A feasibility assessment of functioning and quality-of-life patient-reported outcome measures in adult epilepsy clinics: A systematic review

Jones, Felipe J.S.; Ezzeddine, Farrah L.; Herman, Susan T.; Buchhalter, Jeffrey; Fureman, Brandy E.; Moura, Lidia M.V.R.

doi:10.1016/j.yebeh.2019.106704

Cited by 9 publications

(8 citation statements)

References 77 publications

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“…This applied only to quality-of-life and seizure severity. [29][30][31][32][33] For the remaining outcomes to be measured using PROMs, a literature search using an established search filter with a high level of sensitivity and precision for identifying measurement instruments and studies on their measurement properties was used. 34 All identified measurement instruments were then screened and included for a detailed review of their appropriateness and measurement instrument properties in line with ICHOM standardized methods.…”

Section: Identification Of Outcome Measurement Methodsmentioning

confidence: 99%

“…3.2.3 | Epilepsy-specific, health-related quality of life Three relevant review articles in the COSMIN database identified measurement instruments for epilepsy-specific, health-related quality of life for adults. 29,31,32 Of 20 instruments that were screened, the Quality of Life in Epilepsy Inventory 31 (QOLIE-31), Quality of Life in Epilepsy Inventory 10 (QOLIE-10), and Personal Impact of Epilepsy Scale (PIES) met our predefined screening criteria and underwent detailed assessment of their measurement instrument properties and feasibility. [57][58][59] The consensus process led to the recommendation of the QOLIE-10 instrument for adults to capture epilepsy-specific…”

Section: Memory and Attentionmentioning

confidence: 99%

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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

Mitchell,

Sossi,

Miller

et al. 2024

Epilepsia

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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.

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Section: Identification Of Outcome Measurement Methodsmentioning

confidence: 99%

Section: Memory and Attentionmentioning

confidence: 99%

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

Mitchell,

Sossi,

Miller

et al. 2024

Epilepsia

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“…In our department, patient surveys are routinely administered before, during, and after completion of radiotherapy (baseline, end of treatment, 3 months, 6 months, 12 months, and annually thereafter). We utilize the Patient-Reported Outcomes Measurement Information System 10 (PROMIS-10), which has been validated across multiple medical specialties (11,12). Additional surveys administered include the Expanded Prostate Cancer Index breast-specific questions and an institution-specific PRO survey.…”

Section: Study Design Patient Selection and Survey Administrationmentioning

confidence: 99%

Patient-reported outcomes for patients with breast cancer undergoing radiotherapy: A single-center registry experience

et al. 2022

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BackgroundWe present Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) for patients undergoing adjuvant radiotherapy for breast cancer with curative intent. We describe the frequency and severity of PRO-CTCAE and analyze them with respect to dose fractionation.MethodsPatients were included in this study if they were treated with curative intent for breast cancer and enrolled on a prospective registry. Patients must have completed at least one baseline and one post-radiation survey that addressed PRO-CTCAE. For univariate and multivariate analysis, categorical variables were analyzed by Fisher’s exact test and continuous variables by Wilcoxon rank sum test. PRO-CTCAE items graded ≥2 and ≥3 were analyzed between patients who received hypofractionation (HF) versus standard conventional fractionation (CF) therapy by the Chi-square test.ResultsThree hundred thirty-one patients met inclusion criteria. Pathologic tumor stage was T1–T2 in 309 (94%) patients. Eighty-seven (29%) patients were node positive. Two hundred forty-seven patients (75%) experienced any PRO-CTCAE grade ≥2, and 92 (28%) patients experienced any PRO-CTCAE grade ≥3. CF was found to be associated with an increased risk of grade ≥3 skin toxicity, swallowing, and nausea (all p < 0.01). HF (OR 0.48, p < 0.01) was significant in the multivariate model for decreased risk of any occurrence of PRO-CTCAE ≥3.ConclusionsOur study reports one of the first clinical experiences utilizing multiple PRO-CTCAE items for patients with breast cancer undergoing radiation therapy with curative intent. Compared with CF, HF was associated with a significant decrease in any PRO-CTCAE ≥3 after multivariate analysis.

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“…The Quality of Life in Epilepsy inventory is a family of validated PROMs for assessing HRQOL in patients with epilepsy 11–14 . In particular, the short version (10‐item) Quality of Life in Epilepsy (QOLIE10) is increasingly being used to assess HRQOL in adult patients with epilepsy, especially in clinical trials and busy clinical settings 6,15 16–21 one important but frequently overlooked aspect of PROM validation is the establishment of its measurement invariance across subgroups of patients with epilepsy 22,23 .…”

Section: Introductionmentioning

confidence: 99%

“…[11][12][13][14] In particular, the short version (10-item) Quality of Life in Epilepsy (QOLIE10) is increasingly being used to assess HRQOL in adult patients with epilepsy, especially in clinical trials and busy clinical settings. 6,15 Although much attention has been paid to psychometric evaluations of QOLIE10 with respect to construct validity, test-retest reliability, and cultural translations/adaptions in several populations, [16][17][18][19][20][21] one important but frequently overlooked aspect of PROM validation is the establishment of its measurement invariance across subgroups of patients with epilepsy. 22,23 That is, are subgroups of respondents with the same diagnosis but underlying clinical differences consistent in their interpretations of QOLIE10 items?…”

Section: Introductionmentioning

confidence: 99%

Quality of Life in Epilepsy: Same questions, but different meaning to different people

et al. 2021

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Objectives Patient‐reported outcome measures (PROMs) are used widely to elicit patient's self‐appraisal of their health status and quality of life. One fundamental assumption when measuring PROMs is that all individuals interpret questions about their health status in a consistent manner. However, subgroups of patients with a similar health condition may respond differently to PROM questions (ie, differential item functioning [DIF]), leading to biased estimates of group differences on PROM scores. Understanding these differences can help inform the clinical interpretation of PROMs. This study examined whether DIF affects 10‐item Quality of Life in Epilepsy (QOLIE10) scores reported by patients with epilepsy in outpatient clinics. Methods Data were from the Calgary Comprehensive Epilepsy Program, a prospective registry of patients with epilepsy in Calgary, Alberta. Latent variable mixture models (LVMMs) based on standard two‐parameter graded response models with increasing numbers of latent classes were applied to QOLIE10 item data. Model fit was assessed using the Bayesian Information Criterion (BIC) and latent class model entropy. Ordinal logistic regression was used to identify QOLIE10 items that exhibited DIF. Results In this cohort of 1143 patients, 567 (49.6%) were female and the median age was 37.0 (interquartile range [IQR] 27.0) years. A two‐class LVMM, which provided the best fit to the data, identified two subgroups of patients with different response patterns to QOLIE10 items, with class proportions of 0.62 and 0.38. The two subgroups differed with respect to antiseizure polytherapy, reported medication side effects, frequency of seizures, and psychiatric comorbidities. QOLIE10 items on the physical and psychological side effects of medication exhibited large DIF effects. Significance Our study revealed two different response patterns to quality‐of‐life instruments, suggesting heterogeneity in how patients interpret some of the questions. Researchers and users of PROMs in epilepsy need to consider the differential interpretation of items for various instruments to ensure valid understanding and comparisons of PROM scores.

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A feasibility assessment of functioning and quality-of-life patient-reported outcome measures in adult epilepsy clinics: A systematic review

Cited by 9 publications

References 77 publications

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

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

Patient-reported outcomes for patients with breast cancer undergoing radiotherapy: A single-center registry experience

Quality of Life in Epilepsy: Same questions, but different meaning to different people

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