儿童镰状细胞病患者健康相关生活质量与疼痛相关变化的 PedsQL 反应性。
Responsiveness of the PedsQL to pain-related changes in health-related quality of life in pediatric sickle cell disease.
机构信息
Department of Psychology, University of South Carolina, Columbia, SC 29208, USA.
出版信息
J Pediatr Psychol. 2012 Aug;37(7):798-807. doi: 10.1093/jpepsy/jss051. Epub 2012 Mar 30.
Abstract
OBJECTIVE
To determine if caregiver report of the pediatric quality of life inventory (PedsQL) is responsive to changes in health-related quality of life (HRQL) associated with pain episodes in pediatric sickle cell disease (SCD).
METHODS
81 caregivers of children ages 2-19 years with SCD completed the PedsQL as part of routine psychosocial screenings at 2 time points, ranging from 6 to 18 months apart. Frequency of SCD-related pain episodes between time points was assessed using medical chart review.
RESULTS
The frequency of pain episodes between time points was a significant predictor of decreases in physical, psychosocial, and total HRQL, even after controlling for time interval, demographic, and medical variables.
CONCLUSIONS
The caregiver report of the PedsQL appears to be a useful tool for capturing changes in HRQL over time associated with pain episodes in SCD.
摘要
目的
确定照料者报告的儿科生活质量量表（PedsQL）是否能反映与小儿镰状细胞病（SCD）相关的疼痛发作的健康相关生活质量（HRQL）变化。
方法
81 名年龄在 2 至 19 岁的 SCD 患儿的照料者在 2 个时间点完成了 PedsQL，时间间隔从 6 到 18 个月不等。通过病历回顾评估两次就诊之间 SCD 相关疼痛发作的频率。
结果
即使控制了时间间隔、人口统计学和医学变量，两次就诊之间疼痛发作的频率仍是身体、心理社会和总体 HRQL 下降的显著预测因素。
结论
照料者报告的 PedsQL 似乎是一种有用的工具，可用于随时间捕捉与 SCD 相关的疼痛发作相关的 HRQL 变化。
相似文献
1
Responsiveness of the PedsQL to pain-related changes in health-related quality of life in pediatric sickle cell disease.
J Pediatr Psychol. 2012 Aug;37(7):798-807. doi: 10.1093/jpepsy/jss051. Epub 2012 Mar 30.
2
Clinically meaningful interpretation of pediatric health-related quality of life in sickle cell disease.
J Pediatr Hematol Oncol. 2015 Mar;37(2):128-33. doi: 10.1097/MPH.0000000000000177.
3
Vaso-occlusive painful events in sickle cell disease: impact on child well-being.
Pediatr Blood Cancer. 2010 Jan;54(1):92-7. doi: 10.1002/pbc.22222.
4
Cognitive Abilities Moderate the Effect of Disease Severity on Health-Related Quality of Life in Pediatric Sickle Cell Disease.
J Pediatr Psychol. 2018 Sep 1;43(8):882-894. doi: 10.1093/jpepsy/jsy019.
5
Neuropathic pain is associated with poor health-related quality of life in adolescents with sickle cell disease: A preliminary report.
Pediatr Blood Cancer. 2020 Dec;67(12):e28698. doi: 10.1002/pbc.28698. Epub 2020 Oct 8.
6
Agreement between youth and caregiver report of pain and functioning in pediatric sickle cell disease: PedsQL sickle cell disease module.
Pain. 2024 Mar 1;165(3):715-722. doi: 10.1097/j.pain.0000000000003079. Epub 2023 Oct 26.
7
Quality of life assessments in a cohort of Mozambican children with sickle cell disease.
Pan Afr Med J. 2020 Aug 25;36:343. doi: 10.11604/pamj.2020.36.343.24837. eCollection 2020.
8
Neurocognitive and psychological effects of persistent pain in pediatric sickle cell disease.
Pediatr Blood Cancer. 2019 Sep;66(9):e27823. doi: 10.1002/pbc.27823. Epub 2019 May 27.
9
Executive Functioning Mediates the Relationship Between Pain Coping and Quality of Life in Youth With Sickle Cell Disease.
J Pediatr Psychol. 2018 Nov 1;43(10):1160-1169. doi: 10.1093/jpepsy/jsy057.
10
Health-related Quality of Life in Children With Sickle Cell Disease Undergoing Chronic Red Cell Transfusion Therapy.
J Pediatr Hematol Oncol. 2019 May;41(4):307-312. doi: 10.1097/MPH.0000000000001376.
