Reducing barriers to living donor kidney transplanta5on in Ontario adap5ng the Explore Transplant Educa5on Program

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1 Reducing barriers to living donor kidney transplanta5on in Ontario adap5ng the Explore Transplant Educa5on Program Istvan Mucsi University Health Network, Toronto, Ontario, Canada Renal Transplant Symposium 2016

2 Disclosure The Explore Transplant Ontario adaptadon project received unrestricted educadonal support from Astellas Pharma Canada Renal Transplant Symposium 2016

3 Why kidney transplant; why living donor kidney transplant DO WE HAVE A PROBLEM?? PotenDally modifiable barriers to KT and LDKT Psychosocial barriers Ethnocultural barriers Helping padents consider transplant educa5on Explore Transplant AdapDng Explore Transplant Explore Transplant Ontario Renal Transplant Symposium 2016

4 CMAJ November 8, (10) CST Consensus Guidelines on Kidney Transplant, CMAJ Renal Transplant Symposium 2016

5 (TransplantaDon 2016;100: ) hqp://ichoosekidney.emory.edu/ Renal Transplant Symposium 2016

6 (TransplantaDon 2016;100: ) hqp://ichoosekidney.emory.edu/ Renal Transplant Symposium 2016

7 Projected life expectancy ater ESRD onset by recipient age and treatment modality Renal Transplant Symposium 2016 Schold J D, and Meier-Kriesche H CJASN 2006;1:

8 Renal Transplant Symposium 2016 American Journal of Transplanta5on 2008; 8: 58 68

9 Ø According to the latest available data, 90.8% and 81.4% of kidneys transplanted into adults from living and deceased donors, respecdvely, were s5ll func5oning at least 5 years ater transplant. Ø According to the latest available data, 43.2% of pa5ents on dialysis treatments survived at least 5 years (8398 pa5ents). Ø WL = 3,377 pa5ents Ø Of the 20,690 padents on dialysis, more than three-quarters were receiving insdtudonal hemodialysis, the most expensive treatment opdon Renal Transplant Symposium 2016

10 Number of Kidney Transplants by Donor Type, Adult (18+), 2005 to Deceased Living Source: Canadian Organ Replacement Register, 2015, CIHI Renal Transplant Symposium 2016

11 Renal Transplant Symposium 2016

12 Adult (18+) Living Donor Kidney Transplants by Year and Province, 2005 to Ont. B.C. Alta. Que. N.S. Man. Sask Source: Canadian Organ Replacement Register, 2015, CIHI Renal Transplant Symposium 2016

13 Renal Transplant Symposium 2016 Lancet 2015; 385:

14 American Journal of Transplanta5on 2014; 14:

15 Renal Transplant Symposium 2016 American Journal of Transplanta5on 2014; 14:

16 Cases 68 yo inuit male, living in Mo x 18 mos on HD potendal live donor; T2DM, PVD, CAD 65yo male, on HD; t2dm, HCV failed IFN; 35 yo cree female; on HD x 1 yr; T2DM, BMI yo male on HD x2 yrs; T2DM, CAD, BMI 41; AC 145 cm; 38 yo AA female on HD x 18mos; SSD; stroke 4 mos ago; OFO 40 yo AA female, on HD x3 yrs; HIV+; previous infs;

17 35 yo, African Canadian male ESKD due to GN On PD x 3 yrs, recently switched to HD No major comorbidides Lives with common law partner, stable reladonship Recurrent problems with non-adherence to dialysis, drug seeking behavior, use of recr. drugs, narcodc analgesics Non-adherence to HD, no-show for several appointments Pt. was declined to be waitlisted he accepted

18 Ms C 15 oct 61 yo F ESKD, typ1 DM PD since 2009 T1DM, HTN, DLP ReDnopathy, neuropathy, gastroparesis CAD, AMI 2002 AMI 2010, PCI CABG 2012 ECD 15 oct IGF NSTEMI post op D/C with creat N

19 77 yo AA M ESKD since 2011 T2 DM, HTN CAD no MI ReDnopathy legally blind GERD Prostate CA prostatectomy in 2006 Lives with younger wife Good support Wants to be free from dialysis, wants to travel Mr T 15 oct ECD/DCD 15 oct DGF d/c with creat 200, declining Some ongoing issues, creat cca 160, says it is beier now than before; made his first trip to visidng family in Florida in April

20 One word of caudon: increasing kidney transplantadon and living donor kidney transplantadon Increasing the recipient and donor pool SAFELY SAFELY This can not be successful without rethinking and improving post-transplant and post-dona5on care Renal Transplant Symposium 2016

21 Psychosocial barriers Mental Health issues are frequent in padents with End Stage Renal Disease ~40% of padents on dialysis experience depression (Szeifert 2011, Cukor 2007) Associated with mortality and poor quality of life (Kimmel PL 2000, Lopes AA 2002) RelaDvely neglected May be a potendal barrier to transplantadon Renal Transplant Symposium 2016

22 Courtesy of G. Rodin Renal Transplant Symposium 2016

23 Nephrol Dial Transplant (2012) 27: % of WL padents had high risk of depression Renal Transplant Symposium 2016

24 Referral to transplant WU comple5on, by history of psychiatric disorders Univariable hazard ra5o (95% CI) : 0.81 (0.70, 0.93) Renal Transplant Symposium 2016!

