Health Promotion Research Center, University of Washington, Seattle, Washington, USA.
Neurology Vocational Services Unit, University of Washington, Seattle, Washington, USA.
Epilepsia. 2020 Jun;61(6):1129-1141. doi: 10.1111/epi.16530. Epub 2020 May 13.
The Program of Active Consumer Engagement in Self-Management in Epilepsy (PACES) is an evidenced-based self-management intervention for adults with epilepsy. Prior randomized controlled trial (RCT) data show that PACES reduces depression and improves self-management, self-efficacy, and quality of life for 6 months postprogram. The objective of this study was to replicate a PACES RCT with key extensions: more diverse patient pool from community-based epilepsy centers; option for telephone-based participation; and longer follow-up (12 months with booster support for intervention group), to examine duration of impact and inform dissemination and implementation.
Participants were adults with chronic epilepsy (n = 101) without serious mental illness or substantive intellectual impairment, recruited from three epilepsy centers. Participants were randomly assigned to intervention or waitlist control groups. Outcomes included the Epilepsy Self-Management Scale (ESMS), Epilepsy Self-Efficacy Scale (ESES), Quality of Life in Epilepsy-31, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7, administered at baseline, postintervention (8 weeks), and 6 and 12 months postintervention. Intervention was an 8-week group of five to eight adults co-led by a psychologist and trained peer with epilepsy that met once per week by teleconference or in person at a hospital for 60-75 minutes. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, as well as community integration and epilepsy-related communication. Treatment group provided program evaluation.
PACES participants (n = 49) improved relative to controls (n = 52) on the ESES (P < .022) and overall distress composite (P = .008). At 6 months, PACES participants remained improved on the ESES (P = .008) and composite (P = .001), and were improved on the ESMS (P = .005). At 12 months, PACES participants remained improved on the ESMS (P = .006) and were improved on an overall distress composite of combined measures (P = .018). Attrition was low (<6% in each group), and all program satisfaction ratings exceeded 4.0/5.0.
A consumer-generated epilepsy self-management program with broad psychosocial and medical emphasis can be effectively delivered by telephone or in person and facilitates long-term epilepsy self-management, adjustment, and coping up to 1 year after treatment.
主动消费者参与癫痫自我管理计划（PACES）是一项针对成人癫痫患者的循证自我管理干预措施。先前的随机对照试验（RCT）数据表明，PACES 可在项目结束后 6 个月内降低抑郁水平，改善自我管理、自我效能感和生活质量。本研究的目的是通过关键扩展复制 PACES RCT：来自社区癫痫中心的更多样化患者群体；选择电话参与；并延长随访时间（干预组 12 个月并提供强化支持），以检验其影响的持续时间，并为传播和实施提供信息。
参与者为来自三个癫痫中心的慢性癫痫（n=101）且无严重精神疾病或实质性智力障碍的成年人。参与者被随机分配到干预组或候补对照组。结果包括癫痫自我管理量表（ESMS）、癫痫自我效能感量表（ESES）、癫痫患者生活质量 31 项量表（Quality of Life in Epilepsy-31）、患者健康问卷-9 量表（Patient Health Questionnaire-9）和广泛性焦虑症 7 项量表（Generalized Anxiety Disorder-7），在基线时、干预后（8 周）和干预后 6 个月和 12 个月进行评估。干预措施是为期 8 周的小组活动，由一名心理学家和一名受过培训的癫痫患者共同领导，每周一次通过电话会议或在医院进行 60-75 分钟的面对面交流。主题包括癫痫的医学、心理社会、认知和自我管理方面，以及社区融入和与癫痫相关的沟通。治疗组提供项目评估。
与对照组（n=52）相比，PACES 参与者（n=49）在 ESES（P<.022）和总体困扰综合指标（P=.008）上有所改善。在 6 个月时，PACES 参与者在 ESES（P=.008）和综合指标（P=.001）上仍有改善，并且在 ESMS 上也有改善（P=.005）。在 12 个月时，PACES 参与者在 ESMS 上仍有改善（P=.006），并且在综合的合并指标上也有改善（P=.018）。失访率较低（每组<6%），所有项目满意度评分均超过 4.0/5.0。
一项强调广泛的心理社会和医学内容的消费者主导的癫痫自我管理计划可以通过电话或面对面的方式有效地进行，并能促进治疗后长达 1 年的长期癫痫自我管理、调整和应对。
