Pediatric Quality of Life Questionnaire

The Pediatric Quality of Life questionnaire (PedsQL^™) is comprised of three separate, self-administered questionnaires. The age-appropriate version (ages 5-7, 8-12, and 13-18) of the PedsQL^™ questionnaire should be self-administered to all pediatric patients ( 18 years of age).

• The Pediatric Quality of Life Inventory consists of 23 items that assess physical, emotional, social, and school functioning. A 5-point response scale is used based on a one-month recall period. The instrument takes less than 10 minutes to complete.
• The Multidimensional Fatigue Scale consists of 18 items that assess general fatigue, sleep/rest fatigue, and cognitive fatigue. A 5-point response scale is used based on a one-month recall period. The instrument takes less than 10 minutes to complete.
• The Pediatric Pain Questionnaire assesses present pain, worst pain intensity and disease severity using a Visual Analog Scale (VAS). The instrument takes less than 5 minutes to complete, and a ruler will be provided.

The Patient Survey Process
It is recommended that patients are surveyed according to the Minimum Recommended Schedule of Assessments. It will be important to keep track of when your patient was last surveyed so you will know when he/she is due for their next survey.

Please be sure the patient is fluent in reading the language used in the survey. If not, do not proceed with administering the survey. The translations are available in the Fabry Registry Materials Section. If the language is not listed please contact the Fabry Registry staff to see if there is a translated survey available in the patient’s native language.

For more information on the PedsQL^™ questionnaire and to request copies with administration instructions, please contact the Fabry Registry.