Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Adults with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations

被引：13

作者：

Mitchell, James W. ^{[1
]}

Sossi, Frieda ^{[2
]}

Miller, Isabel ^{[2
]}

Jaber, Paula Blancarte ^{[2
]}

Das-Gupta, Zofia ^{[2
]}

Fialho, Luz Sousa ^{[2
]}

Amos, Action ^{[3
]}

Austin, Joan K. ^{[4
]}

Badzik, Scott ^{[5
]}

Baker, Gus ^{[6
]}

Ben Zeev, Bruria ^{[7
]}

Bolton, Jeffrey ^{[8
]}

Chaplin, John E. ^{[9
]}

Cross, J. Helen ^{[10
]}

Chan, Derrick ^{[11
]}

Gericke, Christian A. ^{[12
]}

Husain, Aatif M. ^{[13
,14
]}

Lally, Lorraine ^{[15
]}

Mbugua, Sharon ^{[16
]}

Megan, Cassidy ^{[17
]}

Mesa, Tomas ^{[18
]}

Nunez, Lilia ^{[19
]}

von Oertzen, Tim J. ^{[20
]}

Perucca, Emilio ^{[21
]}

Pullen, Angie ^{[22
]}

Ronen, Gabriel M. ^{[23
]}

Sajatovic, Martha ^{[24
,25
]}

Singh, Mamta B. ^{[26
]}

Wilmshurst, Jo M. ^{[27
]}

Wollscheid, Leonie ^{[28
]}

Berg, Anne T. ^{[29
]}

机构：

[1] Univ Liverpool, Inst Syst Mol & Integrat Biol ISMIB, Liverpool, England

[2] Int Consortium Hlth Outcomes Measurement, London, England

[3] Univ Edinburgh, Int Bur Epilepsy, Africa Reg, Edinburgh, Scotland

[4] Indiana Univ, Sch Nursing, Indianapolis, IN USA

[5] Lived Experience Representat, Cincinnati, OH USA

[6] Univ Liverpool, Liverpool, England

[7] Edmond & Lilly Safra Childrens Hosp, Sheba Med Ctr, Tel Hashomer, Israel

[8] Boston Childrens Hosp, Boston, MA USA

[9] Univ Gothenburg, Gothenburg, Sweden

[10] UCL Great Ormond St Inst Child Hlth, Dev Neurosci Dept, London, England

[11] KK Womens & Childrens Hosp, Duke NUS, Singapore, Singapore

[12] Univ Queensland, Med Sch, Brisbane, Qld, Australia

[13] Duke Univ, Med Ctr, Durham, NC USA

[14] Vet Affairs Med Ctr, Durham, NC USA

[15] LLM Financial Serv Law, LLM Internat Human Rights Law, Galway, Ireland

[16] Mental Hlth Alliance Kenya, Nairobi, Kenya

[17] Founder Purple Day, Halifax, NS, Canada

[18] Pontificia Univ Catolica Chile, Santiago, Chile

[19] Ctr Med Nacl 20 Noviembre, Med Sur, Mexico City, Mexico

[20] Johannes Kepler Univ Linz, Kepler Univ Hosp, Dept Neurol 1, Linz, Austria

[21] Univ Melbourne, Dept Med, Austin Hlth, Melbourne, Vic, Australia

[22] Formerly Epilepsy Act, London, England

[23] McMaster Univ, Fac Hlth Sci, CanChild Ctr Childhood Disabil Res, Dept Pediat, Hamilton, ON, Canada

[24] Case Western Reserve Univ, Univ Hosp Cleveland Med Ctr, Dept Psychiat, Sch Med, Cleveland, OH USA

[25] Case Western Reserve Univ, Univ Hosp Cleveland Med Ctr, Dept Neurol, Sch Med,, Cleveland, OH USA

[26] All India Inst Med Sci, New Delhi, India

[27] Univ Cape Town, Red Cross War Mem Childrens Hosp, Neurosci Inst, Cape Town, South Africa

[28] Epilepsie Empowerment Deutschland eV, Karlsruhe, Germany

[29] Northwestern Feinberg Sch Med, Dept Neurol, Chicago, IL USA

来源：

EPILEPSIA | 2024年 / 65卷 / 07期

关键词：

epilepsy; outcomes; patient-reported outcome measures; quality improvement; value-based health care; QUALITY-OF-LIFE; PATIENT-REPORTED OUTCOMES; SEIZURE SEVERITY; SHORT FORMS; TASK-FORCE; DEPRESSION; PEOPLE; RELIABILITY; VALIDITY; IMPACT;

D O I：

10.1111/epi.17971

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. Therefore, the International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy and their representatives to develop minimum sets of standardized outcomes and outcomes measurement methods for clinical practice that support patient-clinician decision-making and quality improvement. Consensus methods identified 20 core outcomes. Measurement tools were recommended based on their evidence of strong clinical measurement properties, feasibility, and cross-cultural applicability. The essential outcomes included many non-seizure outcomes: anxiety, depression, suicidality, memory and attention, sleep quality, functional status, and the social impact of epilepsy. The proposed set will facilitate the implementation of the use of patient-centered outcomes in daily practice, ensuring holistic care. They also encourage harmonization of outcome measurement, and if widely implemented should reduce the heterogeneity of outcome measurement, accelerate comparative research, and facilitate quality improvement efforts.

引用

页码：1916 / 1937

页数：22

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