A new short and simple health-related quality of life measurement for paediatric rheumatic diseases: initial validation in juvenile idiopathic arthritis.

نویسندگان

  • Giovanni Filocamo
  • Benedetta Schiappapietra
  • Marta Bertamino
  • Angela Pistorio
  • Nicolino Ruperto
  • Silvia Magni-Manzoni
  • Stefano Lanni
  • Claudia Saad-Magalhaes
  • Roberta Galasso
  • Bianca Lattanzi
  • Valentina Muratore
  • Daniela Tani
  • Alberto Martini
  • Angelo Ravelli
چکیده

OBJECTIVE To develop and validate a new short and simple measure of health-related quality of life (HRQL) in children with juvenile idiopathic arthritis (JIA). METHODS The Paediatric Rheumatology Quality of Life Scale (PRQL) is a 10-item questionnaire that explores HRQL in two domains: physical health (PhH) and psychosocial health (PsH). Validation of the parent proxy report and child self-report versions of the instrument was accomplished by evaluating 472 JIA patients and approximately 800 healthy children. Validation analyses included assessment of feasibility, face and content validity; construct and discriminative ability; internal structure and consistency; test-retest reliability; responsiveness to clinical change; and minimal clinically important difference. RESULTS The PRQL was found to be feasible and to possess both face and content validity. The PRQL score correlated in the predicted range with most of the other JIA outcome measures, thereby demonstrating good construct validity, and discriminated well between different levels of disease severity. Assessment of internal structure (factor analysis) revealed that the PhH and PsH subscales identify two unambiguously separated domains. The internal consistency (Cronbach's alpha) was 0.86. The intraclass correlation coefficient for test-retest reliability was 0.91. The PRQL revealed fair responsiveness, with a standardized response mean of 0.67 in improved patients. Overall, the PRQL appeared to be more able to capture physical HRQL than psychosocial HRQL. CONCLUSION The PRQL was found to possess good measurement properties and is, therefore, a valid instrument for the assessment of HRQL in children with JIA. This tool is primarily proposed for use in standard clinical care.

برای دانلود متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید

ثبت نام

اگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید

منابع مشابه

Assessment of Health Related Quality of Life (HRQL) in Egyptian Children with Rheumatic Diseases; Its Relation to Disease Activity and Functional Disability

Background Many pediatric rheumatic diseases persist into adulthood, with negative squeal from the disease or its treatment. We aimed to assess health related quality of life in a group of children with rheumatic diseases and its relation to disease activity and functional disability.  Materials and Methods Fifty one patients were divided into three groups: Group 1 includes 27 patients diagnose...

متن کامل

Growth Assessment and Vitamin D Level in Egyptian Juvenile Idiopathic Arthritis Patients

Background Juvenile idiopathic arthritis (JIA) is one of the most common rheumatic diseases in childhood and is frequently associated with growth retardation. Vitamin D is critical to bone mineral metabolism and to the growth and development of the skeleton. We aimed to...

متن کامل

Turkish version of the pediatric quality of life inventory (PedsQL) 3.0 arthritis module: a reliability and validity study

Background and aim Most research on health-related quality of life (HRQoL) to date has focused on adults. However, the need to address QoL issues in chronically ill children has become a priority. The measuring of HRQoL, especially for these chronically ill children, is of importance not only for describing their actual situation and their health care needs, but also for evaluating clinical int...

متن کامل

Sleep, fatigue and quality of life in juvenile idiopathic arthritis (JIA) and Juvenile Dermatomyositis (JDM)

Fatigue was related to prednisone and methotrexate use as reported by patients and parents. Conclusion Sleep disturbance and fatigue are prevalent among children with different rheumatic diseases. Sleep disturbance and fatigue are strongly related to increases in pain and decreases in quality of life. Strategies aimed at improving sleep should be studied as possible ways of improving quality of...

متن کامل

Macrophage Activation Syndrome as the First Presentation of Juvenile Idiopathic Arthritis

Macrophage activation syndrome (MAS) is a rare feature of rheumatic disorders in children and adolescence and its presentation as the first symptom of rheumatic disorders is very infrequent. A 9-year-old girl, in whom MAS developed, was admitted to our Hospital in Tehran, Iran. She suffered from high grade fever and rash followed by multiple joint swelling months afterwards. Bone marrow aspira...

متن کامل

ذخیره در منابع من


  با ذخیره ی این منبع در منابع من، دسترسی به آن را برای استفاده های بعدی آسان تر کنید

برای دانلود متن کامل این مقاله و بیش از 32 میلیون مقاله دیگر ابتدا ثبت نام کنید

ثبت نام

اگر عضو سایت هستید لطفا وارد حساب کاربری خود شوید

عنوان ژورنال:
  • Rheumatology

دوره 49 7  شماره 

صفحات  -

تاریخ انتشار 2010