Compiling a care team for Recurrent Respiratory Papillomatosis patients involves bringing together a group of healthcare professionals with diverse expertise to provide comprehensive care.

With a rare disease, and especially one which requires a multidisciplinary and specialized approach, quality care is essential.

With treatment from a trained a qualified specialist, patient outcomes are improved, and less frequent intervention is necessary. RRPF encourages patients to reach out if you need help locating clinicians who are knowledgeable and up to date in their treatment of RRP patients.

Here’s a guide to help you build an effective multidisciplinary care team:

Primary Care Physician (PCP)

• Role: Acts as the central coordinator of care, managing overall health and making referrals to specialists as needed.
• Responsibilities: Regular check-ups, monitoring general health, and coordinating with other team members.

Otolaryngologist (ENT specialist)

• Role: Specializes in ear, nose, and throat disorders, including surgical removal of papillomas.
• Responsibilities: Performing surgeries, managing airway obstructions, providing ongoing ENT care.

Pulmonologist

• Role: Focuses on respiratory health, particularly important if RRP affects the lower respiratory tract.
• Responsibilities: Monitoring lung function, • managing respiratory symptoms, and providing treatments for airway management.

Speech-language pathologist

• Role: Helps with voice and speech issues that may arise due to RRP.
• Responsibilities: Providing voice therapy, teaching techniques to improve vocal function, and offering support for communication challenges.

Infectious disease specialist

• Role: Manages infections and provides expertise on antiviral treatments.
• Responsibilities: Advising on antiviral medications and monitoring for any infections related to RRP.

Oncologist

• Role: Provides expertise in managing any potential malignant transformation of papillomas.
• Responsibilities: Monitoring for signs of cancer and providing appropriate treatments if necessary.

Psychologist or psychiatrist

• Role: Offers mental health support to help cope with the chronic nature of RRP.
• Responsibilities: Providing counseling, managing anxiety or depression, and offering strategies for mental well-being.

Nutritionist or dietitian

• Role: Ensures the patient maintains a healthy diet to support overall health and recovery.
• Responsibilities: Creating nutrition plans,  advising on dietary supplements, and monitoring nutritional status.

Social worker

• Role: Provides support with navigating healthcare systems and accessing resources.
• Responsibilities: Assisting with insurance issues, connecting with support groups, and providing emotional support.

Patient advocate

• Role: Helps patients understand their rights and navigate the healthcare system.
• Responsibilities: Advocating for the patient’s needs, assisting with insurance claims, and providing information on available resources.