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Published in: BMC Nephrology 1/2012

Open Access 01-12-2012 | Research article

Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes

Authors: Ingrid B de Groot, Karen Schipper, Sandra van Dijk, Paul J M van der Boog, Anne M Stiggelbout, Andrzej G Baranski, Perla J Marang-van de Mheen, the PARTNER-study group

Published in: BMC Nephrology | Issue 1/2012

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Abstract

Background

Limited data exist on the impact of living kidney donation on the donor-recipient relationship. Purpose of this study was to explore motivations to donate or accept a (living donor) kidney, whether expected relationship changes influence decision making and whether relationship changes are actually experienced.

Methods

We conducted 6 focus groups in 47 of 114 invited individuals (41%), asking retrospectively about motivations and decision making around transplantation. We used qualitative and quantitative methods to analyze the focus group transcripts.

Results

Most deceased donor kidney recipients had a potential living donor available which they refused or did not want. They mostly waited for a deceased donor because of concern for the donor’s health (75%). They more often expected negative relationship changes than living donor kidney recipients (75% vs. 27%, p = 0.01) who also expected positive changes. Living donor kidney recipients mostly accepted the kidney to improve their own quality of life (47%). Donors mostly donated a kidney because transplantation would make the recipient less dependent (25%). After transplantation both positive and negative relationship changes are experienced.

