French Recommendations for a National Competency Framework of Therapeutic Patient Education in Solid Organ Transplantation

THERAPEUTIC EDUCATION AND PATIENT CARE PATHWAY: THE FRENCH EXPERIENCE Therapeutic patient education (TPE) is a patient-centered process, fully integrated in health care, aiming to help patients with chronic disease advancing means of self-care, independence, and adaptation competencies, to maintain or improve their quality of life.1 Uniquely positioned, the French law has rendered TPE as a requirement of patient care since 2009.2 The biomedical model has focused on pathologies and treatments, in a disease management mode targeting mainly the improvement of compliance.1,3 A humanistic biopsychosocial model has recently emerged in France, leading to education approaches centered on the development of psychosocial and adaptation competencies. In this context, a generalist national competency framework for healthcare professionals, helping teams to integrate both biomedical and psychosocial approaches in their TPE programs, has been published by the French health authorities. THE CHALLENGE OF THERAPEUTIC PATIENT EDUCATION IN SOLID ORGAN TRANSPLANTATION By improving transplant patients’ autonomy, TPE aims to optimize successful outcomes, including improved quality of life, better coping with side effects or decreased risk of graft loss.3-7 In this scientific and regulatory context, French transplantation centers should offer a TPE program to all patients. Approximately 5000 organ transplantations are currently performed at 58 centers in France, coordinated by the French Biomedicine Agency. Notably, centers have been challenged by limited funding resources, and geographic disparities have become obvious. In 2018, only 46 centers in 12 regions have been able to offer a program based on diverse competency frameworks established in each of the participating centers that communicate comparable competency and learning objectives. KEY SKILLS FOR SOLID ORGAN TRANSPLANT PATIENTS: THE ADVANTAGES OF A UNIVERSAL COMPETENCY FRAMEWORK TPE cannot be standardized among centers as the concept depends on local specificities and means. Thus, a unique reference competency framework rather than a standardized program may help harmonize existing while establishing new programs. Importantly, a nationally validated competency framework may contribute to upgrading the quality of practices. Although the majority of transplant teams in France are involved in TPE, healthcare professionals need training, and the reference competency framework may help to disseminate a common approach. In addition, evaluating the success of TPE is challenging, as a beneficial impact on both biomedical and psychosocial outcomes is expected. A common reference competency framework is expected to support evaluating the benefits of TPE in everyday practice and during clinical trials. Moreover, and in addition to the French experience, a harmonized competency framework may represent a new and useful tool for the international transplant community, harmonizing objectives when conducting international trials and comparing results in different settings. With that rationale, the French-Speaking Transplantation Society (Société Francophone de Transplantation) suggested a national competency framework in solid organ transplantation. A NATIONAL COMPETENCY FRAMEWORK IN SOLID ORGAN TRANSPLANTATION: THE METIS PROJECT The METIS project, conducted between 2019 and 2021, aimed to elaborate a national competency framework in solid organ transplantation based on the Delphi method.8 A pilot group of 11 experts in the fields of transplantation, TPE, public health, and clinical research was charged to delineate the project and moderate each successive round of the process. An expert panel consisting of 54 physicians, 7 surgeons, 27 nurses, 13 pharmacists, 4 dieticians, 3 sports instructors and physiotherapists, 7 psychologists, and 14 patients originating from 37 adult and pediatric transplantation throughout the country was established. Participating patients had received kidney (n = 8), liver (4), kidney and liver (1), and heart transplants (1). Experts were asked to express their level of agreement about including various propositions into the national competency framework. The same list served as the main thread throughout the process, refined at each round of discussions. Propositions that had received a strong immediate or a relative consensus during 2 sequential rounds were included in the final competency framework. A unique competency framework with relevance to all adult and pediatric recipients