NETWORKS
There are many safety concerns when mobilizing critically ill patients, but studies have shown that early mobilization is safe with less than 1% of patients having adverse events such as falling, tube removal, and blood pressure instability (Bailey et al. Crit Care Med. 2007;35[1]:139). Barriers to mobilization include ICU staffing, deep sedation, ICU culture, and resources. Adherence to therapy is improved with the use of protocols. These should include automated awakening trials and spontaneous breathing trials that allow for decreases in sedation and, therefore, improvement in mobilization performance (Drolet et al. Phys Ther. 2013;93[2]:197).
Early mobilization improves mortality and decreases morbidity. Safe protocols to implement early mobilization have been developed around the country. A decrease in ICU and hospital length of stay, time supported by mechanical ventilation, and cost reduction with mobilization has been shown in multiple studies. A multidisciplinary team approach and a change in ICU culture will help to accomplish this important initiative.
Dr. Mangala Narasimhan, FCCP
Steering Committee Member
Home-Based Mechanical Ventilation and Neuromuscular Disease
Caregivers and training for kids receiving chronic home invasive ventilation
Despite years of experience in discharging pediatric patients receiving chronic home invasive ventilation, their mortality rate remains high, ranging from 21% to 27.5% with unscheduled readmission at 40% (Boroughs et al. Home Health Nurse. 2012;30:103) to 21% (Edwards et al. J Pediatr. 2010;157[6]:955; Kun et al. Pediatr Pulmonol. 2012:47[4]:409). While there were major improvements in technology and newer ventilators, and better community resources, the one key component of our HMV program remains the same – the caregivers. It is a frightening experience for every family to hear that their child needs ventilator support: every discharge is a daunting task and a life-changing experience.
It seems logical to postulate that we might have improved mortality/readmission outcomes if we have competent caregivers. Recent ATS guidelines recommend that “an awake, trained caregiver should be present at all times, and at least two family caregivers should be trained specifically for the child’s care” (Am J Respir Crit Care Med. 2016;193[8]:e16).The need to shore up on emergency care in the home is further supported when we review studies examining pediatric emergency home ventilation practices for both families and licensed home health nurses (Kun et al. Pediatr Pulmonol. 2010;45[3]:270; Kun. Pediatr Pulmonol. 2015;50[7]:691). Understanding and responding to ventilator alarms remains a major challenge for caregivers and home health nurses. Future directions where we can help our caregivers and families improve home emergency care training include simulation video and using the technology of hand-held devices.
Sheila Kun, RN, BSN
Steering Committee Member
Interstitial and Diffuse Lung Disease
New clinic consortium offers help to patients with rare lung diseases
On the heels of the success of the LAM Foundation’s research and clinic networks, several patient advocacy groups for rare lung diseases approached the LAM Foundation about incorporating the care of other rare lung diseases into the same clinic network.
In 2015, the Rare Lung Diseases Consortium was established. It represents a unique collaboration of these patient advocacy groups, the National Institutes of Health, and clinical investigators. It hopes to utilize the Rare Lung Disease Clinic Network as a resource in understanding the clinical course of several rare lung diseases and as a vehicle to initiate funded clinical trials in patients under the care of clinical investigators working at those various sites.
There are currently 29 geographically distributed Rare Lung Disease Clinic Network clinics in the United States, and another 18 clinics distributed internationally. The clinic directors have held two organizational meetings, including the most recent one in May 2016. The initial three research projects are each noninterventional longitudinal disease observational studies. They include “National Pulmonary Alveolar Proteinosis Registry,” “A Longitudinal Study of Hermansky-Pudlak Syndrome,” and “Multicenter International Durability and Safety of Sirolimus in LAM Trial (MIDAS).”
The first Rare Lung Diseases Consortium Conference is scheduled for September 22-25, 2016, in Cincinnati. It will be a combined educational and research conference, with attendance from clinicians, scientists, patient advocacy organizations, and patients with their families. More information, including a list of the 22 diseases initially designated for care and study in the network and a map of all of the clinic network sites, is available at https://www.rarediseasesnetwork.org/cms/rld/.
Dr. Daniel F. Dilling, FCCP
Steering Committee Member
