Have I argued with my family this week?”: What questions do those with lived experience choose to monitor their bipolar disorder?

• Published in: Journal of affective disorders Vol. 281; pp. 918 - 925
• Main Authors: Gordon-Smith, Katherine, Saunders, Kate EA, Savage, Julia, Craddock, Nick, Jones, Ian, Jones, Lisa
• Format: Journal Article
• Language: English
• Published: Netherlands Elsevier B.V 15.02.2021
• Subjects: Affect; Anxiety; Anxiety Disorders; Bipolar disorder; Bipolar Disorder - diagnosis; Humans; Longitudinal; Middle Aged; Mood monitoring; Online data collection; Patient perspective; Surveys and Questionnaires; Online data collection; Bipolar disorder; Patient perspective; Mood monitoring; Longitudinal
• ISSN: 0165-0327; 1573-2517
• DOI: 10.1016/j.jad.2020.11.034

•Individuals chose to monitor many aspects of bipolar disorder extending beyond mood.•The most common categories were physical activity, anxiety, sleep and coping.•The sole use of mood scales to monitor mood may lack personal meaning for patients.•Additional individualised measures may help capture changes from the patient perspective. Electronic self-report mood monitoring tools for individuals with bipolar disorder (BD) are rapidly emerging and predominately employ predefined symptom-based questions. Allowing individuals to additionally choose what they monitor in relation to their BD offers the unique opportunity to capture and gain a deeper insight into patient priorities in this context. In addition to monitoring mood symptoms with two standardised self-rated questionnaires, 308 individuals with BD participating in the Bipolar Disorder Research Network True Colours electronic mood-monitoring tool for research chose to create and complete additional personalised questions. A content analysis approach was used to analyse the content of these questions. 35 categories were created based on the personalised questions with the most common being physical activity and exercise, anxiety and panic, sleep and coping/stress levels. The categories were grouped into six overarching themes 1) mental health; 2) behaviour and level of functioning; 3) physical wellbeing; 4) health behaviours; 5) active self-management; and, 6) interpersonal. The average age of the sample was around 50 years meaning our findings may not be generalisable to younger individuals with BD. Aspects of BD important to patients in relation to longitudinal monitoring extend well beyond mood symptoms, highlighting the limitations of solely relying on standardised questions/mood rating scales based on symptoms primarily used for diagnosis. Additional symptoms and aspects of life not necessarily useful diagnostically for BD may be more important for individuals themselves to monitor and have more meaning in capturing their own experience of changes in BD severity.