PURPOSE:The prevalence of home care for children requiring mechanically assisted ventilation (MV) for chronic respiratory failure (CRF) has increased steadily over the past three decades, yet few studies describe the multiple etiologies and outcomes in a large cohort of these patients.
METHODS:A statewide Ventilator Assisted Children’s Home Program (VACHP), funded by the state’s Department of Health, began in 1979 serving patients age 3 months to 21 years with oversight of care plans, advocacy, counseling, education and funding for respite nursing care. We reviewed annual VACHP statistics from fiscal year (FY) 1980 through 2007 to determine primary etiologies of CRF, modes of mechanical ventilation, outcomes, increase in annual enrollment, causes of deaths, and transition to adulthood.
RESULTS:Over 28 years VACHP served 820 patients and families. The program enrolled 5 patients in FY 1980, 65 in 1990, 188 in 2000, and 287 in 2007. CRF was due to chronic lung disease of infancy in 313 patients (38%), congenital anomalies in 124 (15%), central nervous system or neuromuscular disease (CNS/NM) in 377 (46%) and obstructive apnea in 6 (<1%). Most patients had a tracheostomy; in FY 2007 only 19% received non-invasive ventilation. Of the total 820 patients, 270 (34%) were discharged from the program alive off MV, and 239 (29%) remained on the program at the end of FY 2007. Death while on the program occurred in 140 patients (17%); consistently one-fourth of deaths appear due to accidents. Of the CNS/MV patients, 140 (37%) remained on MV at age 21 years. The remaining 31 patients (3.7%) were placed in institutions, moved out of state, or were lost to follow-up.
CONCLUSION:The prevalence of CRF requiring MV at home continues to rise. Mortality remains high. Over one-third of CNS/NM patients become adults still requiring MV.
CLINICAL IMPLICATIONS:We need to plan for increasing numbers and improved care of these children and adults in the community.
DISCLOSURE:John Downes, No Financial Disclosure Information; No Product/Research Disclosure Information