儿童癫痫自我管理的干预措施：证据等级是什么_Journal of Epilepsy

Authors：

 WagnerJL , ModiAC , JohnsonEK , 江欣悦　译 , 熊维希　慕洁　审

Corresponding author：

WagnerJL, Email: wagnerjl@musc.edu

Keywords：

家庭管理; 行为健康干预; 社会心理干预; 行为心理干预

DOI：

10.7507/2096-0247.20190024

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通过对儿科癫痫领域中自我管理的相关文献进行系统评价，以响应（美国）医学研究所提出的提高青少年中癫痫患者自我管理能力的相关措施。纳入标准：出生到 18 岁期间出现痫性发作或诊断为癫痫的青少年和（或）其照顾者、1985 年–2014 年以英文发表、在人类发展指数较高的国家进行的研究。摘要和关键词中必须明确提到“Self-care”（1996 年以前）和/或“Self-management”（1996 年以后）。该系统评价分为以下 7 个步骤：① 确定相关文献的检索标准以及数据库；② 评定摘要；③ 全文回顾；④ 将最终引用文献整合到发展、干预以及自我管理类别相关的因素中；⑤ 依照美国神经病学学会的标准对干预性实验进行证据分级（LOE）评定；⑥ 对包含对照组的 LOE Ⅲ级的文章进行试验报告统一标准（CONSORT）评价；⑦ 在四种自我管理领域对干预结局进行分类。共有 87 篇文章符合纳入标准，其中 24 篇是 LOE 等级为Ⅲ或Ⅳ的干预性实验。大多数研究（n=20，80%）为 LOE Ⅲ级；然而只有 8 项研究包含对照组并符合试验报告统一标准（CONSORT）。其他大部分试验忽视了干预因素（比如实施过程和治疗的精准度）、随机化、参与者、缺失数据以及效应值或置信区间。这 24 项干预性研究报道有意义的影响体现在 4 个方面：个体（n=13），家庭（n=6），医疗保健系统（n=3）以及社区（n=2）。所有研究其证据等级均未达到Ⅰ或Ⅱ级，也并未完全符合 CONSORT 标准。结果描述较好，但自我管理干预的性质（如多病灶，目标技能）和观察到的结果异质性使得各研究之间的比较变得复杂。包括大样本量、干预影响、治疗保真度和功效分析的临床随机对照试验是进一步提高证据基础所必需的。

Citation： WagnerJL, ModiAC, JohnsonEK, 江欣悦　译, 熊维希　慕洁　审. 儿童癫痫自我管理的干预措施：证据等级是什么. Journal of Epilepsy, 2019, 5(2): 130-139. doi: 10.7507/2096-0247.20190024 Copy

