囊性纤维化患儿的生活质量。
Qulaity of life in cystic fibrosis children.
作者信息
Kianifar Hamid-Reza, Bakhshoodeh Banafsheh, Hebrani Paria, Behdani Fatemeh
机构信息
Allergy Research Center, Ghaem Hospital, Mashhad University of Medical Sciences, Mashhad, Iran.
出版信息
Iran J Pediatr. 2013 Apr;23(2):149-53.
Abstract
OBJECTIVE
Cystic fibrosis (CF) is a chronic, multisystem genetic disease with a wide variability in clinical severity. The measurement of quality of life in CF provides additional information about the impact of this disease. This article tries to assess quality of life (QoL) in children and adolescents with CF and to compare it with control group.
METHODS
Patients 2-18 years old with admission diagnosis of cystic fibrosis entered the study. QoL was observed in CF patients and compared with control group.
FINDINGS
Based on children's reports, significant differences between the CF patients and control group were noted for emotional, physical, social, school performance, and total scores (P<0.05). Based on parents' reports, quality of life score in CF patients from the physical point of view as well as social and total scores were decreased (P<0.05).
CONCLUSION
QoL in CF patients seems to be low, and therapy programs should take into account the suggestive perceived quality of life.
摘要
目的
囊性纤维化（CF）是一种慢性多系统遗传病，临床严重程度差异很大。CF患者生活质量的测量为该疾病的影响提供了更多信息。本文旨在评估CF儿童和青少年的生活质量，并与对照组进行比较。
方法
年龄在2至18岁、入院诊断为囊性纤维化的患者进入本研究。观察CF患者的生活质量并与对照组进行比较。
结果
根据儿童报告，CF患者与对照组在情感、身体、社交、学业表现及总分方面存在显著差异（P<0.05）。根据家长报告，CF患者从身体角度以及社交和总分方面的生活质量得分均降低（P<0.05）。
结论
CF患者的生活质量似乎较低，治疗方案应考虑到所感知到的生活质量暗示。
相似文献
1
Qulaity of life in cystic fibrosis children.囊性纤维化患儿的生活质量。
Iran J Pediatr. 2013 Apr;23(2):149-53.
2
Parents' Knowledge of the Impact of Cystic Fibrosis on the Quality of Life of Children and Adolescents Suffering from This Disease as an Element of Patient Safety.父母对囊性纤维化对患有该疾病的儿童和青少年生活质量的影响的了解作为患者安全的一个要素
J Clin Med. 2023 Aug 10;12(16):5214. doi: 10.3390/jcm12165214.
3
Health-related quality of life of patients with cystic fibrosis assessed by the SF-36 questionnaire.采用SF-36问卷评估囊性纤维化患者与健康相关的生活质量。
Pneumonol Alergol Pol. 2014;82(1):10-7. doi: 10.5603/PiAP.2014.0003.
4
Determinants of health-related quality of life in polish patients with CF - adolescents' and parents' perspectives.波兰囊性纤维化患者健康相关生活质量的决定因素——青少年及其父母的观点
Dev Period Med. 2015 Jan-Mar;19(1):127-36.
5
Health-related quality-of-life in children with cystic fibrosis aged 5-years and associations with health outcomes.儿童囊性纤维化患者的健康相关生活质量及其与健康结果的关联。
J Cyst Fibros. 2020 May;19(3):483-491. doi: 10.1016/j.jcf.2020.02.022. Epub 2020 Mar 9.
6
Psychiatric morbidity and quality of life in children and adolescents with cystic fibrosis.患有囊性纤维化的儿童和青少年的精神疾病发病率及生活质量
Turk J Pediatr. 2018;60(1):32-40. doi: 10.24953/turkjped.2018.01.005.
7
Functional endoscopic sinus surgery improves the quality of life in children suffering from chronic rhinosinusitis with nasal polyps.功能性内窥镜鼻窦手术可改善患有慢性鼻窦炎伴鼻息肉儿童的生活质量。
Int J Pediatr Otorhinolaryngol. 2017 Sep;100:145-148. doi: 10.1016/j.ijporl.2017.06.007. Epub 2017 Jun 15.
8
Major depression and psychiatric comorbidity in Turkish children and adolescents with cystic fibrosis.土耳其囊性纤维化患儿和青少年的重度抑郁症和精神共病。
Pediatr Pulmonol. 2019 Dec;54(12):1927-1935. doi: 10.1002/ppul.24492. Epub 2019 Aug 27.
9
Exercise performance and quality of life in children with cystic fibrosis and mildly impaired lung function: relation with antibiotic treatments and hospitalization.囊性纤维化患儿运动表现和生活质量与轻度肺功能受损：与抗生素治疗和住院的关系。
Eur J Pediatr. 2017 Dec;176(12):1689-1696. doi: 10.1007/s00431-017-3024-7. Epub 2017 Sep 30.
10
Caloric intake and eating behavior in infants and toddlers with cystic fibrosis.患有囊性纤维化的婴幼儿的热量摄入与饮食行为
Pediatrics. 2002 May;109(5):E75-5. doi: 10.1542/peds.109.5.e75.
