Navigation Links
New assessment tool helps shed light on lupus in kids worldwide
Date:11/9/2010

A newly designed tool is helping researchers shed light on the quality of life (QoL) of children with lupus around the world, according to research presented at the American College of Rheumatology (ACR) annual meeting, held Nov. 7-11, in Atlanta.

"Lupus is a significant disease with a major impact on QoL of children around the world. This is a chronic, unremitting disease that we need to get under better control," said Thomas J.A. Lehman, M.D., chief of Pediatric Rheumatology at Hospital for Special Surgery, who was involved with the study. "We have done better at treating the disease and lessening the impact of the disease on children around the world, but we still lack a cure."

Lakshmi Nandini Moorthy, M.D., a pediatric rheumatologist in the ambulatory care center in the Department of Medicine at HSS who served as principal investigator of the study, said the study had a couple of take home points. "Parents across multiple cultures seem to perceive that children with lupus have a lower quality of life than their children actually report. That could reflect a greater perception of their child's vulnerability or a parent's own quality of life or anxiety," said Dr. Moorthy, who is also chief of the Division of Pediatric Rheumatology at the Robert Wood Johnson Medical School at the University of Medicine and Dentistry of New Jersey. "A second interesting point is that in this particular study, the children in an Asian country report a better quality of life than children in Europe or South America. We need to gather more data and more details to confirm this result."

The study was conducted using a 26 item health-related quality of life assessment tool developed by Dr. Moorthy several years ago while she was a pediatric rheumatology fellow at HSS. Before the SMILEY tool (Simple Measure of Impact of Lupus Erythematosus in Youngsters), there was no good way to measure quality of life in lupus patients. The only tools available were general surveys and those that were developed for juvenile arthritis. "Lupus is a very chronic, fluctuating disease. In one person, it can affect their eyes, in another it can affect their kidney or brain, and in another person it can just be a rash that affects their appearance," Dr. Moorthy said. "We needed a scale that was general enough to capture all that, but at the same time be specific enough to capture the effects of lupus."

So, Dr. Moorthy developed SMILEY, which includes 26 questions, all of which have five possible responses corresponding with facial expressions ranging from very sad to happy. It is easy to use and score. Questions include how does lupus make you feel about going to school, how does lupus make you feel about the way you look, how does lupus make you feel about your future, and how worried are you about the side effects of your medications.

For the study presented at ACR, 125 children and parents participated from South America (Brazil and Argentina), Europe (Italy, Spain, Netherlands), and Asia (China). Children and parents filled out SMILEY as well as generalized quality of life and physical function scales. Physicians also filled out surveys gauging severity of disease and impact of the disease.

"By looking at the SMILEY scores, we can see that lupus has a major impact on the quality of life of children everywhere in the world, and while there are cultural differences in exactly how it impacts them, it has a major impact everywhere," Dr. Lehman explained. "The quality of life scores appear to be higher in Asia than in Europe, which was second highest, and South America. We want to look further into why the quality of life scores are different in Asia and how cultural factors and family expectations may play a role in this. Are there differences in how families cope with an ill child that may have a major impact on the quality of life scores and what can we learn from this?"

The researchers noted that the severity and duration of disease was not significantly different in the three areas studied. Investigators say the study shows that doctors around the world can use the SMILEY tool. They hope more doctors will implement SMILEY into their practicecurrently, only a small number of U.S. doctors use the tool in their practice.

"It takes one second to look and see how many sad faces patients mark. That can prompt the physician to sit down and talk for a longer time with a patient and to explore what is going on with these teenagers," Dr. Moorthy said. "The reason this is so important clinically is because it has to do with children's compliance in taking their medication. Often these children take these medications themselves and if they are sad and not doing so well, they may not be compliant with their medications."


'/>"/>

Contact: Phyllis Fisher
phyllis.fisher@gmail.com
212-606-1197
Hospital for Special Surgery
Source:Eurekalert

Related medicine news :

1. ATS, ERS issue official standards for the quantitative assessment of lung structure
2. Agility Consulting Partners with pan (Performance Assessment Network) to Bring Custom Private Label Assessment Capability to Human Resource Professionals and Consultants
3. Bick Group Launches Cloud Computing Quick Assessment Program (CCQA)
4. World's First Mobile Application for Alzheimer's Disease Risk Assessment
5. Association of fiber and colorectal cancer risk differs depending on dietary assessment method
6. Fertility Check Educates Women About Infertility; IntegraMed Launches Interactive Assessment Tool
7. Comparison of available breast cancer risk assessment tools shows room for improvement
8. "IPGDx, LLC Announces The Continued Validation Of Its Patented Technology For The Assessment Of Prognosis; PrognostiCheck" Getting the New Information to Patients and Do
9. Top Sales Ability Test and Sales Assessment Test Does Customer Service Skills Assessment Testing Too
10. IEEE Computer Society Rolls Out Assessment Courses for its CSDA and CSDP Software Development Certification Exams
11. X-ISS Launches Free Online Disaster Recovery Planning Assessment Tools for Small Businesses
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:2/8/2016)... ... ... has struggled to quit smoking, a man who has struggled with hair loss – Craig ... problems – and he did. Now Nabat, a serial entrepreneur featured as the October 2015 ... the world and better people's lives. His own experience with nicotine addiction led to the ...
(Date:2/8/2016)... ... February 08, 2016 , ... Tingley ... into Canada to provide its range of unique and advantaged protective solutions ... City that will provide bilingual customer service and marketing support. A new distribution ...
(Date:2/8/2016)... ... February 08, 2016 , ... Local insurance agency Dennis Fuller ... area, has initiated a fundraiser for a two year old little girl named ... Christmas. To support this beautiful child who is facing life’s journey without her ...
(Date:2/8/2016)... ... February 08, 2016 , ... Remember the old saying ... , According to Perry A~, author of “Calcium Bentonite Clay” the health benefits of ... in balancing and detoxifying the body. , A former motivational speaker, Perry A~ has ...
(Date:2/8/2016)... (PRWEB) , ... February 08, 2016 , ... Discover the ... visit over 1,400 booths and 700 companies. Attendees also get to see the ... Colorado Garden & Home Show , at the Colorado Convention Center - 700 ...
Breaking Medicine News(10 mins):
(Date:2/8/2016)... Feb.8, 2016 Alzheimer Diagnostic Tests - ... Medical Devices sector report , "Alzheimer Diagnostic ... an overview of Alzheimer Diagnostic Tests currently in ... on the pipeline products with comparative analysis of ... report reviews major players involved in the pipeline ...
(Date:2/8/2016)... Feb. 8, 2016 CBG Technologies, a ... Series Solvent Recycling Systems, specifically designed for precision ... with new and existing vapor degreasers, parts washers ... solvent through continuous recycling and recovers 100% of ... --> Precision parts manufacturers benefit ...
(Date:2/8/2016)... February 8, 2016 --> ... research report "Ablation Technologies Market by Product (Radiofrequency, Ultrasound, ... Management, Cosmetic Surgery, Ophthalmology, Gynecology) - Global Forecasts to ... market over the forecast period of 2015 to 2020. ... 2020, at CAGR of 10.5% from 2015 to 2020. ...
Breaking Medicine Technology: