Background: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder leading to chronic respiratory failure. Few studies have investigated ALS-related dyspnoea, and none have characterised the emotional distress it inflicts. We hypothesised that ALS-related dyspnoea has a strong affective component that relates to quality of life. Methods: This prospective, observational study was conducted in 41 ALS patients > 18 with chronic respiratory failure and an indication for noninvasive ventilation (NIV). Dyspnoea was assessed using the Multidimensional Dyspnea Profile (MDP) at baseline and 1 month after NIV initiation. Correlations between scores evaluating the sensory and affective dimensions of dyspnoea and other patient-reported outcomes and pulmonary function tests were analysed. Results: Dyspnoea was described as intense (median [IQR] score on a 0-10 scale: 6.5 [4.0-7.5]). The sensory dimension of dyspnoea was polymorphic, but «air hunger» was the most common (48.8%) and the most intense (6 [4-8]) sensory descriptor. In the affective domain, most patients rated «anxious» (85.4%) and «afraid» (60.9%) above 0. The MDP affective dimension correlated significantly with other patient-reported outcomes, with the strongest correlation being between MDP «anxious» and the anxiety component of the Hospital Anxiety Depression Scale (Pearson's R = 0.70). One month after initiation of NIV, dyspnoea during unassisted breathing was described in virtually the same terms, particularly the affective dimension. Discussion: ALS-related dyspnoea is intense and fear-provoking, persists during unassisted breathing between NIV sessions, and significantly impacts health-related quality of life. This study highlights the need for increased awareness of and research into ALS-related dyspnoea.

BackgroundContinuous Positive Airway Pressure (CPAP) remains the reference treatment for moderate to severe forms of the Sleep Apnea/Hypopnea Syndrome (SAHS). Compliance to the treatment appears to be a key factor to improving health status of these patients.MethodsWe conducted a multicenter, prospective, randomized, controlled, parallel group trial of standard support completed or not within 3 months of coaching sessions for newly diagnosed SAHS patients starting CPAP therapy. This study has been recorded by AFSSAPS with the RCB number: 2009-A01127-50 and received favourably by the Human Studies Committee in France. The coaching session consisted of 5 sessions of telephone-based counselling by competent staff. The primary outcome was the proportion of patients using CPAP more than 3 h per night for 4 months; the secondary outcome was mean hours of CPAP usage in the 2 groups.ResultsThree hundred and seventy-nine patients fulfilled the inclusion criteria and were randomized. The percentage of patients using CPAP more than 3 h per night for 4 months was 65 % for the standard support group and 75 % for the coached group. This difference reached a statistical significance (χ2 = 3.97). The mean CPAP usage was increased in the coached group versus standard group. A difference of 26 min was observed (4 h34+/−2 h17 and 4 h08+/−2 h25 respectively, p = 0.04).ConclusionThis study shows that SAHS patients who benefit from phone coaching are statistically more compliant to CPAP than a standard support group is. A simple phone coaching procedure based on knowledge of the disease and reinforcement messages about treatment benefits helps to improve CPAP adherence in SAHS patients.Trial registrationNCT02435355

BackgroundUntreated Obstructive Sleep Apnea Hypnopnea Syndrome (OSAHS) is a known factor contributing to resistant hypertension (HT). Continuous Positive Airways Pressure (CPAP) is effective to decrease blood pressure (BP) in severe OSAHS. In our clinical practice, hypertensive patients seem less symptomatic with regard to severe OSAHS than normotensive patients, leading to a risk of underdiagnosis when OSAHS is screened with Epworth Sleepiness Scale (ESS). We aimed to confirm that severe OSAHS is less symptomatic in HT patients than normotensive patients using ESS.MethodsWe retrospectively compared two age, gender-matched groups - 100 hypertensive patients and 100 normotensive patients - with severe OSAHS defined as an AHI (Apnea Hypopnea Index) ≥30. OSAHS was considered symptomatic when ESS > 10.ResultsThe two groups of patients did not differ significantly with respect to main characteristics including Body Mass Index (BMI), AHI and ODI (Oxygen Desaturation Index). Systolic and Diastolic BP were higher in HT patients (p < 0.01). HT patients were less symptomatic with regard to severe OSAHS with a lower ESS (10.0 vs 11.9, p < 0.01), and a lower number of patients with an ESS > 10 (30% vs 58%, p < 0.01). In multivariable analysis adjusted on age, gender, Obesity, Systolic BP, Diastolic BP, AHI and ADO, normotension was significantly associated with symptomatic OSAHS (OR = 2.83, [1.298–6.192], p < 0.01).ConclusionsIn our study on patients with severe OSAHS, ESS score was lower in hypertensive patients than in normotensive patients. This discrepancy may lead to an underestimation of severe OSAHS in hypertensive patients.

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