of solid organ transplants was considered most relevant by the pilot group. A first series of 76 propositions arose from a brainstorming session based on existing competency frameworks. Consensus was achieved after 3 rounds and 78 experts participated throughout the entire project. The Delphi process led to discarding 2 and adding 8 propositions, generating a framework including 82 adaptation, self-care, and safety competencies, categorized into 6 themes (knowledge about transplantation, experience of transplantation, treatment management, hygienic and dietary measures, monitoring and alerts, daily life) (Table 1). In addition to classical biomedical objectives such as managing treatment or adopting appropriate hygiene and dietary measures, the framework includes a variety of psychosocial skills. Asking for help in case of psychological suffering, socioprofessional or school difficulties, organizing social activities, or having a parenthood project are examples of major emotional, psychosocial, and socioprofessional matters that have been included the competency framework. TABLE 1. - List of Skills Proposed During the METIS Consensus Conference for the Elaboration of a Skills Repository for Therapeutic Patient Education in Adult and Pediatric Solid Organ Transplantation Skill no. Proposals Results by round Decision R1 R3 R1 R2 R3 Knowledge about transplantation Self-care skills 1 1 Knowing and understanding that transplantation is one of the treatments of organ insufficiency A+ A+ Accepted 2 2 Understanding the principles of the surgical procedure of transplantation A? A+ Accepted 3 Understanding the risks of the surgical procedure of transplantationa New item A+ A+ Accepted 3 4 Being able to locate the graft A+ A+ Accepted 4 5 Understanding rejection and being able to explain it A+ A+ Accepted 5 6 Knowing that the graft maya have a limited survival over time A+ A+ Accepted Adaptation skills Self-knowing 6 7 Being able to explain transplantation to relatives (family, friends, colleagues) A+ A+ Accepted 7 8 Understanding whom the graft comes from (deceased donor, living donor) A+ A+ Accepted Experience of transplantation Adaptation skills Being self-confident 8 9 Expressing his/her feelingsa on organ donation (deceased donor, living donor) A+ A+ Accepted 9 10 Accepting the fact of being transplanteda A+ A+ Accepted 10 11 Accepting his/her new image A+ A+ Accepted 11 12 Being able to talk about his/her transplantation with others A+ A+ Accepted 12 13 Being able to talk about his/her transplantation with his/her donor (in case of a living donor) A+ A+ Accepted 14 Being able to inform his/her relatives that they can benefit from therapeutic education sessionsa New item A+ A+ Accepted Adaptation skills Dealing with emotions and stress 13 15 Being able to express his/her difficulties to his/her relatives A+ A+ Accepted 14 16 Being able to express his/her difficulties to the healthcare team A+ A+ Accepted 17 Being able to identify resource persons (close relatives, hospital and outpatient healthcare professionals)a New item A+ A++ Accepted 15 18 Knowing the names of patients associations which can be solicited when necessarya A+ A+ Accepted 16 19 Being able to express his/her fear of rejection and finding the resources when necessary A+ A+ Accepted 17 20 Accepting that graft survival over time is limited A+ A+ Accepted 18 21 Becoming aware ofa the possible complications of transplantation A+ A+ Accepted 19 22 Becoming aware ofa the impact of transplantation on daily life A+ A+ Accepted Treatment management Self-care and adaptation skills Understanding and managing the treatment 20 23 Knowing his/her immunosuppressive treatment A+ A+ Accepted 21 24 Understanding his/her immunosuppressive treatment (antirejection and side effects) A+ A++ Accepted 22 25 Understanding what his/her medications are used for A+ A+ Accepted 23 26 Organizing his/her drug intake (ex: pill organizers) A+ A+ Accepted 24 27 Managing his/her medication stock/avoiding stock shortage A+ A+ Accepted 25 28 Knowing how to store his/her medications in appropriate conditions A+ A+ Accepted Adaptation skills Setting objectives 26 29 Choosing, together with the healthcare team, the modalities of drug intake adapted to his/her daily life and taking into account the constraints related to the drugs (hours of intake) A+ A+ Accepted Adaptation skills Solving problems or particular situations 27 30 Managing his/her immunosuppressive treatment in case of a missed dose A+ A+ Accepted 28 31 Managing his/her immunosuppressive treatment in case of vomiting A+ A+ Accepted 29 32 Knowing how to react when a