How to make online mood-monitoring in bipolar patients a success? A qualitative exploration of requirements

Participants

We recruited 17 participants (11 patients with BD and six mental health professionals). Three patients and one professional withdrew before the start of the study for various reasons, like not being available at the time of the FGM or having a current mood episode. One psychiatrist, one psychologist, two nurse specialists, and one psychiatric nurse represent the professionals. There was a balanced representation in the sample across age (16–24 years one person = 7.7%; 25–40 years four persons = 30.8%; 41–55 years five persons = 38.5%; and 56–70 years three persons = 23%), gender (53.8% female) and residence (rural 46.2%, urban 53.8%). In education (high school, 23%; higher professional education, 61.5%; university, 15.5%), the distribution was less balanced. Although preferences didn’t seem to differ between subgroups (e.g. age or education).

Emerging themes FGM

The FGM were structured in five themes or categories; positive and negative experiences with monitoring, positive and negative aspects of technology and monitoring, and requirements for a monitoring app. The topics that the FG members initially brought forward (by post-it memos) are placed within these categories and summarized in Table 1. Topics that came forward from the FGM are outlined in Table 2.

Table 1 Overview results focus groupTable 2 Additional topicsExperiences (positive and negative) with mood monitoring

First, we discussed the positive and negative aspects of monitoring. The Life Chart Method (LCM) was often mentioned as a monitoring tool, and some remarks refer primarily to the LCM. These valuable remarks were placed in the broad concept of mood monitoring to avoid ‘tunnel vision’ on the LCM in the FG’s early stage.

The following positive experiences were mentioned: ‘providing insight’, ‘guiding in self-management’ and ‘insight into the course of the illness over a more extended period/historical overview’. These items refer to the utility and necessity of the monitoring. Not only insight into the course of the illness was mentioned but also factors that can influence the mood (e.g., medication and sleep). Monitoring can also give direction about how to handle when early signs of relapse do occur.

‘Provides a good insight into the course of bipolar disorder’ (participant 1).

‘Provides insight into the combination of sleep, mood and events’ (participant 6).

‘Provides quick insight, but must be used with the relapse prevention plan’ (participant 11).

On the opposite, participants mentioned several negative experiences or aspects of mood monitoring. Mood monitoring can be experienced as a stressful task that ‘has to be’ accomplished daily, especially in the early stage of the illness. Monitoring is also seen as a confrontation with the illness that can even induce self-stigma. When used in treatment, monitoring can also be ‘experienced as a violation of privacy’ since caregivers can wander through personal data.

‘Being involved with the disease every day by the LC can eventually become compulsive’ (participant 6).

‘It's [monitoring] not always necessary can lead to panic reactions’ (participant 4).

‘You may also be displeased [because of the monitoring, you are too focused on the disease]’ (participant 2).

What could technology mean to improve monitoring?

Secondly, the use of technology as a possible solution was discussed (both potentially positive and negative). As positive aspects, the participants came forward with several expected benefits of online mood monitoring, like ‘get more insight’ in the monitoring and that there will be ‘more overview options’. The FGM expect better availability when the monitoring is always in reach (on mobile devices), the possibility to zoom in and out on the long-term course, the option to ‘use notifications’, and the data to be shared with their caregivers. All the aspects mentioned above contribute to better insight; the FGM didn't expect significant changes in mood monitoring base principles.

Also mentioned was; the ‘possibility of getting feedback’, the idea that it fits in the modern technological age, that the users have ‘more control’ and, because of having a personal account, ‘better privacy’ is guaranteed. The participants partly related their expectations to their experiences with online applications that support their P&P mood monitoring;

‘I discovered when I did the monitoring on my desktop (in Excel, I had made a program for it) that it was easier to fill in the LC because I am sitting daily behind the desktop computer’ (participant 6).

‘I used notifications from another app to remember me to fill in the paper and pencil LCM’—(participant 11).

On the other hand, the participants named different possible negative aspects of online mood monitoring. The need for a device is conditional. The participants are concerned about privacy issues; access to the data has to be limited to patients, caregivers and researchers. Online mood monitoring can lead to a focus on the illness, according to the FGM.

