Care Indicator, a Self Management E-tool for Early Signaling and Intervention in Bipolar Disorder Dimence, Centre for Bipolar Disorders, Deventer, the Netherlands 1 Saxion University of Applied Sciences, Deventer, the Netherlands 2 P.J.J. (Peter) Goossens, PhD APRN RN FEANS 1,2 B. (Bart) Geerling, MANP RN 1 A.W.M.M. (Anja) Stevens, MD 1 H. (Hans) Schreurs, MHCSW 2 Objectives Understand how E-tools can be supportive in the prevention of recurrence of episodes in bipolar disorder Identify the advantages and disadvantages of using an E-tool Dr. Goossens has no conflicts of interest to disclose Bipolar disorder Complex chronic severe mental illness with a lifetime prevalence of 1.5% to 2% Characterized by alternations of depressive, (hypo)manic, and possible mixed episodes Treatment is aimed at the prevention of subsequent episodes and when an episode occurs, reduction of its impact Goossens 1
Bipolar disorder Major consequences for patients, relatives and the community High suicide rates Low QoL and social functioning High use of alcohol and drugs High caregiver burden High costs for the community Collaborative Depression Study: 232 treated patients, 12 year follow-up Bipolar I (N=146) Bipolar II (N=86) Judd et al, Arch Gen Psychiatry, 2002, 2003 Patiënt 1 Four patients during a five year period Patiënt 2 Patiënt 3 Patiënt 4 5 year Goossens 2
Self-Management Skills 1. Changes in life style 2. Dealing with the psychological stress of having a chronic disease 3. Effective communication with health care professionals 4. Being able to recognize early warning signs (prodromes) of depression or (hypo)mania and respond to them adequately. Are patients able to recognize their prodromes? n = 111 Question: What is the first sign of behaviour that you recognize in yourself that leads up to a manic or depressive episode? 28% did not recognize prodromes of mania 28% dit not recognize prodromes of depression 12% was not able to recognize either of them Goossens P.J.J. et al. (2010). Recognising prodromes of manic or depressive recurrence in outpatients with bipolar disorder: A cross-sectional study International Journal of Nursing Studies 47 1201-1207 What about family and relatives? They always recognize these first signs! And often, in case of hypomania, war starts when they speak out their concerns. Goossens 3
So we developted Care Indicator Care Indicator is an internet based tool that helps both patient and (informal) caregivers to monitor patient specific prodromes and symptoms. The patient and his/her relatives monitor the patient s prodromes on a (bi)weekly basis. The patient and the professional receive a signal when an intervention is (possibly) needed. people reporting on a (bi) weekly basis Patient, professional and relatives develop a relapse prevention plan Standard prodromes Patient specific prodromes How is patient X today? The patient is not doing very well. submit Specify per prodrome? Goossens 4
Elevated mood I am euphoric and very talkative and enthusiastic Warning: Patient is agitated Alarm: patient is not doing well. Very agitated and irritated Prompt action! Charting the course Goossens 5
Pilot study 9 participants; 7 patients, 1 relative, 1 professional Average score for general value of the program: 7.6 Satisfied with functionality: 7 Satisfied with simplicity: 6 Satisfied with user-friendliness : 7 Satisfied with adjustability: 5 Satisfied with lay-out: 7 Satisfied with general design: 7 Qualitative feedback I 2 patients stopped using Care Indicator: I had problems logging in and just gave up I was admitted to the hospital and had other things to do 4 patients say that Care Indicator is helpful to them It helps me in communicating with my therapist. I am so lucky that I am able to recognize switches in my mood It gives me insight in what triggers my mood I am actively involved in my own treatment 3 patients say that Care Indicator is not helpful yet I only report how things are going how can it be helpful? I am stable for a long time now so Care Indicator is not necessary I am sure now that I don t have a bipolar disorder Qualitative feedback II Advantages It is a useful tool to monitor my mood and my treatment results My relatives have a direct connection to my therapist now It is possible to personalize my specific signs in this tool It is very easy to report how things are going. When everything is OK, it only takes a few clicks with the mouse. The website looks fine. Not too complicated Disadvantages: Developing a relapse prevention plan in Care Indicator is rather complex and complicated. There is not an app for my Ipad/phone. It only works on Google Chrome It would be great if my medication list was in Care Indicator and my lab results Goossens 6
And now Care Indicator is improved and easier to use Care Indicator runs on multiple platforms Descriptive longitudinal study with a mixed method design with 100 patients and their relatives / professionals (june 2013 march 2014) Preparing an RCT Thanks for your attention Questions? Dr. Peter Goossens Professor in Mental Health Saxion University of Applied Sciences Deventer, the Netherlands p.j.j.goossens@saxion.nl @GGZSaxion Goossens 7