Experiences of a Web-Based Quality of Life Self-Monitoring Tool for Individuals With Bipolar Disorder: A Qualitative Exploration

Abstract

BackgroundSelf-monitoring of symptoms is a cornerstone of psychological interventions in bipolar disorder (BD), but individuals with lived experience also value tracking holistic outcomes, such as quality of life (QoL). Importantly, self-monitoring is not always experienced positively by people with BD and may have lower than expected rates of engagement. Therefore, before progressing into QoL tracking tools, it is important to explore user perspectives to identify possible risks and benefits, optimal methods to support engagement, and possible avenues to integrate QoL self-monitoring practices into clinical work.ObjectiveThis study aimed to conduct a qualitative exploration of how individuals with BD engaged with a Web-based version of a BD-specific QoL self-monitoring instrument, the QoL tool.MethodsA total of 43 individuals with BD engaged with a self-management intervention with an optional Web-based QoL self-assessment tool as part of an overarching mixed method study. Individuals were later interviewed about personal experiences of engagement with the intervention, including experiences of gauging their own QoL. A thematic analysis was used to identify salient aspects of the experience of QoL self-monitoring in BD.ResultsIn total, 4 categories describing people’s experiences of QoL self-monitoring were identified: (1) breadth of QoL monitoring, (2) highlighting the positive, (3) connecting self-monitoring to action, and (4) self-directed patterns of use.ConclusionsThe findings of this research generate novel insights into ways in which individuals with BD experience the Web-based QoL self-assessment tool. The value of tracking the breadth of domains was an overarching aspect, facilitating the identification of both areas of strength and life domains in need of intervention. Importantly, monitoring QoL appeared to have an inherently therapeutic quality, through validating flourishing areas and reinforcing self-management efforts. This contrasts the evidence suggesting that symptom tracking may be distressing because of its focus on negative experiences and positions QoL as a valuable adjunctive target of observation in BD. Flexibility and personalization of use of the QoL tool were key to engagement, informing considerations for health care providers wishing to support self-monitoring and future research into Web- or mobile phone–based apps.

Beyond clicks and downloads: a call for a more comprehensive approach to measuring mobile-health app engagement

“…App usage may also exacerbate negative mood by providing poor quality/too much information, technical challenges 8 or increasing user's awareness of distressing symptoms. 12 Morton et al 13 found that people living with bipolar disorder experienced both negative and positive emotions toward self-monitoring; the practice made them feel that they were managing their condition effectively compared with others, but was also 'an unpleasant reminder that they were living with bipolar disorder'. Nuanced interpretation is not revealed through usage data alone.…”

“…It could also help tailor content according to recovery or illness stage to reduce cognitive load. 13 Algorithms facilitate the identification of engagement patterns based on interactions with apps over time, often based on duration (short versus long term) and frequency (low versus high). Such analyses reveal that different users have different use trajectories, but they do not explain why the pattern is occurring or its significance to clinical outcomes.…”

“…Cluster analysis is another option, whereby usage patterns are examined in concert with clinical, sociodemographic variables or other data sources, such as in-app text messages between users and coaches to identify reasons for app use/non-use. 15 Users weigh the benefits of using m-health apps with factors such as usability, convenience, personal risk, for example privacy, and cognitive or emotional effort, 13 which may not be accounted for in in-app assessments. Empirical studies utilising self-report data may not use validated self-report inventories or use them systematically.…”

Visual and Personalized Quality of Life Assessment App for People With Severe Mental Health Problems: Qualitative Evaluation

“…Both research and practice reveal that e-mental health apps frequently suffer from low engagement and fall short of expectations regarding their impact on the daily lives of patients. [ 22 - 26 ]. Researchers have, therefore, investigated what factors enable e-mental health apps to bridge the gap from development to high engagement and practical use by patients [ 27 - 29 ].…”

The Impact of Subsyndromal Bipolar Symptoms on Patient’s Functionality and Quality of Life

“…QoL is a broad construct taken to represent aspects of functioning and satisfaction in occupational, environmental, social, physical, and psychological aspects of life (50).QoL has not only become an increasingly important outcome parameter in clinical trials, but also a target for web-based psychoeducational self-monitoring programs (51,52). Different scales exist to make the rather holistic and fuzzy defined term "Quality of life" measurable (53).…”