RT Journal Article
SR Electronic
T1 Uptake of NIV treatment in MND is dependent upon caregiver variables
JF European Respiratory Journal
JO Eur Respir J
FD European Respiratory Society
SP P2070
VO 40
IS Suppl 56
A1 Rosanna Cousins
A1 HIkari Ando
A1 Carolyn Young
A1 Biswajit Chakrabarti
A1 Robert Angus
YR 2012
UL http://erj.ersjournals.com/content/40/Suppl_56/P2070.abstract
AB There is robust evidence that NIV relieves respiratory symptoms and improves quality of life in MND. Nevertheless, about a third of those who would benefit from NIV decline the treatment. It is important to understand why the most effective treatment available for MND patients [1] is refused. To investigate this phenomenon, we undertook a cross-sectional quantitative analysis of 27 patient and caregiver dyads offered ventilatory support based on physiological markers, including forced vital capacity and nocturnal pulse oximetry. The analyses indicated that there were no differences between the patients who went on to accept NIV treatment (n=17) and those who declined (n=10) in terms of age, sex, MND symptomatology (ALS-FRS-R, ALSAQ-40, MND Dyspnoea Rating Scale, daytime sleepiness) and psychological measures (hopelessness, anxiety and depression). The similarity of the scores in the two groups is such that we are confident that we do not simply have a power issue. In view of assertions that uptake of NIV treatment increases caregiver burden, which suggests caregiver input in NIV treatment, we also analysed caregiving variables. There were no differences in general physical or mental health but caregivers who supported NIV treatment were significantly more emotionally stable and less anxious, and in terms of coping style more resilient, more committed and more in control. A regression analysis forcing MND symptoms to enter before caregiving variables still indicated that resilience: commitment alone explained 24% of the variance. We will discuss these findings, and implications for clinicians.1 Heiman-Patterson TD, Millar RG. NIPPV: A treatment for ALS whose time has come. Neurol 2006; 67: 736-7.