Search

Peter Ascanius Jacobsen,1,2 Kristian Hay Kragholm,2,3 Christian Torp-Pedersen,4 Daisy JA Janssen,5,6 Martijn A Spruit,5,7,8 Ulla Møller Weinreich1,2 1Department of Respiratory Diseases, Aalborg University Hospital, Aalborg, Denmark; 2The Clinical Institute, Aalborg University, Aalborg, Denmark; 3Department of Cardiology, Aalborg University Hospital, Aalborg, Denmark; 4Department of Clinical Research, Hillerød Hospital, Hillerød, Denmark; 5Department of Research and Development, Ciro, Horn, the Netherland; 6Department of Health Services Research, Care and Public Health Research Institute, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, the Netherlands; 7Nutrim School of Nutrition and Translational Research in Metabolism, Faculty of Health, Medicine and Life Sciences, Maastricht University, Maastricht, the Netherlands; 8Department of Respiratory Medicine, Maastricht University Medical Centre (MUMC+), Maastricht, the NetherlandsCorrespondence: Peter Ascanius JacobsenDepartment of Respiratory Diseases, Aalborg University Hospital, Aalborg, DenmarkTel +45 97 66 48 00Email peter.jacobsen@rn.dkIntroduction: The understanding of whether and to what extent employment status affects readmission and mortality is limited in patients with COPD.Aim: To explore how employment status affects readmission and mortality after first admission to the hospital with acute exacerbation of COPD (AECOPD).Methods: This study used Danish national registry-based data. All patients admitted for the first time to the hospital between 1999 and 2014 with a diagnosis of AECOPD, age 35– 59, without a previous asthma diagnosis were included in the study. Employment status effect on 30-, 90-, and 365-day readmission and mortality was examined using logistic regression, adjusting for relevant confounders.Results: A total of 11,850 COPD patients were included in the study of which 3563 (30%) were working, 1368 (12%) unemployed, 840 (7%) on sick leave, and 6079 (51%) receiving early retirement. Patients receiving early retirement had, compared to patients working, an adjusted increased likelihood of readmission at 30, 90, and 365 days (odds ratio (OR) 1.26 (CI95% (1.06– 1.49)), 1.33 (CI95% (1.16– 1.53)), and 1.48 (CI95% (1.33– 1.66)), respectively). An increased likelihood was also seen in unemployed at 365 days follow-up (OR 1.44 (CI95% (1.22– 1.68))). Early retirement was associated with an increased mortality at 30, 90, and 365 days (OR 1.39 (CI95% (1.07– 1.80)) 1.37 (CI95% (1.09– 1.79)) and 1.48 (CI95% (1.25– 1.75)), respectively). An increased likelihood was also seen in patients receiving sick leave (OR 1.57 (CI95% (1.21– 2.04))).Conclusion: Patients with COPD who are not working at the time of first admission have a higher likelihood of readmission and mortality.Keywords: chronic obstructive pulmonary disease, employment, mortality, readmission

Nienke Nakken,1 Daisy JA Janssen,1,2 Monique van Vliet,3 Geeuwke J de Vries,4 Giny AL Clappers-Gielen,5 Arent Jan Michels,6 Jean WM Muris,7 Jan H Vercoulen,8 Emiel FM Wouters,1,9 Martijn A Spruit1 1Department of Research and Education, CIRO, Horn, 2Centre of Expertise for Palliative Care, Maastricht University Medical Centre+ (MUMC+), Maastricht, 3Department of Respiratory Medicine, Zuyderland, Heerlen, 4Department of Respiratory Medicine, Zuyderland, Sittard-Geleen, 5Department of Respiratory Medicine, Elkerliek Hospital, Helmond, 6Department of Respiratory Medicine, St Anna Hospital, Geldrop, 7Department of Family Medicine, CAPHRI School of Public Health and Primary Care, Maastricht University, Maastricht, 8Department of Medical Psychology and Department of Pulmonary Diseases, Radboud University Nijmegen Medical Centre, Nijmegen, 9Department of Respiratory Medicine, Maastricht University Medical Centre+ (MUMC+), Maastricht, the Netherlands Background/objectives: Chronic obstructive pulmonary disease (COPD) not only affects patients but also their partners. Gender-related differences in patients with COPD are known, for instance regarding symptoms and quality of life. Yet, research regarding gender differences in partners of patients with COPD has been conducted to a lesser extent, and most research focused on female partners. We aimed to investigate differences between male and female partners of patients with COPD regarding their own characteristics and their perceptions of patients’ characteristics.Design: Cross-sectional study.Setting: Four hospitals in the Netherlands.Participants: One hundred and eighty-eight patient–partner couples were included in this cross-sectional study.Measurements: General and clinical characteristics, health status, care dependency, symptoms of anxiety and depression, social support, caregiver burden, and coping styles were assessed during a home visit.Results: Female partners had more symptoms of anxiety and a worse health status than male partners. Social support and caregiver burden were comparable, but coping styles differed between male and female partners. Female partners thought that male patients were less care dependent and had more symptoms of depression, while these gender differences did not exist in patients themselves.Conclusion: Health care providers should pay attention to the needs of all partners of patients with COPD, but female partners in particular. Obtaining an extensive overview of the patient–partner couple, including coping styles, health status, symptoms of anxiety, and caregiver burden, is necessary to be able to support the couple as effectively as possible. Keywords: COPD, family caregiving, gender, partners

