Background Childhood systemic vasculitis are a group of rare diseases with multi-organ involvement and potentially devastating consequences. The biomedical perspective does not take into account a patient’s own psychological perspective. Patients’ subjective experiences may represent the key domains of illness that differ from clinicians’ views.
Objectives The aim of the study is to develop an multidimensional assessment instrument named “Juvenile Vasculitis Multidimensional Assessment Report” (JVAMAR) to measure all these domains. In this study it will be presented the data of “Qualitative Interviews”, one of the steps of item generation in JVAMAR.
Methods Twelve children with vasculitis and their mother were enrolled to this study. Data were collected using both a demographic data form and a semi-structured interview form. Study was made on individual patient interview by face-to-face manner.
Results Data analysis by grounded theory revealed four categories. These categories were (1) physical impact of disease, (2) emotional impact of disease, (3) social impact of disease and (4) complaints about treatment protocols. In the physical impact category, severe pain, hypersensitivity to cold, restriction in movement, weakness, fatigue, frequently upper respiratory tract infections, anorexia and hypertension were the prominent features. As emotional impact, the most common features were thought of death, pessimism, hopelessness, weak adaptation of social environment relevant to patients age, increased mother dependency, anxiety about treatment and future life, dissatisfaction about body image according to medical therapy and emotional hypersensitivity. In the social impact category, the patients reported that difficulty to access to health services, economic problems, decrease in academic performance, absenteeism to school, increased religious behavior and thoughts, conceal the sickness from friends. In the complaints about treatment protocols category, many patients reported improved health status after treatment but fear about having a chronic disease although the drug use regularly, they complained from life time drug use and frequency of daily drug doses.
Conclusions Children with vasculitis imply that they experience several difficulties regarding physical, emotional and social aspects and treatment protocols. There is a need to develop a multidimensional instrument to measure important domains of the illness such as quality of life, the burden of disease in vasculitis, defined as the impact of permanent damage on the patient and its assessment.
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Herlyn K, Hellmich B, Seo P, Merkel P, Patient-Reported Outcome Assessment in Vasculitis May Provide Important Data and a Unique Perspective, AC & R 2010;62:11:1639–45
Disclosure of Interest None Declared
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