True Colors: Digital System for Managing Bipolar Disorder
Managing highs and lows has always been a challenge for people with bipolar disorder, but noticing changes before episodes occur is now made easier thanks to an Oxford-based system called True Colors.
True Colors is a web-based system of symptom reporting with over 1000 patients enrolled across Oxfordshire and Buckinghamshire. Originally developed for bipolar disorder, it is now being piloted in other mental health conditions, like anxiety and psychosis.
First introduced 10 years ago, True Colors emerged as an idea of two professors of psychiatry at the University of Oxford, John Geddes and Guy Goodwin, who were seeing a large number of patients who, during their visits, relied on retrospective recall. Challenged by the biases it brought, the two clinicians wanted a way for patients to record their mood scores in a systematic and regular way that would allow timely intervention when changes occurred, but before full-blown episodes developed. Additionally, the scientists noted, some patients were seen regularly every three or six months, even if they didn’t need to come into the clinic. To make the use of resources more efficient, Geddes and Goodwin came up with a system that could potentially alert clinicians when an intervention was necessary.
What’s the fuss?
True Colors, also known as OXTEXT, is an online self-management system that allows patients to monitor their symptoms using text, email, and the internet. By filling out questionnaires, patients create a record of their mood and can see how it changes over time. To help manage health, the information can be shared with family, friends or care team.
“The key here is team work,” said Jonathan Price, one of the Oxford-based clinicians involved with the development of the system. “Patients are encouraged to be self-reliant, but it’s also a way of seamlessly sharing information about how they’re doing,” Price elaborated, adding that traditionally a patient or a relative would ring up a clinician only when the patient wasn’t doing well, often meaning that an emergency admission was required. “Now we’re getting regular feedback from patients, and they and their doctors can see where things are going up or down. It’s about effortlessly sharing information about how patients are doing,” Price explained.
How it works
The system can send an automated message at any time of the day, on any day of the week. When you register with True Colors, you can choose what time and day is most convenient for you, as well as the mode in which you wish to answer questions: email, text or online.When using the text option, a patient will receive a pocket-sized copy of a questionnaire to refer to, separate for a questionnaire for depression (QIDS), and mania (ALTMAN). A separate reply is required for each questionnaire, with answers typed in the appropriate order. In case of an email option, True Colors sends a message with a link to a questionnaire, which allows the patient to complete and submit their scores. Alternatively, questionnaires can be completed online by logging onto the website, www.truecolours.nhs.co.uk, where answers can be submitted even at times when they’re not prompted.
Although originally only two types of questionnaires were launched – QIDS for depression and ALTMAN for mania – more have been added recently, including GAD-7 for anxiety, an eight-item list for psychosis, and a quality of life scale. However, even though added to the system, the extended questionnaires are now available only to patients seen by community mental health team, with plans to expand their accessibility across the trust in the near future.
In addition to standardized questionnaires, patients have the possibility to add personalized questions, which can be about anything relevant to the individual. Moreover, patients can add notes pertaining to medication, exercise or nutrition, which can help keep track of habits that allow them to stay healthy.
“Feedback from patients indicates that standardized questionnaires are fine, but they’re not enough, which is why we’ve developed personalized questions,” Price said. “Patients can ask weekly and daily questions, they can be prompted in the same way at regular questions, and they can be about anything they like. Patients have fed back to us that this is really helpful because it makes the system customizable.”
Adherence to the system is surprisingly good, with some people using it consistently since 2007, but how would that look if implemented across the trust, it’s difficult to say. “Clearly, we have a self-selected group of patients, who tend to opt into this. Those are people who think they can benefit from it, usually people comfortable using technology,” Price admitted. The system is easy to use, there is a lot of support for people enrolled in it, and the Oxford team are working on further simplifying certain features of the program.
“The key is flexibility, meaningful use for patients, effortlessness, low cost, and reliability of the system, meaning that the levels of frustration are low. Most importantly, it’s the patients who are driving the system,” Price said, speculating that over time OXTEXT is likely to develop as a generic platform to support people who suffer from long-term illnesses.
The biggest challenge for the clinical utility of the system is when the data stream stops and no information is coming in. “Then, as a physician, you’re stuck, so a lot of the work we’re doing is about encouraging patients to continue submitting the data, and to develop systematic ways of responding when they’re not doing that,” Price added.
OXTEXT is a part of on-going research funded by the NHS NIHR grant. It has enabled us to assemble a cohort of 400 people with bipolar disorder, who are being tracked through time, whose scores are being accumulated, and who are being interviewed regularly. Additionally, when patients first enroll with the system, they’re subject to a number of neuropsychological tests, and their blood and saliva samples are taken.
About bipolar disorder
A diagnosis of bipolar disorder is given when people experience mood disturbances, including depression and elation. The changes in mood from low to high can be extreme and persistent. In contrast, most people who don’t have bipolar disorder experience mild changes in mood, from happiness to sadness, day-to-day or week-to-week. These changes in mood can be spontaneous, or can be caused by the things that happen in everyday life. Usually people cope naturally with mood changes as part of life, however, for people diagnosed with bipolar disorder, even those everyday ups and downs tend to be more severe and can affect functioning at work, at home, and in relationships. Active approach is helpful because it focuses on more than just the extreme episodes or ‘breakdown phases,’ that can define bipolar disorder. The main focus is on less severe variations in mood, when things are going pretty well. The more patients can achieve control of their mood in this phase, the less likely they are to relapse into an episode of major illness.
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