Original Title: État des pratiques : La transplantation d’organes solides – Volet 3 - Portrait de la transplantation rénale et pancréatique au Québec

Authors' objectives: Organ transplantation is the gold standard or last-resort treatment option capable of improving survival in patients diagnosed with end-stage organ failure. It is also an alternative to cardiac support devices and dialysis in renal failure cases. Transplantation is a complex procedure performed in individuals at an advanced stage of a medical condition. Numerous types of expertise are required before, during, and after the intervention, and the quality of the care and the clinical outcomes depend on several structural and organizational parameters. In recent years, much thought has been given and work done to improve the organization of donation and transplant services in Québec, including the development of organ allocation protocols. However, the current picture of organ transplantation activities and their outcomes is not clearly known, which is hindering an assessment of the entire donation and transplantation care and services continuum. At the request of the Ministère de la Santé et des Services sociaux (MSSS), the Institut national d'excellence en santé et en services sociaux (INESSS) has prepared state-of-practice reports aimed, on the one hand, at highlighting the organizational aspects of care and services recognized or recommended in the transplantation literature and at comparing them to those in place at Québec’s designated transplant centers, and secondly, at constructing, using selected variables, a descriptive overview of the use of certain clinical and clinical-administrative outcomes of the transplantation activities between 2009 and 2018 . This exercise aims to improve the management of patients who are waiting for or who have undergone a transplant and the quality of renal and pancreatic transplant outcomes in Québec. The mandate is divided into three sections, each presented in a separate state-of-practice report: 1) Heart and lung transplantation; 2) Liver transplantation; and 3) Renal and pancreatic transplantation (the present overview).

Authors' results and conclusions: RESULTS: (#1 GUIDANCE DOCUMENTS): A limited number of guidance documents published by health authorities, professional associations or organizations, and organizations in the field of transplantation, and few items describing organizational practices in jurisdictions comparable to Québec were identified. No recent guidance documents from Québec were found. Nonetheless, even though most of the guidance documents identified are based on expert consensus, sometimes supported by a more or less extensive literature review, one does find certain structural elements and organizational processes about which there seems to be a consensus in the organ transplantation community (this across all three sections): • A medical director, a transplant coordinator, and a qualified interdisciplinary team on site, and the availability of adequate physical and technological resources. • The implementation of various clear processes to support the different stages of the patient care trajectory at various times: during the waiting period (clinical assessment, ongoing information); during hospitalization for the transplant (admission, preoperative assessment, interdisciplinary follow-up, patient education, discharge, and transfer); and after hospital discharge (intra- and inter-institutional follow-up). • Support for care coordination and continuity throughout the care trajectory, and support for patients and their families. • The putting in place of mechanisms and procedures for evaluating and improving quality. (#2 SERVICE ORGANIZATION AND ORGANIZATIONAL PRACTICES AT QUÉBEC'S TRANSPLANT CENTERS): The consultations with Québec’s transplant centers brought to light various structural and organizational arrangements that are in line with the practices recognized in the literature. The ensuing overall results are reported in the three state-of-practice reports, with a few details on the renal and pancreatic transplant programs reported as well: • Access to transplantation is protocol-based and centralized, and the referral of potential transplant candidates is supported using information mechanisms for the clinical teams and memoranda of understanding and initiatives between the transplant centers and regional facilities. • At most of the centers, medical, clinical, and administrative management is the responsibility of medical and surgical directors with expertise in nephrology and coordinators. • The care teams are generally interdisciplinary and include medical specialists in renal and pancreatic transplantation and nephrologists. Certain centers may have teams that include more professionals from various disciplines who are always accessible. Depending on the center, the availability of certain professionals may be limited. • The various in-hospital management processes (admission, preparation, and perioperative monitoring, discharge, and support for in-hospital care coordination) also appear to be well structured and protocol-based. (#3: PORTRAIT OF PATIENTS WHO UNDERWENT A KIDNEY OR PANCREAS TRANSPLANT IN QUÉBEC BETWEEN 2009 AND 2018): Exploring the CADs enabled us to draw a first descriptive portrait of the patients who underwent a kidney or pancreas transplant in Québec between 2009 and 2018 (kidney transplant: 2885; pancreas transplant: 94). Despite the limitations of this exercise, particularly with regard to the validity of the clinical data, the following highlights emerged and, when possible, were compared to the available national and international data. (#4: LIMITATIONS OF THE VARIABLES IN THE CDAs): There are many limitations regarding the clinical variables explored in the CADs, such as the indications for transplantation and complications (among others, the validity of the primary and secondary diagnoses and the completeness of the medical procedures performed during hospitalization, information recorded in the patients’ charts and subsequently in MED-ÉCHO), with the result that these variables should be considered with caution. Although further analysis would have been desirable, this overview provides a basis for assessing the diversity of the clinical practices and examining their impact on certain factors or attributes associated with the patient or organ donation. This information can guide efforts to maintain and develop the quality of transplant care and services. (#5: ISSUES, CHALLENGES, AND OPPORTUNITIES): Certain organizational and population-level concerns and challenges were identified when examining the literature data and registry data or were raised during the consultations with clinicians and the kidney and pancreas transplant program directors. The analysis of these data shows strong similarity across the different organ transplant programs, which can be seen in the other two transplantation overviews: Section 1 (heart and lung) and Section 2 (liver). One potential issue identified at the start of this project concerns access to transplantation. The geographic distribution of the kidney and pancreas transplant centers (located, essentially, in three main urban centers in Québec) could, in fact, raise the question of access to a transplant for patients in certain health and social services regions. The distribution of the patients who received a transplant compared to that of the Québec population by health and social services region does not, however, generally indicate that certain regions are significantly over- or underrepresented. However, this assessment has numerous limitations that could not be examined in this report. Among other improvement measures, a careful examination of the population’s needs could contribute to the discussion on the relevance of implementing policies to support equity of access. Furthermore, according to the clinicians consulted, wait-listing delays can hinder access to a transplant. They can be caused by a delayed referral to a transplant centre or a delay in following up on the necessary tests stemming from a medical evaluation visit. These delays and even failure to give a referral for an assessment of the need for a transplant can lead to serious complications or death in potential candidates. Limited access to certain care and services due to gaps in resources or to the limited availability of certain resources is another issue that was identified as affecting the continuity of care and the timely response to certain needs of patients and their families. Potential continuity issues seem to affect the post-transplant patient follow-ups more, particularly joint follow-ups between a transplant center and a regional hospital. The timely provision (even in real-time) of relevant information concerning the patient’s condition, follow-up needs, and test results was one of the concerns raised by the clinicians who were consulted. CONCLUSION: Despite a number of limitations, this initial Québec overview suggests that the outcomes of renal and pancreatic transplantation activities in Québec are, on the whole, comparable to those obtained in similar jurisdictions. These data will serve to guide the discussion regarding the implementation and ranking of variables of interest for monitoring and assessing the quality of transplant program activities. The findings from the exploration of the CADs for the purposes of this descriptive overview (and those concerning heart, lung, and liver transplants) will be the subject of a future publication. In addition, work by the Canadian Institute for Health Information (CIHI) on the monitoring and optimization of transplantation activities ‒ in which certain Québec experts are participating ‒ is also underway with a view to proposing quality monitoring indicators. All of these initiatives will eventually lead to a more complete update of the present state-of-practice report.

