Interviews and Usability Testing to Understand How Kidney Patients make Treatment Decisions
Location
DeSantis Room 1047
Format Type
Plenary
Format Type
Paper
Start Date
15-1-2020 1:15 PM
End Date
15-1-2020 1:35 PM
Abstract
The paper describes the qualitative methods, discoveries, and outputs of an interdisciplinary research and product development team of a social scientist, graphic designer, and nephrologist. Initially, we interviewed n-stage kidney patients to understand their knowledge of treatment options and how they reach decisions. Four themes were identified: 1. Participants do not understand the multitude of factors impacting decisions about waiting lists and donor organs; 2. Participants relied on information from their providers and preferred frank information about their individual medical conditions and prognosis; 3. Emotions and family dynamics as well as knowledge influenced; and, 4. Participants also relied on the support of family and friends to help interpret information and make decisions. The evidence influenced the development of a risk calculator. Furthermore, qualitative analysis of patient feedback during usability testing refined the design and informed the implementation. Analysis of usability testing refined the design of the calculator, furthermore qualitative analysis of participant feedback emphasized the need to use the calculator with a provider and encourage discussions about individualized concerns, options, and possible outcomes. The researchers continue generating evidence to design additional solutions. For example, currently they are analyzing focus group data from members of patient support networks to understand their motivations and needs in supporting patients. The goal is to develop interventions to encourage and support families and friends engaged in supporting kidney patients.
Keywords
treatment decisions, risk calculator, usability testing, interview, focus group
Interviews and Usability Testing to Understand How Kidney Patients make Treatment Decisions
DeSantis Room 1047
The paper describes the qualitative methods, discoveries, and outputs of an interdisciplinary research and product development team of a social scientist, graphic designer, and nephrologist. Initially, we interviewed n-stage kidney patients to understand their knowledge of treatment options and how they reach decisions. Four themes were identified: 1. Participants do not understand the multitude of factors impacting decisions about waiting lists and donor organs; 2. Participants relied on information from their providers and preferred frank information about their individual medical conditions and prognosis; 3. Emotions and family dynamics as well as knowledge influenced; and, 4. Participants also relied on the support of family and friends to help interpret information and make decisions. The evidence influenced the development of a risk calculator. Furthermore, qualitative analysis of patient feedback during usability testing refined the design and informed the implementation. Analysis of usability testing refined the design of the calculator, furthermore qualitative analysis of participant feedback emphasized the need to use the calculator with a provider and encourage discussions about individualized concerns, options, and possible outcomes. The researchers continue generating evidence to design additional solutions. For example, currently they are analyzing focus group data from members of patient support networks to understand their motivations and needs in supporting patients. The goal is to develop interventions to encourage and support families and friends engaged in supporting kidney patients.
Comments
The goal of the presentation is to share the research process and outcomes of an interdisciplinary research team. The first outcomes have been published, but the work evolves; we can share how outcomes continue to generate new questions. At the same time, we continue to develop and refine our skills in analysis.