The TAILORED Family Decision Making Study
(The TAILORED Study)
National
Institute of Nursing Research
National Institutes of Health
1 R01
NR010733-01
Total Direct Costs: $2,489,786
8/7/2009 - 6/30/2014
This study looks at what role families play in end-of-life decision making
and evaluates a brief clinic discussion and handout as a means of support
for terminally ill patients and their loved ones.
The research focuses on how patients would choose to have their families
involved in the process rather than on specific treatments patients would
choose.
Read Study Abstract
Meet the Investigators
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Marie T. Nolan
Principal
Investigator
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•
Marie T. Nolan, PhD, RN, JHU School of Nursing
• Alan Astrow, MD, Maimonides Cancer Center
•
Lora Clawson, MSN, NP, Johns Hopkins Hospital
•
Mark T. Hughes, MD, MA, JHU School of Medicine
•
Joan Kub, PhD, RN, JHU School of Nursing
•
Lisa Soleymani Lehmann, MD, PhD, MSc, Harvard University Medical School
•
Linda Rose, PhD, RN, JHU School of Nursing
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Daniel P. Sulmasy, MD, PhD, The University of Chicago
•
Peter B. Terry, MD, MA, JHU School of Medicine
•
Richard Thompson, PhD, JHU Bloomberg School of Public Health
• Sonja Emerson, RN, MSN, MPH Senior Research Nurse
• Christine St. Ours, RN, MS, Senior Research Nurse
Method
The study is a randomized clinical trial testing the TAILORED Intervention.
One hundred twenty eight patient-family dyads will be recruited from
specialty clinics at Johns Hopkins Hospital and St. Vincent's Hospital. Two
diagnostic groups will be included in the dyads: a group expected to retain
decision-making capacity (amyotrophic lateral sclerosis) and a group
expected to lose decision-making capacity (Advanced Gastro-intestinal
cancer).
The intervention will be delivered at baseline with the completion of
surveys, bolstered at 4 weeks with a phone call, and assessed through
surveys at 8 weeks. The
Family Decision Making Self Efficacy Scale will be used to measure
family members confidence in making decisions for a terminally ill loved
one. In addition, a small subset of 12 family members will be interviewed
with qualitative measures. Data will be analyzed to explore the patient and
family member's experience with and satisfaction with the TAILORED
Intervention and its impact on patient and family distress and decision
making near death.
See
further information
on the development and validation of the Family Decisions Making Self
Efficacy Scale.