1.	Jensen F. Epilepsy as a spectrum disorder: implications for clinical and basic neuroscience. Epilepsia, 2011, 52(Suppl 1): 1-6.
2.	Cui W, Kobau R, Zack M, et al. Seizures in children and adolescents aged 6-17 year- United States, 2010-2014. MMWR Morb Mortal Wkly Rep, 2015, 64(43): 1209-1228.
3.	Epilepsy across the spectrum: promoting health and understanding. England M, Liverman C, Schultz A, Strawbridge L, editors. Washington, DC: Institute of Medicine of the National Academies, National Academies Press, 2012.
4.	Tang V, Michaelis R, Kwan P. Psychobehavioral therapy for epilepsy. Epilepsy Behav, 2014, 32: 147-155.
5.	Lewis S, Noyes J, Hastings RP. Systematic review of epilepsy selfmanagment interventions integrated with a synthesis of children and young people’s views and experiences. J Adv Nurs, 2014, 71(3): 478-497.
6.	Lindsay B, Bradley PM. Care delilvery and self-management strategies for children with epilepsy. Cochrane Database Syst Rev, 2010, 12: 1-17.
7.	Modi AC, Pai AL, Hommel KA, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics, 2012, 129(2): e473-486.
8.	Gross R, Johnston K. Levels of evidence: taking neurology to the next level. Neurology, 2009, 72(1): 8-10.
9.	Boutron I, Moher D, Altman D, et al. Extending the CONSORT statement to randomized trials of nonpharmacologic treatment: explanation and elaboration. Ann Intern Med, 2008, 148(4): 295-309.
10.	DiIorio CK, Bamps YA, Edwards AL, et al. The prevention research centers’ managing epilepsy well network. Epilepsy Behav, 2010, 19(3): 218-224.
11.	Managing Epilepsy Well. Managing Epilepsy Well[online]. Available at: http://www.managingepilepsywell.org/. Accessed August 23, 2016.
12.	Gronseth G, French J. Practice parameters and technology assessments: what they are, what they are not, and why you should care. Neurology, 2008, 71(20): 1639-1643.
13.	United Nations Development Programme. Human development report 2015. New York, NY: United Nations Development Program (UNDP), 2015.
14.	Pfafflin M, Petermann F, Rau J, et al. The psychoeducational program for children with epilepsy and their parents (FAMOSES): results of a controlled pilot study and a survey of parent satisfaction over a fiveyear period. Epilepsy Behav, 2012, 25(1): 11-16.
15.	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.
16.	Martinovic Z, Simonovic P, Djokic R. Preventing depression in adolescents with epilepsy. Epilepsy Behav, 2006, 9(4): 619-624.
17.	Fleeman N, Bradley P, Lindsay B. Care delivery and self management strategies for children with epilepsy. Cochrane Database Syst Rev, 2015, 12: 1-35.
18.	Loring D, Lowenstein D, Barbara N, et al. Common data elements in epilepsy research: development and implementation of the NINDS epilepsy CDE project. Epilepsia, 2011, 52(6): 1186-1191.
19.	Modi AC, Rausch JR, Glauser TA. Patterns of non-adherence to antiepileptic drug therapy in children with newly diagnosed epilepsy. JAMA, 2011, 305(16): 1669-1676.
20.	Modi A, Rausch J, Glauser T. Early pediatric antiepileptic drug nonadherence is related to lower long term seizure freedom. Neurology, 2013, 82(8): 671-673.
21.	Modi A, Wu Y, Rausch J, et al. Antiepileptic drug non-adherence predicts pediatric epilepsy seizure outcomes. Neurology, 2014, 83(22): 2085-2090.
22.	Glueckauf RL, Fritz SP, Ecklund-Johnson EP, et al. Videoconferencing-based family counseling for rural teenagers with epilepsy: phase 1 findings. Rehabil Psychol, 2002, 47(1): 49-72.
23.	Jantzen S, Muller-Godeffroy E, Hallfahrt-Krisl T, et al. FLIP&FLAP-a training programme for children and adolescents with epilepsy, and their parents. Seizure, 2009, 18(7): 478-486.
24.	Lewis MA, Hatton CL, Salas I, et al. Impact of the children’s epilepsy program on parents. Epilepsia, 1991, 32(3): 365-374.
25.	Lewis MA, Salas I, de la Sota A, et al. Randomized trial of a program to enhance the competencies of children with epilepsy. Epilepsia, 1990, 31(1): 101-109.
26.	Tieffenberg JA, Wood EI, Alonso A, et al. A randomized field trial of ACINDES: a child-centered training model for children with chronic illnesses. J Urban Health, 2000, 77(2): 280-297.
27.	Austin J, McNelis A, Shore C, et al. A feasibility study of a family seizure management program: ‘Be Seizure Smart’. J Neurosci Nurs, 2002, 34: 30-37.
28.	Blocher JB, Fujikawa M, Sung C, et al. Computer-assisted cognitive behavioral therapy for children with epilepsy and anxiety: a pilot study. Epilepsy Behav, 2013, 27(1): 70-76.
29.	Buelow JM, Johnson CS, Perkins SM, et al. Creating avenues for parent partnership (CAPP): an intervention for parents of children with epilepsy and learning problems. Epilepsy Behav, 2013, 27(1): 64-69.
30.	Carbone L, Zebrack B, Plegue M, et al. Treatment adherence among adolescents with epilepsy: what really matters?. Epilepsy Behav, 2013, 27(1): 59-63.
31.	Conant KD, Morgan AK, Muzykewica D, et al. A karate program for improving self-concept and quality of life in childhood epilepsy: results of a pilot study. Epilepsy Behav, 2008, 12(1): 61-65.
32.	Frizzell CK, Connolly AM, Beavis E, et al. Personalised epilepsy education intervention for adolescents and impact on knowledge acquisition and psychosocial function. J Paediatr Child Health, 2011, 47(5): 271-275.
33.	Shore CP, Perkins SM, Austin JK. The seizures and epilepsy education (SEE) program for families of children with epilepsy: a preliminary study. Epilepsy Behav, 2008, 12(1): 157-164.
34.	Snead K, Ackerson J, Bailey K, et al. Taking charge of epilepsy: the development of a structured psychoeducational group intervention for adolescents with epilepsy and their parents. Epilepsy Behav, 2004, 5(4): 547-556.
35.	Wagner JL, Smith G, Ferguson PL, et al. Pilot study of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: coping openly and personally with epilepsy (COPE). Epilepsy Behav, 2010, 18(3): 280-285.
36.	Wagner JL, Smith G, Ferguson PL, et al. Feasibility, accuracy, and satisfaction of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: coping openly and personally with epilepsy (COPE). Seizure, 2011, 20(6): 462-467.
37.	Austin JK, Kakacek JR, Carr D. Impact of training program on school nurses’ confidence levels in managing and supporting students with epilepsy and seizures. J Sch Nurs, 2010, 26(6): 420-429.
38.	Guilfoyle S, Follansbee-Junger K, Modi A. Development and preliminary implementation of a psychosocial service into standard medical care for pediatric epilepsy. Clin Pract Pediatr Psychol, 2013, 1: 276-288.
39.	Hoare P, Kerley S. Helping parents and children with epilepsy cope successfully: the outcome of a group programme for parents. J Psychosom Res, 1992, 36(8): 759-767.
40.	Hufford B, Glueckauf R, Webb P. Home-based, interactive videoconferencing for adolescents with epilepsy and their families. Rehabil Psychol, 1999, 44(2): 176-193.
41.	Jurasek L, Ray L, Quigley D. Development and implementation of an adolescent epilepsy transition clinic. J Neurosci Nurs, 2010, 42(4): 181-189.
42.	Price V, Murphy SO, Cureton VY. Increasing self-efficacy and knowledge through a seizure education program for special education teachers. J Sch Nurs, 2004, 20(1): 43-49.