Fiona AHM Cleutjens,1 Frits ME Franssen,1 Martijn A Spruit,1 Lowie EGW Vanfleteren,1 Candy Gijsen,1 Jeanette B Dijkstra,2 Rudolf WHM Ponds,2 Emiel FM Wouters,1,3 Daisy JA Janssen1 1Department of Research and Education, CIRO, Centre of Expertise for Chronic Organ Failure, Horn, 2Department of Medical Psychology, Maastricht UMC+/School for Mental Health and Neurosciences (MHeNS), 3Department of Respiratory Medicine, Maastricht UMC+, Maastricht, the Netherlands Abstract: Impaired cognitive function is increasingly recognized in COPD. Yet, the prevalence of cognitive impairment in specific cognitive domains in COPD has been poorly studied. The aim of this cross-sectional observational study was to compare the prevalence of domain-specific cognitive impairment between patients with COPD and non-COPD controls. A neuropsychological assessment was administered in 90 stable COPD patients and 90 non-COPD controls with comparable smoking status, age, and level of education. Six core tests from the Maastricht Aging Study were used to assess general cognitive impairment. By using Z-scores, compound scores were constructed for the following domains: psychomotor speed, planning, working memory, verbal memory, and cognitive flexibility. General cognitive impairment and domain-specific cognitive impairment were compared between COPD patients and controls after correction for comorbidities using multivariate linear and logistic regression models. General cognitive impairment was found in 56.7% of patients with COPD and in 13.3% of controls. Deficits in the following domains were more often present in patients with COPD after correction for comorbidities: psychomotor speed (17.8% vs 3.3%; P

Purpose of Review: Shared decision making is crucial in palliative care for people with serious chronic respiratory diseases and their informal caregivers. Patient education is a critical component in this process, as it provides patients and their informal caregivers the necessary knowledge for informed decisions regarding symptom management, coping with breathlessness, and advance care planning. However, education does not automatically lead to acquiring knowledge. This review describes challenges for education for people with serious chronic respiratory diseases and their informal caregivers and describes how learner-centered education can address these., Recent Findings: People with serious chronic respiratory diseases and their informal caregivers face diverse information needs and learning challenges, with low health literacy and cognitive problems being common. Healthcare professionals can facilitate learner-centered education by enhancing motivation for knowledge acquisition by meeting information needs and learning preferences of patients and their informal caregivers, and by ensuring that information is understandable and readable for those with low health literacy and cognitive problems. E-health applications may serve as valuable tools in this process., Summary: Learner-centered education may enhance knowledge acquisition in people with serious chronic respiratory diseases and their informal caregivers aiming to gain control over symptoms and optimize shared decision making and advance care planning., (Copyright © 2024 The Author(s). Published by Wolters Kluwer Health, Inc.)

Objective: To validate an Urgency Classification Model developed for telephone triage in Dutch nursing homes., Design: Retrospective observational study., Setting and Participants: Retrospective analysis of triage data of nursing home residents in a medical service organization, active in 40 nursing homes across the Netherlands., Methods: An Urgency Classification Model for nursing home care was developed through a collaborative cocreation session by modifying existing acute medical care delivery models. All inquiries to central triage personnel during regular working hours between April 1 and April 30, 2022, were retrospectively categorized according to the new Urgency Classification Model ("urgency," consisting of 6 levels from U0 to U5; and "goals of care and treatment limitations," consisting of 4 options) by 2 independent physicians to evaluate the reliability using Cohen's kappa. To ascertain validity, the categorized data were juxtaposed with the executed treatment plan as documented in the patient records., Results: Of 387 inquiries, consensus between assessors using the Urgency Classification Model was reached upon initial independent classification of urgency in 77.0% (n = 298, Cohen's kappa 0.654) of cases and in 77.3% (n = 299, Cohen's kappa 0.649) of goals of care and treatment limitations classification, representing substantial interrater reliability. A strong positive correlation was found between the urgency identified through the Urgency Classification Model and the observed urgency in the executed treatment, r s  = 0.662, P < .001; the same urgency was given in 71.5% (n = 276) of all inquiries. Overtriage (meaning the model classified the inquiry as more urgent than the executed treatment plan) occurred in 9.8% (n = 38) and undertriage in 18.7% (n = 72)., Conclusion and Implications: The new Urgency Classification Model is a valid and reliable classification tool for implementation within its intended target population. Universal and comprehensive implementation is expected to lead to more appropriate care delivery, while realizing integration with the acute medical care frameworks already in place., Competing Interests: Disclosures D.J.A.J. has received non-personal lecture fees from AstraZeneca, Chiesi, and Abbott within the previous 3 years. No further conflicts of interest exist., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

