Top

Published in:

Open Access 01-12-2015 | Research article

Perceptions about hemodialysis and transplantation among African American adults with end-stage renal disease: inferences from focus groups

Authors: Megan L Salter, Komal Kumar, Andrew H Law, Natasha Gupta, Kathryn Marks, Kamna Balhara, Mara A McAdams-DeMarco, Laura A Taylor, Dorry L Segev

Published in: BMC Nephrology | Issue 1/2015

Abstract

Background

Disparities in access to kidney transplantation (KT) remain inadequately understood and addressed. Detailed descriptions of patient attitudes may provide insight into mechanisms of disparity. The aims of this study were to explore perceptions of dialysis and KT among African American adults undergoing hemodialysis, with particular attention to age- and sex-specific concerns.

Methods

Qualitative data on experiences with hemodialysis and views about KT were collected through four age- and sex-stratified (males <65, males ≥65, females <65, and females ≥65 years) focus group discussions with 36 African American adults recruited from seven urban dialysis centers in Baltimore, Maryland.

Results

Four themes emerged from thematic content analysis: 1) current health and perceptions of dialysis, 2) support while undergoing dialysis, 3) interactions with medical professionals, and 4) concerns about KT. Females and older males tended to be more positive about dialysis experiences. Younger males expressed a lack of support from friends and family. All participants shared feelings of being treated poorly by medical professionals and lacking information about renal disease and treatment options. Common concerns about pursuing KT were increased medication burden, fear of surgery, fear of organ rejection, and older age (among older participants).

Conclusions

These perceptions may contribute to disparities in access to KT, motivating granular studies based on the themes identified.

US Renal Data System. USRDS 2009 Annual Data Reports: Atlas of Chronic Kidney Disease and End-Stage Renal Disease in the United States. Bethesda, MD: National Institutes of Health, National Institutes of Diabetes and Digestive and Kidney Diseases; 2009.

Epstein AM, Ayanian JZ, Keogh JH, Noonan SJ, Armistead N, Cleary PD, et al. Racial disparities in access to renal transplantation--clinically appropriate or due to underuse or overuse? N Engl J Med. 2000;343(21):1537–44. 1532 p preceding 1537.PubMedPubMedCentral

Winkelmayer WC, Glynn RJ, Levin R, Owen Jr W, Avorn J. Late referral and modality choice in end-stage renal disease. Kidney Int. 2001;60(4):1547–54.PubMed

Gadegbeku C, Freeman M, Agodoa L. Racial disparities in renal replacement therapy. J Natl Med Assoc. 2002;94(8 Suppl):45S–54.PubMedPubMedCentral

Powe NR, Melamed ML. Racial disparities in the optimal delivery of chronic kidney disease care. Med Clin North Am. 2005;89(3):475–88.PubMed

Powe NR. To have and have not: Health and health care disparities in chronic kidney disease. Kidney Int. 2003;64(2):763–72.PubMed

Ifudu O, Dawood M, Iofel Y, Valcourt JS, Friedman EA. Delayed referral of black, Hispanic, and older patients with chronic renal failure. Am J Kidney Dis. 1999;33(4):728–33.PubMed

Astor BC, Eustace JA, Powe NR, Klag MJ, Sadler JH, Fink NE, et al. Timing of nephrologist referral and arteriovenous access use: the CHOICE Study. Am J Kidney Dis. 2001;38(3):494–501.PubMed

Hopson S, Frankenfield D, Rocco M, McClellan W. Variability in reasons for hemodialysis catheter use by race, sex, and geography: findings from the ESRD clinical performance measures project. Am J Kidney Dis. 2008;52(4):753–60.PubMed

10.

Ortega T, Ortega F, Diaz-Corte C, Rebollo P, Ma Baltar J, Alvarez-Grande J. The timely construction of arteriovenous fistulae: a key to reducing morbidity and mortality and to improving cost management. Nephrol Dial Transplant. 2005;20(3):598–603.PubMed

11.

Smart NA, Titus TT. Outcomes of early versus late nephrology referral in chronic kidney disease: a systematic review. Am J Med. 2011;124(11):1073–80. e1072.PubMed

12.

Arora P, Kausz AT, Obrador GT, Ruthazer R, Khan S, Jenuleson CS, et al. Hospital utilization among chronic dialysis patients. J Am Soc Nephrol. 2000;11(4):740–6.PubMed

13.

Kazmi WH, Obrador GT, Khan SS, Pereira BJ, Kausz AT. Late nephrology referral and mortality among patients with end-stage renal disease: a propensity score analysis. Nephrol Dial Transplant. 2004;19(7):1808–14.PubMed

14.

Stack AG. Impact of timing of nephrology referral and pre-ESRD care on mortality risk among new ESRD patients in the United States. Am J Kidney Dis. 2003;41(2):310–8.PubMed

15.

