Pediatric Quality of Life Inventory™ Neurofibromatosis Module (PedsQL™ Neurofibromatosis Module)

Varni JW


Last update: August 2018

Basic description

Conditions of use
The PedsQL™ Neurofibromatosis Module is a specific module of the PedsQL™

Existing versions: Acute version and Standard version, for Young Child (5-7 years of age), Child (8-12 years of age), Adolescent (13-18 years of age), Young Adult (18-25 years of age), and Adults (>26 years of age).


Varni JW

Copyright © 1998 JW Varni, Ph.D.
To measure Neurofibromatosis Type 1 specific health-related quality of life
Therapeutic area
  • Neoplasms
  • Nervous System Diseases
  • Congenital, Hereditary, and Neonatal Diseases and Abnormalities
  • Rare disease (Orphanet definition)
Therapeutic indication

Neurofibromatoses For more information on this rare disease, please consult the following link: Orphanet page

Neurofibromatosis Type 1
Type of Clinical Outcome Assessment (COA)
  • pro PRO
Original language(s)
  • English for the USA
Bibliographic reference(s) of the original questionnaire

Nutakki, K., Varni, J.W., & Swigonski, N.L. (2018). PedsQL Neurofibromatosis Type 1 Module for children, adolescents and young adults: Feasibility, reliability, and validity. Journal of Neuro-Oncology, 137, 337–347.

Nutakki, K., Varni, J.W., Steinbrenner, S., Draucker, C.B., & Swigonski, N.L. (2017). Development of the Pediatric Quality Of Life Inventory Neurofibromatosis Type 1 Module items for children, adolescents and young adults: Qualitative methods. Journal of Neuro-Oncology, 132, 135–143.