BACKGROUND: Understanding of the consequences of a neuromuscular disease (NMD) can improve when a valid sample of disease-specific categories based on the International Classification of Functioning, Disabilities, and Health (ICF) is available.OBJECTIVE: To examine the content validity of the initial ICF Core Set for neuromuscular diseases (NMDs). The initial ICF Core Set was developed for three chronic neurological diseases.DESIGN: A qualitative method.METHODS: To examine the content validity of the initial ICF Core Set for NMD, concepts in established disease-specific health-related Quality of Life Questionnaires (HRQOL) were compared with ICF categories. Next, the selected ICF categories were linked to the ICF categories in the initial ICF Core Set.RESULTS: All concepts in the HRQOL questionnaires, except one body function concept, were covered by the initial ICF Core Set. However, the NMD Core Set reflects a broader scope concerning health problems than the concepts in the HRQOL questionnaires do, especially concerning the "Participation" and "Environmental Factors" components.CONCLUSION: The NMD Core Set, as well as a measurement based on this Core Set, can contribute to a better understanding of the consequences of NMDs and can also serve as a basis for clinical practice, research, social security systems, and educational programs.CLINICAL REHABILITATION IMPACT: The newly developed NMD Core Set can be a basis for enhancing the development of rehabilitation interventions and improving overall health care for patients with a NMD.
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The aim of this analysis was to compare ventilation management and outcomes in invasively ventilated patients with acute hypoxemic respiratory failure due to coronavirus disease 2019 (COVID-19) between the first and second wave in the Netherlands. This is a post hoc analysis of two nationwide observational COVID-19 studies conducted in quick succession. The primary endpoint was ventilation management. Secondary endpoints were tracheostomy use, duration of ventilation, intensive care unit (ICU) and hospital length of stay (LOS), and mortality. We used propensity score matching to control for observed confounding factors. This analysis included 1122 patients from the first and 568 patients from the second wave. Patients in the second wave were sicker, had more comorbidities, and had worse oxygenation parameters. They were ventilated with lower positive end-expiratory pressure and higher fraction inspired oxygen, had a lower oxygen saturation, received neuromuscular blockade more often, and were less often tracheostomized. Duration of ventilation was shorter, but mortality rates were similar. After matching, the fraction of inspired oxygen was lower in the second wave. In patients with acute hypoxemic respiratory failure due to COVID-19, aspects of respiratory care and outcomes rapidly changed over the successive waves.
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INTRODUCTION: Mechanical Insufflation-Exsufflation (MI-E) is used as an airway clearance intervention in primary care (home ventilation), long-term care (prolonged rehabilitation after intensive care, neuromuscular diseases, and spinal cord injury), and increasingly in acute care in intensive care units (ICU).AIM: We sought to develop in-depth understanding of factors influencing decision-making processes of health care professionals regarding initiation, escalation, de-escalation, and discontinuation of MI-E for invasively ventilated patients including perceived barriers and facilitators to use.METHODS: We conducted focus groups (3 in the Netherlands; 1 with participants from four European countries) with clinicians representing the ICU interprofessional team and with variable experience of MI-E. The semi-structured interview guide was informed by the Theoretical Domains Framework (TDF). Two researchers independently coded data for directed content analysis using codes developed from the TDF.RESULTS: A purposive sample of 35 health care professionals participated. Experience varied from infrequent to several years of frequent MI-E use in different patient populations. We identified four main themes: (1) knowledge; (2) beliefs; (3) clinical decision-making; and (4) future adoption.CONCLUSION: Interprofessional knowledge and expertise of MI-E in invasively ventilated patients is limited due to minimal available evidence and adoption. Participants believed MI-E a potentially useful intervention for airway clearance and inclusion in weaning protocols when more evidence is available.RELEVANCE TO CLINICAL PRACTICE: This focus group study provides an overview of current practice, knowledge and expertise, and barriers and facilitators to using MI-E in mechanically ventilated patients. From these data, it is evident there is a need to develop further clinical expertise and evidence of efficacy to further understand the role of MI-E as an airway clearance technique for ventilated patients.
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