TAILIEUCHUNG - báo cáo hóa học:" Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease"

Tuyển tập các báo cáo nghiên cứu về hóa học được đăng trên tạp chí hóa học đề tài : Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease | Farnik et al. Health and Quality of Life Outcomes 2010 8 151 http content 8 1 151 HEALTH AND QUALITY OF LIFE OUTCOMES RESEARCH Open Access Development evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease I A tzA Z A 7 - p -A z ZA I lz z 7 r r 7 r 7 D 7 7 7r lz2 A r A zz J A A A 0izAr-TZ l _ A1lz C 7 7 I z l -A 2 i I Ca -a I c t7 7 7 ZZAZA lz3 r I I Izz I 7 A A I T A lz4 iviatgorzata rarniK Grzegorz BrozeK Wiadysiaw rierzcnaia Jan E zejda Micnai SKrzypeK -LuKasz Walczak Abstract Background Childhood chronic disease may affect patients and their family s functioning. Particularly parents who play an important role in cooperation between patient and health care professionals report impaired health -related quality of life HRQOL . The aim of this study was development evaluation and validation of a new instrument Quality of Life in a Child s Chronic Disease Questionnaire QLCCDQ . The questionnaire is addressed to parents of children with a chronic disease. Methods Study design included semi structured interview and qualitative study which allowed to identify most troublesome problems. Following the results the questionnaire was developed which consists of 15 questions and covers domains - emotions patients -perceived symptoms roles limitations. An observational study involving parents of asthma and diabetes children was conducted to assess the psychometric characteristics of the measure. Psychometric testing was based on the reliability of defined subscales construct validity reproducibility assessment as well as comparison between stable unstable disease stages and parents of healthy children. Results Most troublesome concerns for parents of child with chronic disease included emotional distress and feeling depressed due to child s disease avoiding social interactions due to child s disease or symptoms. 98 parents of children with asthma or insulin - depended diabetes .

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