PEDIATRIC KIDNEY PATIENTS: UNDER REPRESENTED?

PEDIATRIC KIDNEY PATIENTS: UNDER REPRESENTED?

 

          Are our CKD/ESRD children an ignored, under represented, under reported group of kidney patients? Are they overlooked because the group is less in numbers than adults?  Are they treated like second-class kidney citizens?

 

A Few Stats

·        Pediatric ESRD Patients, less than 20 years of age, constitute a very small portion of the ESRD population, however some authorities say the total ESRD population, including pediatric patients may really be up to 50xs as much as estimated;

 

·        In America, Children under 20 accounts for less than 2% of the ESRD population.  Taking the United States Renal Data Systems Annual Report, (2017)(Chapter 2), Centers for Medicare and Medicaid Services, the current estimate of the ESRD population for children and adolescents is approximately 13.7 per million population as of 2015;

 

·        As of December 31, 2015, the prevalence of children and adolescents, 0-21 years with ESRD was 9,672 or 99.5 per million population.  An additional 10,251 adult survivors of the childhood onset of ESRD contributed to the 2015-point prevalence of ESRD of adults;

 

·        The prevalence of 0-19 yr old CKD patients has grown 32% since 1990;

 

·        During the period between 2011-2015, the proportion of missing, unknown or unspecified etiologies of incident was markedly high in the 18-21-year-old age group at 27%;

 

·        Short stature is common in children and adolescents with ESRD; this affects the majority of young patients between the ages of 0-4 or approximately 52.7%.

 

·        CKD in children is a devastating illness! The mortality rate for ESRD children receiving dialysis is between 30-150xs that of the general Peds population.  The life expectancy for ESRD children 0-14 receiving dialysis is only 20 years of age.  According to NAPRTCS, between 1996-2004, there were 3200 Pediatric ESRD Deaths!

 

 

WHEN I BECAME A BELIEVER

          Let me tell you when I became interested in pediatric patients.  There was a little boy on Facebook in a video his mother had made.  He was approximately 6 years old, diminished size, wearing a diaper, sitting in a sink partially full of water, crying.  Obviously, he had a major melt down.  His Mom was trying to calm him.  He was on dialysis and on a fluid restriction.  He was thirsty and asking repeatedly for water.  He did not understand why everyone could drink all the water they wanted, but not him.  Flailing his arms, clinched fists, screaming.  Demanding water.  Mom finally got him to settle for a small amount of ice chips.

Sometimes you have to moved emotionally before you are moved intellectually, and that was the case with me.  It slowly began to occur to me that not only did the pediatric CKD/ESRD/Dialysis patient have the some of the same issues that I had, but they had their own, unique difficult issues to face.  How do you explain to a young child, an infant, a teenager that they are on fluid restriction and they cannot drink fluids in the same amount that their peers do?

How do you ask a teenage girl to comply with diet restrictions, her medications regimen after transplant, when she’d rather be around her friends? Recently, Vector Children’s Hospital reported that young kidney recipients are 60% more likely than adults to miss taking their immunosuppressive/steroidal medications.

 

THE CONFLICT BETWEEN WHAT THE EXPERTS THINK IS IMPORTANT AND WHAT THE MOMS THINK ARE IMPORTANT?

            THE EXPERTS

There is a notable conflict between what issues the Experts from the NIDDK/NIH recognize as unique to Pediatric Kidney Patients and what Kidney Moms think are important issues.  From the Experts, here are their issues:

1.     Pediatric Patients Suffer From A Slower Growth Rate Than “Normal” Children.

a.     Damaged kidneys slow a child’s growth by causing a mineral & bone disorder due to lack of Vitamin D and high levels of phosphorus. This in turn causes an imbalance of sodium, potassium and acid in the blood.  As a result, growth slows to bring balance back.

 

b.     This in turn leads to a decreasing appetite as a Kidney Kid may not be hungry or have the energy to eat. Poor nutrition leads to a much slower growth rate.

 

 

c.      This in turn leads to a decreased production of erythropoietin leading to anemia.

 

d.     This in turn leads to making an abnormally large supply of urine, further disrupting the body’s fluid balance.

