Hospital-to-Home Transitions in Kids With Chronic Conditions

Laurie Barclay, MD

April 30, 2012

April 30, 2012 — An American Academy of Pediatrics (AAP) clinical report describes how to care for children with chronic medical conditions who are transitioning from hospital to home care. The new guidelines are published online April 30 and in the May 2012 issue of Pediatrics.

"Children and youth with complex medical issues, especially those with technology dependencies, experience frequent and often lengthy hospitalizations," write Ellen Roy Elias, MD, Nancy A. Murphy, MD, and the Council on Children with Disabilities. "Hospital discharges for these children can be a complicated process that requires a deliberate, multistep approach. In addition to successful discharges to home, it is essential that pediatric providers develop and implement an interdisciplinary and coordinated plan of care that addresses the child's ongoing health care needs."

Despite the many challenges involved in home care of children with complex medical needs, appropriate thought and planning can offer the child, family, and clinician a rewarding experience. Goals of the transition care plan are to ensure that each child remains healthy and thriving and to provide optimal medical home and developmental support systems to facilitate ongoing home care and to reduce readmissions.

Transition From Hospital to Home Care

Part I of the report describes the transition from hospital discharge to home care. Specific steps in predischarge planning include the following:

  • Evaluating the child and family. The child must be medically stable for home care. The family should desire to have the child at home, have learned the skills needed to provide care, and have the time, energy, and finances to provide care. The family should already have considered options for palliative care and end-of-life care.

  • Evaluating the home to make sure it is structurally adequate, safe, and accessible, with needed electrical wiring, telephone access, climate control, and clean water supply. The bathroom and living areas must be accessible, with ramps and other needed accommodations. The driveway and road must be accessible, with arrangements for snow removal or other needed services.

  • Evaluating the community and available supports. These may include a community health nurse, home care nurses, physical and occupational therapists, ambulance and emergency medical services, specialty care providers, medical supply vendors, and pharmacist. Other support systems include school/early intervention program, counseling, support groups, and palliative and hospice care when needed.

  • Ordering and arranging for all medications, equipment, and disposable supplies.

  • Arranging follow-up with the child's primary care provider (PCP) and appropriate specialists. These should be given a patient summary, plan for emergency care, and, when appropriate, an advance care plan and out-of-hospital do-not-resuscitate order.

  • Training parents or other caregivers to provide appropriate care, often including nursing support, for the child at home. The clinician should recommend a training schedule and period of trial home care with supervision.

  • Arranging home care nursing and developmental/educational services. Nursing care coverage should be outlined, with alternative plans in place if nursing care is not available. Ongoing educational needs should be addressed through arrangements with school or preschool programs.

  • Finding home care agencies for supplies and equipment.

  • Verifying adequate insurance coverage and/or pursuing alternative or additional coverage and benefits, such as the Medicaid waiver program and Supplemental Security Income.

"Children with complex medical and developmental issues comprise a significant percentage of hospitalized pediatric patients and are being discharged to home with an ever-expanding range of complex medical and technology dependencies," the report authors write. "Medical homes for children with complex home care needs must coordinate a team of providers toward the overarching goal of optimizing each child's health, development, and well-being. Pediatricians must understand the complexities of the child's underlying conditions, including ongoing medical needs, prognosis and end-of-life care, family needs, and available community resources."

Maintaining Optimal Home Care

Part II of the report describes needed steps to maintain optimal home care for the child. These include:

  • Support by the PCP to meet the needs of the child and family, in light of medical and developmental issues and the underlying diagnoses.

  • Ensuring optimal nutrition based on feeding tolerance and pertinent conditions, such as gastroesophageal reflux disease, dysmotility, or constipation. Consultations with dietitians and gastroenterologists may be appropriate.

  • Managing elimination disorders using bowel- and bladder-emptying regimens and training programs.

  • Provision by the PCP of a comfortable and safe medical home for the patient. To address special healthcare needs and technology dependencies, the child needs separate visits for chronic condition management and well-child care, or visits that are longer than usually scheduled for well children.

  • Updating medication lists in the medical home and for the caregivers, with clear instructions for dosing and administration.

  • Providing appropriate consultations, such as a pediatric pulmonologist for children with moderate to severe respiratory impairments.

  • Ensuring preventive care, including pneumococcal and annual influenza vaccines, for at-risk children and their families.

  • Monitoring skin condition and preventing decubitus ulcers in children with reduced mobility.

  • Diagnosing and treating urinary tract infections, dental abscesses, pathologic fractures, or other complications.

  • Detecting device-related complications in children with pacemakers, ventriculoperitoneal shunts, intravascular catheters, colostomies, or other devices.

"Medical homes may need to adapt routine practices and individualize their approaches to best orchestrate the multifaceted needs of children and youth with special health care needs, their parents and families, and health care systems," the report authors conclude. "A systematic approach to pediatric care with explicit care coordination, family-centered care, and advanced planning ensures the best outcomes and most rewarding experiences for children and youth with special health care needs, their families, and providers."

Pediatrics. 2012;129:996-1005. Abstract

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