National survey of health services provided by pediatric post-acute care facilities in the US

Article type: Research Article

Authors: Berry, Jay G.^{a; b; *} | Casto, Elizabeth^a | Dumas, Helene^c | O’Brien, Jane^c | Steinhorn, David^d | Marks, Michelle^{e; f} | Traul, Christine^f | Wilson, Karen^g | Simpser, Edwin^h

Affiliations: [a] Division of General Pediatrics, Boston Children’s Hospital, Boston, MA, USA | [b] Department of Pediatrics, Harvard Medical School, Boston, MA, USA | [c] Franciscan Children’s Hospital, Boston, MA, USA | [d] The Elizabeth Hospice, Escondido, CA, USA | [e] Cleveland Clinic Lerner College of Medicine, Cleveland, OH, USA | [f] Cleveland Clinic Children’s Hospital for Rehabilitation, Cleveland, OH, USA | [g] Division of General Pediatrics, Icahn School of Medicine at Mount Sinai, New York, NY, USA | [h] St. Mary’s Hospital for Children, Bayside, NY, USA

Correspondence: [*] Corresponding author: Jay G. Berry, MD, MPH, Complex Care, Division of General Pediatrics, Boston Children’s Hospital, Harvard Medical School, 300 Longwood Ave., Boston, MA 02115, USA. Tel.: +1 8572183594; E-mail: Jay.Berry@childrens.harvard.edu.

Abstract: PURPOSE:The need for pediatric post-acute facility care (PAC) is growing due to technological advances that extend the lives of many children, especially those with complex medical needs. The objectives were to describe [1] the types and settings of PAC; [2] the clinical characteristics of the pediatric patients requiring PAC; and [3] perceptions of PAC care delivery by clinical staff. METHODS:An online survey was administered between 6/2018 to 12/2018 to administrative leaders in PAC facilities that have licensed beds for children and who were active members of the Pediatric Complex Care Association. Survey topics included types of health services provided; pediatric patient characteristics; clinical personnel characteristics; and perceptions of pediatric PAC health care delivery. RESULTS:Leaders from 26 (54%) PAC facilities in 16 U.S. states completed the survey. Fifty-four percent identified as skilled nursing facility/long-term care, 19% intermediate care facilities, 15% respite and medical group homes, and 12% post-acute rehabilitation facilities. Sixty-nine percent of facilities had a significant increase in the medical complexity of patients over the past 10 years. Most reported capability to care for children with tracheostomy/invasive ventilation (100%), gastrostomy tubes (96%), intrathecal baclofen pump (89%), non-invasive positive pressure ventilation (85%), and other medical technology. Most facilities (72%) turned away patients for admission due to bed unavailability occasionally or always. Most facilities (62%) reported that insurance reimbursement to cover the cost of providing PAC to children was not acceptable, and most reported that it was difficult to hire clinical staff (77%) and retain staff (58%). CONCLUSION:PAC in the U.S. is provided to an increasingly medically-complex population of children. There is a critical need to investigate financially-viable solutions for PAC facilities to meet the patient demands for their services and to sufficiently reimburse and retain staff for the challenging and important care that they provide.

Keywords: Post-acute care, subacute, pediatrics, children with medical complexity

DOI: 10.3233/PRM-201519

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 15, no. 3, pp. 417-424, 2022