Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Epidemiology and Biostatistics

Supervisor

Speechley, Kathy

Abstract

The Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) is a validated, parent-reported measure of health-related quality of life (HRQOL) in children with epilepsy (CWE). The QOLCE-55 currently has no minimum clinically important difference (MCID), which is the minimum amount of change required to be considered meaningful to patients. The primary objective of this study was to estimate the MCID for the QOLCE-55 using the Making Mindfulness Matter© in Children with Epilepsy trial data. Parent-child dyads (n=66) completed the QOLCE-55 at baseline (week 0) and follow-up (week 9). MCID values for the QOLCE-55 were calculated using two types of methods: anchor-based and distribution-based. Using an anchor-based approach, the MCID for the QOLCE-55 was 10 points and using a distribution-based method, the MCID was 6 points. This is the first study to report MCID values for the QOLCE-55. These MCID estimates should be used with caution pending replication in subsequent studies.

Summary for Lay Audience

The Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55) is used to measure the health-related quality of life (HRQOL) of children with epilepsy (CWE). HRQOL represents a person’s perception of how their health affects their physical, psychological, and social well-being. Measuring the HRQOL in CWE is important because this population is at risk for psychological, behavioural, and cognitive impairments, which can negatively affect their HRQOL.

The primary objective of this thesis is to estimate the minimum clinically important difference (MCID) of the QOLCE-55. MCID is the minimum amount of change required to be considered meaningful to a patient. The MCID value for the QOLCE-55 is estimated using data from the Making Mindfulness Matter© in Epilepsy (M3-E) randomized controlled trial. Establishing a MCID for the QOLCE-55 will be helpful in determining whether differences in HRQOL observed are meaningful to the CWE themselves. The literature typically recommends the use of both anchor-based and distribution-based methods to estimate the MCID. This thesis reports the findings from both methods. The MCID for the mean change in HRQOL score from baseline to follow-up using an anchor-based method was 10 points. The MCID for the mean change in HRQOL score using a distribution-based approach is 6 points. As there is a difference in magnitude between these two MCID values, this thesis provides a discussion of the factors that should be considered to help future investigators decide which MCID value to use in their analysis. Ultimately, these MCID estimates should be used with caution pending replication in subsequent studies. Further research is also required to provide clear guidelines on how to address the differences in the MCID values obtained.

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