Decision support needs of kidney transplant candidates regarding the deceased donor waiting list: A qualitative study and conceptual framework

Allyson Hart, Marilyn Bruin, Sauman Chu, Arthur Matas, Melissa R. Partin, Ajay K. Israni

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

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.

Original languageEnglish (US)
Article numbere13530
JournalClinical Transplantation
Volume33
Issue number5
DOIs
StatePublished - May 2019

Fingerprint

Waiting Lists
Tissue Donors
Transplants
Kidney
Confusion
Focus Groups
Decision Making
Interviews

Keywords

  • decisions
  • kidney transplant
  • knowledge
  • outcomes
  • waiting list

Cite this

Decision support needs of kidney transplant candidates regarding the deceased donor waiting list : A qualitative study and conceptual framework. / Hart, Allyson; Bruin, Marilyn; Chu, Sauman; Matas, Arthur; Partin, Melissa R.; Israni, Ajay K.

In: Clinical Transplantation, Vol. 33, No. 5, e13530, 05.2019.

Research output: Contribution to journalArticle

@article{e3db6816a26b4a19824c317e9b4db61e,
title = "Decision support needs of kidney transplant candidates regarding the deceased donor waiting list: A qualitative study and conceptual framework",
abstract = "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.",
keywords = "decisions, kidney transplant, knowledge, outcomes, waiting list",
author = "Allyson Hart and Marilyn Bruin and Sauman Chu and Arthur Matas and Partin, {Melissa R.} and Israni, {Ajay K.}",
year = "2019",
month = "5",
doi = "10.1111/ctr.13530",
language = "English (US)",
volume = "33",
journal = "Clinical Transplantation",
issn = "0902-0063",
publisher = "Wiley-Blackwell",
number = "5",

}

TY - JOUR

T1 - Decision support needs of kidney transplant candidates regarding the deceased donor waiting list

T2 - A qualitative study and conceptual framework

AU - Hart, Allyson

AU - Bruin, Marilyn

AU - Chu, Sauman

AU - Matas, Arthur

AU - Partin, Melissa R.

AU - Israni, Ajay K.

PY - 2019/5

Y1 - 2019/5

N2 - 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.

AB - 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.

KW - decisions

KW - kidney transplant

KW - knowledge

KW - outcomes

KW - waiting list

UR - http://www.scopus.com/inward/record.url?scp=85063672793&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85063672793&partnerID=8YFLogxK

U2 - 10.1111/ctr.13530

DO - 10.1111/ctr.13530

M3 - Article

C2 - 30865323

AN - SCOPUS:85063672793

VL - 33

JO - Clinical Transplantation

JF - Clinical Transplantation

SN - 0902-0063

IS - 5

M1 - e13530

ER -