Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

New assessment tool helps shed light on lupus in kids worldwide

10.11.2010
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 practice—currently, 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."

Other authors involved with the study include Claudia Saad-Magalhães, M.D., Juliana Oliveira Sato, MD, Claudio A. Len, M.D., Maria O. Hilário, M.D., Flavio Sztajnbok, M.D., Rozana Gasparello de Almeida, M.D., Feng Qi Wu, M.D., Xiaolan L. Huang, Fernanda Falcini, M.D., Donato Rigante, M.D., Rolando Cimaz, M.D., Jordi Antón Lopez, M.D., PhD, Consuelo Modesto, M.D., Rubén J. Cuttica, M.D., Lisette W.A. van Suijlekom-Smit, M.D., Marieke H. Otten, M.D., Maria J. Baratelli, B.A., Margaret G.E. Peterson, Ph.D., and Afton L Hassett, PsyD.

About Hospital for Special Surgery

Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 3 in rheumatology, No. 16 in neurology and No. 18 in geriatrics by U.S.News & World Report (2010-11), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at http://www.hss.edu/.

Phyllis Fisher
fisherp@hss.edu
212-606-1197
Tracy Hickenbottom
hickenbottomt@hss.edu
212-606-1197

Phyllis Fisher | EurekAlert!
Further information:
http://www.hss.edu

More articles from Health and Medicine:

nachricht Millions through license revenues
27.04.2017 | Rheinische Friedrich-Wilhelms-Universität Bonn

nachricht New High-Performance Center Translational Medical Engineering
26.04.2017 | Fraunhofer ITEM

All articles from Health and Medicine >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Making lightweight construction suitable for series production

More and more automobile companies are focusing on body parts made of carbon fiber reinforced plastics (CFRP). However, manufacturing and repair costs must be further reduced in order to make CFRP more economical in use. Together with the Volkswagen AG and five other partners in the project HolQueSt 3D, the Laser Zentrum Hannover e.V. (LZH) has developed laser processes for the automatic trimming, drilling and repair of three-dimensional components.

Automated manufacturing processes are the basis for ultimately establishing the series production of CFRP components. In the project HolQueSt 3D, the LZH has...

Im Focus: Wonder material? Novel nanotube structure strengthens thin films for flexible electronics

Reflecting the structure of composites found in nature and the ancient world, researchers at the University of Illinois at Urbana-Champaign have synthesized thin carbon nanotube (CNT) textiles that exhibit both high electrical conductivity and a level of toughness that is about fifty times higher than copper films, currently used in electronics.

"The structural robustness of thin metal films has significant importance for the reliable operation of smart skin and flexible electronics including...

Im Focus: Deep inside Galaxy M87

The nearby, giant radio galaxy M87 hosts a supermassive black hole (BH) and is well-known for its bright jet dominating the spectrum over ten orders of magnitude in frequency. Due to its proximity, jet prominence, and the large black hole mass, M87 is the best laboratory for investigating the formation, acceleration, and collimation of relativistic jets. A research team led by Silke Britzen from the Max Planck Institute for Radio Astronomy in Bonn, Germany, has found strong indication for turbulent processes connecting the accretion disk and the jet of that galaxy providing insights into the longstanding problem of the origin of astrophysical jets.

Supermassive black holes form some of the most enigmatic phenomena in astrophysics. Their enormous energy output is supposed to be generated by the...

Im Focus: A Quantum Low Pass for Photons

Physicists in Garching observe novel quantum effect that limits the number of emitted photons.

The probability to find a certain number of photons inside a laser pulse usually corresponds to a classical distribution of independent events, the so-called...

Im Focus: Microprocessors based on a layer of just three atoms

Microprocessors based on atomically thin materials hold the promise of the evolution of traditional processors as well as new applications in the field of flexible electronics. Now, a TU Wien research team led by Thomas Müller has made a breakthrough in this field as part of an ongoing research project.

Two-dimensional materials, or 2D materials for short, are extremely versatile, although – or often more precisely because – they are made up of just one or a...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Fighting drug resistant tuberculosis – InfectoGnostics meets MYCO-NET² partners in Peru

28.04.2017 | Event News

Expert meeting “Health Business Connect” will connect international medical technology companies

20.04.2017 | Event News

Wenn der Computer das Gehirn austrickst

18.04.2017 | Event News

 
Latest News

Wireless power can drive tiny electronic devices in the GI tract

28.04.2017 | Medical Engineering

Ice cave in Transylvania yields window into region's past

28.04.2017 | Earth Sciences

Nose2Brain – Better Therapy for Multiple Sclerosis

28.04.2017 | Life Sciences

VideoLinks
B2B-VideoLinks
More VideoLinks >>>