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Evaluation of Biopsychosocial Aspects of Patients with Juvenile Autoinflammatory Disease: A Qualitative Study

Dilek Konukbay, Dilek Yildiz, Cengizhan Acikel, Dursun Karaman, Berna Eren Fidanci, Yelda Bilginer, Adem Polat, Isabelle Kone-Paut, Joost Frenkel, Marco Gattorno, Angelo Ravelli, Seza Ozen, Erkan Demirkaya.

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Objective: The aim of this study was to develop a multidimensional assessment instrument named "Juvenile Autoinflammatory Disease Multidimensional Assessment Report" (JAIMAR) to measure all the domains of the autoinflammatory disease. In this qualitative study, it is primarily aimed to enrich the item generation for the JAIMAR.
Methods: Fourteen mothers and their children with autoinflammatory diseases (8 FMF, 4 PFAPA, 1 HIDS, 1 TRAPS) and 6 of those mothers' children older than 7 years of age were enrolled in this study. The data were collected using both a demographic data form and a semi-structured interview form. The study was performed using face-to face interview method with the patients. Collected data were analyzed with grounded theory and N Vivo 10 software program by seven authors
Results: Four categories were obtained. These categories were (1) Definition of the disease (2) Difficulties coming along with the disease (3) Coping with the disease and (4) Medical treatment. When describing how patients define the disease, the signs and symptoms of attacks were highly stated. In describing attacks, beginning and attack triggers were commonly mentioned. Difficulties coming along with the disease in the physical effects theme were the severe pain, physical limitations, weakness and fatigue; in the emotional effects theme were boredom, hopelessness, dissatisfaction about his/her body image and extreme expressions such as depression/ thought of death due to pain; in the social effects theme the decrease in academic performance, absenteeism to school, fear of having attack at school and concealing the sickness from friends; in the knowledge level about the disease, in the challenges related to diagnosis and treatment themes were the most common features. In coping with the disease category, besides the family and social support, turning to religious practices were highly mentioned in terms of coping methods of the patients and their families. In medical treatment category, although decrease in attacks after treatments lifelong drug use and fear of drug's side effects were stated to be the most worrying aspects.
Conclusions: These results provide an evidence based data for the assessment of children with auto-inflammatory disease by several domains including definition of the disease, difficulties coming along with the disease, coping with the disease and medical treatment. The study provides the basis and/or justification for selecting the domains that the developing multidimensional instrument should include.

Key words: childhood auto-inflammatory disease, outcome, proxy reports, qualitative assessment

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