1. Jensen F. Epilepsy as a spectrum disorder: implications for clinical and basic neuroscience. Epilepsia, 2011, 52(Suppl 1): 1-6.
2. Cui W, Kobau R, Zack M, et al. Seizures in children and adolescents aged 6-17 year- United States, 2010-2014. MMWR Morb Mortal Wkly Rep, 2015, 64(43): 1209-1228.
3. Epilepsy across the spectrum: promoting health and understanding. England M, Liverman C, Schultz A, Strawbridge L, editors. Washington, DC: Institute of Medicine of the National Academies, National Academies Press, 2012.
4. Tang V, Michaelis R, Kwan P. Psychobehavioral therapy for epilepsy. Epilepsy Behav, 2014, 32: 147-155.
5. Lewis S, Noyes J, Hastings RP. Systematic review of epilepsy selfmanagment interventions integrated with a synthesis of children and young people’s views and experiences. J Adv Nurs, 2014, 71(3): 478-497.
6. Lindsay B, Bradley PM. Care delilvery and self-management strategies for children with epilepsy. Cochrane Database Syst Rev, 2010, 12: 1-17.
7. Modi AC, Pai AL, Hommel KA, et al. Pediatric self-management: a framework for research, practice, and policy. Pediatrics, 2012, 129(2): e473-486.
8. Gross R, Johnston K. Levels of evidence: taking neurology to the next level. Neurology, 2009, 72(1): 8-10.
9. Boutron I, Moher D, Altman D, et al. Extending the CONSORT statement to randomized trials of nonpharmacologic treatment: explanation and elaboration. Ann Intern Med, 2008, 148(4): 295-309.
10. DiIorio CK, Bamps YA, Edwards AL, et al. The prevention research centers’ managing epilepsy well network. Epilepsy Behav, 2010, 19(3): 218-224.
11. Managing Epilepsy Well. Managing Epilepsy Well[online]. Available at: http://www.managingepilepsywell.org/. Accessed August 23, 2016.
12. Gronseth G, French J. Practice parameters and technology assessments: what they are, what they are not, and why you should care. Neurology, 2008, 71(20): 1639-1643.
13. United Nations Development Programme. Human development report 2015. New York, NY: United Nations Development Program (UNDP), 2015.
14. Pfafflin M, Petermann F, Rau J, et al. The psychoeducational program for children with epilepsy and their parents (FAMOSES): results of a controlled pilot study and a survey of parent satisfaction over a fiveyear period. Epilepsy Behav, 2012, 25(1): 11-16.
15. 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.
16. Martinovic Z, Simonovic P, Djokic R. Preventing depression in adolescents with epilepsy. Epilepsy Behav, 2006, 9(4): 619-624.
17. Fleeman N, Bradley P, Lindsay B. Care delivery and self management strategies for children with epilepsy. Cochrane Database Syst Rev, 2015, 12: 1-35.
18. Loring D, Lowenstein D, Barbara N, et al. Common data elements in epilepsy research: development and implementation of the NINDS epilepsy CDE project. Epilepsia, 2011, 52(6): 1186-1191.
19. Modi AC, Rausch JR, Glauser TA. Patterns of non-adherence to antiepileptic drug therapy in children with newly diagnosed epilepsy. JAMA, 2011, 305(16): 1669-1676.
20. Modi A, Rausch J, Glauser T. Early pediatric antiepileptic drug nonadherence is related to lower long term seizure freedom. Neurology, 2013, 82(8): 671-673.
21. Modi A, Wu Y, Rausch J, et al. Antiepileptic drug non-adherence predicts pediatric epilepsy seizure outcomes. Neurology, 2014, 83(22): 2085-2090.
22. Glueckauf RL, Fritz SP, Ecklund-Johnson EP, et al. Videoconferencing-based family counseling for rural teenagers with epilepsy: phase 1 findings. Rehabil Psychol, 2002, 47(1): 49-72.
23. Jantzen S, Muller-Godeffroy E, Hallfahrt-Krisl T, et al. FLIP&FLAP-a training programme for children and adolescents with epilepsy, and their parents. Seizure, 2009, 18(7): 478-486.