This exploratory interview study investigated nursing staff members' perspectives on the fundamentals of end-of-life communication with older people as part of advance care planning in home care, nursing home, and hospital settings. Separate semi-structured interviews were conducted with 17 nursing staff members about their experiences, opinions, and preferences before, during, and after end-of-life conversations. Overall themes clustering the fundamentals include preconditions such as feeling comfortable talking about the end of life and creating space for open communication. Fundamentals related to the actual conversation-such as using senses and applying associative communication techniques (e.g., using understandable language), following conversation phases, and being aware of interprofessional collaboration-were also considered important. This study emphasizes the importance of moving along with the older person as well as connecting, adapting, and letting go of control over the conversation's outcome. Many fundamentals can be traced back to the basics of nursing and the humanity of conversation., Competing Interests: Declaration of competing interest The abovementioned authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.)

Topic Importance: This narrative review emphasizes the growing interest in palliative care for people with serious lung diseases such as COPD. It reflects on recent publications from the American Thoracic Society, the World Health Organization, and European Respiratory Society, with a focus on nonpharmacologic palliative care for people with COPD from both the health care professional and organizational perspective., Review Findings: The concept of palliative care has changed over time and is now seen as applicable throughout the entire disease trajectory according to need, in conjunction with any disease-modifying therapies. Palliative care should pay attention to the needs of the person with COPD as well as the informal caregiver. Timely integration of palliative care with disease-modifying treatment requires assessment of needs at the individual level as well as organizational changes. High-quality communication, including advance care planning, is a cornerstone of palliative care., Summary: Therefore, services should be based on the understanding that palliative care is not only specific standardized actions and treatments, but rather a holistic approach that includes compassionate communication, treatment, and care addressing the patient and informal and formal caregivers. Living with and dying of COPD is much more than objective measurements. It is the sum of relationships with others and the experience of living in the best possible harmony with one's own values and hopes, despite having a serious illness., (Copyright © 2024 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Objectives: To identify end-of-life preferences of people with advanced chronic obstructive pulmonary disease (COPD) and to compare characteristics between those who wish to discuss the end-of-life and those who do not., Methods: An analysis of the baseline data of a randomised controlled trial was performed including people with COPD GOLD stages III-IV or former quadrant D with modified Medical Research Council questionnaire grade ≥2, after hospital discharge following an exacerbation. Participants were interviewed using the End-of-Life Preferences Interview., Results: A total of 165 individuals (53% men; 68±9 years old; 55% care dependent) were included. Most participants wished to take part in shared decision-making (78%), to be informed about a short life expectancy (82%), to discuss the end-of-life (82%), to have loved ones around at death (87%) and to choose when to die (70%). They also reported accepting opioids (74%). Preferences for who to provide physical care, the place, consciousness and atmosphere at death as well as life-sustaining treatments were heterogeneous. Participants who wanted to discuss the end-of-life had a significantly higher educational level (p=0.030) and worse health status than participants who did not (p=0.007)., Conclusions: End-of-life preferences of people with advanced COPD were heterogeneous, however, most wished to discuss it, especially those with higher educational level and worse health status., Trial Registration Number: NTR3940., Competing Interests: Competing interests: MAM, AJLM, SH-W, CHMH and AM have no conflicts of interest to declare. MAS reports grants and/or fees from Netherlands Lung Foundation Netherlands, Stichting Astma Bestrijding, Boehringer Ingelheim, AstraZeneca, Chiesi, GSK, Sanofi and TEVA, all paid to the institution and all outside the submitted work. DJAJ has received lecture fees from Chiesi, AstraZeneca and Abbott within the previous 3 years, all paid to the institution and all outside the submitted work., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Symptom burden in patients with COPD is often under-recognised. In this cross-sectional analysis, we aimed to study the severity of a variety of (non-)respiratory symptoms in patients with and without COPD and to explore the associations between clusters based on symptom severity and other clinical characteristics., Methods: Characteristics were assessed in 538 patients with COPD from primary, secondary and tertiary care and 116 non-COPD participants. The severity of 20 symptoms was measured using a visual analogue scale (VAS), ranging from 0 mm (no symptom) to 100 mm (maximum severity). K-means cluster analysis was applied to symptom severity in the patient sample only., Results: People with COPD were comparable with non-COPD participants in terms of gender (58% versus 55% male, p=0.132) and age (64±9 years versus 63±6 years, p=0.552) and had a reduced forced expiratory volume in 1 s (57±23% predicted versus 111±17% predicted, p<0.001). The COPD group had higher VAS scores for most symptoms (p<0.05). The most severe symptoms in patients with COPD were dyspnoea, fatigue and muscle weakness while non-COPD participants mainly experienced insomnia and micturition. Three clusters were identified in the patient sample. Health status and care dependency differed between all clusters, while functional mobility, exacerbation history and lung function differed between cluster 1 and the other two clusters (p<0.05)., Conclusions: People with COPD report a high burden of respiratory as well as non-respiratory symptoms. Cluster analysis demonstrated a co-occurrence of different levels of symptom severity, highlighting the heterogeneity of symptoms experience. Identifying clusters of patients with shared symptom experiences will help us to understand the impact of the disease and define integrated, multidimensional treatment strategies., Competing Interests: Conflict of interest: D.J.A. Janssen has received lectures fees from Boehringer Ingelheim, and nonpersonal lecture fees from Chiesi, AstraZeneca and Abbott within the previous 3 years, outside the submitted work. Conflict of interest: F.M.E. Franssen reports grants and personal fees from AstraZeneca; personal fees from Boehringer Ingelheim, Chiesi and GlaxoSmithKline; grants and personal fees from Novartis; and personal fees from TEVA, outside the submitted work. Conflict of interest: M.A. Spruit reports grants and/or fees from the Netherlands Lung Foundation, Stichting Astma Bestrijding, Boehringer Ingelheim, AstraZeneca, Chiesi, GlaxoSmithKline and TEVA, all paid to the institution and all outside the submitted work. Conflict of interest: The remaining authors have nothing to disclose., (Copyright ©The authors 2024.)

