ABSTRACT In order to facilitate optimal quality and continuity of care and self-management of patients with schizophrenia, Personal Control in Rehabilitation (PCR) has been developed, a comprehensive internet-based platform. PCR aims to reach patients with schizophrenia or related psychotic disorders and their (in)formal caregivers. It provides caregivers and patients with a kind of dashboard giving them (tailored) information about the physical and psychosocial situation of the patient, their compliance with treatment, and facilitates optimal self-management for patients. With the use of PCR, informal caregivers have access to information about treatment and can consult formal caregivers, formal caregivers have easy access to the multidisciplinary guideline schizophrenia and to the regional care plans. Patients and their formal and informal caregivers completed questionnaires about empowerment, quality of life, quality of care and workload before the introduction of PCR and nine months later. A sample of them also participates in focus group discussions about the usefulness and usability of PCR and bottle necks in using the platform. Response to the questionnaires, especially at followup, was not adequate for statistical analyses of its results. Therefore, the focus of this paper is on the process evaluation of the implementation of PCR in two large mental health organisations in the Netherlands. Data for this evaluation are results of a number of open questions of the questionnaire and results of the focus group discussions. In these discussions, 19 patients, 12 informal caregivers, 33 formal caregivers and three managers participated. Preliminary results of this study show that the implementation of PCR is feasible and patients, formal and informal caregivers were satisfied with the use of PCR and frequently used PCR to communicate, make appointments, give feedback and look for information about their disease and its treatment. PCR is considered as a help in reaching more self-management by patients, to facilitate communication between patients and caregivers, and to match treatment and support. It seems useful also for other patient groups and their (in)formal caregivers like patients with depression, autism and addiction disorders.
Cite this paper
de Leeuw, J. , van Splunteren, P. and Boerema, I. (2012) Personal control in rehabilitation: An internet platform for patients with schizophrenia and their caregivers. Open Journal of Psychiatry, 2, 355-361. doi: 10.4236/ojpsych.2012.224050.
 McGrath, J., et al. (2004) A systematic review of the incidence of schizophrenia: The distribution of rates and the influence of sex, urbanicity, migrant status, and methodology. BMC Medicine, 2, 13.
 Van Meijel, B. (2003) Relapse prevention in patients with schizophrenia: A nursing intervention study. Ph.D. Thesis, University of Utrecht, Utrecht.
 Chisholm, D. (2005) Choosing cost-effective interventions in psychiatry: Results from the CHOICE programme of the World Health Organization. World Psychiatry, 4, 37-44.
 Andrews, G. et al. (2004) Utilising survey data to inform public policy, comparison of the cost effectiveness of treatment of ten mental disorders. British Journal Psychiatry, 184, 526-533. doi:10.1192/bjp.184.6.526
 Van Weeghel, J., et al. (2011) Do multidisciplinary guidelines improve the quality of regional mental health care for people with schizophrenia in the Netherlands? Psychiatric Services, 62, 789-792.
 Drake, R.E., et al. (2005) State mental health authorities and informatics. Community Mental Health Journal, 41, 365-370. doi:10.1007/s10597-005-5009-7
 Liberman, R.P. (1995) Basic elements in biobehavioral treatment and rehabilitation of schizophrenia. International Clinical Psychopharmacology, 9, 51-58.
 Vauth, R., et al. (2007) Self efficacy and empowerment as outcomes for self-stigmatizing and coping in schizophrenia. Psychiatry Research, 150, 71-80.
 Lloyd, C., et al. (2010) Subjective and objective indicators of recovery in severe mental illness: A cross sectional study. International Journal Social Psychiatry, 56, 220-229. doi:10.1177/0020764009105703
 Drake, R.E. et al. (2009) Implementing evidence based practices for people with schizophrenia. Schizophrenia Bulletin, 35, 704-713. doi:10.1093/schbul/sbp041
 Van der Krieke, L. et al. (2010) Self-management in psychotic disorders: A dynamic web application. Poster Presentation at IEPA, Amsterdam.
 Bahler, M. and Oosterveld, H. (2011) Shared decision making. Annals of Psychiatric Rehabilitation, 12, 203-212.
 Weeghel J van (2005) Assertive community treatment and rehabilitation. In: Mulder, C.L. and Kroon, H., Eds., Assertive Community Treatment, Cure & Care Publishers, Nijmegen, 87-114.
 Lambert, M.J., et al. (2005) Providing feedback to psychotherapists on their patient’s progress: Clinical results and practice suggestions. Journal Clinical Psychology, 61, 165-174. doi:10.1002/jclp.20113
 Mueser, K.T. and McGurk, S.R. (2004) Schizophrenia. The Lancet, 363, 2063-2072.
 Vital Health Software (2012) Personal Control in Rehabilitation. https://testers.vitalhealthsoftware.co.in/
 Weingarten, S.R., et al. (2002) Interventions used in disease management programmes for patients with chronic illness-which one works? Meta-analysis of published reports. British Medical Journal, 325, 1-8.
 Young, A.S., et al. (2007) Information technology to support improved care for chronic illness. Journal of General Internal Medicine, 22, 425-430.
 Schrank, B., et al. (2010) How patients with schizophrenia use the internet: qualitative study. Journal Medical Internet Research, 12, e70. doi:10.2196/jmir.1550
 Bauml, J., et al. (2007) Psychoeducation in schizophrenia: 7-year follow-up concerning rehospitalization and days in hospital in the Munich psychosis information project study. Journal Clinical Psychiatry, 68, 854-861.
 Dorr, D. et al. (2007) Informatics systems to promote improved care for chronic illness: A literature review. Journal of the American Medical Informatics Association, 14, 156-163. doi:10.1197/jamia.M2255
 Boevink, W., Kroon, H. and Giesen, F. (2008) Empowerment—Construction and validation of a questionnaire. Trimbos Institute, Internal Publication, Utrecht, The Netherlands.
 Priebe, S. et al. (1999) Application and results of the Manchester short quality of life (MANSA). International Journal of Social Psychiatry, 45, 7-12.
 Kertzman, T., et al. (2003) The Mental Health Thermometer examined: Evaluation of a questionnaire for patient satisfaction in mental health. De evaluatie van een vragenlijst voor clientwaardering in de volwassenenzorg. Internal Publication, Trimbos-Institute, Utrecht, The Netherlands.
 Brooks, R. (1996) EuoroQol: The current state of play. Health Policy, 27, 53-72.
 Veldhoven, M., et al. (2002) Guideline VBBA, SKB Questionnaire Services.
 Brouwer, W.B.F., van Exel, N.J.A., van Gorp, B. and Redekop, W.K. (2006) The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15, 1005-1021.
 Hoefman, R.J., van Exel, N.J.A. and Brouwer, W.B.F. (2010) Measurement and evaluation of informal care with the CarerQol. Tijdschrift Sociale Geneeskunde, 88, 172-185.