Tele-monitoring in paediatric and young home-ventilated neuromuscular patients: A multicentre case-control trial

2018 ◽  
Vol 25 (7) ◽  
pp. 414-424 ◽  
Author(s):  
Federica Trucco ◽  
Marina Pedemonte ◽  
Fabrizio Racca ◽  
Raffaele Falsaperla ◽  
Catia Romano ◽  
...  

Introduction Tele-monitoring (TM) has proved effective in the home management of adult ventilator-dependent neuromuscular disease (NMD) patients. We aimed to evaluate a 2-year longitudinal multicentre TM trial designed for young ventilated NMD patients in terms of feasibility, home management of exacerbations and caregivers’ burden. Methods The TM trial protocol included patients’ weekly scheduled overnight home-recording of SpO2, heart rate and ventilation and their transmission to each TM centre the following morning. Overnight data were reviewed by non-physicians and calls to families made to assess clinical condition. If clinical conditions (assessed by a scoring system) or overnight parameters worsened, either unscheduled transmissions or calls were activated and managed by non-physicians or medical team according to severity. Hospitalisations were compared with those of TM patients prior to TM start and with those of age-disease-severity-matched controls. Scores from the Caregiver Burden Inventory (CBI) questionnaire pre- and post-TM were compared. Results Forty-eight patients were enrolled, 30 males, median age 16.4 years (interquartile range (IQR) 8.9–22.1), median ventilation/day 10.5 h (IQR 8–16). Exacerbations in TM patients did not differ (59 versus 53; p = 0.15) from controls. Hospitalisations were significantly reduced in TM patients when compared with those prior to TM (11 versus 24, p = 0.04) and to controls (11 versus 21, p = 0.03). Median hospitalisation length was significantly lower in TM patients than controls (6 versus 7 days, p = 0.03 ). Caregivers satisfaction was excellent whereas no significant changes in CBI were seen (32.5 versus 35.5, p = 0.06). Discussion TM was effective in improving the home management of respiratory exacerbations in young ventilated NMD patients and overall well tolerated.

Author(s):  
Vittoria Cuteri ◽  
Giulia Minori ◽  
Gloria Gagliardi ◽  
Fabio Tamburini ◽  
Elisabetta Malaspina ◽  
...  

Abstract Purpose Attention has recently been paid to Clinical Linguistics for the detection and support of clinical conditions. Many works have been published on the “linguistic profile” of various clinical populations, but very few papers have been devoted to linguistic changes in patients with eating disorders. Patients with Anorexia Nervosa (AN) share similar psychological features such as disturbances in self-perceived body image, inflexible and obsessive thinking and anxious or depressive traits. We hypothesize that these characteristics can result in altered linguistic patterns and be detected using the Natural Language Processing tools. Methods We enrolled 51 young participants from December 2019 to February 2020 (age range: 14–18): 17 girls with a clinical diagnosis of AN, and 34 normal-weighted peers, matched by gender, age and educational level. Participants in each group were asked to produce three written texts (around 10–15 lines long). A rich set of linguistic features was extracted from the text samples and the statistical significance in pinpointing the pathological process was measured. Results Comparison between the two groups showed several linguistics indexes as statistically significant, with syntactic reduction as the most relevant trait of AN productions. In particular, the following features emerge as statistically significant in distinguishing AN girls and their normal-weighted peers: the length of the sentences, the complexity of the noun phrase, and the global syntactic complexity. This peculiar pattern of linguistic erosion may be due to the severe metabolic impairment also affecting the central nervous system in AN. Conclusion These preliminary data showed the existence of linguistic parameters as probable linguistic markers of AN. However, the analysis of a bigger cohort, still ongoing, is needed to consolidate this assumption. Level of evidence III Evidence obtained from case–control analytic studies.


2012 ◽  
Vol 19 (6) ◽  
pp. 373-379 ◽  
Author(s):  
Rachael Evans ◽  
Michael Catapano ◽  
Dina Brooks ◽  
Roger Goldstein ◽  
Monica Avendano

BACKGROUND: The trend of patients who are invasively ventilated to prefer home care is one that benefits both the patient and the health care system. However, this assumes a role for patients’ family members to become informal caregivers.OBJECTIVE: To explore the impact of caring for a ventilator-assisted individual on informal caregivers.METHODS: A descriptive design with semistructured caregiver interviews and the Caregiver Burden Inventory were used. Participants were informal caregivers of a family member with a progressive neuromuscular disease on invasive ventilation for at least six months. Transcript coding was performed and regularly reviewed, and recruitment continued until data saturation. Qualitative analysis was based on ‘thematic analysis’.RESULTS: A total of 21 caregivers were interviewed. Five themes developed: a sense of duty; restriction of day-to-day life; physical and emotional burden; training and education; and the need for more paid support. Caregivers described a sense of duty to take care of loved ones, but suffered a significant restriction of their own time with a negative impact on their physical and mental health. The initial transfer home was highlighted as the most stressful part of the process. The Caregiver Burden Inventory scores supported a high level of burden: median 49 (interquartile range 39.5 to 53.0) of a maximum 96.CONCLUSION: Homecare for ventilator-assisted individuals with progressive neuromuscular disease causes significant burden to informal care-givers. Approaches to lessen this burden, such as increased paid care, improved professional support and respite care, may enable home ventilation to be a more sustainable modality of care.


