Keeping Patients Active — a one-year follow-up

In the Oct/Nov 2012 issue of Respiratory Therapy, we presented a case report about Mr Dana Jones, an Alpha-1 patient, who was struggling to maintain his Activities of Daily Living (ADLs). The report highlighted the impact of Alpha-1 on Mr Jones’ life and how a new medical device has helped him regain his independence and ability to participate in activities he enjoys. Mr Jones was introduced to the Non Invasive Open Ventilation (NIOV) System (Breathe Technologies, Inc) while participating in a clinical research study at the Rehabilitation Clinical Trials Center, Los Angeles Biomedical Research Institute at HarborUCLA Medical Center in Torrance, CA. The NIOV System is a palm-size, volume assist system that provides pressure and volume via a proprietary nasal pillows interface. Clinical study data has demonstrated the clinical benefits of the NIOV System, including improvements in exercise endurance, oxygen saturation (SpO2) levels and a reduction in dyspnea. 1 Alpha-1 Antitrypsin (AAT) deficiency is a genetic disorder affecting approximately 3.4 million individuals worldwide. 2 This inherited disorder results in COPD, liver disease, and several other conditions. The deficiency of the protein, alpha-1 antitrypsin, can lead to emphysema and presents with respiratory symptoms including shortness of breath, decreased exercise tolerance, and frequent lower respiratory tract infections. Therefore, the general management of AAT deficiency as recommended by the ATS/ERS is similar to that of COPD. 3 Several of the interventions recommended by ATS/ ERS include supplemental oxygen, pulmonary rehabilitation, and consideration for lung transplant. Since the publication of the case study in 2012, Mr Jones has incorporated the NIOV System into his daily activities and has seen a marked improvement in his ability to complete activities of daily living (ADLs). He attributes the positive changes in his lifestyle to the benefits of using the NIOV system to reduce his work of breathing and alleviate the symptoms of dyspnea. The NIOV System allows Mr Jones to tolerate increased activity necessary and to accomplish his daily routines. Mr Jones has been an outspoken advocate of the benefits of maintaining activity even with diminished lung capacity and is working to increase awareness of new technologies in the Alpha-1, COPD, and medical communities. He and his medical team had specific goals in mind for the use of NIOV System. The first goal was to reduce his dyspnea and to increase his exercise endurance allowing him to complete ADLs as well as return to his work and hobbies. By participating in a 4 hours per week pulmonary rehabilitation program, Mr Jones has seen a significant reduction in his dyspnea and a dramatic increase in his exercise endurance. Prior to the intervention with the NIOV System, he was using a pulsed dose oxygen system at a setting of 4. His ability to exercise with that system was limited to 20 minutes of treadmill time at a speed of 1.5 miles per hour. His Borg score was reported at 6-7 during exercise. Using the NIOV System, he is now able to exercise for approximately 30 minutes while on a treadmill reaching speeds of up to 2.2 miles per hour with a reported Borg score of 3-4. Also, using the NIOV System has made it possible for him to initiate and adhere to a resistance training regimen – lifting weights of up to 25 lbs with multiple repetitions – which is important factor in maintaining skeletal muscle function in AAT deficient patients. The second goal in using the NIOV System was to prepare Mr Jones for lung transplant by participating in a pulmonary rehabilitation program. Maintaining pre-transplant health status is an important predictor of morbidity and mortality in lung transplant patients. 4