Conclusion

Expected relationship changes and concerns about the donor’s health lead some kidney patients to wait for a deceased donor, despite having a potential living donor available. Further research is needed to assess whether this concerns a selected group.
Appendix
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Literature
1.
go back to reference Johnson EM, Anderson JK, Jacobs C, Suh G, Humar A, Suhr BD, Kerr SR, Matas AJ: Long-term follow-up of living kidney donors: quality of life after donation. Transplantation. 1999, 67: 717-721. 10.1097/00007890-199903150-00013.CrossRefPubMed Johnson EM, Anderson JK, Jacobs C, Suh G, Humar A, Suhr BD, Kerr SR, Matas AJ: Long-term follow-up of living kidney donors: quality of life after donation. Transplantation. 1999, 67: 717-721. 10.1097/00007890-199903150-00013.CrossRefPubMed
2.
go back to reference Ku JH: Health-related quality of life of living kidney donors: review of the short form 36-health questionnaire survey. Transpl Int. 2005, 18: 1309-1317. 10.1111/j.1432-2277.2005.00231.x.CrossRefPubMed Ku JH: Health-related quality of life of living kidney donors: review of the short form 36-health questionnaire survey. Transpl Int. 2005, 18: 1309-1317. 10.1111/j.1432-2277.2005.00231.x.CrossRefPubMed
3.
go back to reference Kok NFM: Live kidney donation. A plea for the laparoscopic approach (PhD Thesis). 2007, Rotterdam: Optima Grafische Communicatie Kok NFM: Live kidney donation. A plea for the laparoscopic approach (PhD Thesis). 2007, Rotterdam: Optima Grafische Communicatie
4.
go back to reference Lumsdaine JA, Wray A, Power MJ, Jamiesion NV, Akyol M, Andrew Bradley J, Forsythe JL, Wigmore SJ: Higher quality of life in living donor kidney transplantation: prospective cohort study. Transpl Int. 2005, 18: 975-980. 10.1111/j.1432-2277.2005.00175.x.CrossRefPubMed Lumsdaine JA, Wray A, Power MJ, Jamiesion NV, Akyol M, Andrew Bradley J, Forsythe JL, Wigmore SJ: Higher quality of life in living donor kidney transplantation: prospective cohort study. Transpl Int. 2005, 18: 975-980. 10.1111/j.1432-2277.2005.00175.x.CrossRefPubMed
5.
go back to reference Roodnat JI, van Riemsdijk IC, Mulder PGH, Doxiadis I, Claas FH, IJzermans JN, van Gelder T, Weimar W: The superior results of living-donor renal transplantation are not completely caused by selection or short cold ischemia time: a single-center multivariate analysis. Transplantation. 2003, 75: 2014-2018. 10.1097/01.TP.0000065176.06275.42.CrossRefPubMed Roodnat JI, van Riemsdijk IC, Mulder PGH, Doxiadis I, Claas FH, IJzermans JN, van Gelder T, Weimar W: The superior results of living-donor renal transplantation are not completely caused by selection or short cold ischemia time: a single-center multivariate analysis. Transplantation. 2003, 75: 2014-2018. 10.1097/01.TP.0000065176.06275.42.CrossRefPubMed
6.
go back to reference Sajjad I, Baines LS, Salifu M, Jindal RM: The dynamics of recipient-donor relationships in living kidney transplantation. Am J Kidney Dis. 2007, 50: 834-854. 10.1053/j.ajkd.2007.07.029.CrossRefPubMed Sajjad I, Baines LS, Salifu M, Jindal RM: The dynamics of recipient-donor relationships in living kidney transplantation. Am J Kidney Dis. 2007, 50: 834-854. 10.1053/j.ajkd.2007.07.029.CrossRefPubMed
7.
go back to reference Clemens KK, Thiessen-Philbrook H, Parikh CR, Yang RC, Karley ML, Boudville N, Ramesh Prasad GV, Garg AX, Donor Nephrectomy Outcomes Research (DONOR) Network: Psychosocial health of living kidney donors: a systematic review. Am J Transplant. 2006, 6: 2965-2977. 10.1111/j.1600-6143.2006.01567.x.CrossRefPubMed Clemens KK, Thiessen-Philbrook H, Parikh CR, Yang RC, Karley ML, Boudville N, Ramesh Prasad GV, Garg AX, Donor Nephrectomy Outcomes Research (DONOR) Network: Psychosocial health of living kidney donors: a systematic review. Am J Transplant. 2006, 6: 2965-2977. 10.1111/j.1600-6143.2006.01567.x.CrossRefPubMed
8.
go back to reference Ummel D, Achille M, Mekkelholt J: Donors and recipients of living kidney donation: a qualitative metasummary of their experiences. J Transplant. 2011, 10.1155/2011/626501. Ummel D, Achille M, Mekkelholt J: Donors and recipients of living kidney donation: a qualitative metasummary of their experiences. J Transplant. 2011, 10.1155/2011/626501.
