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Accepted for/Published in: JMIR Research Protocols

Date Submitted: Jan 23, 2019
Open Peer Review Period: Jan 24, 2019 - Feb 7, 2019
Date Accepted: Apr 12, 2019
(closed for review but you can still tweet)

The final, peer-reviewed published version of this preprint can be found here:

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 D, Sapir-Pichhadze R, Bouchard V, Dasgupta K, Fernandez N, da Costa D, Ahmed S, Fortin MC, Langevin R, Mayo N, Janaudis-Ferreira T

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

JMIR Res Protoc 2019;8(6):e13420

DOI: 10.2196/13420

PMID: 31237243

PMCID: 6613326

Getting on with your life with a transplanted kidney-GETONTRAK: protocol for developing an online guide for self-management and promotion of physical activity in kidney transplant recipients

  • 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

ABSTRACT

Background:

Although it is well known that, in comparison to dialysis, transplantation improves the quality of life (QOL) of patients with end-stage renal disease, post-transplant recovery of physical health and other aspects of QOL remain well below age- and sex-matched norms. In addition, the majority of transplant recipients are not physically active even years post-transplant and face several barriers to engaging in physical activity (PA). This is of concern as low levels of PA in transplant recipients have 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 healthcare team. Members of the healthcare team are focused on optimizing the biological responses to transplant, but patients may have few or no tools at their disposal to engage in behaviours 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.

Objective:

To develop an online, patient-centered self-management intervention to promote healthy lifestyle, increase daily PA and improve QOL in kidney transplant recipients.

Methods:

We will use the Orbit 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 destined 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 with kidney transplant recipients and clinician experts will be used 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.

Results:

This study has received funding from the Kidney Foundation of Canada for two years (2018-2020) and recently granted ethics approval. Investigators have begun conducting the needs assessment described in Step 1 of the study. Expected completion of the study is end of 2020.

Conclusions:

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, quality of life and, in future studies, improvements in health outcomes and demonstrations of cost-savings in post-transplant care.


 Citation

Please cite as:

Massierer D, Sapir-Pichhadze R, Bouchard V, Dasgupta K, Fernandez N, da Costa D, Ahmed S, Fortin MC, Langevin R, Mayo N, Janaudis-Ferreira T

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

JMIR Res Protoc 2019;8(6):e13420

DOI: 10.2196/13420

PMID: 31237243

PMCID: 6613326

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