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Research Overview

Title: "Have I argued with my family this week? What questions do those with lived experience choose to monitor their bipolar disorder?"Authors: Katherine Gordon-Smith, Kate EA Saunders, Julia Savage, Nick Craddock, Ian Jones, Lisa JonesInstitutions involved: University of Worcester, University of Oxford, Cardiff UniversityPublication details: Journal of Affective Disorders, Volume 281, 2021.

Abstract

Background: Electronic self-report mood monitoring tools for bipolar disorder (BD) are emerging. Predefined symptom-based questions are common but may not capture patient priorities.Methods: 308 individuals with BD participated in the BDRN True Colours electronic mood-monitoring tool. Participants created personalized questions alongside two standardized questionnaires. A content analysis approach was utilized to evaluate the questions.Results: 35 categories were identified based on personalized questions. Most common categories included: physical activity, anxiety, sleep, and coping. Overarching themes included: mental health, behavior/functioning, physical well-being, health behaviors, active self-management, and interpersonal aspects.Limitations: Participants had an average age of ~50, limiting generalizability to younger populations.Conclusions: Monitoring preferences extend beyond mood symptoms, indicating the limitations of solely relying on standard measures.

Introduction

Increasing recognition of the patient perspective in managing BD both clinically and in research. Past studies focused on challenges and patient-important outcomes, such as quality of life. Previous studies have not fully explored how electronic mood monitoring could capture priorities from patients' perspectives.

Methodology

ParticipantsBDRN is an ongoing program studying the genetics and environment of BD. Inclusion criteria include:

Aged 18 or older
Written consent
Meets DSM-IV BD criteria
Mood symptoms onset before age 65Recruitment through NHS services and advertisements via organizations like Bipolar UK.

Mood Monitoring System: True ColoursDeveloped by the University of Oxford for clinical use. Participants receive weekly email prompts to complete two core questionnaires:

Quick Inventory of Depressive Symptomatology (QIDS)
Altman Self-Rating Mania Scale (AMS)Participants can log in to view their mood graphs and responses.

Personalized QuestionsParticipants can choose up to 10 questions to answer daily and another 10 weekly. 19 optional pre-set questions available, organized into 11 categories, including anxiety, sleep, and medication. Users can create bespoke questions with various response types (yes/no, numeric scales).

Data AnalysisA qualitative content analysis method was employed: Each bespoke personalized question was coded into categories based on an initial coding scheme. Categories were refined through an iterative process. Frequencies of questions in each category were counted and analyzed.

Results

Sample Characteristics308 participants (29% of 1080) engaged with pre-set or bespoke questions. 71% female with a mean age of 50 years. Majority diagnosed with bipolar disorder I or II.

Categories of Personalised QuestionsTotal of 927 bespoke questions recorded. Most common pre-set and bespoke question categories:

Physical activity & exercise - 147 participants
Anxiety & panic - 147 participants
Sleep - 139 participants
Coping/stress levels - 112 participants
Mood instability - 82 participantsUnique bespoke questions included:
Anger: Questions about triggers for anger, frequency of outbursts or irritability.
Cognition: Evaluation of concentration levels and memory issues.
Mood monitoring: Detailed assessments of mood changes, including the identification of potential triggers or stressors.

Overarching ThemesFrom the analysis of these categories, several overarching themes emerged that reflect the multifaceted experiences of individuals with BD. These include:

Mental health: Concern not only with mood stability but also broader emotional well-being.
Behavior and level of functioning: Insights into how mood affects daily activities and social engagement.
Physical well-being: The importance of physical health in the context of mental health, affecting energy levels and overall function.
Health behaviors: Such as medication adherence and lifestyle choices that impact bipolar management.
Active self-management: The proactive role individuals take in monitoring their moods, recognizing early signs of mood changes, and implementing strategies for management.
Interpersonal relations: The quality of social contact, feelings of isolation, and how mood directly impacts relationships.

Discussion

True Colours highlights broader aspects of BD beyond traditional mood symptoms. Personalized monitoring tools may align with patient experiences and enhance communication with clinicians. Insights may help in creating more effective self-management interventions for BD.

Limitations and Future DirectionsSample characteristics indicate findings may not generalize to younger individuals with BD. Further research needed to explore motivations for monitoring, alongside personalized measures to increase relevance.