引用本文的文献
1
The Burden of Sickle Cell Disease on Children and Their Caregivers: Caregiver Reports of Children's Health-Related Quality of Life and School Experiences, Caregiver Burden, and Their Association with Frequency of Vaso-Occlusive Crises.
Patient Relat Outcome Meas. 2023 Nov 28;14:369-381. doi: 10.2147/PROM.S419607. eCollection 2023.
2
Health-Related Quality of Life Assessments by Children and Adolescents with Sickle Cell Disease and Their Parents in Portugal.
Children (Basel). 2022 Feb 18;9(2):283. doi: 10.3390/children9020283.
3
Nocturnal Enuresis in Sickle Cell: Sociodemographic, Medical, and Quality of Life Factors.
J Pediatr Psychol. 2022 Feb 3;47(1):75-85. doi: 10.1093/jpepsy/jsab079.
4
End points for sickle cell disease clinical trials: patient-reported outcomes, pain, and the brain.
Blood Adv. 2019 Dec 10;3(23):3982-4001. doi: 10.1182/bloodadvances.2019000882.
5
Brief Screening Measures Identify Risk for Psychological Difficulties Among Children with Sickle Cell Disease.
J Clin Psychol Med Settings. 2020 Dec;27(4):651-661. doi: 10.1007/s10880-019-09654-y.
6
Pain catastrophizing is associated with poorer health-related quality of life in pediatric patients with sickle cell disease.
J Pain Res. 2018 May 8;11:947-953. doi: 10.2147/JPR.S151198. eCollection 2018.
7
PedsQL™ Multidimensional Fatigue Scale in sickle cell disease: feasibility, reliability, and validity.
Pediatr Blood Cancer. 2014 Jan;61(1):171-7. doi: 10.1002/pbc.24776. Epub 2013 Sep 13.
8
Psychosocial burden of sickle cell disease on parents with an affected child in Cameroon.
J Genet Couns. 2014 Apr;23(2):192-201. doi: 10.1007/s10897-013-9630-2. Epub 2013 Jul 24.
9
PedsQL™ sickle cell disease module: feasibility, reliability, and validity.
Pediatr Blood Cancer. 2013 Aug;60(8):1338-44. doi: 10.1002/pbc.24491. Epub 2013 Feb 25.
本文引用的文献
1
Health-related quality of life in children with sickle cell disease: a report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium.
Pediatr Blood Cancer. 2010 Sep;55(3):485-94. doi: 10.1002/pbc.22497.
2
Definitions of the phenotypic manifestations of sickle cell disease.
Am J Hematol. 2010 Jan;85(1):6-13. doi: 10.1002/ajh.21550.
3
Vaso-occlusive painful events in sickle cell disease: impact on child well-being.
Pediatr Blood Cancer. 2010 Jan;54(1):92-7. doi: 10.1002/pbc.22222.
4
Impact of family income and sickle cell disease on the health-related quality of life of children.
Qual Life Res. 2009 Feb;18(1):5-13. doi: 10.1007/s11136-008-9412-8. Epub 2008 Nov 7.
5
The performance of the PedsQL generic core scales in children with sickle cell disease.
J Pediatr Hematol Oncol. 2008 Sep;30(9):666-73. doi: 10.1097/MPH.0b013e31817e4a44.
6
Daily functioning and quality of life in children with sickle cell disease pain: relationship with family and neighborhood socioeconomic distress.
J Pain. 2008 Sep;9(9):833-40. doi: 10.1016/j.jpain.2008.04.002. Epub 2008 Jun 12.
7
Validity of the Pediatric Quality Of Life Inventory for youth with sickle cell disease.
J Pediatr Psychol. 2008 Nov-Dec;33(10):1153-62. doi: 10.1093/jpepsy/jsn036. Epub 2008 Apr 9.
8
G*Power 3: a flexible statistical power analysis program for the social, behavioral, and biomedical sciences.
Behav Res Methods. 2007 May;39(2):175-91. doi: 10.3758/bf03193146.
9
A brief review of the pathophysiology, associated pain, and psychosocial issues in sickle cell disease.
Int J Behav Med. 2005;12(3):171-9. doi: 10.1207/s15327558ijbm1203_6.
10
Health-related quality of life in children with sickle cell disease: child and parent perception.
Br J Haematol. 2005 Aug;130(3):437-44. doi: 10.1111/j.1365-2141.2005.05622.x.
Zotero 插件