9.
go back to reference Franklin P, Crombie A, Boudville N: Live related renal transplantation: psychological, social and cultural issues. Transplantation. 2003, 76: 1247-1252. 10.1097/01.TP.0000087833.48999.3D.CrossRefPubMed Franklin P, Crombie A, Boudville N: Live related renal transplantation: psychological, social and cultural issues. Transplantation. 2003, 76: 1247-1252. 10.1097/01.TP.0000087833.48999.3D.CrossRefPubMed
10.
go back to reference Kranenburg L, Zuidema W, Weiman W, IJzermans J, Passchier J, Hilhorst M, Busschbach J: Postmortal or living related donor: preferences of kidney patients. Transplant Int. 2005, 19: 519-523.CrossRef Kranenburg L, Zuidema W, Weiman W, IJzermans J, Passchier J, Hilhorst M, Busschbach J: Postmortal or living related donor: preferences of kidney patients. Transplant Int. 2005, 19: 519-523.CrossRef
11.
go back to reference Krueger RA, Casey MA: Focus groups: A practical guide for applied research. 2000, Thousand Oaks: SageCrossRef Krueger RA, Casey MA: Focus groups: A practical guide for applied research. 2000, Thousand Oaks: SageCrossRef
12.
13.
go back to reference Morgan D, Krueger R, King JA: The focus group guidebooks (volume 1–6). 1998, Thousand Oaks: Sage publicationsCrossRef Morgan D, Krueger R, King JA: The focus group guidebooks (volume 1–6). 1998, Thousand Oaks: Sage publicationsCrossRef
14.
15.
go back to reference Seale C, Silverman D: Ensuring rigour in qualitative research. Eur J Public Health. 1997, 7: 379-84. 10.1093/eurpub/7.4.379.CrossRef Seale C, Silverman D: Ensuring rigour in qualitative research. Eur J Public Health. 1997, 7: 379-84. 10.1093/eurpub/7.4.379.CrossRef
16.
go back to reference van der Meer V, van Stel HF, Detmar SB, Otten W, Sterk PJ, Sont JK: Internet-based self-management offers an opportunity to achieve better asthma control in adolescents. Chest. 2007, 132: 112-9. 10.1378/chest.06-2787.CrossRefPubMed van der Meer V, van Stel HF, Detmar SB, Otten W, Sterk PJ, Sont JK: Internet-based self-management offers an opportunity to achieve better asthma control in adolescents. Chest. 2007, 132: 112-9. 10.1378/chest.06-2787.CrossRefPubMed
17.
go back to reference De Vries H, Mudde A: Predicting stage transitions for smoking cessation applying the Attitude-Social Influence-Efficacy model. Psych Health. 1998, 13: 273-282. De Vries H, Mudde A: Predicting stage transitions for smoking cessation applying the Attitude-Social Influence-Efficacy model. Psych Health. 1998, 13: 273-282.
18.
go back to reference De Vries H, Dijkstra M, Kuhlman P: Self-efficacy: the third factor besides attitude and subjective norm as a predictor of behavioral intentions. Health Educ Res. 1988, 3: 273-283. 10.1093/her/3.3.273.CrossRef De Vries H, Dijkstra M, Kuhlman P: Self-efficacy: the third factor besides attitude and subjective norm as a predictor of behavioral intentions. Health Educ Res. 1988, 3: 273-283. 10.1093/her/3.3.273.CrossRef
19.
go back to reference De Vries H, Mudde AN, Leijs I, CHarlton A, Vartiainen E, Buijs G, Clemente MP, Storm H, Gonzalez N, Nebot M, Prins T, Kremers S: The European smoking prevention framework approach (ESA): an example of integral prevention. Health Educ Res. 2003, 18: 611-626. 10.1093/her/cyg031.CrossRefPubMed De Vries H, Mudde AN, Leijs I, CHarlton A, Vartiainen E, Buijs G, Clemente MP, Storm H, Gonzalez N, Nebot M, Prins T, Kremers S: The European smoking prevention framework approach (ESA): an example of integral prevention. Health Educ Res. 2003, 18: 611-626. 10.1093/her/cyg031.CrossRefPubMed
20.
go back to reference Malterud K: Qualitative research: standards, challenges, and guidelines. Lancet. 2001, 358: 483-488. 10.1016/S0140-6736(01)05627-6.CrossRefPubMed Malterud K: Qualitative research: standards, challenges, and guidelines. Lancet. 2001, 358: 483-488. 10.1016/S0140-6736(01)05627-6.CrossRefPubMed
21.
