Moorthy Lakshmi Nandini, Roy Elizabeth, Kurra Vamsi, Peterson Margaret G E, Hassett Afton L, Lehman Thomas J A, Scott Christiaan, El-Ghoneimy Dalia, Saad Shereen, El Feky Reem, Al-Mayouf Sulaiman, Dolezalova Pavla, Malcova Hana, Herlin Troels, Nielsen Susan, Wulffraat Nico, van Royen Annet, Marks Stephen D, Belot Alexandre, Brunner Jurgen, Huemer Christian, Foeldvari Ivan, Horneff Gerd, Saurenman Traudel, Schroeder Silke, Pratsidou-Gertsi Polyxeni, Trachana Maria, Uziel Yosef, Aggarwal Amita, Constantin Tamas, Cimaz Rolando, Giani Theresa, Cantarini Luca, Falcini Fernanda, Manzoni Silvia Magni, Ravelli Angelo, Rigante Donato, Zulian Fracnceso, Miyamae Takako, Yokota Shumpei, Sato Juliana, Magalhaes Claudia S, Len Claudio A, Appenzeller Simone, Knupp Sheila Oliveira, Rodrigues Marta Cristine, Sztajnbok Flavio, de Almeida Rozana Gasparello, de Jesus Adriana Almeida, de Arruda Campos Lucia Maria, Silva Clovis, Lazar Calin, Susic Gordana, Avcin Tadej, Cuttica Ruben, Burgos-Vargas Ruben, Faugier Enrique, Anton Jordi, Modesto Consuelo, Vazquez Liza, Barillas Lilliana, Barinstein Laura, Sterba Gary, Maldonado Irama, Ozen Seza, Kasapcopur Ozgur, Demirkaya Erkan, Benseler Susa
Robert Wood Johnson Medical School, Rutgers University, New Brunswick, NJ USA.
Pediatric Rheumatology, Rutgers University Child Health Institute of New Jersey, 89 French Street, New Brunswick, NJ 08901 USA.
Pediatr Rheumatol Online J. 2014 Nov 25;12:49. doi: 10.1186/1546-0096-12-49. eCollection 2014.
Rheumatic diseases in children are associated with significant morbidity and poor health-related quality of life (HRQOL). There is no health-related quality of life (HRQOL) scale available specifically for children with less common rheumatic diseases. These diseases share several features with systemic lupus erythematosus (SLE) such as their chronic episodic nature, multi-systemic involvement, and the need for immunosuppressive medications. HRQOL scale developed for pediatric SLE will likely be applicable to children with systemic inflammatory diseases.
We adapted Simple Measure of Impact of Lupus Erythematosus in Youngsters (SMILEY©) to Simple Measure of Impact of Illness in Youngsters (SMILY©-Illness) and had it reviewed by pediatric rheumatologists for its appropriateness and cultural suitability. We tested SMILY©-Illness in patients with inflammatory rheumatic diseases and then translated it into 28 languages. Nineteen children (79% female, n=15) and 17 parents participated. The mean age was 12±4 years, with median disease duration of 21 months (1-172 months). We translated SMILY©-Illness into the following 28 languages: Danish, Dutch, French (France), English (UK), German (Germany), German (Austria), German (Switzerland), Hebrew, Italian, Portuguese (Brazil), Slovene, Spanish (USA and Puerto Rico), Spanish (Spain), Spanish (Argentina), Spanish (Mexico), Spanish (Venezuela), Turkish, Afrikaans, Arabic (Saudi Arabia), Arabic (Egypt), Czech, Greek, Hindi, Hungarian, Japanese, Romanian, Serbian and Xhosa.
SMILY©-Illness is a brief, easy to administer and score HRQOL scale for children with systemic rheumatic diseases. It is suitable for use across different age groups and literacy levels. SMILY©-Illness with its available translations may be used as useful adjuncts to clinical practice and research.
儿童风湿性疾病与严重的发病率和较差的健康相关生活质量（HRQOL）相关。目前尚无专门针对患有罕见风湿性疾病儿童的健康相关生活质量（HRQOL）量表。这些疾病与系统性红斑狼疮（SLE）有几个共同特征，如慢性发作性、多系统受累以及需要使用免疫抑制药物。为儿童SLE开发的HRQOL量表可能适用于患有系统性炎症性疾病的儿童。
我们将青少年狼疮影响简易测量量表（SMILEY©）改编为青少年疾病影响简易测量量表（SMILY©-疾病量表），并由儿科风湿病学家对其适用性和文化适宜性进行了审查。我们在患有炎性风湿性疾病的患者中测试了SMILY©-疾病量表，然后将其翻译成28种语言。19名儿童（79%为女性，n = 15）和17名家长参与了研究。平均年龄为12±4岁，疾病持续时间中位数为21个月（1 - 172个月）。我们将SMILY©-疾病量表翻译成了以下28种语言：丹麦语、荷兰语、法语（法国）、英语（英国）、德语（德国）、德语（奥地利）、德语（瑞士）、希伯来语、意大利语、葡萄牙语（巴西）、斯洛文尼亚语、西班牙语（美国和波多黎各）、西班牙语（西班牙）、西班牙语（阿根廷）、西班牙语（墨西哥）、西班牙语（委内瑞拉）、土耳其语、南非荷兰语、阿拉伯语（沙特阿拉伯）、阿拉伯语（埃及）、捷克语、希腊语、印地语、匈牙利语、日语、罗马尼亚语、塞尔维亚语和科萨语。
SMILY©-疾病量表是一种针对患有系统性风湿性疾病儿童的简短、易于实施和评分的HRQOL量表。它适用于不同年龄组和识字水平。具有可用翻译版本的SMILY©-疾病量表可作为临床实践和研究的有用辅助工具。
