Missing Link in CKD Patient Education

Many chronic kidney disease (CKD) patients are floating in a sea of uncertainty due to inadequate patient education and various knowledge barriers. Consequently, the patient’s understanding of various treatment options—and how the timing of engagement can impact each outcome, is often lost in the shuffle.

With the clock ticking behind the scenes, CKD patients often look to their physicians for advice. While the tendency to delay end stage option discussions early on because it can cause unnecessary fear, it also closes life-changing doors for those who could medically benefit from a timely transplant.  

Hence, early education is key, especially for patients who are told “You’ve got lots of time.” Telling a patient they aren’t “sick enough” to learn robs them from learning more and proactively fighting for their best life possible. Regardless of perceived timelines, patients need to recognize how oblivious and passive behaviors can negatively impact future outcomes.

The missing link in CKD education is the delayed timing of introductions, which are encouraged to begin at Stage 4 kidney disease. Yet, kidney patients deserve the right to discover transplant opportunities—before their declining health completely forbids them from becoming a potential candidate. They deserve the right to fight for a better quality of life when they are healthy enough to give it all they’ve got.

Physicians have the power to course-correct this conundrum by simply engaging their patients in earlier stages of in their disease continuum, (ideally starting no later than eGFR 59, as patients enter Stage 3 kidney disease). Time is king and information is power. Physicians can empower their patients by sharing information early and repeating it often. Encouraging patients to proactively slow the progression of their disease and fight for a better life becomes key to achieving better outcomes.

Patients deserve to know what their future might look like and how they can drive their best path forward. They also deserve  plenty of time to learn more, explore more and contemplate their options before time of need. It’s the only way to ensure sound decisions are make.

Asking Key Questions

It’s extremely important to encourage patients to become more engaged by  advocating for their best life possible. Encouraging patients to ask important questions and contemplating opportunities before their clock runs out is essential. 

The questions listed below encourage an open dialogue, while positioning healthcare providers as leaders who guide their patients on a more proactive path to their best life possible.

• “Is Transplant A Better Option To Consider Over Dialysis?”
• “How Do Outcomes Differ Between Dialysis Patients & Transplant Patients?”
• “Do You Think I Might Be Transplant Eligible?”
• “If I’m Not Transplant Eligible, Can I Improve My Future Chances?”
• “What Should I Do To Secure Long-Term Transplant Eligibility?”
• “What Transplant Centers In the Area Should I Consider?”
• “How Do I Get A Referral to A Transplant Center?”
• “What’s The Best Timing For Referral?”
• ”How Long Is The Wait On The National List For A Deceased Donor’s Kidney?”
• “Are There Long Term Benefits In Getting A Transplant From A Living Kidney Donor?
• “How Would I Ask Someone To Consider Being My Living Donor?” 
• “How Early Should I Start This Dialogue?”

Conclusion

Addressing important questions long before the patient is in need of renal replacement therapy is key. Educating patients as they enter Stage 3 (eGFR 59) will empower their timeline to contemplate, plan and prepare for their best outcome. Early transplant referrals will inspirit potential recipients from attracting potential donors. Finding and testing living kidney donor takes time—often years. The evaluation process for potential recipients also takes time. When education is delayed and decisions are postponed, outcomes are put at risk.  

At the TransplantFirst Academy’s founder, Risa Simon, instilled the wisdom she discovered as a preemptive transplant recipient to inspire all eligible CKD patients to seek a more proactive path for circumventing dialysis. Her pioneering efforts toward patient self-advocacy and empowerment have become the core fibers in the TransplantFirst Academy’s vision.

The TransplantFirst Academy is dedicated to bridging the missing link in CKD patient education and CKD patient empowerment, by providing healthcare providers an advanced education system beginning at early stages (starting at eGFR 59), before illness advances or depression sets in.

“When CKD Patients Are Exposed To Advanced Information Regarding Renal Replacement Therapy (Shortly After Their Initial Diagnosis), They

Are Better Equipped To Fully Participate In & Proactively

Advocate For Their BEST LIFE Possible.”

– Risa Simon, Founder TransplantFirst Academy

CKD patients need to secure a better life for themselves by becoming more engaged in the process long before illness advances. Let’s give them their best shot at living the quality-of-life they deserve.  Inspire your patients to seek a better future by offering this exceptional learning system in your office. Visit: www.transplantfirst.org