Interprofessional collaboration (IPC) is essential for high-quality palliative care (PC) for persons with dementia. The aim of this scoping review was to identify IPC approaches in palliative dementia care and explore the elements constituting these approaches. We performed a search in PubMed, CINAHL, and PsychINFO using the Joanna Briggs Institute Reviewers' manual and PRISMA guidelines, and conducted content analysis of the included articles. In total, 28 articles were included, which described 16 IPC approaches in palliative dementia care. The content analysis revealed three overall elements of these approaches: 1) collaborative themes, 2) collaborative processes, and 3) resources facilitating collaboration. Frequently reported collaborative themes embraced pain management and providing care in the dying phase. These themes were addressed through intertwined collaborative processes including communication, coordination, assessing and monitoring, and reflecting and evaluating. To ensure optimal IPC in palliative dementia care, various resources were required, such as PC knowledge, skills to manage symptoms, skills to communicate with collaborators, and a facilitating environment. In conclusion, the identified IPC approaches in palliative dementia care involve diverse collaborating professionals who mainly manage symptoms, prepare for the dying phase and require material and immaterial resources to enable optimal IPC in palliative dementia care.

Aims: To describe the co-creation of the 'Desired Dementia Care Towards End of Life' (DEDICATED) approach to improve person-centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation., Methods: A needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co-created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi-structured interviews with actively engaged professionals were analysed using Conventional Content Analysis., Results: The needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co-creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones., Conclusion: Co-creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person-centred palliative dementia care., Impact Statement: This study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools., Implications for the Profession and Patient Care: The developed approach can improve person-centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones., Reporting Method: This study used the Consolidated Criteria for Reporting Qualitative Research., Patient of Public Contribution: No patient or public contribution., (© 2024 The Author(s). Journal of Advanced Nursing published by John Wiley & Sons Ltd.)

