SELF-MANAGED VERSUS AGENCY-PROVIDED PERSONAL ASSISTANCE CARE FOR INDIVIDUALS WITH HIGH-LEVEL TETRAPLEGIA

Objective: To determine whether a finite population, with severe physi cal disability, had better perceived quality of life, health status, a nd lower cost depending on whether they used agencies for their caregi vers or hired, trained, and reimbursed their caregivers, independently . Design and Setting: A survey, including demographics and portions of the Rand-36, LSI-A, PASI, PIP and CHART. The interviews were complete d by telephone, by the leading author. Participants: Seventy-one perso ns who had sustained spinal cord lesions between C1 and C4. All were a t least 1 year postinjury and had received rehabilitation at a local h ospital in Englewood, Colorado. Ten additional persons came from the l eading author's case management caseload or from a Boston rehabilitati on center. They were interviewed in person for pretesting. Main Outcom e Measures: Chi square, t tests, and multiple regression analysis, whi ch controlled for potentially confounding group differences. Individua ls were placed in two cohorts. Twenty-nine persons received primarily agency provided care and 42 individuals used personal care attendants. Results: The self-managed group showed significantly better health ou tcomes, with fewer rehospitalizations and diminished preventable compl ications. They also experienced greater life satisfaction and signific antly lower costs. Those in the self-managed care group had significan tly higher composite scores on Rand-36, indicating higher perception o f recent health status. Significant differences in mean PIP scores ind icated that members of the self-managed care cohort perceived greater control over day-to-day lives. PASI scores showed that persons in this cohort had greater satisfaction with their caregivers and costs. Cost benefit analysis showed appreciable lowering of costs in the self-man aged care group. Conclusions: The self-managed care group had many mor e hours of paid attendant care, whereas the agency provider group had almost equal amounts of care from paid and unpaid providers. Persons u sing self-managed care reported having fewer medical problems, fewer h ospitalizations and better perception of health. Participants declared greater satisfaction in having a choice of caregivers. Persons who we re self-managing their care spent less money and used more hours of pa id care. The financial burden borne both by the individual and society and the emotional burden borne by families and friends were diminishe d by the persons managing their care individually. (C) 1995 by the Ame rican Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation