Neuro-QOL and the NIH toolbox: Implications for epilepsy

Therapy

Volumn 7, Issue 5, 2010, Pages 533-540

  Nowinski, Cindy J ^a   Victorson, David ^a   Cavazos, Jose E ^b   Gershon, Richard ^a   Cella, David ^a  

^a NORTHWESTERN UNIVERSITY   (United States)

^b UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT SAN ANTONIO   (United States)

Author keywords

behavioral function; epilepsy; health related quality of life; measurement; neurological function; patient reported outcomes; quality of life

Indexed keywords

ANTICONVULSIVE AGENT;

BEHAVIOR DISORDER; CLINICAL ASSESSMENT TOOL; CLINICAL DECISION MAKING; COGNITIVE DEFECT; DIAGNOSTIC VALUE; EMOTIONAL DISORDER; EPILEPSY; HUMAN; NEURO QOL; NEUROLOGIC DISEASE; NEUROLOGIC EXAMINATION; NIH TOOLBOX; PATIENT MONITORING; PSYCHOMETRY; QUALITY OF LIFE; RELIABILITY; REVIEW; SOCIAL DISABILITY; VALIDATION STUDY;

EID: 77957148420     PISSN: 14750708     EISSN: 1744831X     Source Type: Journal    
DOI: 10.2217/thy.10.55     Document Type: Review

References (34)