Introduction: An in-depth understanding of educational needs from the perspective of learners in pulmonary rehabilitation is lacking. To improve learning in pulmonary rehabilitation, understanding of factors that induce or enhance intrinsic motivation in both patients and their significant others is needed. Therefore, this study aims to gain in-depth understanding of what motivates patients with COPD or asthma referred for pulmonary rehabilitation and their significant others to learn and what their preferences are for education., Methods: For this qualitative study, a sample was taken from a previous quantitative study. Data was collected through one-time face-to-face semi-structured interviews. The interviews were transcribed and independently analysed by two researchers using thematic analyses., Results: Twelve patients and four significant others (56% female; age: 63±11 years) were interviewed. Participants expressed a variety of information needs and learning preferences. Subthemes that emerged within the theme of motivation for learning were: 1) curiosity, such as knowledge gaps and hope for new information; and 2) values and goals, such as own health, caring for loved ones and spending time with family., Discussion: To enhance intrinsic motivation for learning within pulmonary rehabilitation, autonomy of individuals should be supported by offering several learning topics and education adapted to preferences, while curiosity should be fostered by targeting information needs. Moreover, health education programmes should match with the personal values and goals of individuals, such as own health, caring for loved ones and spending time with family., Competing Interests: Conflict of interest: A.J.L. Muijsenberg, S. Haesevoets and S. Houben-Wilke have no conflicts of interests to declare. Conflict of interest: J. Tatousek and J. Lacroix are both salaried employees of Philips with other no conflict of interest. Conflict of interest: M.A. Spruit reports grants and/or fees from the Netherlands Lung Foundation, Stichting Astma Bestrijding, Boehringer Ingelheim, AstraZeneca, Chiesi, GSK and TEVA, all paid to the institution and all outside the submitted work. Conflict of interest: D.J.A. Janssen has received lecture fees from Chiesi, AstraZeneca and Abbott within the previous 3 years, all paid to their institution and all outside the submitted work., (Copyright ©The authors 2024.)

The study aim was to identify the most problematic self--reported activities of daily living (ADLs). In a retrospective study, 1935 problematic ADLs were reported by 538 clients with 95% experiencing two or more problematic ADLs. Problematic ADLs were assessed by occupational therapists using the Canadian Occupational Performance Measure with walking (67%), household activities (41%), and climbing the stairs (41%) identified as the most prevalent problematic ADLs. Significant but weak associations were found between clinical determinants (e.g. physical, psychosocial) and problematic ADLs. The wide variety of problematic ADLs and the absence of a strong association with clinical determinants emphasizes the need for using individualized interview-based performance measures in clients with asthma.

Introduction: In patients with chronic obstructive pulmonary disease (COPD), loneliness and social isolation are associated with increased morbidity and decreased mobility, self-reliance, and health-related quality of life. Social support has been shown to improve these outcomes., Aims: This cross-sectional study aimed to investigate the level of experienced social support and the clinical outcomes associated with inadequate social support among patients with COPD with a resident loved one., Methods: Level of social support was assessed with the Medical Outcomes Study - Social Support Survey (MOS-SSS) in patients with COPD with a resident loved one. Patients were sub-grouped into adequate or inadequate social support. Multiple clinical outcomes were assessed, including lung function, degree of dyspnoea, health status, symptoms of anxiety and depression, the degree of care dependency, functional status, and mobility., Results: The study included 191 Dutch patients with COPD (53.4% men, age: 65.6 ± 8.9 years, FEV 1 : 47.3 ± 17.7% predicted). Eighteen percent of the patients reported inadequate social support. Patients with inadequate social support reported a significantly symptom severity of COPD (p = 0.004), a higher care dependency level (p = 0.04) and a higher level of depression (p = 0.004) compared to patients with adequate social support. Other traits were comparable for both groups., Conclusion: Patients with COPD with a resident loved one who perceive an inadequate level of social support are more likely to report a higher impact of COPD, a higher care dependency and symptoms of depression. Other characteristics are comparable with patients who perceive adequate social support., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Objective: To assess health and activities of daily living (ADL) in SARS-CoV-2-positive adults with and without post-COVID-19 condition (PCC) and compare this with negative tested individuals. Furthermore, different PCC case definitions were compared with SARS-CoV-2-negative individuals., Methods: All adults tested PCR positive for SARS-CoV-2 at the Public Health Service South Limburg (Netherlands) between June 2020 and November 2021 (n=41 780) and matched PCR negative individuals (2:1, on age, sex, year-quarter test, municipality; n=19 875) were invited by email. Health (five-level EuroQol five-dimension (EQ5D) index and EuroQol visual analogue scale (EQVAS)) and ADL impairment were assessed. PCC classification was done using the WHO case definition and five other common definitions., Results: In total, 8409 individuals (6381 SARS-CoV-2 positive; 53±15 years; 57% female; 9 (7-11) months since test) were included. 39.4% of positives had PCC by the WHO case definition (EQVAS: 71±20; EQ5D index: 0.800±0.191; ADL impairment: 30 (10-70)%) and perceived worse health and more ADL impairment than negatives, that is, difference of -8.50 points (95% CI -9.71 to -7.29; p<0.001) for EQVAS, which decreased by 1.49 points (95% CI 0.86 to 2.12; p<0.001) in individuals with PCC for each comorbidity present, and differences of -0.065 points (95% CI -0.074 to -0.056; p<0.001) for EQ5D index, and +16.72% (95% CI 15.01 to 18.43; p<0.001) for ADL impairment. Health and ADL impairment were similar in negatives and positives without PCC. Replacing the WHO case definition with other PCC definitions yielded comparable results., Conclusions: Individuals with PCC have substantially worse health and more ADL impairment than negative controls, irrespective of the case definition. Authorities should inform the public about the associated burden of PCC and enable adequate support., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Dyspnoea is a common symptom of respiratory disease. However, data on its prevalence in general populations and its association with lung function are limited and are mainly from high-income countries. The aims of this study were to estimate the prevalence of dyspnoea across several world regions, and to investigate the association of dyspnoea with lung function., Methods: Dyspnoea was assessed, and lung function measured in 25,806 adult participants of the multinational Burden of Obstructive Lung Disease study. Dyspnoea was defined as ≥2 on the modified Medical Research Council (mMRC) dyspnoea scale. The prevalence of dyspnoea was estimated for each of the study sites and compared across countries and world regions. Multivariable logistic regression was used to assess the association of dyspnoea with lung function in each site. Results were then pooled using random-effects meta-analysis., Results: The prevalence of dyspnoea varied widely across sites without a clear geographical pattern. The mean prevalence of dyspnoea was 13.7 % (SD=8.2 %), ranging from 0 % in Mysore (India) to 28.8 % in Nampicuan-Talugtug (Philippines). Dyspnoea was strongly associated with both spirometry restriction (FVC1 /FVC

