scholarly journals The quality of life in Chinese juvenile idiopathic arthritis patients: psychometric properties of the pediatric quality of life inventor generic core scales and rheumatology module

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Hua-hong Wu ◽  
Feng-qi Wu ◽  
Yang Li ◽  
Jian-ming Lai ◽  
Gai-xiu Su ◽  
...  

Abstract Background Juvenile idiopathic arthritis (JIA) may seriously affects patients’ quality of life (QoL), but it was rarely focused and studied in China, so we explore JIA children’s QoL using Chinese version of the PedsQL4.0 Generic Core and PedsQL3.0 Rheumatology Module scale, and analyzed the psychometric properties of these two Scales among Chinese JIA children. Methods We recruited 180 JIA patients from Children's Hospital Affiliated to Capital Institute of Pediatrics and Hebei Yanda Hospital from July 2018 to August 2019. The questionnaires include information related on JIA, PedsQL4.0 generic core and PedsQL3.0 Rheumatology Module scales. According to the disease type, onset age of and course of JIA, we divided them into different groups, then compared the QoL status among different groups. Moreover, we analyzed the reliability and validity of these two scales in these 180 JIA children. Results The mean score of PedsQL4.0 generic core scale on these 180 patients was 82.85 ± 14.82, for these in active period was 72.05 ± 15.29, in remission period was 89.77 ± 9.23; the QoL score of systemic, polyarticular and oligoarticular JIA patients were 77.05 ± 19.11, 84.33 ± 12.46 and 87.12 ± 10.23. The mean score of PedsQL3.0 Rheumatology Module scale on 180 patients was 91.22 ± 9.45, for these in active period was 84.70 ± 11.37, in remission period was 95.43 ± 4.48; the QoL score of systemic, polyarticular and oligoarticular JIA patients were 89.41 ± 11.54, 89.38 ± 10.08 and 93.71 ± 6.92. In the PedsQL 4.0 Generic Core scale, the α coefficients of total scale and almost every dimension are all greater than 0.8 except for the school activity dimension of 0.589; the correlation coefficients of 22 items’ scores (total 23 items) with the scores of dimensions they belong to are greater than 0.5 (maximum value is 0.864), and the other one is 0.406. In PedsQL3.0 Rheumatology Module scale, except for the treatment and worry dimensions of 0.652 and 0.635, the α coefficients of other dimensions and the total scale are all greater than 0.7; the correlation coefficients of all items’ score were greater than 0.5 (the maximum is 0.933, the minimum is 0.515). Conclusions The QoL of Chinese JIA children is worse than their healthy peers, these in active period and diagnosed as systemic type were undergoing worst quality of life. The reliability and validity of PedsQL 4.0 Generic Core and PedsQL3.0 Rheumatology Module scale in Chinese JIA children are satisfactory, and can be used in clinical and scientific researches.

2020 ◽  
Vol 34 (4) ◽  
pp. 532-536 ◽  
Author(s):  
Arthur W. Wu ◽  
Evan S. Walgama ◽  
Thomas S. Higgins ◽  
Michela Borrelli ◽  
Narine Vardanyan ◽  
...  

Background Chronic rhinosinusitis (CRS) has long been a suspected risk factor for Eustachian tube dysfunction (ETD). However, there have been few studies quantifying the presence of ETD in CRS patients. We sought to determine the prevalence of ETD symptoms in patients undergoing functional endoscopic sinus surgery (FESS) for CRS using the validated 7-item Eustachian Tube Dysfunction Questionnaire (ETDQ-7) and to correlate the ETDQ-7 scores with scores of CRS symptom severity based on the 22-item Sino-Nasal Outcome Test (SNOT-22). Methods Patients for FESS were preoperatively administered both the ETDQ-7 and the SNOT-22 validated quality of life instruments. Pearson and Spearman correlation coefficients were calculated. Changes in ETDQ-7 were measured at 3 months and differences were compared via paired t test. Results A total of 82 patients completed the surveys. Thirty-nine (47.6%) patients had ETDQ-7 score ≥14.5, signifying clinically significant ETD symptoms. The mean ETDQ-7 score of the study population was 15.8 ± 8.8, and the mean SNOT-22 score was 37.5 ± 19.7. The Pearson and Spearman correlation coefficients between ETDQ-7 and the total SNOT-22 score were 0.52 ( P > .0001) and 0.51 ( P < .0001), respectively. There was significant improvement in ETDQ-7 scores postoperatively. Conclusion While the association between ETD and CRS has long been known, this is one of the few prospective patient studies evaluating otologic symptoms in a CRS population. We found that a significant percentage of CRS patients suffer from ETD symptoms based on patient-reported subjective outcome measures. This study demonstrates that otologic symptoms increase with CRS severity and improve after FESS.


