Original Title: État des pratiques : La transplantation d’organes solides – Volet 1 - Portrait de la transplantation cardiaque et pulmonaire 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 and the alternative to cardiac support devices and to dialysis in cases of renal failure. Transplantation is a complex procedure performed on individuals at an advanced stage of a medical condition and requires numerous types of expertise throughout the care continuum (pre-transplant, transplant and post-transplant). In this context, the quality of 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 organ 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 a state-of-practice report aimed, on the one hand, at highlighting the organizational aspects of care and services recognized or recommended in the heart and lung transplantation literature and at comparing them to those at Québec’s designated transplant centres, and secondly, at constructing, using selected variables, a descriptive overview of the use of certain clinical and clinicoadministrative outcomes of the transplantation activities between 2009 and 20181. The goal of this exercise is to support improvements in the management of patients who are waiting for or who have undergone a transplant and that of the quality of heart and lung transplant outcomes in Québec. The mandate was divided into three sections, each presented in a separate state-of-practice report: Section 1) Heart and lung transplantation (the present overview); Section 2) Liver transplantation; and Section 3) Renal and pancreatic transplantation.

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 (often common to all three sections), and few items describing organizational practices in countries or provinces comparable to Québec were identified. No recent guidance documents from Québec were found. Moreover, 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 use of various clear processes to support the different stages of the patient care continuum 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 continuum, and support for patients and their families; • The use of mechanisms and procedures for evaluating and improving the quality of interventions and care. (2. SERVICE ORGANIZATION AND ORGANIZATIONAL PRACTICES AT QUÉBEC'S TRANSPLANT CENTRES): The consultations with Québec’s transplant centres brought to light various structural and organizational arrangements, many of which are consistent with the organizational practices recognized in the literature. The ensuing overall results are reported in the three sections, together with details on the heart and lung transplant programs: • Access to transplantation is protocol-based and centralized, and the referral of potential transplant candidates is supported by the creation of information mechanisms with the clinical teams and memoranda of understanding and initiatives between the transplant centres and regional facilities; • Medical and clinico-administrative management is the responsibility of the medical and surgical directors and coordinators at most of the centres; • The composition of the care teams varies, although they are interdisciplinary. Some centres have teams that include more professionals from various disciplines who are accessible at all times. Depending on the centre, the availability of certain professionals may be limited; • The various in-hospital management processes ‒ admission, preparation and perioperative monitoring, discharge, and support for intra-hospital care coordination ‒ also appear to be well structured and protocol-based; • There is a well-established gradual-transition process enabling young transplant patients to prepare to be transferred to an adult transplant centre for their followup; • A follow-up at the transplant centre during the first year post-transplant is preferred. In the longer term, the follow-up can be provided at a regional hospital or a specialized outpatient clinic, with the support of or jointly with the transplant centre; • Support for patients and their caregivers, which takes various forms, is provided by the transplant centres’ clinical teams from the start of the care process: information, therapeutic education, psychological and psychosocial support, and guidance; • Various monitoring and practice improvement mechanisms are used. They generally concern clinical practices and feedback to professionals. Very few of them involve gathering information from patients; • Most of the centres have a local database for gathering data on transplant activities and transplant patients, but the nature of these data varies from centre to centre and their analysis is not supported or standardized. However, all the transplant centres participate in clinical data sharing at the national or international level. (3. PORTRAIT OF PATIENTS WHO UNDERWENT A HEART OR LUNG TRANSPLANT IN QUÉBEC BETWEEN 2009 AND 2018): Exploring the CADs enabled us to draw a first descriptive portrait of patients who underwent a transplant in Québec between 2009 and 2018: 404 had a heart transplant and 442 had a lung transplant. Despite the limitations of this exercise, particularly with respect to the validity of the clinical information, the following highlights emerged and, when possible, were assessed in light of available international data. Organizational and clinico-administrative data • The demand for heart and lung transplants in Québec and the response to this demand are significant but comparable to what is observed in other Canadian provinces: – Between 2009 and 2018, the annual volume of transplants:  Remained stable in the case of adult heart transplants at about 40 transplants and fluctuated between 0 and 5 transplants for children. The crude recipient rate was 5.5 per