go back to reference Pradel FG, Mullins CD, Bartlett ST: Exploring donors’ and recipients’ attitudes about living donor kidney transplantation. Prog Transplant. 2003, 13: 203-10.CrossRefPubMed Pradel FG, Mullins CD, Bartlett ST: Exploring donors’ and recipients’ attitudes about living donor kidney transplantation. Prog Transplant. 2003, 13: 203-10.CrossRefPubMed
22.
go back to reference Binet I, Bock AH, Vogelbach P, Gasser T, Kiss A, Brunner F, Thiel G: Outcome in emotionally related living kidney donor transplantation. Nephrol Dial Transplant. 1997, 12: 1940-48. 10.1093/ndt/12.9.1940.CrossRefPubMed Binet I, Bock AH, Vogelbach P, Gasser T, Kiss A, Brunner F, Thiel G: Outcome in emotionally related living kidney donor transplantation. Nephrol Dial Transplant. 1997, 12: 1940-48. 10.1093/ndt/12.9.1940.CrossRefPubMed
23.
go back to reference Waterman AD, Stanley SL, Covelli T, Hazel E, Hong BA, Brennan DC: Living donation decision making: recipients’ concern and educational needs. Prog Transplant. 2006, 16: 17-23.CrossRefPubMed Waterman AD, Stanley SL, Covelli T, Hazel E, Hong BA, Brennan DC: Living donation decision making: recipients’ concern and educational needs. Prog Transplant. 2006, 16: 17-23.CrossRefPubMed
24.
go back to reference Andersen MH, Bruserud F, Mathisen L, Wahl AK, Hanestad BR, Fosse E: Follow-up interviews of 12 living kidney donors one yr after open donor nephrectomy. Clin Transplant. 2007, 21: 702-709.CrossRefPubMed Andersen MH, Bruserud F, Mathisen L, Wahl AK, Hanestad BR, Fosse E: Follow-up interviews of 12 living kidney donors one yr after open donor nephrectomy. Clin Transplant. 2007, 21: 702-709.CrossRefPubMed
25.
go back to reference Schover LR, Streem SB, Boparai N, Duriak K, Novick AC: The psychosocial impact of donating a kidney: long-term follow-up from a urology based center. J Urol. 1997, 157: 1596-1601. 10.1016/S0022-5347(01)64803-1.CrossRefPubMed Schover LR, Streem SB, Boparai N, Duriak K, Novick AC: The psychosocial impact of donating a kidney: long-term follow-up from a urology based center. J Urol. 1997, 157: 1596-1601. 10.1016/S0022-5347(01)64803-1.CrossRefPubMed
26.
go back to reference Duque JL, Loughlin KR, Kumar S: Morbidity of flank incision for renal donors. Urology. 1999, 54: 796-801. 10.1016/S0090-4295(99)00274-5.CrossRefPubMed Duque JL, Loughlin KR, Kumar S: Morbidity of flank incision for renal donors. Urology. 1999, 54: 796-801. 10.1016/S0090-4295(99)00274-5.CrossRefPubMed
27.
go back to reference Schostak M, Wloch H, Muller M, Schrader M, Christoph F, Offermann G, Miller K: Living donor nephrectomy in an open technique; a long-term analysis of donor outcome. Transplant Proc. 2003, 35: 2096-2098. 10.1016/S0041-1345(03)00677-8.CrossRefPubMed Schostak M, Wloch H, Muller M, Schrader M, Christoph F, Offermann G, Miller K: Living donor nephrectomy in an open technique; a long-term analysis of donor outcome. Transplant Proc. 2003, 35: 2096-2098. 10.1016/S0041-1345(03)00677-8.CrossRefPubMed
28.
go back to reference Giessing M, Reuter S, Schonberger B, Deger S, Tuerk I, Hirte I, Budde K, Fritsche L, Morgera S, Neumayer HH, Loening SA: Quality of life of living kidney donors in Germany: a survey with the Validated Short Form-36 and Giessen Subjective Complaints List-24 questionnaires. Transplantation. 2004, 78: 864-872. 10.1097/01.TP.0000133307.00604.86.CrossRefPubMed Giessing M, Reuter S, Schonberger B, Deger S, Tuerk I, Hirte I, Budde K, Fritsche L, Morgera S, Neumayer HH, Loening SA: Quality of life of living kidney donors in Germany: a survey with the Validated Short Form-36 and Giessen Subjective Complaints List-24 questionnaires. Transplantation. 2004, 78: 864-872. 10.1097/01.TP.0000133307.00604.86.CrossRefPubMed
29.
go back to reference Dahm F, Weber M, Muller B, Pradel FG, Laube GF, Neuhaus T, Cao C, Wüthrich RP, Thiel GT, Clavien PA: Open and laparoscopic living donor nephrectomy in Switzerland: a retrospective assessment of clinical outcomes and the motivation to donate. Nephrol Dial Transplant. 2006, 21: 2563-2568. 10.1093/ndt/gfl207.CrossRefPubMed Dahm F, Weber M, Muller B, Pradel FG, Laube GF, Neuhaus T, Cao C, Wüthrich RP, Thiel GT, Clavien PA: Open and laparoscopic living donor nephrectomy in Switzerland: a retrospective assessment of clinical outcomes and the motivation to donate. Nephrol Dial Transplant. 2006, 21: 2563-2568. 10.1093/ndt/gfl207.CrossRefPubMed
