Abstract
BackgroundChildhood 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.MethodsStudy 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.ResultsMost 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 participated in the psychometric testing of QLCCDQ. Internal consistency reliability for the defined subscales ranged between 0.77 and 0.93. Reproducibility based on the weighted kappa coefficients showed expected level of agreement and was almost perfect in case of 8 questions, substantial for 5 questions and moderate for 2 questions. QLCCDQ demonstrated very good construct validity - all subscales showed statistically significant correlations ranging from 0.4 to 0.9. QLCCDQ scores differed significantly by clinical status - parents of children qualified as stable presented higher scores in most subscales in comparison to parents of children with unstable disease.ConclusionsThe QLCCDQ shows good internal consistency, test-retest reliability, and construct validity. The questionnaire may be useful in helping to understand the impact of chronic child's disease on parental perception of health outcomes.
Highlights
Childhood chronic disease may affect patients’ and their family’s functioning
Pediatrics is unique among medical specialties especially because of the presence of parents when health care is provided for the child
The purpose of this paper is to describe the development of the QLCCDQ and report on the assessment of its validity and reliability
Summary
Childhood chronic disease may affect patients’ and their family’s functioning. 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). An increasing interest of the impact of disease on everyday functioning is leading to the development and implementation of health - related quality of life (HRQOL) measures in many studies. Chronic disease may affect patients’ functioning, but other family members as well. Pediatrics is unique among medical specialties especially because of the presence of parents when health care is provided for the child. This requires a family-oriented approach to care [8]. Several studies show that parents are reliable at reporting symptoms and physical function, but less reliable at reporting cognitive and emotional wellbeing of the child [9]
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