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Decision support needs of kidney transplant candidates regarding the deceased donor waiting list: A qualitative study and conceptual framework
Author(s) -
Hart Allyson,
Bruin Marilyn,
Chu Sauman,
Matas Arthur,
Partin Melissa R.,
Israni Ajay K.
Publication year - 2019
Publication title -
clinical transplantation
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.918
H-Index - 76
eISSN - 1399-0012
pISSN - 0902-0063
DOI - 10.1111/ctr.13530
Subject(s) - medicine , qualitative research , kidney transplant , focus group , kidney transplantation , donation , grounded theory , family medicine , transplantation , surgery , social science , marketing , sociology , economics , business , economic growth
Background Kidney transplant candidates face complex decisions about transplant options such as living donation or acceptance of lower quality kidneys. We sought to characterize knowledge and decision support needs regarding kidney transplant outcomes and options. Methods We conducted 10 interviews and four focus groups of 28 adult kidney transplant candidates from two centers in Minnesota. Transcripts were analyzed thematically using a grounded theory approach. Results We identified four themes: First, candidates have a limited understanding of treatment options and demonstrate confusion or a lack of awareness about waiting list outcomes and prognosis. Second, candidates desired frank discussions about likely outcomes and individualized prognosis. Third, emotional barriers impact how patients make informed decisions. Finally, participants relied on the support of family and friends to help process information, and many favored the medical community engaging their family and friends in their medical decisions. These findings were incorporated into a conceptual model to support kidney transplant candidates in medical decision making. Conclusions Transplant candidates had limited understanding about treatment options and outcomes on the kidney transplant waiting list. Individualized risk information and cognitive approaches that recognize how patients process information and balance competing risks may improve informed decision making.