30.
go back to reference Minz M, Udgiri N, Sharma A, Heer MK, Kashyap R, Nehra R, Sakhuja V: Prospective psychosocial evaluation of related kidney donors: Indian perspective. Transplant Proc. 2005, 37: 2001-2003. 10.1016/j.transproceed.2005.03.110.CrossRefPubMed Minz M, Udgiri N, Sharma A, Heer MK, Kashyap R, Nehra R, Sakhuja V: Prospective psychosocial evaluation of related kidney donors: Indian perspective. Transplant Proc. 2005, 37: 2001-2003. 10.1016/j.transproceed.2005.03.110.CrossRefPubMed
31.
go back to reference Troppmann C, Johnston WK, Pierce JL, McVicar JP, Perez RV: Impact of laparoscopic nephrectomy on donor preoperative decision-making and postoperative quality of life and psychosocial outcomes. Pediatr Nephro. 2006, 21: 1052-1054. 10.1007/s00467-006-0093-7.CrossRef Troppmann C, Johnston WK, Pierce JL, McVicar JP, Perez RV: Impact of laparoscopic nephrectomy on donor preoperative decision-making and postoperative quality of life and psychosocial outcomes. Pediatr Nephro. 2006, 21: 1052-1054. 10.1007/s00467-006-0093-7.CrossRef
32.
go back to reference Neuhaus TJ, Wartmann M, Weber M, Landolt MA, Laube GF, Kamper MJ: Psychosocial impact of living-related kidney transplantation on donors and partners. Pediatr Nephrol. 2005, 20: 205-209. 10.1007/s00467-004-1749-9.CrossRefPubMed Neuhaus TJ, Wartmann M, Weber M, Landolt MA, Laube GF, Kamper MJ: Psychosocial impact of living-related kidney transplantation on donors and partners. Pediatr Nephrol. 2005, 20: 205-209. 10.1007/s00467-004-1749-9.CrossRefPubMed
33.
go back to reference Reimer J, Rensing A, Haasen C, Philipp T, Pietruck F, Franke GH: The impact of living-related kidney transplantation on the donor’s life. Transplantation. 2006, 81: 1268-73. 10.1097/01.tp.0000210009.96816.db.CrossRefPubMed Reimer J, Rensing A, Haasen C, Philipp T, Pietruck F, Franke GH: The impact of living-related kidney transplantation on the donor’s life. Transplantation. 2006, 81: 1268-73. 10.1097/01.tp.0000210009.96816.db.CrossRefPubMed
34.
go back to reference Valapour M, Kahn JP, Bailey RF, Matas AJ: Assessing elements of informed consent among living donors. Clin Transplant. 2011, 25: 185-190. 10.1111/j.1399-0012.2010.01374.x.CrossRefPubMed Valapour M, Kahn JP, Bailey RF, Matas AJ: Assessing elements of informed consent among living donors. Clin Transplant. 2011, 25: 185-190. 10.1111/j.1399-0012.2010.01374.x.CrossRefPubMed
35.
go back to reference Martínez-Alarcón L, Ríos A, Conesa C, Ramírez P: Response to: postmortal or living related donor: preferences of kidney patients. Transplant Int. 2006, 19: 598-9. 10.1111/j.1432-2277.2006.00290.x.CrossRef Martínez-Alarcón L, Ríos A, Conesa C, Ramírez P: Response to: postmortal or living related donor: preferences of kidney patients. Transplant Int. 2006, 19: 598-9. 10.1111/j.1432-2277.2006.00290.x.CrossRef
36.
go back to reference Kranenburg L, Zuidema W, Weimar W, IJzermans J, Passchier J, Hilhorst M, Busschbach J: Postmortal or living related donor: preferences of kidney patients. Authors’ reply. Transplant Int. 2006, 19: 600-10.1111/j.1432-2277.2006.00305.x.CrossRef Kranenburg L, Zuidema W, Weimar W, IJzermans J, Passchier J, Hilhorst M, Busschbach J: Postmortal or living related donor: preferences of kidney patients. Authors’ reply. Transplant Int. 2006, 19: 600-10.1111/j.1432-2277.2006.00305.x.CrossRef
Metadata
Title
Decision making around living and deceased donor kidney transplantation: a qualitative study exploring the importance of expected relationship changes
Authors
Ingrid B de Groot
Karen Schipper
Sandra van Dijk
Paul J M van der Boog
Anne M Stiggelbout
Andrzej G Baranski
Perla J Marang-van de Mheen
the PARTNER-study group
Publication date
01-12-2012
Publisher
BioMed Central
Published in
BMC Nephrology / Issue 1/2012
Electronic ISSN: 1471-2369
DOI
https://doi.org/10.1186/1471-2369-13-103

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