Cargando…

Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study

BACKGROUND: A concerning number of kidneys (eg, expanded donor criteria, extended criteria, or marginal kidneys) are discarded yearly while patients experience significant morbidity and mortality on the transplant waitlist. Novel solutions are needed to solve the shortage of kidneys available for tr...

Descripción completa

Detalles Bibliográficos
Autores principales: Rosaasen, Canute, Rosaasen, Nicola, Mainra, Rahul, Trachtenberg, Aaron, Ho, Julie, Parsons, Christina, Delaney, Sean, Mansell, Holly
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9125065/
https://www.ncbi.nlm.nih.gov/pubmed/35615070
http://dx.doi.org/10.1177/20543581221100291
_version_ 1784711867101347840
author Rosaasen, Canute
Rosaasen, Nicola
Mainra, Rahul
Trachtenberg, Aaron
Ho, Julie
Parsons, Christina
Delaney, Sean
Mansell, Holly
author_facet Rosaasen, Canute
Rosaasen, Nicola
Mainra, Rahul
Trachtenberg, Aaron
Ho, Julie
Parsons, Christina
Delaney, Sean
Mansell, Holly
author_sort Rosaasen, Canute
collection PubMed
description BACKGROUND: A concerning number of kidneys (eg, expanded donor criteria, extended criteria, or marginal kidneys) are discarded yearly while patients experience significant morbidity and mortality on the transplant waitlist. Novel solutions are needed to solve the shortage of kidneys available for transplant. Patient perceptions regarding the use of these less than ideal kidneys remain unexplored. OBJECTIVE: To explore the perspectives of patients who have previously received a less than ideal kidney in the past and patients awaiting transplant who could potentially benefit from one. DESIGN: Qualitative description study. SETTING: 2 provinces in Canada participated (Saskatchewan and Manitoba). PATIENTS: Patients with end-stage kidney disease who were awaiting kidney transplant and were either (a) aged 65 years and older, or (b) 55 years and older with other medical conditions (eg, diabetes). METHODS: Criterion sampling was used to identify participants. Semi-structured, one-on-one interviews were conducted virtually, which explored perceived quality of life, perceptions of less than ideal kidneys, risk tolerance for accepting one, and educational needs to make such a choice. The interviews were transcribed verbatim and thematic analysis was used to analyze the data. RESULTS: 15 interviews were conducted with usable data (n = 10 pretransplant; n = 5 posttransplant). Participants were a mean of 65.5 ± 8.8 years old. Four interrelated themes became prominent including (1) patient awareness and understanding of their situation or context, (2) a desire for information, (3) a desire for freedom from dialysis, and (4) trust. Subthemes of transparency, clarity, standardization, and autonomy were deemed important for participant education. The majority of pretransplant participants (n = 8/10) indicated that between 3 and 5 years off of dialysis would make the risk of accepting a less than ideal kidney feel worthwhile. LIMITATION: The study setting was limited to 2 Canadian provinces, which limits the generalizability. Furthermore, the participants were homogenous in demographics such as ethnicity. CONCLUSION: These findings indicate that patients are comfortable to accept a less than ideal kidney for transplant in situations where their autonomy is respected, they are provided clear, standardized, and transparent information, and when they trust their physician. These results will be used to inform the development of a new national registry for expanding access to deceased-donor kidney transplant. TRIAL REGISTRATION: Not registered.
format Online
Article
Text
id pubmed-9125065
institution National Center for Biotechnology Information
language English
publishDate 2022
publisher SAGE Publications
record_format MEDLINE/PubMed