generic is proposed in an outpatient pharmacy office A+ A+ Accepted 30 33 Adapting drug intake when he/she goes for a meal with a group or at a restaurant A+ A+ Accepted Hygiene and dietary measures Adaptation skills Setting objectives 31 34 Adjusting his/her nutritional objectives (proteins, carbohydrates) A+ A+ Accepted 32 35 Controlling his/hera weight A+ A+ Accepted 33 36 Adjusting his/her sodium and water intake A+ A+ Accepted 34 37 Knowing the effects of alcohol on his/her transplant and health A+ A+ Accepted 38 Considering weaning or discontinuing alcohol consumptiona New item A+ A+ Accepted 39 Knowing the effects of drugs on his/her transplant and healtha New item A+ A++ Accepted 35 40 Adopting some physical activity adapted to his/her health status A+ A+ Accepted 36 41 Knowing the food and situationsa generating a risk of infection A+ A++ Accepted 37 42 Knowing the food interacting with immunosuppressive drugs A+ A+ Accepted 43 Knowing the effects of tobacco on his/her transplant and healtha New item A+ A++ Accepted 38 44 Considering weaning or quitting tobaccoa A+ A+ Accepted Monitoring and alerts Self-care skills Being proactive 39 45 Knowing and understanding the modalities of his/her short- and long-term follow-up A+ A++ Accepted 40 46 Knowing and understanding the objective and modalities of performing biopsies A+ A+ Accepted 47 Knowing and understanding the objective and modalities of complementary analyses New item A+ A++ Accepted 41 48 Knowing and understanding the objective and modalities of therapeutic drug monitoring A+ A+ Accepted 42 49 Knowing and understanding the objective and modalities of dermatologic follow-up A+ A+ Accepted Self-care skills Mastering self-monitoring procedures 43 50 Knowing to weigh him-/herself A+ A+ Accepted 44 51 Knowing to check his/her temperature A+ A+ Accepted 45 52 Knowing how to use the blood pressure monitor and, if possible, reading and copying his/her blood pressure A+ A+ Accepted 46 53 Knowing how to monitor or have a physician monitor his/her skin A+ A++ Accepted 47 54 Knowing how to monitoring his/her FEV1 U? U? Rejected 48 55 Knowing how to monitor his/her capillary glycemia, depending on the pathology A+ A+ Accepted Safety skills Identifying crisis situations and acting accordingly 49 56 Knowing his/her weight objective and alerting if necessary A+ A+ Accepted 50 57 Knowing how to identify fever and alerting if necessary A+ A++ Accepted 51 58 Knowing his/her blood pressure objectives and alerting if necessary A+ A+ Accepted 52 59 Knowing to detect a suspicious cutaneous lesion or a modified nevus and alerting if necessary A+ A+ Accepted 53 60 Knowing his/her blood FEV1 objectives and alerting if necessary A? A? Rejected 54 61 Knowing his/her blood glycemia objectives and alerting if necessary A+ A+ Accepted 55 62 Knowing to read the biologic results important for his/her transplantationa and alerting if necessary A+ A+ Accepted 56 63 Knowing his/her immunosuppressive drug concentration target and alerting if necessary A+ A+ Accepted 57 64 Identifying the signs evocative of graft dysfunction A+ A+ Accepted 58 65 Adopting appropriate actions in case of alert clinical signs (fever, vomiting, diarrhea, cough, dyspnea, urinary burning, edema, jaundice) A+ A++ Accepted 59 66 Understanding the importance of treating complications rapidly A+ A+ Accepted 60 67 Knowing to seek transplant healthcare professionals in case of alert clinical signs A+ A+ Accepted Adaptation skills Solving problems or particular situations 61 68 Knowing to explain his/her health status to healthcare professionals other than the transplant team A+ A+ Accepted 62 69 Daring warn and alert on drug interactions risks in case of a new prescription A+ A+ Accepted 63 70 Identifying possible side effects of drugs A+ A+ Accepted Daily life Self-care skills Asserting rights 64 71 Asserting his/her social rights A+ A+ Accepted Adaptation skills Undertsanding and managing his/her treatment 65 72 Hedging against the risk of infection and having his/her vaccinations up-to-date A+ A++ Accepted 66 73 Knowing the risks of self-medication A+ A++ Accepted 67 74 Knowing the limits and risks and limits of phytotherapy and alternative medicine A+ A+ Accepted 68 75 Understanding the importance of contraception and being informed of the risks of beginning a pregnancy while on immunosuppressive drugsa A+ A++ Accepted Adaptation skills Solving problems or particular situations 69 76 Advising the transplant team of a parental project and preparing a pregnancy A+ A++ Accepted 70 77 Organizing his/her meals and treatment in particular situations (family, friends and professional meetings, going out for meals) A+ A+ Accepted 71 78 Protecting him/herself from the risk of infection when his/her relatives are sick or in case of a sanitary crisis A+ A++ Accepted 72 79 Protecting his/her skin A+ A++ Accepted 73 80 Preparing a travel: informing the transplant team, organizing his/her treatment (stock, conservation, transportation), organizing drug intake (journey, time difference), health insurance, vaccination A+ A+ Accepted 74 81 Daring ask for help in case of social or economic problems A+ A+ Accepted 75 82 Daring ask for help in case of school problems A+ A+ Accepted 76 83 Daring ask for help in case of psychological problems or bad experience of the transplantationa A+ A+ Accepted 84 Being able, if necessary, to communicate on his/her affective or sexual life New item A+ A++ Accepted Bold highlights skills considered appropriate, with a strong agreement between experts.aItalics highlights skills added or reworded between round 1 and round 2.?, uncertain agreement; +, relative agreement between experts; ++, strong agreement between experts; A, appropriate; R, round; U, uncertain. IMPLEMENTATION OF THE NATIONAL COMPETENCY FRAMEWORK This METIS project implemented a unique, national competency framework for TPE in transplant patients and will be disseminated for implementation in all French transplantation centers. The framework includes a wide variety of self-care, safety, and adaptation skills related to transplantation, treatment, and follow-up modalities. By addressing psychosocial and emotional issues, the framework will help healthcare teams to support patients in managing their life after transplantation, thus contributing to improved outcomes. TPE should be based on a holistic approach and be offered during early and late stages posttransplantation.9 Therefore, timing relative to transplantation will have to be defined for each skill, and the competency framework will be combined with a user guide facilitating its effective utilization. As a next step, the framework will be submitted to the French Health Authorities and Agencies to assist in its implementation. CONCLUSION We present the first national competency framework for TPE. This framework, established by a group of experts representing patient and providers, is of significant relevance in solid organ transplantation, as it is expected to (i) aid transplantation teams in constructing new or implementing existing programs; (ii) contribute to harmonizing TPE programs and learning objectives; (iii) contribute to upgrading the quality of patient care; and (iv) help conduct multicenter clinical trials on TPE. ACKNOWLEDGMENTS We thank all the experts for their participation in this consensus conference: Teresa Antonini, Nadia Arzouk, Carole Ayav, Louise Barbier, Karine Barelle, Hélène Barraud, Guillaume Baudry, Marina Bellet, Cindy Blondeau, Frédérique Bocquentin, Olivier Boillot, Marion Bolumar, Karim Boudjema, Marie Bourgeois, Cyril Breuker, Eric Buleux, Vincent Bunel-Gourdy, Fanny Buron, Karine Carrie, Françoise Chouzet, Filomena Conti, Michel Coulomb, Lionel Couzi, Alain Dabadie, Chloé Danet, Isabelle Danner-Boucher, Marilyne Debette-Gratien, Dominique Debray, Tristan Degot, Xavier Demant, Sébastien Dharancy, Agnès Didier, Stéphanie Domenge, Anne Dory, Jérôme Dumortier, Eric Epailly, Isabelle Eraud, Isabelle Etienne, Sandra Gaboriau, Florentine Garaix, Cyril Garrouste, Emmanuel Gastaud, Anne Grall-Jezequel, Jacqueline Gregorio, Caroline Guillotin, Malika Hammouda, Anne Hiegel, Laëtitia Idier, Helga Junot, Florence Lacaille, Laure Lalande, Magali Lamoine, Guillaume Lassailly, Emmanuelle Laurain, André Le Tutour, Pascal Lebray, Angélique Lecouf, Nazli Lefevre, Dorothée Lombardo, Paolo Malvezzi, Jonathan Messika, Karine Moreau, Magalie Mosnier, Béatrice Moulin, Florence Moulonguet, Dominique Navas, Estelle Nicolle, Robert Novo, Emelyne Paillasse, Sabine Pattier, Stéphane Penando, Evangéline Pillebout, Christophe Pison, Hélène Pluchart, Coralie Poulain, Xavier Pourrat, Delphine Rateau, Agnès Robert, Elena Romanelli, Fabienne Roques, Olivier Roux, Guy Sabatier, Françoise Smett, Jeanick Stocco, Leïla Temagoult, Emilie Terrenes, Denis Touchet, Marie-Hélène Tribot, Carole Vachias, Claire Vanlemmens, Ludivine Verdonk, Ludivine Videloup, Louise, Géraldine, Ophélie, Sophie, Marine, Valentine, and Julie (nurses at La Pitié-Salpétrière Hospital, Paris). We thank Olivier Chicaud for elaborating the website dedicated to the project and Karen Poole for reading and editing of the article’s English version.

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