Browsing by Author "Lee, Joy"

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    Barriers to access in pediatric living‐donor liver transplantation
    (Wiley, 2019-09) Mogul, Douglas B.; Lee, Joy; Purnell, Tanjala S.; Massie, Allan B.; Ishaque, Tanveen; Segev, Dorry L.; Bridges, John F. P.; Medicine, School of Medicine
    Children receiving a LDLT have superior post‐transplant outcomes, but this procedure is only used for 10% of transplant recipients. Better understanding about barriers toward LDLT and the sociodemographic characteristics that influence these underlying mechanisms would help to inform strategies to increase its use. We conducted an online, anonymous survey of parents/caregivers for children awaiting, or have received, a liver transplant regarding their knowledge and attitudes about LDLT. The survey was completed by 217 respondents. While 97% of respondents understood an individual could donate a portion of their liver, only 72% knew the steps in evaluation, and 69% understood the donor surgery was covered by the recipient's insurance. Individuals with public insurance were less likely than those with private insurance to know the steps for LDLT evaluation (44% vs 82%; P < 0.001). Respondents with public insurance were less likely to know someone that had been a living donor (44% vs 56%; P = 0.005) as were individuals without a college degree (64% vs 85%; P = 0.007). Nearly all respondents generally trusted their healthcare team. Among respondents, 82% believed they were well‐informed about LDLT but individuals with public insurance were significantly less likely to feel well‐informed (67% vs 87%; P = 0.03) and to understand how donor surgery might impact donor work/time off (44% vs 81%; P = 0.001). Substantial gaps exist in parental understanding about LDLT, including its evaluation, potential benefits, and complications. Greater emphasis on addressing these barriers, especially to individuals with fewer resources, will be helpful to expand the use of LDLT.
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    What does shared decision making look like in natural settings? A mixed methods study of patient–provider conversations
    (Equinox, 2017) Lee, Joy; Callon, Wynne; Haywood, Carlton, Jr.; Lanzkron, Sophie M.; Gulbrandsen, Pål; Beach, Mary Catherine; Medicine, School of Medicine
    Objective: To understand the variability and nature of shared decision making (SDM) regarding a uniform type of serious medical decision, and to make normative judgments about how these conversations might be improved. Methods: This was a mixed-methods sub-analysis of the Improving Patient Outcomes with Respect and Trust (IMPORT) study. We used the Braddock framework to identify and describe seven elements of SDM in audio-recorded encounters regarding initiation of hydroxyurea, and used data from medical records and patient questionnaires to understand whether and how these tasks were achieved. Results: Physicians covered a spectrum of SDM behaviors: all dialogues contained discussion regarding the clinical issue and the pros and cons of treatment; the patient's understanding and role were not explicitly assessed or stated in any encounter. Yet no patient agreed to start hydroxyurea who did not already prefer it. There was no uniform approach to how physicians presented risk; many concerns expressed by patients in a pre-visit questionnaire were not discussed. Conclusion: In this analysis, patients seemed to understand their role in the decision-making process, suggesting that a patient's role may not always need to be explicitly stated. However, shared decision making might be improved with more routine assessment of patient understanding and concerns. Standardized decision aids might help fully inform patients of risks and benefits.