, School of Osteopathic Medicine
Poster Session: The Gerontological Society of America's 59 th Annual Scientific Meeting (2006)

Title: Quality of Life of Couples Coping with End Stage Renal Disease
Authors: Christine Ferri, PhD Assistant Professor of Psychology, The Richard Stockton College of New Jersey & Rachel Pruchno, Ph.D., Director of Research, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey , School of Osteopathic Medicine
Poster Session: The Gerontological Society of America's 59 th Annual Scientific Meeting (2006)

Title: Spousal Concordance on Affect in Older Couples Dealing with End-Stage Renal Disease
Authors: Jamila Bookwala , Ph.D. Department of Psychology, Lafayette College & Rachel Pruchno, Ph.D., Director of Research, New Jersey Institute for Successful Aging, University of Medicine and Dentistry of New Jersey , School of Osteopathic Medicine.
Poster Session: The Gerontological Society of America's 59 th Annual Scientific Meeting (2006)

Published Abstracts:
Abstract Title : Patient and Spouse Preferences for Dialysis Continuation: Does Race Matter?
Authors: Francine Cartwright, Project Manager, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey , School of Osteopathic Medicine & Rachel Pruchno, Ph.D., Director of Research, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey , School of Osteopathic Medicine
Publication: Cultural Competence and Health Disparities: Seeking to Make a Difference in our Communities: A Compendium of Research Initiatives . This publication is supported by UMDNJ's Hispanic Center of Excellence & Institute for the Elimination of Health Disparities.

Published Article:
Article Title : End-of-Life Preferences of Older Nephrology Patients and Their Spouses
Author: Rachel Pruchno, Ph.D., Director of Research, New Jersey Institute for Successful Aging, University of Medicine & Dentistry of New Jersey , School of Osteopathic Medicine
Publication: UMDNJ Research Magazine for the Research Community from the State University of the Health Sciences Volume 6, No.2, Fall 2005.