User perspectives on long-term remote active electronic self-monitoring of mood symptoms in bipolar spectrum disorders

Gordon-Smith, Katherine ORCID: https://orcid.org/0000-0003-4083-1143, Saunders, K. E. A., Morton, Thomas ORCID: https://orcid.org/0000-0001-8264-0834, Savage, J., South, M., Geddes, J., Craddock, N., Jones, I. and Jones, Lisa ORCID: https://orcid.org/0000-0002-5122-8334 (2023) User perspectives on long-term remote active electronic self-monitoring of mood symptoms in bipolar spectrum disorders. The Journal of Affective Disorders, 324. pp. 325-333. ISSN Print: 0165-0327 Online: 1573-2517

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Abstract

Background
User feedback is crucial in the development of electronic self-monitoring tools for bipolar spectrum disorders (BSD). Previous studies have examined user experiences in small samples self-monitoring over relatively short time periods. We aimed to explore the experiences of a large sample of individuals with BSD engaged in long-term remote active electronic self-monitoring.

Methods
An online survey, containing closed and open questions, was sent to participants with BSD enrolled on the Bipolar Disorder Research Network (BDRN) True Colours mood-monitoring system. Questions related to experiences of using True Colours, including viewing mood graphs, and sharing data with healthcare professionals (HCPs) and/or family/friends.

Results
Response rate was 62.7 % (n = 362). 88.4 % reported finding using True Colours helpful. Commonly reported benefits were having a visual record of mood changes, patterns/triggers and identifying early warning signs. Limitations included questions not being comprehensive or revealing anything new. One third had shared their graphs, with 89.9 % finding it helpful to share with HCPs and 78.7 % helpful to share with family/friends. Perceived benefits included aiding communication and limitations included lack of interest/understanding from others.

Limitations
Responder bias may be present. Findings may not be generalisable to all research cohorts.

Conclusions
The majority of participants valued long-term self-monitoring. Personalisation and ease of use were important. A potential challenge is continued use when mood is long-term stable, highlighting the need for measures to be sensitive to small changes. Sharing self-monitoring data with HCPs may enhance communication of the lived experience of those with BSD. Future research should examine HCPs' perspectives.

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