25 Mul5variable adjusted likelihood of comple5ng the transplant WU within two years ater referral for pa5ents with the history of psychiatric disorders or non-adherence Mental Health History of Psychiatric disorder (Yes vs. No) Hazard Ra5o (95% C.I.) 0.81 (0.70, 0.95) Adjusted for: age, sex, marital status, English communicadon, race, Ontario MarginalizaDon Index and the history of : history of diabetes, coronary artery disease/ myocardial infarcdon, heart failure, stroke and peripheral vascular disease, chronic lung disease, or non-skin cancer Renal Transplant Symposium 2016

26 Biopsy-proven acute rejec5on by history of MH Biopsy-proven acute rejec5on by history of NA Cumulative BPAR probability History of MH disorders No history of MH disorders Log Rank P = 0.15 Cumulative BPAR probability History of non-adherence No history of non-adherence Log Rank P = Number at risk No history of MH disorders History of MH disorders Months post-transplant Number at risk No history of non-adherence History of non-adherence Months post-transplant

27 Mul5variable adjusted likelihood of BPAR for pa5ents with a history of MH or NA Variables History of mental health disorder (Yes versus No) History of non-adherence (Yes versus No) Hazard Ra5o (95% C.I.) 1.31 (0.87, 1.99) 1.26 (0.76, 2.09) Adjusted for: age, sex, race, donor type, ECD, DGF, HLA mismatch and history of diabetes

28 Total grat failure by history of MH Total grat failure by history of NA Cumulative total graft failure History of MH disorders No history of MH disorders Log Rank P = 0.72 Cumulative total graft failure History of non-adherence No history of non-adherence Log Rank P = Number at risk No history of MH disorders History of MH disorders Months post-transplant Number at risk No history of non-adherence History of non-adherence Months post-transplant

29 Mul5variable adjusted likelihood of TGF for pa5ents with a history of MH or NA Variables History of mental health disorder (Yes versus No) History of non-adherence (Yes versus No) Hazard Ra5o (95% C.I.) 0.96 (0.56, 1.64) 1.65 (0.89, 3.08) Adjusted for: age, sex, race, donor type, ECD, DGF, HLA mismatch and history of diabetes

30 Ethnocultural barriers Renal Transplant Symposium 2016

31 Renal Transplant Symposium 2016 American Journal of Transplanta5on 2013; 13:

32 Renal Transplant Symposium 2016 Kidney InternaDonal (2007) 72, ;

33 Renal Transplant Symposium 2016 PLOS ONE DOI: /journal.pone July 31, 2015

34 Race/ethnicity access to transplant, LDKT Transplant LDKT Cumulative transplantation probability Number at risk White Black East Asian Indo Asian Other/unknown Log Rank P < White East Asian Other/unknown Black Indo Asian Years from referral date Cumulative transplantation probability Number at risk White Black East Asian Indo Asian Other/unknown Log Rank P < White Black East Asian Indo Asian Other/unknown Years from referral date Renal Transplant Symposium 2016

35 LD transplant versus having a poten5al LD at referral Renal Transplant Symposium 2016

36 Psychosocial and ethno-cultural barriers to living donor kidney transplanta5on I. Mucsi, A.D. Waterman, S.J. Kim, J.S. Zaltzman, K.P. Fung, D. Buchman, R. Nissim and M. Novak This study will invesdgate readiness to accept living donor kidney transplant (LDKT) and also psychosocial and ethnocultural barriers to accepdng LDKT among padents with chronic kidney disease (CKD) referred for pre-transplant assessment

37 CAPTURING THE PATIENT PERSPECTIVE ASSESSING PATIENT REPORTED MEASURES

38

39

40

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42 Study Questionnaires TRANSPLANT DECISION MAKING SURVEY ILLNESS INTRUSIVESNESS RATING SCALE EXPERIENCE OF CLOSE RELATIONSHIP SCALE KIDNEY DISEASE QUALITY OF LIFE FATIGUE SEVERITY SCALE (FSS) MOS SOCIAL SUPPORT SHORT LITERACY SURVEY SOCIO-DEMOGRAPHIC & CULTURAL QUESTIONNAIRE PATIENT RESPONSE QUESTIONNAIRE DART (PHQ-9, GAD, ESAS, SDI)

