Comparing Pretransplant and Posttransplant Outcomes When Choosing a Transplant Center: Focus Groups and a Randomized Survey.

Schaffhausen CR1, Bruin MJ2, Chu S2, Wey A3, McKinney WT1, Snyder JJ4,3, Lake JR5, Matas AJ6, Kasiske BL7,3, Israni AK7,4,3.

Author information

1: Hennepin Healthcare Research Institute (HHRI), Minneapolis, MN.
2: College of Design, UMN, Minneapolis, MN.
3: Scientific Registry of Transplant Recipients, HHRI, Minneapolis, MN.
4: Department of Epidemiology and Community Health, UMN, Minneapolis, MN.
5: Division of Gastroenterology, Hepatology, and Nutrition, UMN, Minneapolis, MN.
6: Department of Surgery, UMN, Minneapolis, MN.
7: Department of Medicine, Hennepin Healthcare, University of Minnesota (UMN), Minneapolis, MN.

Abstract

BACKGROUND:

In response to calls for an increased focus on pretransplant outcomes and other patient-centered metrics in public reports of center outcomes, a mixed methods study evaluated how the content and presentation style of new information influences decision-making. The mixed methods design utilized qualitative and quantitative phases where the strengths of one method help address limitations of the other, and multiple methods facilitate comparing results.

METHODS:

First, a series of organ-specific focus groups of kidney, liver, heart, and lung patients helped to develop and refine potential displays of center outcomes and to understand patient perceptions. A subsequent randomized survey included adult internet users who viewed a single, randomly-selected variation of 6 potential online information displays. Multinomial regression evaluated the effects of graphical presentations of information on decision-making.

RESULTS:

127 candidates and recipients joined 23 focus groups. Survey responses were analyzed from 975 adults. Qualitative feedback identified patient perceptions of uncertainty in outcome metrics, in particular pretransplant metrics, and suggested a need for clear guidance to interpret the most important metric for organ-specific patient mortality. In the randomized survey, only respondents who viewed a note indicating that transplant rate had the largest impact on survival chose the hospital with the best transplant rate over the hospital with the best posttransplant outcomes (marginal relative risk and 95% confidence interval, 1.161.501.95).

CONCLUSIONS:

The presentation of pubic reports influenced decision-making behavior. The combination of qualitative and quantitative research helped to guide and enhance understanding of the impacts of proposed changes in reported metrics.