Background: Palliative care addresses multiple unmet needs of people with chronic obstructive pulmonary disease (COPD) or interstitial lung diseases (ILD) and their family and/or friend caregivers, but it remains highly underused. Pulmonary rehabilitation (PR) may provide a key opportunity to introduce palliative care. We aim to explore the effects of palliative care education as part of PR on knowledge about this field in people with COPD or ILD and their family and/or friend caregivers., Methods: A randomized controlled study will compare PR with palliative care education (experimental) with traditional PR (control) in people with COPD or ILD and their family and/or friend caregivers. Family and/or friend caregivers will be invited to take part in education and psychosocial support sessions. In addition to the usual educational content, the experimental group will have a session on palliative care, a "Peer-to-peer session", two "Get-apart sessions" and online sessions. The "Peer-to-peer session" and the "Get-apart sessions" will be discussions about topics suggested by participants. The "Get-apart sessions" will be dedicated to people with COPD or ILD apart from their family and/or friend caregivers and vice versa. The online sessions will be zoom meetings to discuss any health-related issues raised by participants, at a flexible time. A mixed-methods approach will be used to evaluate the outcomes. The primary outcome will be knowledge about palliative care. Secondary outcomes will include attitude towards palliative care referral, symptoms, disease impact, health-related quality of life, needs, knowledge about the disease, burden of providing care, adherence, adverse events and referral to a specialist palliative care team. Quantitative and qualitative data will be collected at baseline and end of PR. At 6-months post-PR, only patient-reported outcomes will be collected. For the primary outcome, time*group interaction will be analyzed with mixed analysis of variance., Discussion: This study aims to demonstrate the impact of integrating palliative care into the PR education program., Trial Registration: The trial was registered in the ClinicalTrials.gov U.S. National Library of Medicine, on 1st September, 2023 (NCT06046547)., (© 2024. The Author(s).)

Objectives: This study aimed to develop the conversation tool "I-HARP for COPD" for timely identification of palliative care needs in Dutch patients with chronic obstructive pulmonary disease (COPD)., Methods: An iterative and participatory research design was used to develop "I-HARP for COPD". There were 2 phases to the development of "I-HARP for COPD": content development and testing. A review of current literature, parallel focus groups, and a questionnaire among experts were used to develop the content of "I-HARP for COPD". "I-HARP for COPD" was then assessed by health-care professionals (HCPs) in clinical practice for understanding, difficulty, and relevance., Results: A total of 46 HCPs, 6 patients, 1 informal caregiver, and 1 bereaved informal caregiver participated in this study. "I-HARP for COPD" included 14 screening questions, additional in-depth questions, and recommendations to address identified needs. The content of "I-HARP for COPD" was accepted by 86.2% of the HCPs., Significance of Results: "I-HARP for COPD" was successfully developed for providing guidance in the palliative care of Dutch patients with COPD and their informal caregivers. By supporting HCPs with "I-HARP for COPD", they are better able to timely identify and direct palliative care needs.

