The Personal Impact of Epilepsy Scale (PIES) |
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| Institution: | 1. Department of Neurology and Neurological Sciences, Stanford University School of Medicine, Stanford, CA USA;2. Department of Neurology, Keck USC School of Medicine, Los Angeles, CA, USA;3. University of Pennsylvania School of Medicine, Philadelphia, PA, USA;4. Yale University School of Medicine, New Haven, CT, USA;5. Joyce Cramer Consulting, Houston, TX, USA;1. Department of Community Health Sciences & O''Brien Institute of Public Health, University of Calgary, Calgary, Canada;2. Department of Clinical Neurosciences, University of Calgary, Calgary, Canada;3. Clinical Research Unit, University of Calgary, Calgary, Canada;4. Hotchkiss Brain Institute, University of Calgary, Calgary, Canada;5. Department of Psychiatry, University of Calgary, Calgary, Canada;6. Department of Internal Medicine, University of Manitoba, Winnipeg, Canada;1. Department of Neurology, Dayanand Medical College, Ludhiana, India;2. NIHR University College London Hospitals Biomedical Research Centre, UCL Queen Square Institute of Neurology, London WC1N 3BG & Chalfont Centre for Epilepsy, Chalfont St Peter, SL9 0RJ, United Kingdom;3. Stichting Epilepsie Instellingen Nederland (SEIN), Heemstede, Netherlands;1. Epilepsy Research Institute, Yonsei University College of Medicine, Seoul, Republic of Korea;2. Department of Pediatrics, Korea University College of Medicine, Seoul, Republic of Korea;3. Division of Pediatric Neurology, Pediatric Epilepsy Clinic, Severance Children''s Hospital, Epilepsy Research Institute, Yonsei University College of Medicine, Seoul, Republic of Korea;4. Department of Pediatrics, Pusan National University Children''s Hospital School of Medicine, Yangsan, Republic of Korea;5. Department of Pediatrics, Chonbuk National University, Medical School, Jeonju, Republic of Korea;6. Department of Pediatrics, National Health Insurance Corporation, Ilsan Hospital, Goyang, Republic of Korea;7. Department of Pediatrics, Kyungpook National University College of Medicine, Daegu, Republic of Korea;8. Department of Pediatrics, Gangnam Severance Hospital, Younsei University College of Medicine, Seoul, Republic of Korea;9. Department of Pediatrics, Inje University College of Medicine, Goyang, Republic of Korea;10. Department of Psychology, Yonsei University, Seoul, Republic of Korea;1. Epidemiology & Biostatistics, Western University, London, Ontario, Canada;2. Children''s Health Research Institute, Lawson Health Research Institute, London, Ontario, Canada;3. Computer Science, Western University, London, Ontario, Canada;4. School of Public Health and Health Systems, University of Waterloo, Waterloo, Ontario, Canada;5. Psychology, University of Toronto and Hospital for Sick Children, Toronto, Ontario, Canada;6. Division of Neurology and Diagnostic Imagining, Hospital for Sick Children, Toronto, Ontario, Canada;7. Psychiatry, Western University, London, Ontario, Canada;8. Paediatrics, Western University, London, Ontario, Canada;1. School of Biomedical Sciences & Pharmacy, The University of Newcastle, Callaghan, NSW, Australia;2. Neurology Department, Renmin Hospital of Wuhan University, Wuhan, Hubei, China;3. Neurology Department, The Fifth Hospital of Wuhan, Wuhan, Hubei, China;1. Institute of Mental Health & Wellbeing, University of Glasgow, Glasgow G12 OXH, Scotland, UK;2. Paediatric Neurosciences Research Group, Royal Hospital for Children, Glasgow G51 4TF, Scotland, UK;3. University Hospitals Leicester NHS Trust, Leicester, UK;4. University of Strathclyde, Glasgow, UK;5. Neuroscience Group, University of Liverpool, UK;6. Birmingham Children''s Hospital NHS Foundation Trust, Birmingham, UK;7. Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle, UK;8. Royal Aberdeen Children''s Hospital, NHS Grampian, UK;9. Sheffield Children''s Hospital NHS Foundation Trust, Sheffield, UK;10. University Hospitals Bristol NHS Foundation Trust, Bristol, UK;11. County Durham and Darlington NHS Foundation Trust, Durham, UK |
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| Abstract: | ObjectiveThe impact of epilepsy is manifest by effects related to seizures and side effects of therapy and comorbidities such as depression. This report describes the development of a brief patient-reported outcome (PRO) instrument, the Personal Impact of Epilepsy Scale (PIES), to measure the influence of epilepsy overall and in each of these domains.MethodsInstrument development followed standard procedures and an FDA Guidance. People with epilepsy were surveyed with open-ended questions to derive major themes of their concerns, resulting in 4 key areas: seizures, side effects, comorbidities, and overall quality of life (QOL). A preliminary set of 152 questions was based on these themes and completed by 50 patients, age 42.7 (range: 21–71) years, concurrent with comparator instruments, including the NH Seizure Severity Scale (NHSSS), the Liverpool Adverse Events Profile (LAEP), the Quality of Life in Epilepsy (QOLIE-31) scale, the Beck Depression Inventory, and the Epilepsy Foundation Depression: A Checklist. A multiple regression model indicated which PIES measures were associated with scores from the comparator instruments. Questions in each of the domains were selected for correlations and nonduplication. Test–retest consistency at a 3-day interval was completed by 38 subjects and a final set of questions constructed.ResultsThe final question set comprised 25 items: 9 about characteristics of seizures, 7 about medication side effects, 8 about comorbidities, and 1 about overall quality of life. All items had 5 response choices (0–4), with higher scores reflecting more negative status. A total of 46 subjects completed the 25 questions. Cronbach's alpha was 0.87, indicating good internal consistency. Each of the three domains correlated well with the overall QOL item. The questions pertaining to seizures correlated with the NHSSS, the side effect questions with the LAEP, and the comorbidity questions with the QOLIE-31.ConclusionThe PIES provides a simple, brief PRO measure as a profile of overall impact of seizures, medication side effects, comorbidities, and overall QOL for people with epilepsy. Further study will explore sensitivity to change quantification of the minimal clinically significant change. |
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