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University of Medicine and Dentistry of New Jersey-New Jersey Medical School, Newark, NJ
Correspondence to: John R. Bach, MD, FCCP, 150 Bergen St, Newark, NJ 07103-2406; e-mail: bachjr{at}umdnj.edu
To the Editor
I read with discouragement the article by Markstrom et al (November 2002)1 comparing the quality of life for patients with neuromuscular disease treated by noninvasive ventilation (NIV) vs that for patients who have tracheostomies. It is discouraging that an article could be published that equates NIV only with mask ventilation; that does not indicate pulmonary function or the extent of the need for ventilatory support and, thus, makes no effort to match cohort groups; that does not indicate the type of ventilator used, or settings, indications, or approaches; that ignores the vital need for mouthpiece ventilation, or even pneumobelt use via portable volume-cycled ventilators, for patients with advanced disease who require NIV continuously; that makes no mention of manually or mechanically assisted coughing methods or their vital need during intercurrent chest infections; and then concludes that tracheostomies are considered desirable by many postpolio patients and postkyphoscoliosis patients.
It is obvious that patients who are not trained in air stacking,2 effective and convenient daytime aid methods,3 or mechanically assisted coughing4 would feel more secure having tracheostomy tubes for disease management during intercurrent infections. Indeed, patients who are limited to mask ventilation, quite possibly at low pressure spans or inadequate daytime volumes, might feel better with a tracheostomy tube, even as a nocturnal aid. We have already reported on > 100 patients who used both NIV and tracheostomy ventilation for continuous ventilatory support for ≥ 1 month, and only a few of those changing from NIV to tracheostomy ventilation who were never taught mouthpiece ventilation, air stacking, or mechanically assisted coughing considered the tracheostomy tube to be more desirable.5 Furthermore, there are cohort-matched studies6 7 of the quality of life comparing patients using the noninvasive and tracheostomy methods that the authors never mentioned. I suggest that the authors obtain a recent book on noninvasive ventilation and learn that there is more to NIV than mask-only ventilation.8
References
Respiratory Unit, Karolinska Institute Danderyd Hospital, Stockholm, Sweden
Correspondence to: Agneta Markstrom, MD, PhD, Respiratory Unit, Karolinska Institute Danderyd Hospital (KIDS), 18288 Stockholm, Sweden; e-mail: agneta.markstrom{at}ane.ds.sll.se
To the Editor
The comments on our article published in CHEST, about home mechanical ventilation (HMV), are very refreshing as the results of the study elucidated those same questions by us. However, the main purpose of the study was to assess quality of life (QoL) of patients receiving HMV. The study was retrospective, and the purpose was never to relate QoL with lung mechanics, different modes of mechanical ventilation, or blood gases. Several studies1 2 3 have shown that QoL is not related to such specific measurable values, but is related instead to the patient’s coping ability. Because treatment with HMV has increased in Sweden, we wanted to see how our patients with different diagnoses perceived their QoL using HMV. We wanted also to elucidate how our patients with chronic respiratory insufficiency were initiated and treated during a period of 20 years. The unique knowledge of our clinic in making individually fitted tracheal cannulas should be kept in mind. These patients were never able to choose one treatment or another, as most of them probably received the tracheostomy as an acute lifesaving treatment, and they feel secure with this. We disagree when you say that we have equated noninvasive ventilation (NIV) only with mask ventilation. The results shows that ventilation by tracheostomy also provides a good QoL. We conclude that the patients treated with both NIV and invasive HMV reported a good QoL.
As a result of this study, we have started to look into the questions raised in Dr. Bach’s comments. We hope to publish the result this year, but we still must remember that this is a retrospective study. I can only apologize for having forgotten your references. To sum up, our article is not a comparison study of which method is best for ventilation of patients with chronic respiratory insufficiency. The results show that, despite severe physical limitations, patients receiving HMV perceived good QoL. It is mandatory to optimize both treatment with tracheostomy with good, individually fitted cannulas and compliance during NIV. We consider it a strength to be able to offer both treatment options for patients with chronic respiratory insufficiency. This is a very important message. Because treatment with HMV has increased in Sweden, it is important to show that long-time survival is improved by HMV, and the QoL is also good.
I am fully aware that NIV needs manually or mechanically assisted coughing methods. For the moment, we are preparing a prospective study where vital capacity will be compared before and after glossopharyngeal breathing in patients receiving ventilation both by NIV and by tracheostomy.
References
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