Noninvasive positive pressure home ventilation in restrictive disorders: outcome and impact on health-related quality of life

Nauffal, Dolores; Doménech, Rosalía; García, Miguel Ángel Martínez; Compte, L.; Macián, V.; Perpiñá, M.

doi:10.1053/rmed.2002.1347

Cited by 44 publications

(43 citation statements)

References 20 publications

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“…Similarly, Jeppesen et al (9) showed longer survival with noninvasive ventilator support, with the 15-year postdiagnosis survival increasing from 51.7% to 76.5% and 20-year survival increasing from 41.3% to 66.6%. Positive changes in psychosocial functioning and mental well-being have been reported (6,10).…”

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confidence: 98%

“…The failure often occurs during otherwise benign upper respiratory tract infections. Bronchial mucous plugging, and progressive weakening and fatigue of inspiratory and expiratory muscles compromise the already severe pulmonary dysfunction further (3)(4)(5)(6).…”

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confidence: 99%

“…In some settings, health professionals are taking a proactive management approach to breathing support options and offering noninvasive positive pressure ventilation to clients with early signs of hypoventilation (4); using breath stacking to maintain and increase vital capacity; teaching cough assistance; and working on secretion management (6,7). The benefits of a proactive approach seem to be significant.…”

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confidence: 99%

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Communication regarding breathing support options for youth with Duchenne muscular dystrophy

Ferguson

Wright

Carter

et al. 2011

Paediatrics &Amp; Child Health

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T wenty-year-old Mitchell (name changed) appeared in front of his mother one morning and mouthed to her, "I can't breathe". He had to repeat himself because she did not initially understand.When she realized what was happening, she called 911 and then began cardiopulmonary resuscitation. He was taken to the nearest intensive care unit where he underwent a tracheostomy and was put on a ventilator. Mitchell and his mother were involved in their first discussion about ventilation that morning. They were told that it would be permanent. We do not know the specifics of their discussion, but Mitchell's mother reported that his response was a request to 'pull the plug', and that is how his life ended.One of the authors had known Mitchell since he was four years of age; had watched this hyperactive little boy run and stumble, then struggle to his feet; had watched his mother carry him up three flights of stairs to their tiny apartment; and had watched him 'graduate' from a manual wheelchair to a powerchair with tilt.Through it all, he had been amazingly healthy, so his quick death was, and remains, a shock. The process was not questioned at that time, but we did gradually came to question it and began a search for answers. The literature shows that breathing support options can enable some individuals to regain a measure of control in their lives, which have been extended meaningfully -for them and for those who love them.The progression of Duchenne muscular dystrophy (DMD) is predictable. The timeframe varies, but it progresses for others just as it did for Mitchell. Although mobility changes are very apparent to the children and their families, the weakening of the inspiratory muscles and the abdominals, which provide the power for a productive cough, is not as apparent. This weakening happens more insidiously because as boys become less active, they do not stress their cardiovascular and respiratory systems as they once did. Those who manage the health of these boys must be aware of the potential issues in facilitating access BaCkgROunD: Ventilators for home use, manual and mechanically assisted coughing techniques, and the services of in-home respiratory therapists are options for youth with Duchenne muscular dystrophy (DMD). Evidence supports the use of these modalities, but there seems to be few youth who are receiving these therapies. Is there a knowledge transfer issue? Is there a lack of resources? What is the best way to discuss the issues? What do youth and parents want? OBJECTIVE: To determine practices, attitudes and beliefs regarding the timing and content of client/family communication related to ventilatory support decisions for individuals with DMD. METHODs: A questionnaire was sent to all 19 children's treatment centres in Ontario. The lead clinician responded on behalf of his or her centre. Another questionnaire was given to 11 families who attended a parent support meeting. REsulTs: Respondents from the treatment centres who provide services for youth with DMD indicated that there are resources in te...

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Communication regarding breathing support options for youth with Duchenne muscular dystrophy

Ferguson

Wright

Carter

et al. 2011

Paediatrics &Amp; Child Health

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“…After three months of NIV in KS patients, Ellis et al [26] have found that the length and quality of REM sleep improved, while oxygenation increased and transcutaneous carbon dioxide tension decreased. After NIV, daytime arterial blood gas results improvement and hospitalisation rate decrease were observed as well [26,27]. However, NIV does not improve spirometry parameters [27].…”

Section: Treatment Of Chronic Respiratory Failure and Sleep Disordersmentioning

confidence: 91%

“…After NIV, daytime arterial blood gas results improvement and hospitalisation rate decrease were observed as well [26,27]. However, NIV does not improve spirometry parameters [27]. After termination of NIV for a few nights, patients again complained about sleepiness, breathlessness during sleep due to the results of the tests, which were inappropriate.…”

Section: Treatment Of Chronic Respiratory Failure and Sleep Disordersmentioning

confidence: 98%

Kyphoscoliosis—What Can We Do for Respiration besides NIV?

Pajdziński

Młynarczyk

Miłkowska-Dymanowska

et al. 2017

Advances in Respiratory Medicine

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Kyphoscoliosis (KS) is a significant clinical problem with no precise guidelines for management, especially concerning respiratory pathology. No exhaustive systematic review has yet been performed. The aim was to conduct a systematic review of available data concerning the pathophysiology and treatment of kyphoscoliosis. An electronic systematic search compliant with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines was conducted. The Pubmed database was examined and the search was updated to November 10, 2016. In total, 188 articles were screened, and 52 full text articles were then assessed for eligibility. As 24 of them met exclusion criteria, only 28 articles were further analysed. These articles were published in 18 journals from 1959 to 2015, with 25 being original studies, and one randomised control trial. The total corpus included 18 prospective studies, 7 retrospective studies and 3 case reports. KS is a significant complex, multidisciplinary clinical problem. The heterogeneous nature of the majority of published studies prevents unequivocal conclusions being drawn. Despite a great progress in knowledge about the respiratory system functioning and pathology in KS, the treatment seems to be not yet quite satisfactory. Therefore, there is a strong need for large prospective studies and unified clinical guidelines on the management of this group of patients.

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