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Gordon-Smith, Katherine; Saunders, Kate E.A.; Morton, Thomas; Savage, Julia; South, Matthew; Geddes, John; Craddock, Nick; Jones, Ian; Jones, Lisa
Journal of affective disorders, 03/2023, Letnik: 324Journal Article
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. 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. 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. Responder bias may be present. Findings may not be generalisable to all research cohorts. 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. •Benefits and limitations of long-term remote digital self-monitoring were assessed.•Participants: individuals with Bipolar Spectrum Disorders (BSD; N = 362)•Majority valued the tool; personalisation and ease of use were important.•Sharing BSD self-monitoring mood data with others may enhance communication.•Limitations: responder and reporting bias, small sample responses, generalisability
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JCR | SNIP | JCR | SNIP | JCR | SNIP | JCR | SNIP |
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in: SICRIS
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