Objective: Morphine is used as palliative treatment of chronic breathlessness in patients with chronic obstructive pulmonary disease (COPD). Part of the patients does not experience a clinically meaningful improvement of breathlessness and it is unclear which characteristics are related to a clinically meaningful improvement of breathlessness after morphine. Therefore, this study assessed whether sensory breathlessness description, demographic and clinical characteristics are related with this improvement., Methods: Cross-sectional secondary analysis of the intervention arm of a randomised controlled trial. 45 patients with COPD and moderate-to-very severe chronic breathlessness despite optimal treatment received 20-30 mg oral sustained-release morphine daily for 4 weeks. Using binary logistic regression, the relationship between a clinically meaningful improvement in breathlessness (≥1 point on 0-10 numeric rating scale) and the baseline variables sensory breathlessness descriptors, age, breathlessness and body mass index (BMI) was assessed., Results: Twenty-one participants (42%) showed a clinically meaningful improvement. Baseline breathlessness (OR 1.51, 95% CI 1.04 to 2.21, p=0.03) and BMI (OR 1.13, 95% 1.02-1.28, p=0.02) were significant associated to a clinically meaningful improvement of breathlessness, while age and sensory breathlessness descriptors were not., Conclusions: Worse baseline breathlessness and higher BMI are associated to a clinically meaningful improvement of breathlessness in patients using 20-30 mg oral sustained-release morphine. Opioid treatment should be considered in patients with COPD with severe breathlessness, taking into account the patient's BMI., Competing Interests: Competing interests: MHJvdB-E reports personal fees from Kyowa Kirin and MSD, outside the submitted work. DJAJ reports grants from ZonMw, the Hague, the Netherlands, during the conduct of the study; personal fees from Boehringer Ingelheim, Novartis, and AstraZeneca, outside the submitted work., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Minimally important differences (MIDs) for common outcomes of pulmonary rehabilitation are well documented for people with chronic obstructive pulmonary disease (COPD). It is not known whether MIDs differ based on COPD disease characteristics. This study aimed to estimate MIDs for clinical outcomes of pulmonary rehabilitation dependent upon baseline characteristics., Methods: A database containing 2791 people with COPD was split into derivation (n=2245; age 66±9 years; 50% males; FEV 1 47±20% predicted) and comparator (n=546; age 66±9 years; 47% males; FEV 1 46±21% predicted) cohorts. MIDs were estimated using 0.5 x SD (symmetrically distributed) or 0.5 x IQR (non-symmetrically distributed) for: 6-minute walk test (6MWT), constant work rate test (CWRT), COPD assessment test (CAT), St. George's respiratory questionnaire (SGRQ), hospital anxiety and depression scale (HADS), and fat-free mass index (FFMI). MIDs were estimated based on baseline outcome scores, lung function, modified medical research council (mMRC) grade and FFMI., Results: MID estimates were comparable to previously reported values. MIDs for SGRQ domains (Symptom=8.7 points, Activity=7.1 points, Impact=8.1 points) and FFMI were produced (0.36kg/m 2 ). There was greater variation of change in 6MWT, SGRQ-activity, SGRQ-impact, HADS and FFMI on which the MIDs were determined when categorising for baseline values (all, p<0.05). Greater variation of change in 6MWT on which the MIDs were determined was evident with COPD disease severity grouping (p<0.05). The magnitude of change in 6MWT, CAT, CWRT, SGRQ-activity, and FFMI with baseline mMRC score categorisation resulted in greater variation on which the MIDs were determined (all, p<0.05). Baseline stratification for FFMI resulted in greater variation of change in CWRT (p<0.001) and HADS-depression (p = 0.043) on which MIDs were determined., Discussion: Findings suggest that baseline presentation should be considered for people with COPD when assessing the efficacy of pulmonary rehabilitation. However, clinical significance of the variation underpinning MIDs is yet to be determined., Competing Interests: Conflicts of interest The authors declare no conflicts of interest in relation to the production of this manuscript., (Copyright © 2023 Sociedade Portuguesa de Pneumologia. Published by Elsevier España, S.L.U. All rights reserved.)

Introduction: Interprofessional collaboration (IPC) within and during movements between care settings is crucial for optimal palliative dementia care. The objective of this study was to explore the experiences of persons with dementia regarding collaboration with and between healthcare professionals (HCPs) and their perceptions of a possible future move to the nursing home (NH) in palliative dementia care. Method: We conducted a cross-sectional qualitative study and performed semi-structured interviews with a purposive sample of persons with dementia living at home ( N  = 18). Data analysis involved content analysis. Results: Our study demonstrated that even though most persons with dementia find it difficult to perceive the collaboration amongst HCPs, they could describe their perceived continuity of care ( Theme 1. My perception of collaboration among HCPs ). Their core needs in collaboration with HCPs were receiving information, support from informal caregivers, personal attention and tailored care ( Theme 2. My needs in IPC ). Regarding a possible future move to the NH, persons with dementia cope with their current decline, future decline and a possible future move to the NH ( Theme 3. My coping strategies for a possible future move to the NH ). They also prefer to choose the NH, and continue social life and activities in their future NH ( Theme 4. My preferences when a NH becomes my possible future home ). Conclusion: Persons with dementia are collaborative partners who could express their needs and preferences, if they are willing and able to communicate, in the collaboration with HCPs and a possible future move to the NH.

