Self-managed versus agency-provided personal assistance care for individuals with high level tetraplegia.

OBJECTIVE To determine whether a finite population, with severe physical disability, had better perceived quality of life, health status, and lower cost depending on whether they used agencies for their caregivers 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 completed by telephone, by the leading author. PARTICIPANTS Seventy-one persons who had sustained spinal cord lesions between C1 and C4. All were at least 1 year postinjury and had received rehabilitation at a local hospital in Englewood, Colorado. Ten additional persons came from the leading author's case management caseload or from a Boston rehabilitation center. They were interviewed in person for pretesting. MAIN OUTCOME MEASURES Chi square, t tests, and multiple regression analysis, which controlled for potentially confounding group differences. Individuals 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 outcomes, with fewer rehospitalizations and diminished preventable complications. They also experienced greater life satisfaction and significantly lower costs. Those in the self-managed care group had significantly higher composite scores on Rand-36, indicating higher perception of recent health status. Significant differences in mean PIP scores indicated 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-managed care group. CONCLUSIONS The self-managed care group had many more hours of paid attendant care, whereas the agency provider group had almost equal amounts of care from paid and unpaid providers. Persons using self-managed care reported having fewer medical problems, fewer hospitalizations and better perception of health. Participants declared greater satisfaction in having a choice of caregivers. Persons who were self-managing their care spent less money and used more hours of paid care. The financial burden borne both by the individual and society and the emotional burden borne by families and friends were diminished by the persons managing their care individually.