Comprehensive Care for Technology Dependent Children

Children’s Hospital at Montefiore (CHM), a tertiary care system located in a busy urban environment, established a Technology Dependent Children (TDC) program in 2007. The program addressed the deficiency of an education program that would require children with tracheotomy and/or mechanical ventilation to be routinely sent to rehabilitation institutions prior to being discharged home. In addition, the program was designed to provide comprehensive care to these children by coordinating their respiratory needs with other relevant services.


Training and Preparing for Discharge
The TDC program involves a multidisciplinary team, consisting of a respiratory therapist (RT), pediatric pulmonologist, pediatric nurse practitioner, otolaryngologist and social worker who are all specialized in the care of technology dependent children. The respiratory therapist and pulmonologist manage the program, which functions at both inpatient and outpatient locations and offers comprehensive tracheotomy teaching in accordance with the 2000 American Thoracic Society recommendations. The tracheotomy education plan is initiated and driven by the RT and lasts for an average of 14 days with adjustments according to family’s previous knowledge of tracheotomy, emotional or intellectual barriers and complexity of medical needs.

A minimum of two adult family members, chosen by the parents or guardians, must complete the tracheotomy education program before discharge. Prior to discharge, families are asked to spend 24 hours independently caring for their child in the hospital to demonstrate to the healthcare team that they can competently care for their child as well as deal with daily minor emergencies. Additional teaching for home equipment, including mechanical ventilation, is given by the home care company’s respiratory therapist for a total of 10 days in coordination with the hospital team. This training consists of five days of inpatient training and five days of home training after discharge.

Home care nursing is arranged by the team’s social worker before discharge. The social worker, together with the RT and the inpatient multidisciplinary team, also assists in dealing with social barriers to discharge. Our social worker is a full time support person who promotes family-centered care through counseling, resource coordination and advocacy. She is also available to the family during hospitalizations and outpatient TDC visits (patients are followed up at the outpatient facility within one month of discharge), and addresses issues related to family coping with chronic illness. She also facilitates clear communication between the family and the TDC team to enable healthcare planning, decision making and problem solving with outside agencies such as insurance companies, entitlement programs and school systems.


Outpatient Care
CHM’s TDC patients are typically seen every three to four months on an ongoing basis, but more frequent follow-up may be dictated by the child’s medical condition. Outpatient evaluation includes a comprehensive history, physical examination, assessment of growth and measurements of gas exchange. These visits are multi-disciplinary and involve the pulmonary physician, RT, nurse practitioner and social worker. In order to limit patients’ ER visits, families receive a formal plan to avail of the respiratory therapist, nurse practitioner and pulmonologist input depending on the severity of the patient’s needs. A pulmonologist is available for telephone support at all times. In case of illness, the children are triaged over the telephone and seen in the clinic the same day or the next, if necessary, and a record of each outpatient visit is sent to the child’s primary care physician. If patients are admitted, the team assists the inpatient providers in coordinating care, liaising with the family and discharge planning.

Airway management of TDC patients is coordinated with the pediatric otolaryngologists and a pediatric cardiothoracic surgeon. This airway team has performed several complex airway procedures including airway reconstruction, airway laser surgeries and the placement of airway stents resulting in successful decannulation of several children’s tracheotomies. Complex airway cases are discussed in monthly airway meetings which may include additional pediatric airway specialists such as pediatric anesthesiologists, pediatric critical care specialists and pediatric radiologists with all participants drawing on their particular capabilities to devise the best treatment plan possible.

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We also perform surveillance bronchoscopies with the TDC pulmonologist and otolaryngologist on all the TDC children with the RT present to assist with ventilation and tracheotomy tube issues. These bronchoscopies assess the presence of granulation tissue, tracheomalacia, airway stenosis, airways cysts and other relevant issues, such as the need to downsize or upsize the tracheotomy. The team manages tracheotomy decannulation on the basis of clinical information with bronchoscopic evaluation and sleep studies to determine the readiness of the patient for decannulation and confirm the adequacy of air exchange after decannulation.

Quality Assurance and Performance Improvement (QAPI) initiatives have been incorporated in the TDC program to improve health care outcomes and reduce health care utilization. The Influenza QAPI initiative aims to ensure that all TDC children have received or been offered timely annual flu vaccination. All active patients’ families are contacted to find out if they have been vaccinated when influenza vaccine is available and patients are brought in for vaccination if they have not received the vaccine. With this initiative in place 98.9% of the TDC children have been inoculated, and we confirm pneumococcal vaccination status on an ongoing basis. In addition, we reach out to the families when flu season starts to inform them regarding flu testing and the importance of starting anti-viral medication within 48 hours to reduce duration and severity of illness. We are also currently developing an appropriate storm emergency plan in the wake of hurricane Sandy in conjunction with the home care companies and state agencies.


Results
Since the initiation of the TDC program, the Children’s Hospital at Montefiore’s patients’ ER visits have decreased, the number of direct home discharges has increased and patient satisfaction has improved. Moreover, provision of specialty care and advocacy has been streamlined and has become more efficient. In recognition of the care delivered by the program, the hospital has incorporated an educational curriculum on tracheotomy care that is administered by the program’s RT for the hospital’s pediatric nurses and our program’s RT has a developed protocol to standardize the care for children with tracheotomies within the institution. We hope that the efficiencies developed by the program will prepare us to manage a greater complexity of patients in a healthcare environment that is likely to face financial cutbacks in the future.

Esther Matta-Arroyo, RRT, is supervisor of the Pediatric Pulmonary Lab and manager of Technology Dependent Children in the Division of Respiratory and Sleep Medicine, Children’s Hospital at Montefiore.


References:

  1. Sherman JM, Davis S, Albamonte-Petrick S, Chatburn RL, Fitton C, Green C, Johnston J, Lyrene RK, Myer C, 3rd, Othersen HB, Wood R, Zach M, Zander J, Zinman R. Care of the child with a chronic tracheostomy. This official statement of the American Thoracic Society was adopted by the ATS Board of Directors, July 1999. Am J Respir Crit Care Med 2000;161(1):297-308.
  2. Tearl DK, Hertzog JH. Home discharge of technology-dependent children: evaluation of a respiratory-therapist driven family education program. Respir Care 2007;52(2):171-176.

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