父母及家庭压力因素预测小儿新发癫痫患者的健康相关生活质量_Journal of Epilepsy

Authors：

 杨华俊 ,  王群

首都医科大学附属北京天坛医院神经病学中心癫痫科(北京，100050);

Corresponding author：

王群, Email: wangq@ccmu.edu.cn

Keywords：

心理社会功能; 父母报告结局; 副作用; 依从性; 压力; 羞耻感

DOI：

10.7507/2096-0247.20160033

Video：

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研究对人口学特征、疾病因素及抗癫痫药物(AEDs)依从性进行校正后，父母及家庭总体和健康相关压力对新发癫痫儿童的纵向通用和癫痫特异性健康相关生活质量(Health-related quality of life, HRQOL)的影响。此项前瞻性纵向研究纳入了124例新发癫痫儿童患者(平均年龄7.2岁，标准差2.9岁)。患儿父母分别在诊断后1、13、25个月时完成关于父母压力、羞耻感、恐惧和担心以及HRQOL的调查问卷。AEDs的依从性应用电子监测装置进行评估。每次就诊均进行医疗过程回顾以获得发作和药物副作用的数据。高水平的总体及癫痫特异性父母及家庭压力、恐惧和担心以及羞耻感对儿童通用及癫痫特异性HRQOL存在负面影响，大于疾病及人口学因素。总体父母及家庭压力在疾病管理第1年对儿童通用及癫痫特异性HRQOL的影响大于疾病诊断2年后的影响。更大的恐惧和担心对于诊断后13个月更高的癫痫特异性HRQOL有预测作用，而在诊断后2年，更大的恐惧和担心则预示更低的癫痫特异性HRQOL。多个人口学(如年龄)及疾病相关变量(如副作用和AED依从性)影响儿童通用及癫痫特异性HRQOL。尽管一些发现在各项通用及癫痫特异性HRQOL指标中一致，但其它的都是独有的。可改进的父母因素(如总体及疾病特异性父母及家庭压力、羞耻感)对小儿新发癫痫患者诊断后前2年中的HRQOL的影响是不同的。在诊断后第1年内用以改善HRQOL的心理社会干预应当解决父母和家庭压力、总体应对和癫痫管理的预期指导。针对依从性、羞耻感、恐惧和担心的干预措施可改善HRQOL。推动压力、恐惧/担心和羞耻感的父母管理可改善儿童HRQOL结局。

Citation： 杨华俊, 王群. 父母及家庭压力因素预测小儿新发癫痫患者的健康相关生活质量. Journal of Epilepsy, 2016, 2(2): 170-181. doi: 10.7507/2096-0247.20160033 Copy

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30.	Morita DA, Glauser TA, Modi AC. Development and validation of the pediatric epilepsy side effects questionnaire. Neurology, 2012, 79(8): 1252-1258.
31.	Austin JK, Dunn DW, Johnson CS, et al. Behavioral issues involving children and adolescents with epilepsy and the impact of their families: recent research data. Epilepsy Behav, 2004, 5(1): 33-41.
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33.	Modi AC, Guilfoyle SM, Rausch J. Preliminary feasibility, acceptability, and efficacy of an innovative adherence intervention for children With newly diagnosed epilepsy. J Pediatr Psychol, 2013, 38(6): 605-616.