1. Perucca P, Gilliam FG, Carter J, Vahle V: Adverse antiepileptic drug effects: toward a clinically and neurobiologically relevant taxonomy. Neurology 72(14), 1223-1229 (2009).
2. Cramer J, Spiker B: Quality of life assessment for people with epilepsy. In: Quality of Life and Pharmacoeconmics in Clinical Trials. Lippincott-Raven, PA, USA, 909-918 (1996).
3. Baker GA, Smith DF, Dewey M, Morrow J, Crawford PM, Chadwick DW: The development of a seizure severity scale as an outcome measure in epilepsy. Epilepsy Res. 8(3), 245-251 (1991).
4. McCagh J, Fisk JE, Baker GA: Epilepsy, psychosocial and cognitive functioning. Epilepsy Res. 86(1), 1-14 (2009).
5. Ware JE Jr, Sherbourne CD: The MOS 36-item Short-Form Health Survey (SF-36). I. Conceptual framework and item selection. Med. Care 30(6), 473-483 (1992).
6. Landgraf J, Abetz L, Ware J: Child Health Questionnaire (CHQ): A Users Manual. Integrated Therapeutics Group, Inc., MA, USA (1996).
7. Collings JA: Psychosocial well-being and epilepsy: an empirical study. Epilepsia 31(4), 418-426 (1990).
8. Kendrick A, Trimble M, Trimble MR, Dodson W: Repertory grid in the assessment of quality of life in patients with epilepsy: the Quality of LIfe Assessment Schedule. In: Epilepsy and Quality of Life. Raven, NY, USA, 151-164 (1994).
9. Vickrey B, Hays R, Graber J, Rausch R, Engel J, Brook R: A health-related quality of life instrument for patients evaluated for epilepsy surgery. Med. Care 30(4), 299-319 (1992).
10. Cramer JA, Westbrook LE, Devinsky O, Perrine K, Glassman MB, Camfield C: Development of the quality of life in epilepsy inventory for adolescents: the QOLIE-AD-48. Epilepsia 40(8), 1114-1121 (1999).
11. Devinsky O, Vickrey BG, Cramer J et al.: Development of the quality of life in epilepsy inventory. Epilepsia 36(11), 1089-1104 (1995).
12. Arunkumar G, Wyllie E, Kotagal P, Ong HT, Gilliam F: Parent- and patient-validated content for pediatric epilepsy quality-of-life assessment. Epilepsia 41(11), 1474-1484 (2000).
13. Sabaz M, Cairns DR, Lawson JA, Nheu N, Bleasel AF, Bye AM: Validation of a new quality of life measure for children with epilepsy. Epilepsia 41(6), 765-774 (2000).
14. Ronen GM, Streiner DL, Rosenbaum P: Health-related quality of life in children with epilepsy: development and validation of self-report and parent proxy measures. Epilepsia 44(4), 598-612 (2003).
15. Hoare P, Russell M: The quality of life of children with chronic epilepsy and their families: preliminary findings with a new assessment measure. Dev. Med. Child Neurol. 37(8), 689-696 (1995).
16. Camfield C, Breau L, Camfield P: Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/neurologic disability: Impact of Childhood Neurologic Disability Scale. Dev. Med. Child Neurol. 45(3), 152-159 (2003).
17. Batzel LW, Dodrill CB, Dubinsky BL et al.: An objective method for the assessment of psychosocial problems in adolescents with epilepsy. Epilepsia 32(2), 202-211 (1991).
18. Cowan J, Baker GA: A review of subjective impact measures for use with children and adolescents with epilepsy. Qual. Life Res. 13(8), 1435-1443 (2004).
19. 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 11(4), 742-764 (2008).
20. Leone MA, Beghi E, Righini C, Apolone G, Mosconi P: Epilepsy and quality of life in adults: a review of instruments. Epilepsy Res. 66(1-3), 23-44 (2005).
21. Waters E, Davis E, Ronen GM, Rosenbaum P, Livingston M, Saigal S: Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Dev. Med. Child Neurol. 51(8), 660-669 (2009).
22. Chang CH, Reeve BB: Item response theory and its applications to patient-reported outcomes measurement. Eval. Health Prof. 28(3), 264-282 (2005).
23. McHorney CA, Cohen AS: Equating health status measures with item response theory: illustrations with functional status items. Med. Care. 38(Suppl. 9), 1143-1159 (2000).
24. Devinsky O, Westbrook L, Cramer J, Glassman M, Perrine K, Camfield C: Risk factors for poor health-related quality of life in adolescents with epilepsy. Epilepsia 40(12), 1715-1720 (1999).
25. Cramer JA, Arrigo C, Van Hammee G, Bromfield EB: Comparison between the QOLIE-31 and derived QOLIE-10 in a clinical trial of levetiracetam. Epilepsy Res. 41(1), 29-38 (2000).
26. Cramer JA, Perrine K, Devinsky O, Bryant-Comstock L, Meador K, Hermann B: Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory. Epilepsia 39(1), 81-88 (1998).
27. Birbeck GL, Kim S, Hays RD, Vickrey BG: Quality of life measures in epilepsy: how well can they detect change over time? Neurology 54(9), 1822-1827 (2000).
28. Greenhalgh J: The applications of PROs in clinical practice: what are they, do they work, and why? Qual. Life Res. 18(1), 115-123 (2009).
29. Rose M, Bezjak A: Logistics of collecting patient-reported outcomes (PROs) in clinical practice: an overview and practical examples. Qual. Life Res. 18(1), 125-136 (2009).
30. Gershon RC, Cella D, Fox NA, Havlik RJ, Hendrie HC, Wagster MV: Assessment of neurological and behavioural function: the NIH Toolbox. Lancet Neurol. 9(2), 138-139 (2010).
31. Neuro-QOL - quality of life outcomes in neurological disorders www.neuroqol.org (Accessed 1 May 2010)
32. US FDA, Center for Drug Evaluation and Research, Center for Biologics Evaluation and Research, Center for Devices and Radiological Health: Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims http://purl.access.gpo.gov/GPO/LPS113413
33. Gershon RG: NIH Toolbox: Assessment of Neurological and Behavioral Function. (Contract HHS-N-260-2006 00007-C) www.nihtoolbox.org
34. National Institute of Neurological Disorders and Stroke. NINDS Common Data Elements www.nindscommondataelements.org (Accessed 26 July 2010)