The FG concerns are divided into two themes; technical aspect of mobile phone use and the ‘side effects’ of mobile phone use. The ‘problems in operating the app’ and the ‘incompatibility with other devices’ are mentioned as possible technical barriers. The complex operation required to use an app can reduce the motivation to use the app. The same is expected to occur when the app is not compatible with other devices (e.g., desktops). Also, ‘too many functionalities’ is mentioned as a possible barrier; people can get lost in all kinds of functionalities that distract them from mood monitoring’s main goal. The second theme, ‘side effects’, concerns a technical application that can ‘provoke the use of the mobile phone’ (too much). Even users are ‘unwillingly switch to social media’, especially when they are in a (hypo) manic mood episode.

‘I don't want any interaction with other people, like on social media, because I'm afraid of what I would say when I am manic or depressed.’ (participant 4).

‘One of the disadvantages is that you always, it could be out of power or broken (the mobile device BG); with the booklet (paper and pencil LCM), you do not have that problem.’ (participant 1).

(Technological) requirements

To establish perceptions of an online mood monitoring application’s essential elements, we discussed possible features and how they can tribute to compliance. The identified features can be classified into four categories: freedom of choice, user-friendliness, trustworthiness and goal-setting. The participants unanimously stressed that the LCM principles must be leading in developing the online mood monitoring application.

Freedom of choice seems to be one of the most important topics (8× mentioned). This topic comprises the following aspects: the application must ‘exactly meet the users’ demands’, the possibility to ‘handle algorithms’, although that may also be a bit threatening, like ‘Big Brother’. A clear wish to be able to ‘monitor temporary items’ and that you can ‘choose the words that apply to you’ in the monitoring. ‘Flexibility’, in addition to a fixed basis, is considered highly desirable. Also, the possibility ‘to add text, photos, videos or even music fragments’ was mentioned. If there are elements in the app that are personally ‘indispensable’ for you, using the app makes it more natural (for example, a link with calendar appointments).

The following items were mentioned in the FGM about user-friendliness: the desires to use the app on ‘multiple applications’ and to ‘combine different applications’ are also widely shared (e.g. the combination of the LC with relapse prevention plan, wellness recovery plan or mindfulness app), possibly with a link to the personal health file (PGD) or the electronic patient records (EPD).

The trustworthiness of the application is the third sub-category. The app must have a ‘clear privacy statement’ and a reliable company that markets the application. It must be clear ‘who has access to the LC’s data’ and ‘who can watch the data’. When others view data, one can receive messages (logging).

Finally, goal setting could be identified as an important topic. ‘Goalsetting in self-management’ and the importance of being able to ‘regulate yourself’ seems essential. Also, ‘personalized feedback’ is a motivational option to achieve monitoring goalsetting and increase compliance. In summary, the following quotes show the most important requirements as mentioned by the participants:

‘I would like to see a kind of scroll function that you zoom in or out on the graphic of the LC; I think that would be absolutely fantastic’—(participant 1).

‘I would like to have a kind of diary function in the app so that I can see my appointments with the clinician, and even can monitor of the visit is worsened or improve my mood’—Participant 2

‘The opportunity to load up a video or audio recordings on moments that I being Euthymic so that, when I'm depressed, I can play like a kind of mantra… It could be everything; even a barking dog can you remember at good times.’—(participant 11).

‘Clear graph, the possibility to add notes, the option to add extra data, medication to be filled in per day, the possibility to add additional data (on or off), clarity about data exchange, applicable to multiple devices. No more functions than necessary, no chat function, no hidden data exchange.’—(participant 6).

‘User-friendly, using LC indicators, additional options for monitoring, sending reminders every day (to be set up), giving positive feedback.’—(participant 8).

‘Easy to operate, customizable, different variables, combined with a plan, in addition to having it monitored, being able to turn off notifications. No compulsory use.’—(participant 10).

Based on the results of the FGM, the first concept of functionalities of the app was made.

The consensus within the FG

In the last meeting, the definitive consensus was achieved on how the monitoring application should be working. In developing an online mood-monitoring application, the LCM principles should be the priority. Adjustability and personalization are vital components to start and maintain the use of the application. Privacy must be strictly described, and the patients should own the data.

The consensus statement is shown in Table 3.

Table 3 Consensus monitoring

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