Lin CL, Chuang FR, Wu CF, Yang CT. Early referral as an independent predictor of clinical outcome in end-stage renal disease on hemodialysis and continuous ambulatory peritoneal dialysis. Ren Fail. 2004;26(5):531–7.PubMed

16.

Kinchen KS, Sadler J, Fink N, Brookmeyer R, Klag MJ, Levey AS, et al. The timing of specialist evaluation in chronic kidney disease and mortality. Ann Intern Med. 2002;137(6):479–86.PubMed

17.

Vincenti F. A decade of progress in kidney transplantation. Transplantation. 2004;77(9 Suppl):S52–61.PubMed

18.

Kucirka LM, Grams ME, Balhara KS, Jaar BG, Segev DL. Disparities in provision of transplant information affect access to kidney transplantation. Am J Transplant. 2012;12(2):351–7.PubMed

19.

Segev DL, Kucirka LM, Oberai PC, Parekh RS, Boulware LE, Powe NR, et al. Age and comorbidities are effect modifiers of gender disparities in renal transplantation. J Am Soc Nephrol. 2009;20(3):621–8.PubMedPubMedCentral

20.

Vamos EP, Novak M, Mucsi I. Non-medical factors influencing access to renal transplantation. Int Urol Nephrol. 2009;41(3):607–16.PubMed

21.

Stolzmann KL, Bautista LE, Gangnon RE, McElroy JA, Becker BN, Remington PL. Trends in kidney transplantation rates and disparities. J Natl Med Assoc. 2007;99(8):923–32.PubMedPubMedCentral

22.

Thamer M, Hwang W, Fink NE, Sadler JH, Bass EB, Levey AS, et al. U.S. nephrologists' attitudes towards renal transplantation: results from a national survey. Transplantation. 2001;71(2):281–8.PubMed

23.

Klassen AC, Hall AG, Saksvig B, Curbow B, Klassen DK. Relationship between patients' perceptions of disadvantage and discrimination and listing for kidney transplantation. Am J Public Health. 2002;92(5):811–7.PubMedPubMedCentral

24.

Morton RL, Tong A, Howard K, Snelling P, Webster AC. The views of patients and carers in treatment decision making for chronic kidney disease: systematic review and thematic synthesis of qualitative studies. BMJ. 2010;340:c112.PubMedPubMedCentral

25.

Alexander GC, Sehgal AR. Barriers to cadaveric renal transplantation among blacks, women, and the poor. JAMA. 1998;280(13):1148–52.PubMed

26.

Ayanian JZ, Cleary PD, Weissman JS, Epstein AM. The effect of patients' preferences on racial differences in access to renal transplantation. N Engl J Med. 1999;341(22):1661–9.PubMed

27.

Giacomini MK, Cook DJ. Users' guides to the medical literature: XXIII. Qualitative research in health care B. What are the results and how do they help me care for my patients? Evidence-Based Medicine Working Group. JAMA. 2000;284(4):478–82.

28.

Denhaerynck K, Steiger J, Bock A, Schafer-Keller P, Kofer S, Thannberger N, et al. Prevalence and risk factors of non-adherence with immunosuppressive medication in kidney transplant patients. Am J Transplant. 2007;7(1):108–16.PubMed

29.

Waterman AD, Stanley SL, Covelli T, Hazel E, Hong BA, Brennan DC. Living donation decision making: recipients' concerns and educational needs. Prog Transplant. 2006;16(1):17–23.PubMed

30.

Rodrigue JR, Cornell DL, Lin JK, Kaplan B, Howard RJ. Increasing live donor kidney transplantation: a randomized controlled trial of a home-based educational intervention. Am J Transplant. 2007;7(2):394–401.PubMed

31.

Ulin PR, Robinson ET, Tolley EE. Qualitative methods in public health: a field guide for applied research. San Francisco: Jossey-Bass; 2005.

32.

Morgan D. Focus groups as qualitative research. 2nd ed. Thousand Oaks, CA: Sage Publications, Inc; 1996.

33.

Asbury J. Overview of focus group research. Qual Health Res. 1995;5:411–48.

34.

Ros RL, Kucirka LM, Govindan P, Sarathy H, Montgomery RA, Segev DL. Patient attitudes toward CDC high infectious risk donor kidney transplantation: inferences from focus groups. Clin Transplant. 2012;26(2):247–53.PubMed

35.

Herek GM, Capitanio JP, Widaman KF. Stigma, social risk, and health policy: public attitudes toward HIV surveillance policies and the social construction of illness. Health Psychol. 2003;22(5):533–40.PubMed

36.

Gordon EJ, Sehgal AR. Patient-nephrologist discussions about kidney transplantation as a treatment option. Adv Ren Replace Ther. 2000;7(2):177–83.PubMed

37.