43

44 Did you find the task of comple5ng the ques5onnaires ON THE TABLET COMPUTER too difficult or 5ring? Did you need someone s help to complete the ques5onnaire? % % No Yes 0 Not at all Very liile Somewhat A great extent Someone completed it for me

45 Sample Question from DART (PHQ-9, GAD, ESAS, SDI)

46 Propor5on of pa5ents with distress (n=64) % Depression Anxiety Social difficuldes Any distress

47 Factors associated with distress (any)

48 Tx knowledge vs having a living donor iden5fied Tx knowledge vs LD readiness 100% 80% 60% % % 40% LD yes LD no 20% 100% 80% 60% 40% 20% LD late LD early 0% Tx knowledge low Tx knowledge high 0% Tx knowledge low Tx knowledge high

49 Tx knowledge vs LD donor iden5fied

50 Reducing barriers to living donor kidney transplanta5on in Ontario adap5ng the Explore Transplant Educa5on Program

51 Road to Transplant Requires: Learn about transplant as an opdon Begin evaluadon (be idendfied and accept) Aiend transplant appointments Get listed for transplant Complete yearly re-evaluadon Find a matching kidney Receive a deceased or living donor transplant Renal Transplant Symposium 2016

52 J Am Soc Nephrol 25: ccc ccc, doi: /ASN Renal Transplant Symposium 2016

53 Renal Transplant Symposium 2016 Clin J Am Soc Nephrol : ccc ccc, doi: /CJN

54 Renal Transplant Symposium 2016 TransplantaDon 2014;00: 00Y00

55 Transplant Education Practices in Dialysis Centers Orally recommend patients learn more about transplant themselves Providers engaging in this practice: (N=1544) 72% Orally recommend being evaluated for transplant 69% Refer patients to an external transplant educational program 44% Distribute transplant center phone numbers 37% Detailed discussion about advantages/risks of DDKT 21% Detailed discussion about advantages/risks of LDKT 21% Renal Transplant Symposium 2016

56 What is Explore Transplant? Comprehensive education program that helps kidney patients make informed transplant decisions Video, print resources with patient and donor stories Discussion of risks/benefits of transplant and living donation Individually-tailored conversations based on what is important to patient Educational materials for dialysis patients, family members & living donors Renal Transplant Symposium 2016

57 Explore Transplant Ontario Adapta5on Review, update and adapt Explore Transplant content to Canadian healthcare system Include Ontario physicians, padents and living donors in videos Renal Transplant Symposium 2016

58 Engagement from all 6 Ontario transplant programs Renal Transplant Symposium 2016

59 Renal Transplant Symposium 2016

60 Renal Transplant Symposium 2016

61 Renal Transplant Symposium 2016

62 Renal Transplant Symposium 2016

63 Renal Transplant Symposium 2016

64 Renal Transplant Symposium 2016

65 Renal Transplant Symposium 2016

66 Next steps Pilot training MAY 10, UHN Pilot study of ETO MSH-UHN AMO Innova5on fund Provincial implementadon study (Dr. A. Garg) of a muldfaceted intervendon to increase living donor kidney transplant SPOR-CAN- SOLVED-CKD Renal Transplant Symposium 2016

67 Renal Transplant Symposium 2016

68 Also special thanks to the dialysis and transplant professionals for their contribu5on from: Kidney FoundaDon of Canada Kingston General Hospital, Kingston, Ontario London Health Sciences Centre, London, Ontario St. Joseph`s Healthcare, Hamilton, Ontario St. Michael`s Hospital, Toronto, Ontario The Oiawa Hospital, Oiawa, Ontario University Health Network, Toronto, Ontario Renal Transplant Symposium 2016

69 Renal Transplant Symposium 2016

70 Special thanks for their help with the management of the project: Ms. Dorothy Wong Ms. Heather Ford Ms. Rita Kruger Ms. Wilma Aranha Mr. Bas de Beer Mr. Alexander Gluhushkin and Mr. Anthony Olsen Students of my research team Renal Transplant Symposium 2016

71 Special thanks to : Dr. S.J. Kim, Ms. Yanhong Li, Mr. Olusegun Famure Ms. Dorothy Wong Ms. Heather Ford Current and past students in my group: Aarushi Bansal Amanda Sissons Candice Richardson Dmitri Belenko Eleanor Warsmann Evan Tang Eszter Mucsi Franz Marie Gumabay Kefan Bei Luca UgenD Luke Dingwell Michael Jeanneie Nathaniel Edwards Priscilla Yung Sarah Cao Yalinie Kulandaivelu

72 Renal Transplant Symposium 2016

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