The Live Donor Toolkit

The number of both deceased and living organ donations continues to grow. However, there is little content online to educate living donors about the potential medical, psychosocial, and financial impacts of being a living donor.

As a result, the AST website now includes a Live Donor Toolkit, which provides much needed resources for these donors. For this post, I have invited donor advocate, Rebecca Hays, to do a guest post about this new resource. 

Live Organ Donation Education Toolkits

When surveyed, 97.5% of live organ donors said they would donate again if they could. Even so, choosing to have knife to skin is a profound decision, and prospective donors clearly deserve good information about potential risks and impact.

Unfortunately, access to high quality information about live donation is inconsistent, with transplant centers building materials from scratch and many patients seeking advice via internet search engines. My own ‘live donor’ Google search turned up ways to donate a car and headlines about a trafficking ring. I was unable to find a reliable, centralized forum for live donor education.

No surprise, then, that the 2014 Best Practices in Live Donation Consensus Conference (organized by the AST Live Donor Community of Practice & with the support of 11 organizations) prioritized the need for a centralized, standardized, neutral, high quality home for live donor education.

As a result, the Live Donation Toolkit project was born. The goal of this project is to:

  • Improve the delivery and quality of education for those considering live donation.
  • Cover content areas not addressed elsewhere (for example, guidance about live donation and military service or pregnancy).
  • Promote transplant community collaboration, to reduce effort duplication & improve quality.
  • Increase accessibility of information about live donation to the public.

The toolkits are designed for easy use in the clinic or at home, with content rich enough to be helpful for providers or patients. The content was created by 26 experts from 19 different centers and from a range of different disciplines. We’re eager for feedback, and for your comments as the project grows.

The Live Donor Financial Toolkit launched in June 2016 on the AST website. It includes 9 sections.

  • Introduction
  • Cost estimation worksheet
  • NLDAC travel grant information & service linkage
  • Non-profit sources of financial assistance: lists & links
  • Fundraising for live donors: tips, tools, & NOTA considerations
  • Insurability after live donation
  • Employment & live donation Q&A: discussion strategies for talking with your boss, & how to learn about your benefits
  • State and federal laws related to live donation
  • Live donation and military service

The Live Kidney Donor Medical Toolkit will have parallel chapters, written at provider and patient levels. Provider-level chapters will be launched soon, with patient-level adaptations underway:

  • Risk of ESRD for living donors
  • The risks of donor nephrectomy surgery
  • The psychosocial risks of live kidney donation
  • The donor with pre-diabetes
  • The donor with preexisting hypertension
  • The obese donor
  • The donor with stones
  • The donor with metabolic syndrome
  • The door with microscopic hematuria
  • The donor at risk of PCKD
  • Pregnancy after live kidney donation
  • Issues specific for the donor in paired kidney exchange
  • Issues specific to non-directed donation
  • Components of informed consent in live kidney donation
  • After live kidney donation: information for primary care

What’s next for the project? The Toolkits will be housed at their very own website, aiming for a spring 2017 release. As part of this transition, the toolkits will also be adapted to meet users’ learning needs. The financial toolkit is currently undergoing translation into plain language (at the middle school reading level).  After that comes Spanish translation, and integration of video and art.

Still to come? A Live Liver Donor Medical Toolkit, and a plan for annual updates (with more chapters added as needs are identified). The project will also benefit from ongoing partnership with other societies and governmental agencies for most effective dissemination.

Acknowledgements:

  • Project developers: Rebecca Hays and Dianne LaPointe Rudow
  • Toolkit chairs: Kristen Fischer and Cheryl Jacobs (Financial Toolkit); Kathy Schwab and David Serur (Medical Toolkit)
  • Additional workgroup members: Marian Charlton, Mary Amanda Dew, Elisa Gordon, Choli Hartono, Mara Hersh-Rifkin, Krista Lentine, Todd Pesavento, James Rodrigue, Dorry Segev, Jane Tan, Sandra Taler, Roxanne Taylor, Charlie Thomas, Lara Tushla, Holly Warren, Steve Woodle
  • Funding support: AST and unrestricted grant support from Novartis

 

 

 

Comments

This is a fantastic resource! Thank you so much for putting it together. I am planning to be a kidney donor for my sister in Canada and am doing a lot of research. I think informed consent is an idea that is glossed over by the living donor team - they only talk about slightly elevated risk for ESRD and high blood pressure. Thanks for tackling these issues directly, using qualified writers looking at the research findings. Much appreciated.
One suggestion: on each document, include the date it was written so that readers know how old the information is (or isn't).

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