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Project Title:
Schizophrenia Patient and Family Continuity of Care
Funding Agency:
National Institutes of Health
Total Project Period:
Sep 01, 2001 - Aug 31, 2007
Principal Investigator:
Armando Rotondi, PhD
Co-Investigator(s):
Rohan Ganguli, M.D.; Matcheri Keshevan, M.D.; Carol Anderson, Ph.D.; William
Gardner, M.D.; Michael Spring, Ph.D.; Gretchen Haas, Ph.D.; Christina Newhill, Ph.D.
Project Summary:
One of every 100 people has schizophrenia statistic consistent from region to region, and country to country. In the US, more than two million adults are affected by schizophrenia in any given year, and up to 100,000 are in public mental health hospitals on any given day. Those with schizophrenia usually require medication for management, and though paramount, this is only one component of optimal treatment. The common issue of lack of adherence with medications dictates that treatment programs include outreach, preferably with family involvement, otherwise medications regardless of their effectiveness, are often not taken. The Patient Outcomes Research Team (PORT) study of schizophrenia concluded that medical treatment needed to be embedded in a comprehensive psychosocial, rehabilitative, and family treatment program. Relatives who care for a family member with schizophrenia are often under great stress, face a heavy emotional burden, and are at increased risk for both physical and psychological illnesses. Approximately 75% of these family members report feeling chronically overloaded and strained. The evidence indicates that these caregivers may feel helpless in dealing with, and adjusting to the illness. In order to reduce family distress, and improve patient outcomes, it is important that family members learn about schizophrenia, ways to minimize the chance of relapse, coping strategies to minimize crises, problem-solving skills to solve day-to-day problems, and effective ways to promote social functioning of the patient. Programs that provide this type of family psycho-education have shown significant improvements in patient and family outcomes. Unfortunately, the long-term effectiveness and availability of these programs varies widely.
The overall goal of this project is to assess the feasibility of using the World Wide Web (Web) and in-home computers to provide patients with schizophrenia and their families a comprehensive psycho-educational program. This will include guidance from mental health professionals, social support, information, and easy access to professional expertise. The purposes of this intervention are to improve: 1) the availability, convenience, and use of needed mental health services; 2) family support for their ill family member; 3) patient adherence to treatment, and; 4) patient and family outcomes.
Families in the intervention group will participate in an initial 4-hour Psycho-educational Survival Skills Workshop (PSSW) and will then be provided with continuing mental health support services via our website. The website will contain six modules: 1) a library of reading materials to reinforce the PSSW; 2) a combined patient and family member, multi-family support group, which is facilitated by a mental health professional; 3) a support group for the patients with schizophrenia that is facilitated by a mental health professional; 4) an ability to e-mail questions to our group of experts and receive answers within 24 hours; 5) a question and answer library of the previously asked and answered questions, and; 6) a library of community resources. A working prototype of the Web intervention, with initial feasibility data on user acceptance and utilization, and data to estimate the size of the interventions effects on patient and family outcomes, will be essential to further evaluate this approach, and develop a full-scale clinical trial of this intervention. This proposal has the following specific aims.
Specific Aim 1: To obtain effect size estimates, using a randomized treatment and control group design, of the influence of the intervention on the primary family caregivers. Psychological distress, and knowledge of schizophrenia.
Specific Aim 2: To obtain an estimate of the size of the interventions effect on patient relapse rate.
Specific Aim 3: To evaluate patient and family reactions to the Web intervention, including, satisfaction, utilization, perceptions of the ease of use and the value of the intervention, both overall, and for each module.
The traditional approach to mental health care focuses on providing services in a clinic or other provider setting, often as the result of an acute illness or psychiatric episode. Recently, home-based services have been developed that successfully engage patients and families who might otherwise not receive services. However, sending mental health professionals to consumers’ homes is costly and difficult to administer. The intervention in this proposal is a logical and potentially more economical extension of this approach. It will allow the delivery of a variety of mental health services into users homes, where it is most convenient, is often needed, and may be the most effective at preventing relapse, facilitating recovery, and reducing patient and family morbidity. The intervention has been designed to improve access to, and utilization of, mental health and social services, by reducing the psychological, social, and geographic barriers to these services. This approach has the potential to increase the appeal and convenience of mental health services, while improving their outcomes and decreasing their costs. |
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