Juvenile Recurrent Respiratory Papillomatosis (JRRP) Presentation

Today's Discussion

  • Our goals for this week

  • What is JRRP?

  • What are the symptoms?

  • How can JRRP be prevented?

  • How do we treat JRRP?

  • What role is served by health care providers?

  • What role is served by parents and caregivers?

  • What should your friends and family know about JRRP?

  • What support resources are available to help parents and health care providers?

  • Questions, Comments, and Feedback

 

 


Our goals for this week

  • Teach parents, caregivers, and health care professionals about JRRP

  • Prepare each constituency for the role that they will serve and build (and test!) confidence

  • Help address the unjust stigmatization that many parents feel

  • Establish support mechanisms and tools that will be available to parents and health care providers

 


What is JRRP?

  • JRRP stands for Juvenile Recurrent Respiratory Papillomatosis. As such, it is a pediatric disease. 

  • It is caused by the Human Pappiloma Virus (HPV).  There are over 200 strains of HPV.  The vast majority of JRRP are caused by Sub Types 6 and 11.

  • JRRP causes the growth of viral papilloma (warts) on the surface of the respiratory tract. Papillomata may occur anywhere in the respiratory tract (nose, throat, or lungs) but mostly affect the larynx (voice box). 

  • JRRP is diagnosed first by symptoms, and then either by viewing the larynx in the office with a scope or by taking the child to the operating room to inspect the airway while the child is asleep under anesthesia. 

  • The only way to absolutely confirm JRRP is by a biopsy. 

 


What are the symptoms?

JRRP is a pediatric disease. Patients with JRRP are often initially diagnosed with one or more of the following signs and symptoms:

Stridor (noisy breathing)

Croup

Chronic cough 

Asthma

Failure to thrive

Difficulty Speaking (Dysphonia)

Shortness of breath

Aphonia (loss of voice)

Snoring

Hoarseness

 


How can JRRP be prevented?

  • JRRP is caused by Human Papilloma Virus (HPV). This virus is very common and there are more than 100 different strains. Many people have been infected with this virus, even if they do not have symptoms.

  • There is currently only one vaccine available in the US to prevent HPV, the virus that causes JRRP. Gardasil is approved for people 9-26 years of age, is very safe, is typically well-tolerated, and causes a strong immune response providing long-term protection against HPV. 

  • If a child is already infected with HPV and has JRRP, vaccination can still help prevent other types of HPV.  

 


How do we treat JRRP?

  • There is no cure for JRRP.

  • Viral papilloma (warts) appear on the surface of the respiratory tract. Papillomata may occur anywhere in the respiratory tract (nose, throat, or lungs) but mostly affect the larynx (voice box). 

  • These growths may vary in size and often grow very quickly. Papillomata in the larynx are benign (not cancerous) and can be managed with periodic surgical intervention.

  • The goal in treatment is to clear the airway of papillomata and to prevent or reduce the occurrence of new papillomata. Mass. Eye and Ear uses KTP lasers and a Cidofovir as well as an Avastin (bevacizumab) protocol.  

  • We provide family-centered care, using a team approach in which the physicians, nurses, child life specialists, social workers, speech therapists, parents, care givers, etc. work together for the care of the patient. 

  • Education is an integral part of the treatment plan in helping patients and family members come to terms with the disease.

 


What role is served by health care providers?

  • Nursing care is an essential component of pre-op and post-op care as nurses are the primary interface with families

  • Discharge planning is a key part of every plan to teach parents what to look for and when to bring their child back in for treatment

  • Child life specialists help manage the child’s anxiety

 


What role is served by parents and caregivers?

  • Parents and caregivers observe symptoms that require follow-up medical attention

  • Parents have an important role to serve in educating their communities regarding JRRP and the role of Gardasil as a preventative measure

 


What should your friends and family know about JRRP?

  • Children cannot catch JRRP (or HPV) by playing with each other or by sharing utensils. Siblings cannot be infected through regular household contact. 

  • There are many misconceptions that persist within the child’s communities, including their own families, schools, and even the medical community

  • ADDRESS WHAT THESE ARE AND HOW TO HELP ADDRESS THEM

 


What support resources are available to help parents and health care providers?

For Parents:

For health care providers:

  • Knowledge to approach/ encourage patients on the vaccine and other JRRP issues, including the role of Gardasil in eventually eradicating JRRP