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Agreement between clinician-rated versus patient-reported outcomes in Huntington disease.

ABSTRACT: BACKGROUND:Clinician-rated measures of functioning are often used as primary endpoints in clinical trials and other behavioral research in Huntington disease. As study costs for clinician-rated assessments are not always feasible, there is a question of whether patient self-report of commonly used clinician-rated measures may serve as acceptable alternatives in low risk behavioral trials. AIM:The purpose of this paper was to determine the level of agreement between self-report and clinician-ratings of commonly used functional assessment measures in Huntington disease. DESIGN:486 participants with premanifest or manifest Huntington disease were examined. Total Functional Capacity, Functional Assessment, and Independence Scale assessments from the Unified Huntington Disease Rating scale were completed by clinicians; a self-report version was also completed by individuals with Huntington disease. Cronbach's ? was used to examine internal consistency, one-way analysis of variance was used to examine group differences, and paired t tests, kappa agreement coefficients, and intra-class correlations were calculated to determine agreement between raters. RESULTS:Internal consistency for self-reported ratings of functional capacity and ability were good. There were significant differences between those with premanifest, early-, and late-stage disease; those with later-stage disease reported less ability and independence than the other clinical groups. Although self-report ratings were not a perfect match with associated clinician-rated measures, differences were small. Cutoffs for achieving specified levels of agreement are provided. CONCLUSIONS:Depending on the acceptable margin of error in a study, self-reported administration of these functional assessments may be appropriate when clinician-related assessments are not feasible.

SUBMITTER: Carlozzi NE

PROVIDER: S-EPMC5992091 | biostudies-literature | 2018 Jun

REPOSITORIES: biostudies-literature

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Agreement between clinician-rated versus patient-reported outcomes in Huntington disease.

Carlozzi Noelle E NE Boileau Nicholas R NR Perlmutter Joel S JS Chou Kelvin L KL Stout Julie C JC Paulsen Jane S JS McCormack Michael K MK Cella David D Nance Martha A MA Lai Jin-Shei JS Dayalu Praveen P

Journal of neurology 20180423 6

<h4>Background</h4>Clinician-rated measures of functioning are often used as primary endpoints in clinical trials and other behavioral research in Huntington disease. As study costs for clinician-rated assessments are not always feasible, there is a question of whether patient self-report of commonly used clinician-rated measures may serve as acceptable alternatives in low risk behavioral trials.<h4>Aim</h4>The purpose of this paper was to determine the level of agreement between self-report and ...[more]

PMID: 29687215

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Project description:ImportanceAccurate documentation of patient symptoms in the electronic medical record (EMR) is important for high-quality patient care.ObjectiveTo explore inconsistencies between patient self-report on an Eye Symptom Questionnaire (ESQ) and documentation in the EMR.Design, setting, and participantsThis investigation was an observational study in comprehensive ophthalmology and cornea clinics at an academic institution among a convenience sample of 192 consecutive eligible patients, of whom 30 declined participation. Patients were recruited at the Kellogg Eye Center from October 1, 2015, to January 31, 2016. Patients were eligible to be included in the study if they were 18 years or older.Main outcomes and measuresConcordance of symptoms reported on an ESQ with data recorded in the EMR. Agreement of symptom report was analyzed using κ statistics and McNemar tests. Disagreement was defined as a negative symptom report or no mention of a symptom in the EMR for patients who reported moderate to severe symptoms on the ESQ. Logistic regression was used to investigate if patient factors, physician characteristics, or diagnoses were associated with the probability of disagreement for symptoms of blurry vision, pain or discomfort, and redness.ResultsA total of 162 patients (324 eyes) were included. The mean (SD) age of participants was 56.6 (19.4) years, 62.3% (101 of 162) were female, and 84.9% (135 of 159) were white. At the participant level, 33.8% (54 of 160) had discordant reporting of blurry vision between the ESQ and EMR. Likewise, documentation was discordant for reporting glare (48.1% [78 of 162]), pain or discomfort (26.5% [43 of 162]), and redness (24.7% [40 of 162]), with poor to fair agreement (κ range, -0.02 to 0.42). Discordance of symptom reporting was more frequently characterized by positive reporting on the ESQ and lack of documentation in the EMR (Holm-adjusted McNemar P < .03 for 7 of 8 symptoms except for blurry vision [P = .59]). Return visits at which the patient reported blurry vision on the ESQ had increased odds of not reporting the symptom in the EMR compared with new visits (odds ratio, 5.25; 95% CI, 1.69-16.30; Holm-adjusted P = .045).Conclusions and relevanceSymptom reporting was inconsistent between patient self-report on an ESQ and documentation in the EMR, with symptoms more frequently recorded on a questionnaire. These results suggest that documentation of symptoms based on EMR data may not provide a comprehensive resource for clinical practice or "big data" research.

Dataset Information

Agreement between clinician-rated versus patient-reported outcomes in Huntington disease.

Publications

Agreement between clinician-rated versus patient-reported outcomes in Huntington disease.

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