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Web-Based Self-Management Guide for Kidney Transplant Recipients (The Getting on With Your Life With a Transplanted Kidney Study): Protocol for Development and Preliminary Testing.

  • Massierer, Daniela1, 2, 3
  • Sapir-Pichhadze, Ruth2, 4
  • Bouchard, Vanessa5
  • Dasgupta, Kaberi2, 6, 7, 8
  • Fernandez, Nicolas9
  • da Costa, Deborah2, 7
  • Ahmed, Sara1, 2
  • Fortin, Marie-Chantal10
  • Langevin, Rosalie3
  • Mayo, Nancy1, 2, 11, 12
  • Janaudis-Ferreira, Tania1, 2, 3, 13
  • 1 School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada. , (Canada)
  • 2 Centre for Outcomes Research and Evaluation, Research Institute of the McGill University Health Centre, Montreal, QC, Canada. , (Canada)
  • 3 Canadian Donation and Transplantation Research Program, Edmonton, AB, Canada. , (Canada)
  • 4 Division of Nephrology and Multi-Organ Transplant Program, Department of Medicine, McGill University, Montreal, QC, Canada. , (Canada)
  • 5 Hôpital de Chicoutimi, Centre intégré universitaire de santé et services sociaux du Saguenay-Lac-Saint-Jean, Chicoutimi, QC, Canada. , (Canada)
  • 6 Division of Endocrinology & Metabolism, McGill University Health Centre, Montreal, QC, Canada. , (Canada)
  • 7 Division of Internal Medicine, McGill University Health Centre, Montreal, QC, Canada. , (Canada)
  • 8 Metabolic Disorders and Complications, Research Institute of the McGill University Health Centre, Montreal, QC, Canada. , (Canada)
  • 9 Department of Family Medicine and Emergency Medicine, University of Montreal, Montreal, QC, Canada. , (Canada)
  • 10 Department of Medicine, University of Montreal, Montreal, QC, Canada. , (Canada)
  • 11 Division of Clinical Epidemiology, McGill University Health Centre, Montreal, QC, Canada. , (Canada)
  • 12 Division of Geriatrics, McGill University Health Centre, Montreal, QC, Canada. , (Canada)
  • 13 Translational Research in Respiratory Diseases Program, Research Institute of the McGill University Health Centre, Montreal, QC, Canada. , (Canada)
Published Article
JMIR Research Protocols
JMIR Publications Inc.
Publication Date
Jun 24, 2019
DOI: 10.2196/13420
PMID: 31237243


Although it is well known that compared with dialysis, kidney transplantation improves the quality of life (QoL) of patients with end-stage renal disease, posttransplant recovery of physical health and other aspects of QoL remain well below age- and sex-matched norms. In addition, most transplant recipients are not physically active even years after the transplant and face several barriers to engaging in physical activity (PA). This is of concern as low levels of PA in transplant recipients has been associated with increased risk of mortality and poor graft function. Optimization of QoL needs a team approach involving the patients and the members of the health care team. While members of the health care team are focused on optimizing the biological responses to transplant, patients may have few or no tools at their disposal to engage in behaviors that optimize QoL. To accomplish the need of supporting these patients in the self-management of their condition and to facilitate engagement with PA, new tools tailored to this population are required. The aim of this protocol study is to develop a Web-based, patient-centered self-management intervention to promote a healthy lifestyle, increase daily PA, and improve QoL in kidney transplant recipients. We will use the Obesity-Related Behavioral Intervention Trials model for developing behavioral treatments for chronic diseases to guide the proposed project. We will follow a modified version of the iterative 10-step process that was used to develop educational material for people with multiple sclerosis. The development of the intervention will occur in partnership with patients and a multidisciplinary team of clinicians and researchers. A comprehensive needs assessment including data from our pilot study, literature review, and focus groups will be conducted. The focus groups will be conducted with 6 to 10 participants for each type of stakeholders: patients and professional experts to identify areas of concerns of kidney transplant recipients that are appropriate to address through self-management. The areas of concern identified through the assessment needs will be included in the website. This study has received funding from the Kidney Foundation of Canada for 2 years (2018-2020) and was recently granted ethics approval. Investigators have begun conducting the needs assessment described in step 1 of the study. The study is expected to be completed by the end of 2020. This will be the first comprehensive, evidence- and experience-based self-management program for kidney transplant recipients. Once the intervention is developed, we anticipate improvements in patient experience, shared decision making, daily PA, QoL, and, in future studies, improvements in health outcomes and demonstrations of cost savings in posttransplant care. PRR1-10.2196/13420. ©Daniela Massierer, Ruth Sapir-Pichhadze, Vanessa Bouchard, Kaberi Dasgupta, Nicolas Fernandez, Deborah da Costa, Sara Ahmed, Marie-Chantal Fortin, Rosalie Langevin, Nancy Mayo, Tania Janaudis-Ferreira. Originally published in JMIR Research Protocols (, 24.06.2019.

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