Landreneau K, Ward-Smith P. Perceptions of adult patients on hemodialysis concerning choice among renal replacement therapies. Nephrol Nurs J. 2007;34(5):513–9. 525.PubMed

38.

Mehrotra R, Marsh D, Vonesh E, Peters V, Nissenson A. Patient education and access of ESRD patients to renal replacement therapies beyond in-center hemodialysis. Kidney Int. 2005;68(1):378–90.PubMed

39.

Breckenridge DM. Patients' perceptions of why, how, and by whom dialysis treatment modality was chosen. ANNA J. 1997;24(3):313–9. discussion 320–311.PubMed

40.

Ghahramani N, Wang C, Sanati-Mehrizy A, Tandon A. Perception about transplant of rural and urban patients with chronic kidney disease; a qualitative study. Nephrourol Mon. 2014;6(2):e15726.PubMedPubMedCentral

41.

Chuang FP, Novick AC, Sun GH, Kleeman M, Flechner S, Krishnamurthi V, et al. Graft outcomes of living donor renal transplantations in elderly recipients. Transplant Proc. 2008;40(7):2299–302.PubMed

42.

Gill JS, Schaeffner E, Chadban S, Dong J, Rose C, Johnston O, et al. Quantification of the early risk of death in elderly kidney transplant recipients. Am J Transplant. 2013;13(2):427–32.PubMed

43.

Rao PS, Merion RM, Ashby VB, Port FK, Wolfe RA, Kayler LK. Renal transplantation in elderly patients older than 70 years of age: results from the Scientific Registry of Transplant Recipients. Transplantation. 2007;83(8):1069–74.PubMed

44.

Wolfe RA, Ashby VB, Milford EL, Ojo AO, Ettenger RE, Agodoa LY, et al. Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation, and recipients of a first cadaveric transplant. N Engl J Med. 1999;341(23):1725–30.PubMed

45.

Tonelli M, Wiebe N, Knoll G, Bello A, Browne S, Jadhav D, et al. Systematic review: kidney transplantation compared with dialysis in clinically relevant outcomes. Am J Transplant. 2011;11(10):2093–109.PubMed

46.

Meier-Kriesche HU, Kaplan B. Waiting time on dialysis as the strongest modifiable risk factor for renal transplant outcomes: a paired donor kidney analysis. Transplantation. 2002;74(10):1377–81.PubMed

47.

Meier-Kriesche H, Port FK, Ojo AO, Leichtman AB, Rudich SM, Arndorfer JA, et al. Deleterious effect of waiting time on renal transplant outcome. Transplant Proc. 2001;33(1–2):1204–6.PubMed

48.

Tong A, Chapman JR, Israni A, Gordon EJ, Craig JC. Qualitative research in organ transplantation: recent contributions to clinical care and policy. Am J Transplant. 2013;13(6):1390–9.PubMed

Title: Perceptions about hemodialysis and transplantation among African American adults with end-stage renal disease: inferences from focus groups
Authors: Megan L Salter
Komal Kumar
Andrew H Law
Natasha Gupta
Kathryn Marks
Kamna Balhara
Mara A McAdams-DeMarco
Laura A Taylor
Dorry L Segev
Publication date: 01-12-2015
Publisher: BioMed Central
Published in: BMC Nephrology / Issue 1/2015
Electronic ISSN: 1471-2369
DOI: https://doi.org/10.1186/s12882-015-0045-1

ACC 2024 Congress Coverage

Heart Failure Video

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Perceptions about hemodialysis and transplantation among African American adults with end-stage renal disease: inferences from focus groups

Abstract

Background

Methods

Results

Conclusions

ACC 2024 Congress Coverage

Year in Review: Heart failure and cardiomyopathies

Semaglutide benefits people with type 2 diabetes and obesity-related heart failure

Incentivised to exercise

New intervention for STEMI-related cardiogenic shock

» View more highlights on the ACC 2024 congress hub page

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 1/2015

Loss of Dgcr8-mediated microRNA expression in the kidney results in hydronephrosis and renal malformation

The burden of comorbidity in people with chronic kidney disease stage 3: a cohort study

Assessment of arterial stiffness using pulse wave velocity in tacrolimus users the first year post kidney transplantation: a prospective cohort study

Streptococcus uberis and Staphylococcus aureus forefoot and blood stream co-infection in a haemodialysis patient: a case report

Association between medical insurance type and survival in patients undergoing peritoneal dialysis

Epidemiological profile of patients with end stage renal disease in a referral hospital in Cameroon

ACC 2024 Congress Coverage

Year in Review: Heart failure and cardiomyopathies

Semaglutide benefits people with type 2 diabetes and obesity-related heart failure

Incentivised to exercise

New intervention for STEMI-related cardiogenic shock

» View more highlights on the ACC 2024 congress hub page