Practical considerations for the development of a psychoeducation programme: lessons from the Cardiff experience

Bipolar disorder is characterised by episodes of depression and mania or hypomania. Most patients tend to experience predominantly chronic depressive symptoms or recurrent depressive episodes with the result that bipolar depression can be misdiagnosed as major depressive disorder. This can lead to inappropriate medication choices and increased healthcare costs 1, 2. Psychoeducational interventions for bipolar disorder – particularly group interventions – that are delivered alongside medication, are known to be effective in reducing rates of relapse and can have a positive impact by helping patients to develop a range of long-term, self-management skills 3. In 2008, the Cardiff University Psychiatry Service, with the help of a grant from the UK Big Lottery Fund and research funding from the National Institute of Health Research, established the Bipolar Education Programme – Cymru (BEP-C). The main aims of this programme were to deliver internet- and group-based psychoeducation to individuals with bipolar disorder across Wales and to provide an educational programme for healthcare professionals aimed at improving the diagnosis and management of bipolar disorder. The BEP-C website (www.bep-c.org) has interactive modules for three separate audiences: partners, families and carers; women with bipolar disorder; and primary-care practitioners. These three modules aim to find practical ways in which families and friends of people with bipolar disorder can make a positive contribution to their long-term care; educate pregnant and/or breastfeeding women about potential risks associated with childbirth and the use of medication during pregnancy and breastfeeding; and to provide healthcare professionals with up-to-date information about the presentation and diagnosis of bipolar disorder. Group-based psychoeducation sessions within the Cardiff BEP-C programme have a 10-session structure, with each session forming the basis for a group discussion around topics such as the causes of bipolar disorder, lifestyle influences, monitoring mood and identifying triggers, early warning signatures, medication issues, psychological approaches and the role of family and friends. The programme is delivered over 10 weekly meetings with each session lasting for 2 h. Sessions consist of a combination of presentations, group discussions and group exercises. Our experience to date has been that these sessions are valued by both patients and professionals. Patients have indicated that they benefitted from the strong sense of group cohesion during the sessions and valued the authoritative content of the material delivered. The material was considered to be very relevant to patients’ needs. These sessions are facilitated by two community psychiatric nurses under supervision of consultant psychiatrists in the BEP-C team. This online intervention allows patients with bipolar disorder to remotely participate in psychoeducation on an individual basis, but also to join online group discussions within a secure patient forum. The Beating Bipolar programme was carefully designed to address the needs of patients with bipolar disorder, including consideration of potential depressive symptoms, cognitive impairments and brief attention span 4. Eight modules were developed, each 30 min long, on topics such as the contribution of lifestyle choices to episodes, medication issues and strategies for relapse prevention (Table 1). Each module contains an introductory overview and a module summary, as well as interactive exercises to be completed by the patient. The aim of Beating Bipolar is to deliver information in a variety of ways and to actively engage users in self-management exercises 5. For example, by assessing the characteristics of how they feel, think and behave, patients can develop a symptom profile, explore changes in their behaviour and create a life chart, which aids in the identification of relapse prevention signatures and early intervention plans. Patients also create a portfolio of completed exercises that can be revisited, updated and shared with their family and healthcare providers. Module 1 What is bipolar disorder? Module 2 What causes bipolar disorder? Module 3 Medication Module 4 Lifestyle Module 5 Relapse prevention and early intervention Module 6 Psychological approaches Module 7 Partners, families and carers Module 8 Women and bipolar disorder Although group psychoeducational interventions are promising long-term options in the management of bipolar disorder 6, the translation of group material to a web-based format such as Beating Bipolar is a relatively new development. Assessments of user engagement with Beating Bipolar have indicated that the majority of patients accessed and completed approximately 75% of the content 5. The challenge for any type of psychoeducational intervention is to address the individuality, abilities and preferences of patients with bipolar disorder and to anticipate the features of the disorder that may restrict patients to participate in interventions. Patients experienced the Beating Bipolar website in different ways; some preferred the anonymity of a computer/home-based intervention, while others stated that they favoured the support and social contact arising from group-based therapies 7. One advantage of the internet-based intervention over group-based therapies is that modules are paced at 2-week intervals and can be revisited to ensure that patients have the opportunity to consolidate their knowledge and take in the information presented at their own pace. In particular, patients found the ability to share the module content and patient exercises with family and carers very helpful. However, some patients felt that the interactive aspect of the discussion forum was underdeveloped and judged it as not having reached a critical mass for valuable group conversations. Nevertheless, overall, most patients reported a greater awareness and understanding of the disorder, which resulted in lifestyle changes, behaviour changes and changes in attitude towards their illness and medication. Clearly more research is needed on the potential advantages and disadvantages of delivering structured psychoeducational interventions for bipolar disorder (and other conditions) via the internet. It is clear that the development of internet-based interventions