million population in 2018, which was comparable to the rates in the other Canadian provinces (which ranged from 3.7 to 6.9);  Nearly doubled in the case of lung transplants, exceeding 50 transplants per year as of 2015. The crude transplant rate of 6.3 per million population in 2018 was also comparable to the pan-Canadian figures (which ranged from 6.0 to 11.4); Clinical data There are many limitations associated with the clinical variables explored in the CADs, such as the validity of the primary and secondary diagnoses recorded in the charts and then in MED-ECHO, and the completeness of the data related to the medical procedures performed during hospitalization. The following should be considered, with caution: • Dilated and ischemic cardiomyopathies are the most frequent indications for a heart transplant in adults in Québec, while interstitial lung disease, chronic obstructive pulmonary disease and cystic fibrosis are the predominant indications for a lung transplant, which is also noted in the international literature; – In pediatrics, the most frequent indication for a heart transplant appears to be dilated cardiomyopathy; (4. CHALLENGES AND OPPORTUNITIES): Certain organizational and population-related concerns and challenges were identified when examining the literature data or registry data or were raised during the consultations with clinicians and the heart and lung transplant program directors. The analysis of these data also shows a high degree of similarity between the various organ transplant programs, which is observed in the other two sections of the project (liver, and kidney and pancreas). A first potential issue raised at the outset of the project concerned access to transplantation. The geographic distribution of the heart transplant centres, which are mainly concentrated in the province's two major urban centres, could raise the issue of access to transplantation for patients in certain health and social services regions. However, the distribution of the patients who received a transplant compared to the distribution of the Québec population by health and social services region does not generally suggest that certain regions are significantly over- or under-represented. However, this assessment is subject to numerous limitations that could not be examined during this exercise. For example, a careful examination of the population’s needs could contribute to a discussion of the relevance of instituting policies to support equity of access. Furthermore, according to the clinicians consulted, delays in waiting list enrolment can hinder access to transplantation. These delays can be caused by late referral to a transplant centre, transplantation selection criteria that are poorly known or understood by requesting physicians, or delays in assessment at certain transplant centres. These delays and even failing to give a referral for a transplant assessment can lead to serious complications or death in potential candidates. Increased collaboration between requesting facilities and the transplant centres and raising the care teams’ awareness could be helpful. Limited access to certain care and services due to scarcity or limited availability of resources ‒ for example, operating room nurses, respiratory therapists, physiotherapists, and psychosocial workers ‒ 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 be more common during post-transplant patient follow-ups, particularly joint follow-ups between a transplant centre 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 clinicoadministrative outcomes of heart and lung transplantation activities in Québec are, on the whole, comparable to those obtained in other countries or provinces similar to Québec. 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. It would also be of interest to examine the clinico-administrative data collected during the years of the COVID-19 pandemic in order to assess its impact on transplantation activities. The findings from the exploration of the CADs for the purposes of this descriptive overview, and those concerning hepatic, renal and pancreatic transplantation, will be the subject of a future publication. Lastly, 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 elaborate update of the present overview.

Authors' methods: For the purposes of this mandate, the scientific and grey literature (from 2009 to 2021) were reviewed to identify the current organizational practices in countries or provinces comparable to Québec. The websites of the health authorities in various countries and Canadian provinces and the websites of professional associations and bodies 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. The practice overview of Québec’s transplant centres was constructed from data in Québec’s clinic-administrative databases (CADs), a questionnaire (common to all three sections), and consultations with clinicians from the different designated heart (McGill University Health Centre - Royal Victoria Hospital and Montreal Children's Hospital, Montreal Heart Institute, Institut universitaire de cardiologie et de pneumologie de Québec, and Centre hospitalier universitaire Sainte-Justine) and lung (Centre hospitalier de l'Université de Montréal) transplant centres and with patients.

Project Status: Completed

URL for project: https://www.inesss.qc.ca/en/publications/publications/publication/la-transplantation-dorganes-solides-volet-1-portrait-de-la-transplantation-cardiaque-et-pulmonaire-au-quebec.html

Year Published: 2022

URL for published report: https://www.inesss.qc.ca/en/publications/publications/publication/la-transplantation-dorganes-solides-volet-1-portrait-de-la-transplantation-cardiaque-et-pulmonaire-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 Quebec