 

e.      The damaged kidneys prevent the body from correctly using the growth hormone.

 

f.       This is why so many pediatric kidney patients end up on a feeding tube.

 

2.     Pediatric Kidney Patients Frequently Suffer from Urinary Incontinence

 

a.     Children with CKD may grow at a slower rate than their peers and the loss of bladder control which results in accidental loss of urine is common, resulting in isolation for the Pediatric Patient.

3.     A Negative Self-Image/Low Self Esteem

 

a.     Frequently, as a result of the diminished size, the feeding tube and incontinence, the Pediatric Kidney Patient develops a poor self-image.

 

4.     Pediatric Kidney Patients Frequently Develop Relationship Problems

 

a.     Pediatric Kidney Patients all too often have relationship issues.  These conflicts would include the following groups:

                                                                         i.      Family members

                                                                       ii.      Making friends

                                                                    iii.      Participating in physical activities & sports

b.     Even with a transplant, the side effects of the meds in children may result in a moon face from Prednisone, weight gain, acne, or facial hair, inhibiting social interaction.

5.     Pediatric Kidney Patients Frequently Suffer From Behavior Problems

 

a.     Peds Patients have been too often accused of not fitting in and as a result behaving badly.

 

6.     Pediatric Kidney Patients Frequently Have Eating, Diet & Nutrition Issues

 

a.     The big issue here is the failure to follow treatment regimens.  This includes everything from adhering to a renal diet, taking medication, taking/showing up for dialysis, & adhering to a post-transplant medication schedule.

7.     Pediatric Kidney Patients Have Learning Problems and Social Difficulties At School

 

a.     The buildup of wastes in the body slow nerve and brain functions, inhibiting learning and making social interactions difficult.   This in turn leads Peds Patients to:

                                                                         i.      Trouble concentrating

                                                                       ii.      Delayed language skills development---more slowly than their peers

                                                                    iii.      Delayed motor skills development

8.     The Ongoing Conflict Between Schools, Parents and the Medical Needs of the Pediatric Patient

 

a.     Pediatric Patients and their parents have constant issues concerning attending school as a result of illness and checkups in the form of numerous medical appointments and taking dialysis.  For example, in center hemo dialysis is 3 times a week for 4 hours at a time.  This does not include the time that it takes to hook up to the dialysis machine or to “hold” afterwards to stop the bleeding because of needles necessary to connect you to the dialysis machine.

b.     Pediatric Kidney Patients and prohibited and/or limited in participating in school/extracurricular activities.  This limits their ability to socialize and fit in with their peers.

c.      There is a constant tension between the potential threats to expel, suspend or hold back the student patient as opposed to the responsibility to adjust and make reasonable accommodations under the Americans Disability Act.

d.     Individuals w/Disabilities Education Act is a four-part piece of legislation that ensures students with a disability are provided with Free Appropriate Public Education that is tailored to their individual needs.  Does the instruction specifically designed to assist the student affect the absences issue?  The rescinded issues here are still under study for their impact.

e.      These challenges increase when CKD becomes ESRD.

f.       Most children with CKD who receive appropriate treatment can attend school, graduate from high school or go to  college/vocational school if their families recognize the need for additional guidance and understanding.

 

9.     Pediatric Kidney Patients Preparing to  Entering The Workforce

 

     a.   Peds must overcome many barriers to obtain and  prepare them find a job.  They have to overcome such issues as their mall stature and appearance. It is difficult to find employers that understand kidney problems and the necessity for reasonable accommodations.

 

 

 

10. Unusual Problems For The Child ESRD Patient Lead To Unique Solutions But at Great Expense to the Parents

a.  Experts have suggested the following type of experts to help resolve the above issues.  The problem here is the expense and who picks up the costs.  Those experts include:

i. Social Workers that help by finding:

o   Support Groups In The Community

o   Helping A Kidney Kid Rejoin School Activities

o   Reducing The Stress Of Caring For A Child W/A Chronic Illness

o   Help W/Applications For Medicare & Medicaid

 

o   Mental Health Professional

o   Financial Counselor

o   Dietitian

 

 

THE MOMS (PARENTS AND CARETAKERS)

There is a marked difference between what the Experts Feel is important and the concerns of the “Moms” group.  I have written these in ascending order to emphasis the impact of my conclusion.

