Health-Related Quality of Life Measures in Children with Lupus

Lupus in children can cause significant medical and psychosocial complications, resulting in frequent physician visits for routine, urgent or emergent care, reduce physical activity, changes in body image, anxiety over the future, side effects from treatments, and extended absences from school. All of these complications are disruptive to the children as well as to their parents and have a great impact on everyday living.

Dr. Lakshmi Nandini Moorthy is Chief of Pediatric Rheumatology at the Robert Wood Johnson Medical School in New Brunswick, New Jersey. Dr. Moorthy has develop a tool to measure the health related quality of life (HRQOL) among children with lupus. The tool is used to determine the impact that lupus is having on the lives of both children with lupus and their parents so adjustments can be made in all aspects of therapy, including psychological interventions.

During the Ninth International Congress on Lupus in Vancouver, British Columbia in June 2010, Dr. Moorthy presented data on the use of a tool she developed to measure the HRQOL in children with lupus called SMILEY (Simple Measure of Impact of Lupus Erythematosus in Youngsters). In this video, Dr. Moorthly discusses the impact of lupus on children and how the tool is being used in clinical practice to evaluate and monitor patients.

Category:

Nonprofits & Activism

Tags:

• lupus
• SLE
• pediatric lupus
• children with lupus
• SMILEY
• HRQOL
• health related quality of life
• lupus treatments
• lupus research
• lupus foundation
• LFA

[mathwiz2000]

It is true that parents see how the disease effects the child with the diease. Kids or teens do want to feel like their age because when they are adults they don't want to look about and see that they had no childhood. Because some disease took it away from them. I missed out in most of my jr high life and since teenhood. I have changed majorly as a person in the way I act with others and how I look. Most people when they meet me they can't tell what my real age is by the way I talk or act.