People with lived experience of mental illness, researchers and healthcare providers alike are seeing quality of life (QoL) as increasingly valuable as an outcome measure when considering the impact and treatment of Bipolar Disorder (BD). The different focus of QoL measures is especially apparent when they are compared to symptom scales. For example, a common QoL measure, the QlesQ, asks the following:
“Taking all things into consideration, during the past week how satisfied were you with your social relationships?”
This focus on “all things” is a stark contrast to the content of a common symptom measure (e.g., the Young Mania Rating Scale), which asks healthcare providers simply to rate the degree to which certain symptoms of mania are apparent in their patient with BD. The increasing value placed on an individual’s subjective experience of their own QoL parallels the broader cultural shift toward the promotion of recovery and person-oriented approaches in clinical settings, where patients are viewed more holistically and not just as the symptoms of their health condition.
However, our understanding of QoL in BD is affected by the lack of a solid, widely agreed-upon definition of the concept. There is no consistent definition of QoL in the literature and many publications choose not to define QoL at all, instead relying on everyday understandings of the term. The lack of agreement regarding the definition of QoL is reflected in the large number of questionnaires claiming to measure QoL. These questionnaires vary widely in the areas of QoL measured, with a large degree of debate still occurring on the types of questions likely to be relevant to the QoL of most individuals. There is also debate regarding whether individuals with certain health conditions prioritise different domains of QoL than the general population. The only condition-specific QoL measure for BD thus far (The Quality of Life in Bipolar Disorder Scale: QoL.BD) was developed by CREST.BD members Erin Michalak and Greg Murray.
QoL questionnaires also vary in the degree to which they focus on what is going well for individuals as compared to what is going poorly in their lives. This could potentially lead to underestimation of the QoL in individuals with significant health conditions, as questionnaires may neglect to take into account the way in which satisfaction in some areas may compensate for dissatisfaction in others. Lastly, questionnaires vary in whether they objectively or subjectively measure QoL, with some questionnaires requiring healthcare providers to make judgements on an individual’s QoL on their behalf, and others asking individuals to describe their own QoL. This lack of conceptual agreement and wide variation in the way QoL is measured presents obstacles for integrating existing research on QoL in BD, as well as investigating interventions targeting QoL as a therapeutic outcome.
The aim of my PhD research is to bring greater clarity around the conceptualisation and measurement of QoL in BD. The first stage of my investigation will consist of a systematic review of the literature on the relationship between BD and QoL. Searching the literature will help to develop a better understanding of the construct of QoL in BD and its associated concepts, including the relationship between QoL and different mood states, various BD spectrum disorders, and the cognitive or functioning factors of BD. The ultimate goal of this review is to interpret research on the relationship between BD and QoL, while taking into account the measurement tools and conceptions of QoL adopted by researchers, and how this affects our understanding of their results. This conceptual analysis will enable us to deconstruct the construct of QoL and evaluate the status of QoL measurement in the BD literature.