12. Inconvenient Lab Times

 

Labs for the children are frequently taken at inconvenient times without considering the special needs of the child patient/mom.  This was characterized as “not a family centered experience.”

 

 

 

11.  The Equipment is not retrofitted for children

 

The equipment that is used for basic vital testing or dialysis is not properly fitted for children.  The equipment is specifically manufactured and fitted for adult patients, and caretakers for children are forced to adapt. Machines like blood pressure machines, dialysis machines, dialysis chairs do not fit the children. The remark made to me was “practically everything is made in adult size.”

 

10.  Research on Issues Involving Pediatric Kidney Patients has been Characterized by Parents as Poor

 

According to the Moms, there is very poor long-term research on children with kidney disease.

 

9.  Drug Protocols Are Not Explained In A Clear Fashion

 

The caretakers for children have complained about the clarity of drug protocols, for example, steroids or no steroids?

 

8.  Some Physicians Will Not Accept Medicare/Medicaid Payments

 

With Pediatric Kidney Patients, Medicare is not accepted by docs, forcing parents to have multiple health insurance policies on the child.

 

 

 

7.  There Is Poor Mental Health Support for Pediatric Kidney Patients

 

Peds patients have mental health issues. There is poor psychological/psychiatric support for ESRD children.  Statement made to me, “… for [a] group that doesn’t eat or urinate, [spends]extended periods of time in hospital [and] is missing school and social interaction,” there is surprisingly little support for these children.

 

6. The Normal Precautions for Adult Peritoneal Kidney Patients Are Frequently Disregarded for Juvenile Dialysis Patients During Training

 

There are poor training standards and care for young PD patients in the hospital.  “Doing dialysis in an open room vs a private room with many other pediatric patients with unmasked provider is recipe for peritonitis.”  There are no single care providers for connections and disconnections.

 

5.  Travel to Pediatric Dialysis Centers Is Ridiculous

 

Dialysis centers for children are not as readily available as adult centers, particularly in rural areas.  It is difficult to travel to pediatric dialysis centers.  For example, in Indiana there is only 1 pediatric center, Riley’s  Hospital For Children in Indianapolis.  This is a 144 mile/ 2 ½ hour drive one way from Northwest Indiana where I live.  Some children are helicoptered down. For many children,  most dialysis centers are only available in major cities or children’s hospitals.

 

4.  There is Very Poor Support for Feeding Skills and Nutrition is Approached in a ‘One-Size Fits All’ Method

 

The Moms teach us that there is poor support for feeding skills and nutrition for Pediatric Kidney Patients.   The needs of the individual kids are frequently not addressed.  Nutrition instead is approached as a one-size-fits all,  when individual training and treatment is needed.  There should be a balance of enough protein to stimulate growth, while protecting the kidneys

 

3. Most Pediatric Patients are Tube Fed

 

Feeding therapy is pretty much a done deal as a result of poor support. The majority of renal kids are tube fed to keep up with high intake necessary to support them & for the intake of meds.

 

2. There are no Pre-Set Appointments Like in Adult Dialysis

 

According to the Moms, there are no preset appointments without multiple choices.  Makes it very difficult to plan.

 

 

1. The Moms Feel There are Too Few Support Groups and They Have Requested a Major Kidney Advocacy Group, Like the NKF, Undertake An Initiative To Represent Their Children

 

The Moms complain that their children are not adequately represented.  There are too few pediatric support groups.  The Moms feel that a major national group like the NKF or AAKP take an Initiative to help these children.

 

                CONCLUSION

It is interesting to review this matter for Pediatric Kidney Patients. As Kidney Patients, they are truly an overlooked or neglected group.  This results in problems that may follow them out of childhood and into adulthood.  This can be a life sentence for merely becoming a Kidney Patient at a young age. It is too great a price to pay for a circumstance largely out of their control.  And with all their issues, what is it that they ask for?  They ask only to be represented; for advocates.  If we truly represent all kidney patients, how can we overlook the Ambassadors of our future?