Computer Survey on Quality of Life in Children with Chronic Health Conditions

Study Goals

As part of a national effort to collect data on health related quality of life in children with chronic health conditions, the Patient Reported Outcomes Measurement Information System (PROMIS www.nihpromis.org ) has developed a computer survey to measure pain, fatigue, physical function, social and emotional health in children. This study aims to validate PROMIS pediatric items in specific chronic health populations (Rehabilitation, Cancer, Obesity, Rheumatologic Disease, Sickle Cell Disease, and Chronic Kidney Disease). UWCORR is collecting data on the pediatric rehabilitation population and serves as one of thirty three sites around the country working on data collection efforts.

The UWCORR is working with the Neurodevelopment and Rehabilitation Medicine Clinics at Seattle Children’s Hospital as well as Legacy Health System in Portland, Oregon. 100 youth with physical disabilities will be asked to complete a short computer-based survey about the child’s general health.

Study Participation

Children who have been diagnosed with a chronic medical condition and who are between the ages of 8 and 18 are eligible to participate. Parents will be asked to complete a short demographics section at the beginning of the computer survey. Families can participate from home if they have access to a computer and the internet, they can complete the survey at the University of Washington or Seattle Children’s Hospital, or if they live within 25 miles of the UW campus, a research staff member can come to their home. This is a one-time survey and youth are paid $10 for their participation.

Analysis

In order to achieve our goal of creating and improving health related questions, at the end of two years, we will examine the psychometric properties of instruments used in the survey, use Classical Test Theory methodology (including factor analysis) and other appropriate methods to refine items and scales, and propose a set of improved core measures and/or items for assessment of pain and fatigue in youth with disabilities. This will provide a set of questions that assess pain and fatigue in a variety of individuals so that health care practitioners will be able to better evaluate and treat youth with disabilities.