引用本文的文献
1
Development and validation of a supportive programme for family caregivers of children suffering from cystic fibrosis: protocol for a sequential exploratory mixed-methods study.为囊性纤维化患儿的家庭照顾者开发和验证支持性方案：一项序贯探索性混合方法研究的方案。
BMJ Open. 2024 Jun 3;14(6):e081560. doi: 10.1136/bmjopen-2023-081560.
2
Acceptability of patient reported outcome measures (PROMs) in a cystic fibrosis data registry.囊性纤维化数据注册研究中患者报告结局测量（PROMs）的可接受性。
BMJ Open Respir Res. 2021 Jul;8(1). doi: 10.1136/bmjresp-2021-000927.
3
A systematic review of patient-reported outcome measures (PROMs) in cystic fibrosis.一项关于囊性纤维化患者报告结局指标（PROMs）的系统评价。
BMJ Open. 2020 Oct 1;10(10):e033867. doi: 10.1136/bmjopen-2019-033867.
4
5
Exercise performance and quality of life in children with cystic fibrosis and mildly impaired lung function: relation with antibiotic treatments and hospitalization.囊性纤维化患儿运动表现和生活质量与轻度肺功能受损：与抗生素治疗和住院的关系。
Eur J Pediatr. 2017 Dec;176(12):1689-1696. doi: 10.1007/s00431-017-3024-7. Epub 2017 Sep 30.
6
Social and economic costs and health-related quality of life in non-institutionalised patients with cystic fibrosis in the United Kingdom.英国非住院囊性纤维化患者的社会经济成本及健康相关生活质量
BMC Health Serv Res. 2015 Sep 28;15:428. doi: 10.1186/s12913-015-1061-3.
7
Health-related quality of life (HRQOL) in children with chronic liver disease in North East Iran using PedsQL™ 4.0.使用儿童生活质量量表4.0（PedsQL™ 4.0）评估伊朗东北部慢性肝病患儿的健康相关生活质量
Electron Physician. 2015 Aug 10;7(4):1214-9. doi: 10.14661/2015.1214-1219. eCollection 2015 Aug.
8
Dermatoglyphic patterns in cystic fibrosis children.囊性纤维化患儿的皮纹模式
Iran J Pediatr. 2014 Oct;24(5):609-16. Epub 2014 Sep 12.
9
Effects of probiotics on quality of life in children with cystic fibrosis; a randomized controlled trial.益生菌对囊性纤维化患儿生活质量的影响；一项随机对照试验。
Iran J Pediatr. 2013 Dec;23(6):669-74.
本文引用的文献
1
Prevalence and impact of depression in cystic fibrosis.囊性纤维化患者中抑郁症的患病率及影响
Curr Opin Pulm Med. 2008 Nov;14(6):582-8. doi: 10.1097/MCP.0b013e3283121cf1.
2
Quality of life in patients with Cystic Fibrosis: association with anxiety and depression.囊性纤维化患者的生活质量：与焦虑和抑郁的关联。
J Cyst Fibros. 2008 Nov;7(6):581-4. doi: 10.1016/j.jcf.2008.05.010. Epub 2008 Aug 9.
3
Health-related quality of life in adults with cystic fibrosis: the role of coping.成年囊性纤维化患者的健康相关生活质量：应对方式的作用。
J Psychosom Res. 2008 Feb;64(2):149-57. doi: 10.1016/j.jpsychores.2007.08.017.
4
Monitoring quality of life in outpatients with cystic fibrosis: feasibility and longitudinal results.监测囊性纤维化门诊患者的生活质量：可行性及纵向研究结果。
J Cyst Fibros. 2007 May;6(3):171-8. doi: 10.1016/j.jcf.2006.06.005. Epub 2006 Jul 31.
5
Quality-of-life in children and adolescents with cystic fibrosis managed in both regional outreach and cystic fibrosis center settings in Queensland.在昆士兰州地区外展服务机构和囊性纤维化中心接受治疗的儿童及青少年的生活质量。
J Pediatr. 2006 Apr;148(4):508-516. doi: 10.1016/j.jpeds.2005.11.040.
6
[Quality of life with cystic fibrosis--aspects of age and gender].[囊性纤维化患者的生活质量——年龄与性别的影响因素]
Klin Padiatr. 2006 Jan-Feb;218(1):7-12. doi: 10.1055/s-2004-832485.
7
Quality of life of children with cystic fibrosis.囊性纤维化患儿的生活质量
J Pediatr. 2005 Sep;147(3 Suppl):S64-8. doi: 10.1016/j.jpeds.2005.09.001.
8
Quality of life in cystic fibrosis: the impact of gender, general health perceptions and disease severity.囊性纤维化患者的生活质量：性别、总体健康认知及疾病严重程度的影响。
J Cyst Fibros. 2003 Dec;2(4):206-13. doi: 10.1016/S1569-1993(03)00093-6.
9
The PedsQL: measurement model for the pediatric quality of life inventory.儿童生活质量量表（PedsQL）：儿童生活质量量表的测量模型
Med Care. 1999 Feb;37(2):126-39. doi: 10.1097/00005650-199902000-00003.
10
Quality of life in patients with cystic fibrosis.囊性纤维化患者的生活质量
Pediatr Pulmonol. 1997 Feb;23(2):95-100. doi: 10.1002/(sici)1099-0496(199702)23:2<95::aid-ppul4>3.0.co;2-n.
Zotero 插件