24. Lewis MA, Hatton CL, Salas I, et al. Impact of the children’s epilepsy program on parents. Epilepsia, 1991, 32(3): 365-374.
25. Lewis MA, Salas I, de la Sota A, et al. Randomized trial of a program to enhance the competencies of children with epilepsy. Epilepsia, 1990, 31(1): 101-109.
26. Tieffenberg JA, Wood EI, Alonso A, et al. A randomized field trial of ACINDES: a child-centered training model for children with chronic illnesses. J Urban Health, 2000, 77(2): 280-297.
27. Austin J, McNelis A, Shore C, et al. A feasibility study of a family seizure management program: ‘Be Seizure Smart’. J Neurosci Nurs, 2002, 34: 30-37.
28. Blocher JB, Fujikawa M, Sung C, et al. Computer-assisted cognitive behavioral therapy for children with epilepsy and anxiety: a pilot study. Epilepsy Behav, 2013, 27(1): 70-76.
29. Buelow JM, Johnson CS, Perkins SM, et al. Creating avenues for parent partnership (CAPP): an intervention for parents of children with epilepsy and learning problems. Epilepsy Behav, 2013, 27(1): 64-69.
30. Carbone L, Zebrack B, Plegue M, et al. Treatment adherence among adolescents with epilepsy: what really matters?. Epilepsy Behav, 2013, 27(1): 59-63.
31. Conant KD, Morgan AK, Muzykewica D, et al. A karate program for improving self-concept and quality of life in childhood epilepsy: results of a pilot study. Epilepsy Behav, 2008, 12(1): 61-65.
32. Frizzell CK, Connolly AM, Beavis E, et al. Personalised epilepsy education intervention for adolescents and impact on knowledge acquisition and psychosocial function. J Paediatr Child Health, 2011, 47(5): 271-275.
33. Shore CP, Perkins SM, Austin JK. The seizures and epilepsy education (SEE) program for families of children with epilepsy: a preliminary study. Epilepsy Behav, 2008, 12(1): 157-164.
34. Snead K, Ackerson J, Bailey K, et al. Taking charge of epilepsy: the development of a structured psychoeducational group intervention for adolescents with epilepsy and their parents. Epilepsy Behav, 2004, 5(4): 547-556.
35. Wagner JL, Smith G, Ferguson PL, et al. Pilot study of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: coping openly and personally with epilepsy (COPE). Epilepsy Behav, 2010, 18(3): 280-285.
36. Wagner JL, Smith G, Ferguson PL, et al. Feasibility, accuracy, and satisfaction of an integrated cognitive-behavioral and self-management intervention for youth with epilepsy and caregivers: coping openly and personally with epilepsy (COPE). Seizure, 2011, 20(6): 462-467.
37. Austin JK, Kakacek JR, Carr D. Impact of training program on school nurses’ confidence levels in managing and supporting students with epilepsy and seizures. J Sch Nurs, 2010, 26(6): 420-429.
38. Guilfoyle S, Follansbee-Junger K, Modi A. Development and preliminary implementation of a psychosocial service into standard medical care for pediatric epilepsy. Clin Pract Pediatr Psychol, 2013, 1: 276-288.
39. Hoare P, Kerley S. Helping parents and children with epilepsy cope successfully: the outcome of a group programme for parents. J Psychosom Res, 1992, 36(8): 759-767.
40. Hufford B, Glueckauf R, Webb P. Home-based, interactive videoconferencing for adolescents with epilepsy and their families. Rehabil Psychol, 1999, 44(2): 176-193.
41. Jurasek L, Ray L, Quigley D. Development and implementation of an adolescent epilepsy transition clinic. J Neurosci Nurs, 2010, 42(4): 181-189.
42. Price V, Murphy SO, Cureton VY. Increasing self-efficacy and knowledge through a seizure education program for special education teachers. J Sch Nurs, 2004, 20(1): 43-49.

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儿童癫痫自我管理的干预措施：证据等级是什么

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