2021 ◽  
Vol 104 (1) ◽  
pp. 136-140

Background: The Cerebral Palsy Quality of Life for Children (CP QOL-Child) questionnaires are condition-specific QOL measures for children with CP focusing on perspectives of children with CP on their quality of life, not on their physical difficulties. The perspectives of well-being are core concepts of quality of life. The CP QOL-Child has already been translated in Thai and the reliability is excellent. The validity after the translation has not been conducted and is required. therefore, it is needed to examine the validity to ensure the clinical practicality. Objective: To examine feasibility and concurrent validity of the CP QOL-Child (Thai version). Materials and Methods: Eighty-five primary caregivers of 4- to 12-year-old children and 65 children between 9- and 12-years-old, who passed the inclusion criteria, completed three questionnaires including the CP QOL-Child (Thai version), the PedsQL 4.0 Generic Core Scales, and the PedsQL 3.0 CP module (Thai version). Results: For feasibility of the CP QOL-Child, no missing items were found in any items for the child self-report. For parent proxy report, missing items were scattered and from 1.2% to 7.1%. For concurrent validity, according to the total scores of both versions, the self-report and the parent proxy, the correlation coefficients between CP QOL-Child and PedsQL 4.0 Generic Core Scales were 0.23 to 0.25 meaning no or little correlations, at significance level of 0.05. The correlation coefficients between the CP QOL-Child and the PedsQL CP module were 0.38 to 0.49, meaning fair correlations, at significance level of 0.01. Conclusion: The feasibility of the CP QOL-Child (Thai version) was reportedly acceptable. The concurrent validity support that the CP QOL-Child may not measure the quality of life at the same constructs as the PedsQL. The CP QOL-Child asks the client’s perspectives of quality of life (QOL) while both PedsQL modules ask the client’s difficulties that might relate to QOL. Keywords: Health-related quality of life, CP QOL-Child, Cerebral palsy, Feasibility, Validity


2014 ◽  
Vol 13 (2) ◽  
pp. 170-177 ◽  
Author(s):  
Christian Schneider ◽  
Eveline Teresa Hidalgo ◽  
Thomas Schmitt-Mechelke ◽  
Karl F. Kothbauer

Object Presently, the best available treatment for intramedullary spinal cord tumors (IMSCTs) in children is microsurgery with the objective of maximal tumor removal and minimal neurological morbidity. The latter has become manageable with the development and standard use of intraoperative neurophysiological monitoring. Traditionally, the perioperative neurological evaluation is based on surgical or spinal cord injury scores focusing on sensorimotor function. Little is known about the quality of life after such operations; therefore, this study was designed to investigate the impact of surgery for IMSCTs on the quality of life in children. Methods Twelve consecutive pediatric patients treated for IMSCT were included in this retrospective fixed cohort study. A multidimensional questionnaire-based quality of life instrument, the Pediatric Quality of Life Questionnaire version 4 (PedsQL 4.0), was chosen to analyze follow-up data. This validated instrument particularly allows for a comparison between a patient cohort and a healthy pediatric sample population. Results Of 11 mailed questionnaires (1 patient had died of progressive disease), 10 were returned, resulting in a response rate of 91%. There were 8 low-grade lesions (5 pilocytic astrocytomas, 1 ganglioglioma, 1 hemangioblastoma, and 1 cavernoma) and 4 high-grade lesions (2 anaplastic gangliogliomas, 1 glioblastoma, and 1 glioneuronal tumor). The mean age at diagnosis was 7.5 years, the mean follow-up was 4.2 years, and 83% of the patients were male. Total resection was achieved in 5 patients and subtotal resection in 7. Four patients had undergone 2 or more resections. The 4 patients with high-grade tumors and 2 with incompletely resected low-grade tumors underwent adjuvant treatment (2 chemotherapy and 4 both radiotherapy and chemotherapy). The mean modified McCormick Scale score at the time of diagnosis was 1.7; at the time of follow-up, 1.5. The mean PedsQL 4.0 total score in the low-grade group was 78.5; in the high-grade group, 82.6. There was no significant difference in PedsQL 4.0 scores between the patient cohort and the normal population. Conclusions In a small cohort of children who had undergone surgery for IMSCTs with a mean follow-up of 4.2 years, quality of life scores according to the PedsQL 4.0 instrument were not different from those in a normal sample population.