spelling pubmed-91250652022-05-24 Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study Rosaasen, Canute Rosaasen, Nicola Mainra, Rahul Trachtenberg, Aaron Ho, Julie Parsons, Christina Delaney, Sean Mansell, Holly Can J Kidney Health Dis Original Clinical Research Qualitative BACKGROUND: A concerning number of kidneys (eg, expanded donor criteria, extended criteria, or marginal kidneys) are discarded yearly while patients experience significant morbidity and mortality on the transplant waitlist. Novel solutions are needed to solve the shortage of kidneys available for transplant. Patient perceptions regarding the use of these less than ideal kidneys remain unexplored. OBJECTIVE: To explore the perspectives of patients who have previously received a less than ideal kidney in the past and patients awaiting transplant who could potentially benefit from one. DESIGN: Qualitative description study. SETTING: 2 provinces in Canada participated (Saskatchewan and Manitoba). PATIENTS: Patients with end-stage kidney disease who were awaiting kidney transplant and were either (a) aged 65 years and older, or (b) 55 years and older with other medical conditions (eg, diabetes). METHODS: Criterion sampling was used to identify participants. Semi-structured, one-on-one interviews were conducted virtually, which explored perceived quality of life, perceptions of less than ideal kidneys, risk tolerance for accepting one, and educational needs to make such a choice. The interviews were transcribed verbatim and thematic analysis was used to analyze the data. RESULTS: 15 interviews were conducted with usable data (n = 10 pretransplant; n = 5 posttransplant). Participants were a mean of 65.5 ± 8.8 years old. Four interrelated themes became prominent including (1) patient awareness and understanding of their situation or context, (2) a desire for information, (3) a desire for freedom from dialysis, and (4) trust. Subthemes of transparency, clarity, standardization, and autonomy were deemed important for participant education. The majority of pretransplant participants (n = 8/10) indicated that between 3 and 5 years off of dialysis would make the risk of accepting a less than ideal kidney feel worthwhile. LIMITATION: The study setting was limited to 2 Canadian provinces, which limits the generalizability. Furthermore, the participants were homogenous in demographics such as ethnicity. CONCLUSION: These findings indicate that patients are comfortable to accept a less than ideal kidney for transplant in situations where their autonomy is respected, they are provided clear, standardized, and transparent information, and when they trust their physician. These results will be used to inform the development of a new national registry for expanding access to deceased-donor kidney transplant. TRIAL REGISTRATION: Not registered. SAGE Publications 2022-05-21 /pmc/articles/PMC9125065/ /pubmed/35615070 http://dx.doi.org/10.1177/20543581221100291 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Original Clinical Research Qualitative
Rosaasen, Canute
Rosaasen, Nicola
Mainra, Rahul
Trachtenberg, Aaron
Ho, Julie
Parsons, Christina
Delaney, Sean
Mansell, Holly
Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study
title Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study
title_full Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study
title_fullStr Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study
title_full_unstemmed Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study
title_short Waitlisted and Transplant Patient Perspectives on Expanding Access to Deceased-Donor Kidney Transplant: A Qualitative Study
title_sort waitlisted and transplant patient perspectives on expanding access to deceased-donor kidney transplant: a qualitative study
topic Original Clinical Research Qualitative
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9125065/
https://www.ncbi.nlm.nih.gov/pubmed/35615070
http://dx.doi.org/10.1177/20543581221100291
work_keys_str_mv AT rosaasencanute waitlistedandtransplantpatientperspectivesonexpandingaccesstodeceaseddonorkidneytransplantaqualitativestudy
AT rosaasennicola waitlistedandtransplantpatientperspectivesonexpandingaccesstodeceaseddonorkidneytransplantaqualitativestudy
AT mainrarahul waitlistedandtransplantpatientperspectivesonexpandingaccesstodeceaseddonorkidneytransplantaqualitativestudy
AT trachtenbergaaron waitlistedandtransplantpatientperspectivesonexpandingaccesstodeceaseddonorkidneytransplantaqualitativestudy
AT hojulie waitlistedandtransplantpatientperspectivesonexpandingaccesstodeceaseddonorkidneytransplantaqualitativestudy
AT parsonschristina waitlistedandtransplantpatientperspectivesonexpandingaccesstodeceaseddonorkidneytransplantaqualitativestudy
AT delaneysean waitlistedandtransplantpatientperspectivesonexpandingaccesstodeceaseddonorkidneytransplantaqualitativestudy
AT mansellholly waitlistedandtransplantpatientperspectivesonexpandingaccesstodeceaseddonorkidneytransplantaqualitativestudy