Abstract:Recent technological advances in respiratory support and monitoring have dramatically enhanced the utility of long-term noninvasive ventilation. Improvements in quality of life and prolonged survival at home have been demonstrated for several common chronic neuromuscular diseases. Many adults with progressive neuromuscular respiratory disease can now comfortably maintain normal ventilation at home to near total respiratory muscle paralysis without needing a tracheostomy. However, current practice in many commu… Show more
“…[25][26][27][28][29][30] Using positive and negative framing can support the clinician in conveying prognostic information 26,30 as well as support patients' prognostic awareness. 29 Patients are often receptive to the dual approach 31 preferring phrases with hope/worry statements when discussing prognostic information. 32 Importantly, consideration of the patient's need for prognostic information is shown by asking if the patient wants to know what the clinician thinks about their illness (physicians) or health (nurses) now and in the future.…”
Objective: To translate and adapt the Serious Illness Conversation Guide for use within the Swedish healthcare setting and examine the validity and acceptability of the Swedish Serious Illness Conversation Guide. Methods: Three rounds of cognitive interviews were conducted (T1-3); patients (T1 n = 11; T2 n = 10; T3 n = 8), family members (T1 n = 5; T2 n = 2; T3 n = 2), and healthcare professionals (T1 n = 6; T2 n = 6; T3 n = 5). The guide was iteratively adapted based on interview feedback, clinical experience, and the literature. The guide was tested on training days with physicians and nurses. Results: The Swedish Serious Illness Conversation Guide was found to be useful in supporting serious illness conversations. Clinicians reported that some questions were emotionally challenging. Explicit questions about prognosis and timing were excluded. Instead, the dual approach of “hoping for the best and preparing for the worst” was used to explore patients’ thoughts about the future. Conclusions: Patients, family members, and healthcare professionals found the Swedish Serious Illness Conversation Guide to be appropriate, sensitive, and responsive to their needs. The Swedish Serious Illness Conversation Guide may facilitate a more health-promoting approach to serious illness conversations. Further research is needed to understand the impact of these conversations on person-centered and goal-concordant care.
“…[25][26][27][28][29][30] Using positive and negative framing can support the clinician in conveying prognostic information 26,30 as well as support patients' prognostic awareness. 29 Patients are often receptive to the dual approach 31 preferring phrases with hope/worry statements when discussing prognostic information. 32 Importantly, consideration of the patient's need for prognostic information is shown by asking if the patient wants to know what the clinician thinks about their illness (physicians) or health (nurses) now and in the future.…”
Objective: To translate and adapt the Serious Illness Conversation Guide for use within the Swedish healthcare setting and examine the validity and acceptability of the Swedish Serious Illness Conversation Guide. Methods: Three rounds of cognitive interviews were conducted (T1-3); patients (T1 n = 11; T2 n = 10; T3 n = 8), family members (T1 n = 5; T2 n = 2; T3 n = 2), and healthcare professionals (T1 n = 6; T2 n = 6; T3 n = 5). The guide was iteratively adapted based on interview feedback, clinical experience, and the literature. The guide was tested on training days with physicians and nurses. Results: The Swedish Serious Illness Conversation Guide was found to be useful in supporting serious illness conversations. Clinicians reported that some questions were emotionally challenging. Explicit questions about prognosis and timing were excluded. Instead, the dual approach of “hoping for the best and preparing for the worst” was used to explore patients’ thoughts about the future. Conclusions: Patients, family members, and healthcare professionals found the Swedish Serious Illness Conversation Guide to be appropriate, sensitive, and responsive to their needs. The Swedish Serious Illness Conversation Guide may facilitate a more health-promoting approach to serious illness conversations. Further research is needed to understand the impact of these conversations on person-centered and goal-concordant care.
“…Furthermore, in line with previous EUROVENT data [1], other chronic lung diseases are treated with HMV. Despite guidelines [3,5] stating that carbon dioxide measurements (arterial blood gas or transcutaneous) are mandated in order to make a diagnosis of nocturnal hypoventilation-with recent data highlighting a targeted reduction in daytime and nocturnal carbon dioxide levels improving the patients' clinical outcome [6,7,[16][17][18][19][20]-the current survey showed that when initiating HMV and prior to discharge post initiation, the SpO 2 monitoring and physiological and ventilator downloaded data were employed more frequently than carbon dioxide measurements. Surprisingly, some respondents reported that they never use carbon dioxide measurements to titrate HMV.…”
Section: Tools To Assess Monitor and Manage Nocturnal Hypoventilationmentioning
confidence: 99%
“…Once established on HMV, the titration of HMV in patients with chronic respiratory failure should target a reduction in daytime PaCO 2 [6][7][8][9] and, therefore, a post initiation overnight assessment of both SpO 2 and TcCO 2 and daytime PaCO 2 are expected. Despite this recommendation, one HMV survey highlighted that clinicians expressed a low level of agreement with the investigations that are required prior to HMV prescription, with SpO 2 as the main driver for the initiation of HMV in chronic obstructive pulmonary disease (COPD) [10].…”
Background: There are limited data reporting diagnostic practices, compared to clinical guidelines, for patients with chronic respiratory failure requiring home mechanical ventilation (HMV). There are no data detailing the current use of downloaded physiological monitoring data in day-to-day clinical practice during initiation and follow up of patients on HMV. This survey reports clinicians’ practices, with a specific focus on the clinical approaches employed to assess, monitor and manage HMV patients. Methods: A web-based international survey was open between 1 January and 31 March 2023. Results: In total, 114 clinicians responded; 84% of the clinicians downloaded the internal physiological ventilator data when initiating and maintaining HMV patients, and 99% of the clinicians followed up with patients within 3 months. Adherence, leak and the apnea-hypopnea index were the three highest rated items. Oxygen saturation was used to support a diagnosis of nocturnal hypoventilation and was preferred over measurements of carbon dioxide. Furthermore, 78% of the clinicians reviewed data for the assessment of patient ventilator asynchrony (PVA), although the confidence reported in identifying certain PVAs was reported as unconfident or extremely unconfident. Conclusions: This survey confirmed that clinical practice varies and often does not follow the current guidelines. Despite PVA being of clinical interest, its clinical relevance was not clear, and further research, education and training are required to improve clinical confidence.
“…• Mechanical ventilation: Assisted ventilation (nocturnal noninvasive ventilation or invasive ventilation on tracheostomy) must be proposed as soon as diurnal and/or nocturnal alveolar hypoventilation appears (defined as pCO2 > 45 mmHg or TcpCO2 > 50 mmHg at night) [89].…”
Becker muscular dystrophy (BMD) is one of the most frequent among neuromuscular diseases, affecting approximately 1 in 18,000 male births. It is linked to a genetic mutation on the X chromosome. In contrast to Duchenne muscular dystrophy, for which improved care and management have changed the prognosis and life expectancy of patients, few guidelines have been published for management of BMD. Many clinicians are inexperienced in managing the complications of this disease. In France, a committee of experts from a wide range of disciplines met in 2019 to establish recommendations, with the goal of improving care of patients with BMD. Here, we present the tools to provide diagnosis of BMD as quickly as possible and for differential diagnoses. Then, we describe the multidisciplinary approach essential for optimum management of BMD. We give recommendations for the initial assessment and follow-up of the neurological, respiratory, cardiac, and orthopedic consequences of males who present with BMD. Finally, we describe the optimal therapeutic management of these complications. We also provide guidance on cardiac management for female carriers.
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