needs to be acceptable to patients in terms of applicability, information, delivery and relevance 4. The development of the Cardiff programme was based first on a literature search identifying information on suitable programme content and design, including scientific information, the design of e-learning programmes, learner engagement, interactivity, presentation and instructional design 3, 4. The first draft of the programme content, delivery and interactivity was generated by a multidisciplinary team of healthcare professionals, including psychiatrists, psychologists and educational web designers. Further topics of discussion were participant characteristics, mix of media and engagement. Following concept development, the programme was discussed with patients and mental-healthcare professionals to gain an understanding of patient requirements and demands, particularly for Beating Bipolar. Participants of these focus groups could voice their opinion about any aspect of the programme such as inclusion of discussion forums, potential purpose and frequency of face-to-face group meetings, advantages and disadvantages of potential methods of information delivery, acceptability of proposed learning exercises and programme module content. Further discussion points included the role of a lead psychiatrist within the online discussion forum and the balance between information about depression versus manic symptoms. After several rounds of focus groups, patients were encouraged to test the online e-module and determine its level of user-friendliness, online package appearance and impact 4. To test the effectiveness of Beating Bipolar, an exploratory randomised controlled trial was conducted 6, 5. Despite statistically non-significant differences in the primary outcome measure (overall quality of life measured by the World Health Organisation Quality of Life Assessment, WHOQOL-Bref), the Beating Bipolar intervention had a modest positive impact on psychological quality of life of individuals with bipolar disorder 5. In Cardiff, we aimed to engage a younger generation of patients and use as wide a spectrum of media as possible and to this end have developed Bipol-App (a smartphone application) to help patients monitor their daily mood. With this application, patients can record mood, sleep, energy, anxiety and important events on a daily basis and review their mood chart for the preceding 7, 30 and 90 days. The goal of Bipol-App is to aid in the recognition of early warning symptoms, enable the patient to actively monitor their disorder and recognise when to seek professional help sooner rather than later. Patients also have the option of permitting healthcare professionals, carers and family members to view their mood profiles (www.beatingbipolar.org/bipol-app). A formal evaluation of Bipol-App is currently underway. Bipolar disorder is associated with considerable long-term personal and social impairment and has a significant impact on the economy. Therapeutic strategies that optimise community-based management, prevention of recurrence and unnecessary hospitalisation could reduce the economic burden of the disorder. Psychoeducational programmes such as that described above have considerable promise in this regard. Group psychoeducation is likely to be a cost-effective option compared with standard care, but further studies are required to assess this. Similarly, internet-based delivery of psychoeducation to large numbers of patients may prove cost-effective and allows geographically diverse patient groups to access these interventions more easily 8. An ongoing concern is that many individuals with bipolar disorder (particularly bipolar II disorder) may be misdiagnosed as recurrent depressive 9. It is therefore important to develop and evaluate strategies for improving the diagnostic capabilities of primary- and secondary-care practitioners alongside delivering educational interventions within busy clinical settings. Overall, the Cardiff experience has shown that psychoeducational interventions can be successfully developed in close collaboration with patient groups and delivered to relatively large numbers of patients. Our group was fortunate in having development support from the Big Lottery Fund and from the National Institute of Health Research, but our recent experience with colleagues from across the NHS has been that it is possible to deliver similar interventions at relatively low cost and that these interventions are highly valued by patients and professionals alike. The meeting on which this supplement is based was supported by Bristol-Myers Squibb, Uxbridge, UK. Editorial support for the preparation of this manuscript was provided by Ogilvy Healthworld Medical Education, London, UK; funding was provided by Bristol-Myers Squibb. This manuscript is a result of a 1-day educational standalone symposium sponsored with an unconditional educational grant by Bristol-Myers Squibb, who also sponsored this publication. Professor Allan H. Young is employed by Imperial College London. He is an Honorary Consultant Psychiatrist with WLMHT (NHS UK), has given paid lectures and advisory boards for all major pharmaceutical companies with drugs used in affective and related disorders, has no share holdings in pharmaceutical companies and was a Lead Investigator for the Embolden Study (AstraZeneca), BCI Neuroplasticity Study and Aripiprazole Mania Study and for investigator-initiated studies from AstraZeneca, Eli Lilly and Wyeth. He has received grant funding (past and present) from: NIMH (USA); CIHR (Canada); NARSAD (USA); Stanley Medical Research Institute (USA); MRC (UK); Wellcome Trust (UK); Royal College of Physicians (Edin); BMA (UK); UBC-VGH Foundation (Canada); WEDC (Canada); CCS Depression Research Fund (Canada); MSFHR (Canada) and is coholder of one European patent for the use of glucocorticoid antagonists in the treatment of depression. Dr Daniel J. Smith is currently employed by the University of Glasgow but worked at Cardiff University between 2006 and 2012. He has given paid lectures and participated in advisory boards for Lilly, AstraZeneca, Shire, Bristol-Myers Squibb and Lundbeck and has received grant funding (past and present) from the National Institute of Health Research, UK, MRC/Welsh Assembly Government, NARSAD, the American Psychiatric Association/AstraZeneca and the Big Lottery Fund.

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