QoL In The Parents Of Children With Chronic Disease
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).
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Research article overview in layman's terms.
This study explored the development and evaluation of a new questionnaire specifically designed to measure the health-related quality of life (HRQoL) of parents of children with chronic diseases like asthma and diabetes.
Through an initial inventory and cognitive debriefing, the study identified the most troubling issues that parents experience. A questionnaire was developed with 15 questions that covered issues related to emotions, symptoms, and roles. After psychometric testing that involved 98 parents, the study found that the questionnaire had good internal consistency, reliability, and construct validity. The results also showed that parents of children with stable diseases had higher scores than those of parents with unstable diseases.
This questionnaire is a helpful tool for understanding how chronic disease can affect parents and can help health care professionals provide better care.
Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease
Abstract
Children With Chronic Disease
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 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.
Conclusions
The 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.
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