Lung Foundation Netherlands

<bold>Introduction:</bold> Comorbidities often occur in severe asthma (SA) and negatively impact patient outcomes. Multimorbidity (MM) refers to the presence of multiple co-existing conditions but is often unappreciated. It is unclear how resources to address MM in SA, and physician perspectives of MM in SA, differ between SA specialists (SAS) and general respiratory physicians (GRP). <bold>Aim:</bold> To compare available multidisciplinary team (MDT) resources and physician perspectives on MM in SA between SAS and GRP. <bold>Methods:</bold> An online survey was circulated within SHARP to assess available resources to address MM and physician perspectives about MM in SA across Europe. <bold>Results:</bold> 495 responses were recorded from 25 European countries – 48% SAS, 52% GRP. SA patient exposure was greater for SAS, 20% of whom saw > 60 patients/month. Significantly more SAS (59%) than GRP (24%) had a Specialist MDT. SAS had better access to specialist nurses, physiotherapists and speech & language therapists within their MDT and greater referral access to external specialists. Comorbidities were more often routinely assessed by SAS (75%) than GRP (52%) and SAS more often stated that these heavily influenced their SA practice (80% v 56%). More SAS considered MM to an extremely high degree in SA (38% v 20%) and reported that MM heavily impacted health (90% v 77%) and SA (85% v 73%) outcomes. While more SAS felt sufficiently experienced to manage MM (70%v 43%), both SAS and GRP reported high MM training needs. <bold>Conclusion:</bold> SAS have better awareness of MM in SA and more resources to manage it. However, there are key gaps in MDT resources and training to manage MM optimally for both SAS and GRP.

Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. Family members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it. The group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.

BackgroundHuntington’s disease (HD) has a poor prognosis. For HD patients in the Netherlands, one way of dealing with their poor prognosis is by drawing up an advance euthanasia directive (AED). Little is known about the perspectives of HD patients on their AED.AimTo gain insight into patients’ views on and attitudes towards their AED, and changes over time.MethodsA longitudinal qualitative interview study using 1 to 6 semi-structured interviews over a period of maximum three years. Nine HD patients (5 outpatient clinic, 3 day care, 1 assisted living facility) who either had an AED or were thinking about drawing it up participated in this study.ResultsWe identified two themes that characterize patients’ perspectives on their AEDs: (1) general character of the AED; (2) uncertainty around their AED. Ad (1) The conditions that the participants described in their AED were generally not very specific for the person. Mostly they were general notions of unbearable suffering. Familiarity with HD in the family could play a role in drawing up an AED. Ad (2) Participants generally were aware of the tentative character of their AED and could have doubts concerning their own willingness or the willingness of others in the future. Sometimes these doubts were so great, that it prevented them from drawing up an AED. However, patients did not alter their AED during the follow-up period or changed in their view or attitude on their AED.ConclusionHD patients that draw up an AED usually describe general conditions for euthanasia and recognize that these conditions may change as the disease progresses. An AED or the wish to draw one up may be a good conversation starter for conversations about goals and preferences for future care.

Health care decision makers in many jurisdictions use cost-effectiveness analysis based on health economic decision models for policy decisions regarding coverage and price negotiation for medicines and medical devices. While validation of health economic decision models has always been considered important, many reviews of model-based cost-effectiveness studies report limitations regarding their validation. The current opinion paper discusses four aspects of current health economic decision modeling with relevance for future directions in model validation: increased use of complex models, international cooperation, open-source modeling, and stakeholder involvement. First, new, more complex clinical study designs and treatment strategies may require relatively complex model structures and/or input data analyses. Simultaneously, more widespread technical knowledge along with wider data availability have led to a broader range of model types. This puts extra requirements on model validation and transparency. Second, increased international cooperation of policy makers and, in particular, health technology assessment (HTA) authorities in performing model assessments is discussed in relation to the repeated use of health economic models (multi-use disease models). We argue such coordinated efforts may benefit model validity. Third, open-source modeling is discussed as one possible answer to increased transparency requirements. Finally, involvement of all relevant stakeholders throughout the whole decision process is an ongoing development that necessarily also includes health economic modeling. We argue this implies that model validity should be considered in a broader perspective, with more focus on conceptual modeling, model transparency, accuracy requirements, and choice of relevant model outcomes than previously.

Poor air quality affects the health and wellbeing of large populations around the globe. Although source controls are the most effective approaches for improving air quality and reducing health risks, individuals can also take actions to reduce their personal exposure by staying indoors, reducing physical activity, altering modes of transportation, filtering indoor air, and using respirators and other types of face masks. A synthesis of available evidence on the efficacy, effectiveness, and potential adverse effects or unintended consequences of personal interventions for air pollution is needed by clinicians to assist patients and the public in making informed decisions about use of these interventions. To address this need, the American Thoracic Society convened a workshop in May of 2018 to bring together a multidisciplinary group of international experts to review the current state of knowledge about personal interventions for air pollution and important considerations when helping patients and the general public to make decisions about how best to protect themselves. From these discussions, recommendations were made regarding when, where, how, and for whom to consider personal interventions. In addition to the efficacy and safety of the various interventions, the committee considered evidence regarding the identification of patients at greatest risk, the reliability of air quality indices, the communication challenges, and the ethical and equity considerations that arise when discussing personal interventions to reduce exposure and risk from outdoor air pollution.

