Health-related Quality of Life of Children Treated for Non-syndromic Craniosynostosis

Author(s):  
Marizela Kljajic ◽  
Giovanni Maltese ◽  
Peter Tarnow ◽  
Peter Sand ◽  
Lars Kölby

Abstract Background: Assessing health-related quality of life (HRQoL) allows acquisition of the subjective perspective of patients regarding their health and functioning; however, little is known about the experiences of patients living with treated craniosynostosis (CS). Methods: School-aged children (7–16 years) treated for non-syndromic CS were assessed using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales via both self- and proxy reports.Results: Seventy-three patients and their parents responded to the PedsQL (response rate: 80.2%). Patients generally estimated HRQoL as high, with no difference in HRQoL found between treated sagittal (SS) or metopic (MS) synostosis. In the SS group, surgical methods involving spring-assisted surgery and pi-plasty were unrelated to HRQoL outcomes. Additionally, HRQoL was highly correlated with intelligence quotient (IQ) and adaptive behavior skills (ABAS). Furthermore, we observed differences in estimated HRQoL between self- and proxy reports (i.e., parents estimated child HRQoL as higher than did the children). Conclusions: Children treated for CS have a generally high HRQoL, and neither CS type nor surgical method influenced HRQoL outcomes. Moreover, children and parents estimated HRQoL differently, suggesting the importance of using both self- and proxy reporting in patient-reported measures. We found that HRQoL was strongly related to IQ and ABAS, indicating that the PedsQL can be used as a screening instrument to identify craniofacial patients in need of further psychological assessment.

2018 ◽  
Vol 25 (4) ◽  
pp. 140-151
Author(s):  
Markus A. Wirtz ◽  
Matthias Morfeld ◽  
Elmar Brähler ◽  
Andreas Hinz ◽  
Heide Glaesmer

Abstract. The association between health-related quality of life (HRQoL; Short-Form Health Survey-12; SF-12) and patient-reported morbidity-related symptoms measured by the Patient Health Questionnaire-15 (PHQ-15) is analyzed in a representative sample of older people in the general German population. Data from 1,659 people aged 60 to 85 years were obtained. Latent class analysis identified six classes of patients, which optimally categorize clusters of physical symptoms the participants reported: musculoskeletal impairments (39.8%), healthy (25.7%), musculoskeletal and respiratory/cardiac impairments (12.8%), musculoskeletal and respiratory impairments, along with bowel and digestion problems (12.9%), general impairments (4.9%), and general impairments with no bowel and digestion problems (4.8%). The participants’ SF-12 Physical Health Scores (η2 = .39) and their Mental Health Scores (η2 = .28) are highly associated with these latent classes. These associations remain virtually identical after controlling for age. The results provide evidence that profiles of patient-reported physical impairments correspond strongly with reduced HRQoL independently from aging processes.


Author(s):  
Rena Maimaiti ◽  
Zhang Yuexin ◽  
Pan Kejun ◽  
Maimaitaili Wubili ◽  
Christophe Lalanne ◽  
...  

In total, 679 HIV-positive patients from 4 clinics in Urumqi city were given structured questionnaires by the doctors or nurses treating them. Health-related quality of life (HRQL) was assessed using the Chinese Patient-Reported Outcome Quality of Life-HIV questionnaire versions in Mandarin and Uyghur. This tool has been used in other parts of China and several countries. Compared to France, Australia, United States, Brazil, Thailand, Cambodia, Senegal, and Central-Southern China (CS China), the HRQL was significantly lower among HIV-positive patients in Xinjiang, with regard to the dimension of treatment impact and general health score. The health concern was similar to Brazil and Cambodia but lower than other countries and CS China. Our findings showed high stigmatization: 86% of the patients were afraid to tell others they were HIV positive and 69% often felt or always felt depressed. Only 1% of the patients were on antidepressant treatment.


2021 ◽  
Vol 264 ◽  
pp. 394-401
Author(s):  
Mary Kate Luddy ◽  
Rachel Vetter ◽  
Jessica Shank ◽  
Whitney Goldner ◽  
Anery Patel ◽  
...  

Sign in / Sign up

Export Citation Format

Share Document