2021 ◽  
pp. 511-518
Author(s):  
Maximiliano A. Hawkes ◽  
Eelco F. M. Wijdicks

Neurologists may meet patients with neuromuscular disease and subsequent respiratory failure in the inpatient setting. Common clinical conditions include Guillain-Barré syndrome (GBS) and myasthenia gravis (MG). Recognition of impending respiratory failure for such patients is of great importance. This chapter describes general features of neuromuscular weakness and neuromuscular respiratory failure. In addition, it reviews the clinically important aspects of GBS, MG, and botulism. Finally, the chapter outlines the clinical symptoms, diagnosis, and treatment of critical illness polyneuropathy, a commonly encountered condition in the medical intensive care unit.


2020 ◽  
Vol 26 ◽  
pp. 100488 ◽  
Author(s):  
Catherine King ◽  
Anwar Mulugeta ◽  
Farhana Nabi ◽  
Robert Walton ◽  
Ang Zhou ◽  
...  

2021 ◽  
Author(s):  
Vittoria Cuteri ◽  
Giulia Minori ◽  
Gloria Gagliardi ◽  
Fabio Tamburini ◽  
Elisabetta Malaspina ◽  
...  

Abstract Purpose: attention has recently been paid to Clinical Linguistics for the detection and support of clinical conditions. Many works have been published on the “linguistic profile” of various clinical populations, but very few papers have been devoted to linguistic changes in patients with eating disorders. Patients with Anorexia Nervosa (AN) share similar psychological features such as disturbances in self-perceived body image, inflexible and obsessive thinking and anxious or depressive traits. We hypothesize that these characteristics can result in altered linguistic patterns and be detected using the Natural Language Processing tools. Methods: we enrolled 51 young participants from December 2019 to February 2020 (age range: 14-18): 17 girls with a clinical diagnosis of AN, and 34 normal weighted peers, matched by gender, age and educational level. Participants in each group were asked to produce three written texts (around 10-15 lines long). A rich set of linguistic features was extracted from the text samples and the statistical significance in pinpointing the pathological process was measured.Results: comparison between the two groups showed several linguistics indexes as statistically significant, with syntactic reduction as the most relevant trait of AN productions. Conclusion: these preliminary data showed the existence of linguistic parameters as probable linguistic markers of AN. However, the analysis of a bigger cohort, still ongoing, is needed to consolidate this assumption.Level of evidence III: evidence obtained from case-control analytic studies.


2021 ◽  
Vol 27 ◽  
pp. 107602962110211
Author(s):  
Adrian Springer ◽  
Ruben Schleberger ◽  
Florian Oyen ◽  
Boris A. Hoffmann ◽  
Stephan Willems ◽  
...  

Left atrial (LA) thrombus formation is the presumed origin of thromboembolic complications in patients with atrial fibrillation (AF). Beyond clinical risk factors, the factors causing formation of LA thrombi are not well known. In this case-control study, we analyzed clinical characteristics and genetic thrombophilia markers (factor V Leiden (FVL), prothrombin G20210A (FIIV), Tyr2561 variant of von Willebrand factor (VWF-V)) in 42 patients with AF and LA thrombus (LAT) and in 68 control patients with AF without LAT (CTR). Patients with LAT had more clinical conditions predisposing to stroke (mean CHA2DS2-VASc-score 3.4 ± 1.5 vs. 1.9 ± 1.4; P < 0.001), a higher LA volume (96 ± 32 vs. 76 ± 21 ml, P = 0.002) and lower LA appendage emptying velocity (0.21 ± 0.11vs. 0.43 ± 0.19 m/s, P < 0.001). Prevalence of FVL, FIIV and VWF-V mutations was not different, but in the subgroup of patients <65 years (y) there was a tendency for a higher incidence of VWF-V with a prevalence of 27% (LAT <65 y) vs. 7% (CTR <65 y, P = 0.066). These findings warrant further investigation of the VWF-V as a risk factor for LA thrombogenesis in younger patients.


2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Carlotta Patrone ◽  
Alberto Cella ◽  
Chiara Martini ◽  
Silvia Pericu ◽  
Rosetta Femia ◽  
...  

Recent studies showed that about the 8% of beds are occupied by patients who experience a delayed hospital discharge (DHD). This is attributed to a delay in the arrangement of home-care assistance or in admission to long-term care facilities. Recently a lot of technologies have been developed to improve caring and monitoring of older people. The aim of this study is to design, implement and test a prototype of a technology based post-hospitalization facility for older people at risk of DHD by using domotics, robotics and wearable sensors for tele-monitoring. A sensorised posthospitalization facility has been built inside the hospital. Thirty-five healthy volunteers aged from 20 to 82 years were recruited. Clinical and functional assessment, i.e. motility index (MI), and human-robot interaction satisfaction were measured. A significant correlation was observed between automatic MI and the Gait Speed, the time sit-to-stand, and the Timed Up and Go test. Domotics, robotics and technology-based telemonitoring may represent a new way to assess patient’s autonomy and functional and clinical conditions in an ecological way, reproducing as much as possible a real life at home.


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