Tools for assessing quality of life in epilepsy patients

Abstract

In this review, we attempt to bring the reader up to date with recent developments in the area of assessment of quality of life (QOL) of patients with epilepsy, in both the research and clinical contexts. We present evidence from recent publications on the major and most commonly used QOL instruments for both adults and children with epilepsy, including both strengths and limitations. We discuss both generic measures and ones that have been developed specifically for use in the epilepsy population. We draw attention to some of the broader issues that render the QOL assessment endeavor a somewhat complex one – in particular, that epilepsy is not a single condition, with a common clinical trajectory; and that QOL measures as currently configured almost universally focus on its negative impacts, largely neglecting the possibility of those affected being able to retain reasonable social adjustment and life satisfaction. Finally, we suggest that further work needs to focus on plugging the current evidence gaps in relation to psychometric and cross-cultural applicability issues; and on the value of QOL instruments in the clinical care setting. We conclude by highlighting a number of issues from the QOL literature that will, in our view, be the focus of increasing research interest in the next few years.

Keywords::

• adult
• assessment
• childhood
• clinical care
• condition-specific
• epilepsy
• generic
• patient-based outcomes
• quality of life
• research

Financial & competing interests disclosure

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending or royalties.

No writing assistance was utilized in the production of this manuscript.

Key issues

• • There are many potential quality of life measures, both generic and condition-specific, which researchers in the field of epilepsy can draw upon.

• • There are continuing issues around the level of psychometric evidence supporting use of the various measures, which need further addressing.

• • Rather than replication of work already done in this area, further efforts could usefully focus on refinement of key existing measures and production of further data to support their psychometric robustness.

• • No one single quality of life measure can be applied comprehensively across all patients with epilepsy; future work should fill the gaps in relation to specific patient subgroups, where these are identified.

• • The relative lack of effort to date in relation to development of quality of life measures that are child-completed and properly age-appropriate needs to be addressed more fully.

• • An international data bank to accumulate evidence of both the processes of development, psychometric properties and application of quality of life measures in epilepsy would be a valuable asset. Such an initiative could be supported by the International League Against Epilepsy.

• • The epilepsy community needs to be mindful of the possibility of quality of life dropping off the research agenda, unless its contribution to identifying best care is fully evaluated.

• • Efforts to explore how patients with epilepsy maintain or restore a high quality of life despite seizures and adverse treatment effects need to be pursued further.