Childrens' and parents' beliefs about childhood onset scleroderma are influenced by child age and physical function impairment

摘要

Sir, Childhood scleroderma is a rare and potentially debilitating condition occurring as part of the multisystem disease SSc or (more commonly) localized and confined to the skin and subcutaneous tissues [1, 2]. Assessments of quality of life have thus far focused on localized scleroderma and its impact on self-perception [3] and the physical appearance of skin lesions [4]. Empirical literature suggests, however, that patients construct their own common sense cognitive model of their medical condition [5]. These patient-held beliefs are of fundamental importance in adjustment and influence psychological outcomes such as distress, coping and functional disability [6]. Previous studies in adult scleroderma have illustrated that illness beliefs are an important factor in patients' emotional responses [7], but to date, no attempt has been made to assess beliefs about the illness experience of childhood scleroderma or correlate these beliefs with demographic and clinical factors.