1997 ◽  
Vol 12 (4) ◽  
pp. 199-202 ◽  
Author(s):  
H Tuynman-Qua ◽  
F de Jonghe ◽  
S.P. McKenna

SummaryThe joint development of the Dutch and English versions of the Quality of Life in Depression Scale (QLDS) is described. The QLDS is based on the needs model of quality of life developed by Hunt and McKenna. The scale has good reliability and internal consistency. Test-retest correlation coefficients were 0.94 and 0.87 in the United Kingdom and the Netherlands, respectively. Internal consistency alpha-coefficients were 0.95 and 0.92, respectively. The validity of the scale is highly acceptable. The QLDS was shown to correlate relatively highly with established measures of well-being, and scores obtained with the measure were related to severity of depression as assessed by the Hamilton Rating Scale for Depression. The QLDS was shown to be responsive to change in an open study with fluoxetine in 540 patients with major depression. The scale has wide applicability and has been shown to be user-friendly, both for respondents and administrators. It has been, or is in the process of being, tested for reliability and validity in the following additional countries: Australia, Austria, Belgium, Canada, Denmark, France, Germany, Italy, Morocco, Spain and the United States.


2021 ◽  
Author(s):  
Zhen Yang ◽  
Haizhen Lu ◽  
Baolin Zou ◽  
Yixin Luo ◽  
Ping Zhao ◽  
...  

Abstract Background Many patients on maintenance haemodialysis (MHD) eventually suffer from cachexia. The Functional Assessment of Anorexia/Cachexia Therapy (FAACT) is a tool used to evaluate the quality of life of patients with cachexia related to various diseases, but its suitability for use in MHD patients has yet to be verified. This study aims to explore the applicability of the FAACT in MHD patients by conducting reliability and validity tests.Methods Qualified MHD patients were selected to complete the FAACT and Kidney Disease Quality of Life Short Form 36 (KDQOL-36) questionnaires, and their demographic data and biochemical test results were collected from electronic medical records. Then, statistical software was used to perform a reliability test, and Pearson correlation analysis was carried out with KDQOL-36 as the calibration scale. Finally, the patients were divided into groups to evaluate discriminant validity.Results A total of 299 patients were included in this study. The Cronbach’s alpha coefficients of the FAACT and its anorexia-cachexia subscale (ACS) were 0.904 and 0.842, respectively, and their test–retest reliability exceeded 0.85. The correlation coefficients between the FAACT and its items ranged from 0.146 to 0.631, and the correlation coefficients between the FAACT and KDQOL-36 dimensions ranged from 0.446 to 0.617. The effects of cachexia status (present or absent) on FAACT and ACS scores had effect sizes of 0.54 (P<0.001) and 0.60 (P<0.001), respectively. The FAACT and ACS also significantly discriminated between patients with and without inflammation (P<0.001). Conclusions The FAACT and ACS have acceptable reliability and validity in MHD patients and are suitable for measuring the quality of life of MHD patients with cachexia.


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