This document provides clinical recommendations for the management of severe asthma. Comprehensive evidence syntheses, including metaanalyses, were performed to summarise all available evidence relevant to the European Respiratory Society/American Thoracic Society Task Force’s questions. The evidence was appraised using the GRADE (Grading of Recommendations, Assessment, Development and Evaluation) approach and the results were summarised in evidence profiles. The evidence syntheses were discussed and recommendations formulated by a multidisciplinary Task Force of asthma experts, who made specific recommendations on six specific questions. After considering the balance of desirable and undesirable consequences, quality of evidence, feasibility, and acceptability of various interventions, the Task Force made the following recommendations:• suggest using anti-interleukin (IL)-5 and anti-IL-5 receptor α for severe uncontrolled adult eosinophilic asthma phenotypes;• suggest using a blood eosinophil cut-point ≥150 μL−1 to guide anti-IL-5 initiation in adult patients with severe asthma;• suggest considering specific eosinophil (≥260 μL−1) and exhaled nitric oxide fraction (≥19.5 ppb) cut-offs to identify adolescents or adults with the greatest likelihood of response to anti-IgE therapy;• suggest using inhaled tiotropium for adolescents and adults with severe uncontrolled asthma despite Global Initiative for Asthma (GINA) step 4 – 5 or National Asthma Education and Prevention Program (NAEPP) step 5 therapies;• suggest a trial of chronic macrolide therapy to reduce asthma exacerbations in persistently symptomatic or uncontrolled patients on GINA step 5 or NAEPP step 5 therapies, irrespective of asthma phenotype;• suggest using anti-IL-4/13 for adult patients with severe eosinophilic asthma and for those with severe corticosteroid-dependent asthma regardless of blood eosinophil levels.These recommendations should be reconsidered as new evidence becomes available.

BackgroundMany patients with COVID-19 did not require hospitalisation, nor underwent COVID-19 testing. There is anecdotal evidence that patients with “mild” COVID-19 may complain about persistent symptoms, even weeks after the infection. This suggests that symptoms during the infection may not resolve spontaneously. The objective of this study was to assess whether multiple relevant symptoms recover following the onset of symptoms in hospitalised and nonhospitalised patients with COVID-19.MethodsA total of 2113 members of two Facebook groups for coronavirus patients with persistent complaints in the Netherlands and Belgium, and from a panel of people who registered on a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, date of symptoms onset, COVID-19 diagnosis, healthcare utilisation, and the presence of 29 symptoms at the time of the onset of symptoms (retrospectively) and at follow-up (mean±sd 79±17 days after symptoms onset).ResultsOverall, 112 hospitalised patients and 2001 nonhospitalised patients (confirmed COVID-19, n=345; symptom-based COVID-19, n=882; and suspected COVID-19, n=774) were analysed. The median number of symptoms during the infection reduced significantly over time (median (interquartile range) 14 (11–17) versus 6 (4–9); p<0.001). Fatigue and dyspnoea were the most prevalent symptoms during the infection and at follow-up (fatigue: 95% versus 87%; dyspnoea: 90% versus 71%).ConclusionIn previously hospitalised and nonhospitalised patients with confirmed or suspected COVID-19, multiple symptoms are present about 3 months after symptoms onset. This suggests the presence of a “post-COVID-19 syndrome” and highlights the unmet healthcare needs in a subgroup of patients with “mild” or “severe” COVID-19.

A patient discusses asthma biomarkers in relation to her experience of living with asthma, and her work as a patient advocate for @EuropeanLung http://bit.ly/2lQPVtU

Background: Only few studies have investigated the effects of pulmonary rehabilitation (PR) on fatigue in COPD. To date, it remains unknown which patients have a clinically relevant improvement in fatigue following PR. Purpose of this study was to identify these responders. Methods: Demographics, lung function, mood status (SCL90-A and BDI-PC), exercise tolerance (6MWD), and health status (NCSI) were assessed before and after a 12-week PR program at Dekkerswald Radboudumc (Nijmegen, The Netherlands). Fatigue was assessed using the Checklist Individual Strength (CIS)-Fatigue. Patients with a decline ≥10 points (MCID) were defined as responders. Results: 446 COPD patients (61±9 years, 53% male, FEV1 43±18 %pred, 75% severe fatigue) completed the PR. 53% were identified as responders. Mean change in fatigue after PR (10±12 points, p Conclusions: PR reduces fatigue in COPD. Responders on fatigue have worse fatigue and HRQoL scores at baseline, and are likely to be responders on other outcomes in PR.

In the management of chronic conditions, such as chronic obstructive pulmonary disease (COPD), there is a shift from doctor-driven care to patient-centred integrated care with active involvement of and self-management by the patient. A recently developed tool, the assessment of burden of COPD (ABC) tool, can be used in this transition to facilitate self-management support and shared decision-making. We performed a qualitative study, in which we collected and analysed the data using the methods of conventional content analyses. We performed in-depth interviews consisting of mainly open questions. Fifteen healthcare providers and 21 patients were interviewed who had worked with the ABC tool in daily care. In general, participants responded positively to the tool. Healthcare providers felt the visual representation provided was effective and comprehensible for patients and provided them with insight into their disease, a finding that patients confirmed. If patients were allowed to choose between a consultation with or without the ABC tool, the majority would prefer using the tool: it provides them with an overview and insight, which makes it easier to discuss all relevant topics related to COPD. The tool can provide structure in consultations, and is compatible with the concepts of ‘motivational interviewing’ and ‘individualised care-planning’. Suggestions for improvement related to content and layout. So far, the tool has only been available as a stand-alone online program, that is not connected to the electronic medical record systems. It was therefore suggested that the tool be integrated into the systems to enhance its usability and its uptake by healthcare providers.