The goal of this project was to evaluate a comprehensive model of long-term care in multiple sclerosis (MS). This model consisted of workshops designed to assist participants cope with caregiving demands; medical day care to provide rehabilitation and group therapy; home visits by a psychotherapist or nurse to assist with practical and psychological issues; and case management and liaison services.
Thirty patient-caregiver units receiving treatment were compared with 29 control subjects, with data being collected on 3 occasions over a 2-year period. Repeated measures analysis of variance found that physical functioning declined for MS subjects as indicated by Kurtzke score, Incapacity Status Scale score, and number of hospitalizations. The experimental group reported an increase in perceived cognitive deficits and decreased anxiety. Control subjects reported a greater decline in perceived health than experimental subjects as assessed by the SF-36 general health subscale. All caregivers reported increased overcommitment. Caregivers of controls reported significant decreases in perceived health and that health problems and caregiving activities interfered with social activities. Persons with MS in both groups reported increased satisfaction with caregiver help, while control subjects reported greater satisfaction with the timeliness of help received.
These results provide valuable information about effective ways to use and integrate community resources in the provision of long-term care for persons with MS.
This study was supported in part by grant #RTC84-133 from the National Institute on Disability and Rehabilitation Research (1993–1998) and grant #817-5463A from the Paralyzed Veterans of America's Spinal Cord Research Foundation (1998–1999).
Presented in part at the Multiple Sclerosis Centers annual consortium, September 6, 1997, Calgary, Alberta, Canada; October 3, 1998, Cleveland, Ohio; and May 15, 1999, Kansas City, Mo.