Jin-Shei Lai1, Cindy J Nowinski2, Frank Zelko3, Katy Wortman4, James Burns5, Douglas R Nordli6, David Cella7. 1. Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA; Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: js-lai@northwestern.edu. 2. Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA; Department of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: c-nowinski@northwestern.edu. 3. Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA; Department of Psychiatry and Behavioral Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: fzelko@luriechildrens.org. 4. Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: kwortman@northwestern.edu. 5. Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: james-l-burns@northwestern.edu. 6. Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA. Electronic address: DNordli@luriechildrens.org. 7. Department of Medical Social Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. Electronic address: d-cella@northwestern.edu.
Abstract
OBJECTIVE: Children with epilepsy often face complex psychosocial consequences that are not fully captured by existing patient-reported outcome (PRO) measures. The Neurology Quality of Life Measurement System "Neuro-QoL" was developed to provide a set of common PRO measures that address issues important to people with neurologic disorders. This paper reports Neuro-QoL (anxiety, depression, interaction with peers, fatigue, pain, cognitive function, stigma, and upper and lower extremity functions) validation in children with epilepsy. METHOD: Patients (aged 10-18years) diagnosed with epilepsy completed Neuro-QoL and legacy measures at time 1 (initial study visit) and 6-month follow-up. Internal consistency reliability was also evaluated. Concurrent validity was assessed by comparing Neuro-QoL measures with more established "legacy" measures of the same concepts. Clinical validity was evaluated by comparing mean Neuro-QoL scores of patients grouped by clinical anchors such as disease severity. Responsiveness of the Neuro-QoL from time 1 (initial study visit) to 6months was evaluated using self-reported change as the primary anchor. RESULTS: Sixty-one patients (mean age=13.4years; 62.3% male, 75.9% white) participated. Most patients (64.2%) had been seizure-free in the 3months prior to participation, and seizure frequency was otherwise described as follows: 17.8% daily, 13.3% weekly, 35.6% monthly, and 33.3% yearly. All patients were taking antiepileptic drugs. Patients reported better function/less symptoms compared to the reference groups. Internal consistency (alpha) coefficients ranged from 0.76 to 0.87. Patients with different seizure frequencies differed on anxiety (p<.01) and cognitive function (p<.05). Compared to patients on polytherapy, those on monotherapy had better upper extremity scores (p<.05). Compared to those with localized seizures, those experiencing generalized seizures reported worse stigma (p<.05). Depression, anxiety, lower extremity, fatigue, pain, interaction with peers, and stigma also significantly discriminated patients with different levels of quality of life (p≤.05). All Neuro-QoL measures were significantly correlated with other measures assessing similar domains. Stigma was related to self-reported change in several areas of functioning but in sometimes unexpected directions. SIGNIFICANCE: The Neurology Quality of Life Measurement System is a valid and reliable assessment tool for children with epilepsy and can be used in research and clinical settings.
OBJECTIVE:Children with epilepsy often face complex psychosocial consequences that are not fully captured by existing patient-reported outcome (PRO) measures. The Neurology Quality of Life Measurement System "Neuro-QoL" was developed to provide a set of common PRO measures that address issues important to people with neurologic disorders. This paper reports Neuro-QoL (anxiety, depression, interaction with peers, fatigue, pain, cognitive function, stigma, and upper and lower extremity functions) validation in children with epilepsy. METHOD:Patients (aged 10-18years) diagnosed with epilepsy completed Neuro-QoL and legacy measures at time 1 (initial study visit) and 6-month follow-up. Internal consistency reliability was also evaluated. Concurrent validity was assessed by comparing Neuro-QoL measures with more established "legacy" measures of the same concepts. Clinical validity was evaluated by comparing mean Neuro-QoL scores of patients grouped by clinical anchors such as disease severity. Responsiveness of the Neuro-QoL from time 1 (initial study visit) to 6months was evaluated using self-reported change as the primary anchor. RESULTS: Sixty-one patients (mean age=13.4years; 62.3% male, 75.9% white) participated. Most patients (64.2%) had been seizure-free in the 3months prior to participation, and seizure frequency was otherwise described as follows: 17.8% daily, 13.3% weekly, 35.6% monthly, and 33.3% yearly. All patients were taking antiepileptic drugs. Patients reported better function/less symptoms compared to the reference groups. Internal consistency (alpha) coefficients ranged from 0.76 to 0.87. Patients with different seizure frequencies differed on anxiety (p<.01) and cognitive function (p<.05). Compared to patients on polytherapy, those on monotherapy had better upper extremity scores (p<.05). Compared to those with localized seizures, those experiencing generalized seizures reported worse stigma (p<.05). Depression, anxiety, lower extremity, fatigue, pain, interaction with peers, and stigma also significantly discriminated patients with different levels of quality of life (p≤.05). All Neuro-QoL measures were significantly correlated with other measures assessing similar domains. Stigma was related to self-reported change in several areas of functioning but in sometimes unexpected directions. SIGNIFICANCE: The Neurology Quality of Life Measurement System is a valid and reliable assessment tool for children with epilepsy and can be used in research and clinical settings.
Authors: Bryce B Reeve; Ron D Hays; Jakob B Bjorner; Karon F Cook; Paul K Crane; Jeanne A Teresi; David Thissen; Dennis A Revicki; David J Weiss; Ronald K Hambleton; Honghu Liu; Richard Gershon; Steven P Reise; Jin-shei Lai; David Cella Journal: Med Care Date: 2007-05 Impact factor: 2.983
Authors: L W Batzel; C B Dodrill; B L Dubinsky; R G Ziegler; J E Connolly; R D Freeman; J R Farwell; E P Vining Journal: Epilepsia Date: 1991 Mar-Apr Impact factor: 5.864
Authors: Anne T Berg; Susan N Smith; Daniel Frobish; Susan R Levy; Francine M Testa; Barbara Beckerman; Shlomo Shinnar Journal: Dev Med Child Neurol Date: 2005-11 Impact factor: 5.449
Authors: H A Carpay; W F Arts; J Vermeulen; H Stroink; O F Brouwer; A C Peters; C A van Donselaar; A P Aldenkamp Journal: Epilepsy Res Date: 1996-07 Impact factor: 3.045
Authors: Hilary Bertisch; Frederick P Rivara; Pamela A Kisala; Jin Wang; Keith Owen Yeates; Dennis Durbin; Mark R Zonfrillo; Michael J Bell; Nancy Temkin; David S Tulsky Journal: Qual Life Res Date: 2017-03-07 Impact factor: 4.147
Authors: Kelly A Harmon; Alyssa M Day; Adrienne M Hammill; Anna L Pinto; Charles E McCulloch; Anne M Comi Journal: Pediatr Neurol Date: 2019-04-24 Impact factor: 3.372
Authors: Thomas J Langan; Amy Barczykowski; Kabir Jalal; Laura Sherwood; Heather Allewelt; Joanne Kurtzberg; Randy L Carter Journal: JIMD Rep Date: 2019-04-11
Authors: Jeanne A Pierzynski; Jennifer L Clegg; Jin-Ah Sim; Christopher B Forrest; Leslie L Robison; Melissa M Hudson; Justin N Baker; I-Chan Huang Journal: BMJ Open Date: 2020-05-17 Impact factor: 2.692
Authors: Zhaohua Lu; Jin-Ah Sim; Jade X Wang; Christopher B Forrest; Kevin R Krull; Deokumar Srivastava; Melissa M Hudson; Leslie L Robison; Justin N Baker; I-Chan Huang Journal: J Med Internet Res Date: 2021-11-03 Impact factor: 7.076