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SP0191 Measuring Quality of Life in Young Adults with Jia in Clinical Practice
  1. L. Haverman
  1. Psychosocial department, Emma Children's Hospital/AMC, Amsterdam, Netherlands

Abstract

Background Children and adolescents with Juvenile Idiopathic Arthritis (JIA) are at risk for the development of psychosocial problems and a lowered Health Related Quality of Life (HRQOL). These problems are not always identified during consultations with a rheumatologist. Therefore, adequate screening, monitoring and providing tailored interventions is necessary. The goal of the KLIK program is therefore to monitor the HRQOL and psychosocial functioning of children and young adults with chronic illnesses over extended periods of time and to facilitate communication between patient and practitioner. Children (0-18 years) or their parents complete questionnaires on www.hetklikt.nu before a consultation. The basis of KLIK is a generic HRQOL questionnaire. The decision of disease-specific HRQOL and psychosocial questionnaires is based on focus groups with practitioners. The answers on the questionnaires (Patient Reported Outcomes) are converted into a KLIK ePROfile. The KLIK ePROfile consists of a literal representation of the answers and a graphic presentation. The KLIK ePROfiles are available prior to a consultation. The practitioner retrieves the ePROfile from the website and discusses this with the patient and parents. The KLIK program is effective in increasing discussion about emotional and psychosocial functioning in pediatric care. However, young adults can also benefit from the use of KLIK in adult care. The aim of this project is to adapt the KLIK program for young adults and facilitate transition.

Methods To adapt the website for young adults (16-30 years) we will conduct focus groups in order to select the most important themes. To know where their major problems in psychosocial functioning and HRQOL are and to select the most suitable questionnaires for feedback in the KLIK program, we will conduct a cross-sectional study. After this we will change the lay-out of the website to make it more usable for young adults.

Results Since implementation began in pediatric care in 2011, 31 patient groups, (including children with JIA) over 300 professionals in 8 different hospitals and around 3000 pediatric patients have started using KLIK in the Netherlands. The first steps in adapting KLIK for young adults are taken by conducting the first focus groups and by adding transition-specific questionnaires to the KLIK website.

Conclusions The implementation of KLIK appears to be feasible and workable in pediatric care, and with information from focus groups, cross-sectional research and adaption of the website for young adults we will explore if the program is also feasible in adult care.

Disclosure of Interest None declared

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