1. Fayed N, de Camargo O, Kerr E, et al. Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Dev Med Child Neurol, 2012, 54(6): 1085-1095.
2. Glauser T, Ben-Menachem E, Bourgeois B, et al. ILAE treatment guidelines: evidence-based analysis of antiepileptic drug efficacy and effectiveness as initial monotherapy for epileptic seizures and syndromes. Epilepsia, 2006, 47(3): 1094-1120.
3. Ronen GM, Streiner DL, Rosenbaum P. Health-related quality of life in childhood epilepsy: moving beyond ‘seizure control with minimal adverse effects’. Health Qual Life Outcomes, 2003, 1: 36.
4. Davies S, Heyman I, Goodman R. A population survey of mental health problems in children with epilepsy. Dev Med Child Neurol, 2003, 45(9): 292-295.
5. Rodenburg R, Meijer AM, Dekovic M, et al. Family factors and psychopathology in children with epilepsy: a literature review. Epilepsy Behav, 2005, 6(5): 488-503.
6. Modi AC, Ingerski LM, Rausch JR, et al. Treatment factors affecting longitudinal quality of life in new onset pediatric epilepsy. J Pediatr Psychol, 2011, 36(10): 466-475.
7. Modi AC, King AS, Monahan SR, et al. Even a single seizure negatively impacts pediatric health-related quality of life. Epilepsia, 2009, 50(11): 2110-2116.
8. Haneef Z, Grant ML, Valencia I, et al. Correlation between child and parental perceptions of health-related quality of life in epilepsy using the PedsQL.v 4.0 measurement model. Epileptic Disord, 2010, 12(8): 275-282.
9. Ferro MA, Avison WR, Campbell MK, et al. The impact of maternal depressive symptoms on health-related quality of life in children with epilepsy: a prospective study of family environment as mediators and moderators. Epilepsia, 2011, 52(6): 316-325.
10. Stevanovic D, Jancic J, Lakic A. The impact of depression and anxiety disorder symptoms on the health-related quality of life of children and adolescents with epilepsy. Epilepsia, 2011, 52(3): e75-e78.
11. Lach LM, Ronen GM, Rosenbaum PL, et al. Health-related quality of life in youth with epilepsy: theoretical model for clinicians and researchers. Part I: the role of epilepsy and co-morbidity. Qual Life Res, 2006, 15(8): 1161-1171.
12. Speechley KN, Ferro MA, Camfield CS, et al. Quality of life in children with new-onset epilepsy: a 2-year prospective cohort study. Neurology, 2012, 79(8): 1548-1555.
13. Herzer M, Denson LA, Baldassano RN, et al. Patient and parent psychosocial factors associated with health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr, 2011, 52(6): 295-299.
14. Valenzuela JM, Patino AM, McCullough J, et al. Insulin pump therapy and health-related quality of life in children and adolescents with type 1 diabetes. J Pediatr Psychol, 2006, 31(7): 650-660.
15. Guilfoyle SM, Zeller MH, Modi AC. Parenting stress impacts obesityspecific health-related quality of life in a pediatric obesity treatmentseeking sample. J Dev Behav Pediatr, 2010, 31(6): 17-25.
16. Kumari P, Ram D, Haque Nizamie S, et al. Stigma and quality of life in individuals with epilepsy: a preliminary report. Epilepsy Behav, 2009, 15(7): 358-361.
17. McLaughlin DP, Pachana NA, Mcfarland K. Stigma, seizure frequency and quality of life: the impact of epilepsy in late adulthood. Seizure, 2008, 17(8): 281-287.
18. Johnson EK, Jones JE, Seidenberg M, et al. The relative impact of anxiety, depression, and clinical seizure features on health-related quality of life in epilepsy. Epilepsia, 2004, 45(8): 544-550.
19. Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes, 2005, 3(1): 34.
20. Sabaz M, Cairns D, Bleasel A, et al. The health-related quality of life of childhood epilepsy syndromes. J Paediatr Child Health, 2003, 39(7): 690-696.
21. Solans M, Pane S, Estrada M-D, et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health, 2008, 11(4): 742-764.
22. Varni JW, Burwinkle TM, Seid M, et al. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr, 2003, 3(8): 329-341.
23. Devinsky O, Vickrey BG, Cramer J, et al. Development of the quality of life in epilepsy inventory. Epilepsia, 1995, 36(21): 1089-1104.
24. Stevens G, Featherman D. A revised socioeconomic index of occupational status. Soc Sci Res, 1981, 10(8): 364-395.
25. Mueller C, Parcel T. Measures of socioeconomic status: alternatives and recommendations. Child Dev, 1981, 52(3): 1616-1625.
26. Shore C, Austin J, Musick B, et al. Psychosocial care needs of parents of children with new-onset seizures. J Neurosci Nurs, 1998, 30(11): 169-174.
27. Abidin RR. Parenting Stress Index: professional manual. Odessa, FL: Psychological Assessment Resources, Inc. 1995.
28. Austin JK, Macleod J, Dunn DW, et al. Measuring stigma in children with epilepsy and their parents: instrument development and testing. Epilepsy Behav, 2004, 5(2): 472-482.
29. Stevens J. Parenting stress, social support, marital satisfaction, and psychological distress in families of children with and without seizure disorders: a contextual approach. [Masters]. Bloomington, IN: Indiana University. 1998.
30. Morita DA, Glauser TA, Modi AC. Development and validation of the pediatric epilepsy side effects questionnaire. Neurology, 2012, 79(8): 1252-1258.
31. Austin JK, Dunn DW, Johnson CS, et al. Behavioral issues involving children and adolescents with epilepsy and the impact of their families: recent research data. Epilepsy Behav, 2004, 5(1): 33-41.
32. Wagner JL, Smith G, Ferguson P, et al. Feasability of a pediatric cognitive-behavioral self-managemnt intervention: coping opening and personally with epilepsy (COPE). Seizure, 2011, 20(7): 462-467.
33. Modi AC, Guilfoyle SM, Rausch J. Preliminary feasibility, acceptability, and efficacy of an innovative adherence intervention for children With newly diagnosed epilepsy. J Pediatr Psychol, 2013, 38(6): 605-616.

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