Authors' methods: The scientific and grey literature (from 2009 to 2021) were reviewed to identify the current organizational practices in jurisdictions comparable to Québec. The websites of the health authorities in different countries and Canadian provinces and the websites of professional associations and bodies and those in the field of transplantation were consulted. Countries that have an action plan for the organization of solid organ transplantation care and services, that have developed transplantation care policies, or that have put mechanisms in place to evaluate transplantation care performance and strategies were targeted. Data were grouped into three broad categories (based on the conceptual model of quality-of-care assessment proposed by Donabedian [1988]): 1) structural elements, 2) process elements, and 3) outcomes. The practice overview of Québec’s transplant centers was constructed from data in Québec’s clinical-administrative databases (CADs), an information-gathering questionnaire (for all three sections), and consultations with clinicians from the different designated kidney and pancreas transplant centers (Centre hospitalier de l’Université de Montréal [CHUM], Centre hospitalier universitaire [CHU] de Québec – Université Laval – Hôtel-Dieu de Québec, Centre hospitalier de l’Université de Sherbrooke [CHUS] – Hôpital Fleurimont, CHU Sainte-Justine, Hôpital Maisonneuve-Rosemont [HMR]), and with patients and caregivers.

Project Status: Completed

URL for project: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/portrait-de-la-transplantation-dorganes-solides-au-quebec.html

Year Published: 2022

URL for published report: https://www.inesss.qc.ca/publications/repertoire-des-publications/publication/portrait-de-la-transplantation-dorganes-solides-au-quebec.html

English language abstract: An English language summary is available

Publication Type: Other

Country: Canada

Province: Quebec

Organisation Name: Institut national d'excellence en sante et en services sociaux

Contact Address: L'Institut national d'excellence en sante et en services sociaux (INESSS) , 2021, avenue Union, bureau 10.083, Montreal, Quebec, Canada, H3A 2S9;Tel: 1+514-873-2563, Fax: 1+514-873-1369

Contact Name: demande@inesss.qc.ca

Contact Email: demande@inesss.qc.ca

Copyright: Gouvernement du Québec