Impact of pain on the health related quality of life in children and adolescents with cystic fibrosis

Abstract

Pain has been shown to reduce health related quality of life (HRQOL) in children with chronic health conditions (e.g., sickle cell disease). Assessment of HRQOL in youth with cystic fibrosis (CF) is important to better understand disease and treatment-related factors that impact function and well-being. Thus, the goal of this study was to examine the impact of pain on the HRQOL in children and adolescents with CF. After obtaining parental informed consent and child assent, forty-four subjects (22 males, 22 females) ages 8-17 were enrolled. Participants completed two survey instruments to measure HRQOL and pain. The Cystic Fibrosis Questionnaire (CFQ) is a disease-specific HRQOL questionnaire designed to measure the physical , emotional, and social impact of CF. The pain questionnaire used standardized measures of frequency, duration, intensity and location of pain. Children and adolescents who reported having weekly pain had statistically significantly reduced scores on certain CFQ HRQOL scales compared to children and adolescents who reported less frequent pain. Specifically, adolescents (14-17) with frequent pain had greater role limitations in school or work (p < 0.01), lower vitality (p < 0.01), and perceived health (p = 0.02). Both children (ages 8-13) and adolescents with frequent pain reported more physical limitations (p < 0.01), eating disturbances (p = 0.02), greater treatment burden (p < 0.05), and increased respiratory symptoms (p < 0.01), and digestion symptoms (p = 0.01). Additionally, increased pain duration, the degree pain was bothersome, pain intensity, and pain locations were each associated with decreased HRQOL scales. Preliminary findings indicate that frequent pain produces a broad negative impact on the HRQOL of children and adolescents with CF. Further research is needed to examine the epidemiology of pain in this population and potential treatment options for pain relief with the goal of increasing the HRQOL. Pain has been shown to reduce health related quality of life (HRQOL) in children with chronic health conditions (e.g., sickle cell disease). Assessment of HRQOL in youth with cystic fibrosis (CF) is important to better understand disease and treatment-related factors that impact function and well-being. Thus, the goal of this study was to examine the impact of pain on the HRQOL in children and adolescents with CF. After obtaining parental informed consent and child assent, forty-four subjects (22 males, 22 females) ages 8-17 were enrolled. Participants completed two survey instruments to measure HRQOL and pain. The Cystic Fibrosis Questionnaire (CFQ) is a disease-specific HRQOL questionnaire designed to measure the physical , emotional, and social impact of CF. The pain questionnaire used standardized measures of frequency, duration, intensity and location of pain. Children and adolescents who reported having weekly pain had statistically significantly reduced scores on certain CFQ HRQOL scales compared to children and adolescents who reported less frequent pain. Specifically, adolescents (14-17) with frequent pain had greater role limitations in school or work (p < 0.01), lower vitality (p < 0.01), and perceived health (p = 0.02). Both children (ages 8-13) and adolescents with frequent pain reported more physical limitations (p < 0.01), eating disturbances (p = 0.02), greater treatment burden (p < 0.05), and increased respiratory symptoms (p < 0.01), and digestion symptoms (p = 0.01). Additionally, increased pain duration, the degree pain was bothersome, pain intensity, and pain locations were each associated with decreased HRQOL scales. Preliminary findings indicate that frequent pain produces a broad negative impact on the HRQOL of children and adolescents with CF. Further research is needed to examine the epidemiology of pain in this population and potential treatment options for pain relief with the goal of increasing the HRQOL.