Background: Nursing staff is ideally positioned to play a central role in end-of-life communication as part of advance care planning for older people. However, this requires specific skills and competences. Only fragmented knowledge is available concerning important fundamentals in end-of-life communication performed by nursing staff., Objective: This review aimed to explore the fundamentals of end-of-life communication as part of advance care planning in the hospital, nursing home and home care setting, from the perspective of the nursing staff, the older person, and the family caregiver., Design: Scoping review., Methods: A literature search in PubMed, PsycINFO, CINAHL and Google (Scholar) was conducted on August 20, 2022. The search strategy followed the sequential steps as described in the Joanna Briggs Institute Manual. Peer-reviewed articles of empirical research and gray literature written in English or Dutch and published from 2010 containing fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers in the hospital nursing home or home care setting were considered eligible for review., Results: Nine studies were included, and four themes were composed, reflecting 11 categories. Nursing staff attunes end-of-life communication to the values and needs of older people to approach the process in a person-centered manner. This approach requires additional fundamentals: building a relationship, assessing readiness, timing and methods to start the conversation, communication based on information needs, attention to family relationships, a professional attitude, improving communication skills, listening and non-verbal observation skills, and verbal communication skills., Conclusions: This review is the first to compile an overview of the fundamentals of end-of-life communication performed by nursing staff. Building a nursing staff-older-person relationship is the most important foundation for engaging in a person-centered end-of-life communication process. Knowing each other enables nursing staff to have a sense of older people's readiness, determine the right timing to initiate an end-of-life conversation, identify specific needs, and accurately apply (non-)verbal observation skills. end-of-life communication is not a one-time conversation, but a complex process that takes time, effort, and genuine interest in each other., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Introduction: Besides dyspnoea and cough, patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis may experience distressing non-respiratory symptoms, such as fatigue or muscle weakness. However, whether and to what extent symptom burden differs between patients with IPF or sarcoidosis and individuals without respiratory disease remains currently unknown., Objectives: To study the respiratory and non-respiratory burden of multiple symptoms in patients with IPF or sarcoidosis and to compare the symptom burden with individuals without impaired spirometric values, FVC and FEV1 (controls)., Methods: Demographics and symptoms were assessed in 59 patients with IPF, 60 patients with sarcoidosis and 118 controls (age ≥18 years). Patients with either condition were matched to controls by sex and age. Severity of 14 symptoms was assessed using a Visual Analogue Scale., Results: 44 patients with IPF (77.3% male; age 70.6±5.5 years) and 44 matched controls, and 45 patients with sarcoidosis (48.9% male; age 58.1±8.6 year) and 45 matched controls were analyzed. Patients with IPF scored higher on 11 symptoms compared to controls (p<0.05), with the largest differences for dyspnoea, cough, fatigue, muscle weakness and insomnia. Patients with sarcoidosis scored higher on all 14 symptoms (p<0.05), with the largest differences for dyspnoea, fatigue, cough, muscle weakness, insomnia, pain, itch, thirst, micturition (night, day)., Conclusions: Generally, respiratory and non-respiratory symptom burden is significantly higher in patients with IPF or sarcoidosis compared to controls. This emphasizes the importance of awareness for respiratory and non-respiratory symptom burden in IPF or sarcoidosis and the need for additional research to study the underlying mechanisms and subsequent interventions., Competing Interests: Declaration of Competing Interest None., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available., Competing Interests: Conflict of interest: D.J.A. Janssen reports lecture fees from Boehringer Ingelheim (personal), Chiesi (non-personal), AstraZeneca (non-personal) and Abbott (non-personal) within the previous three years outside the submitted work. Conflict of interest: C. Coleman is an employee of the European Lung Foundation. Conflict of interest: D.C. Currow has received intellectual property payments and consultancy fees from Mayne Pharma International Pty Ltd, manufacturers of Kapanol and is a paid adviser to Helsinn Pharmaceuticals. Conflict of interest: G.P. Kurita has received grants from Novo Nordisk Foundation, the Danish Cancer Society and European Commission outside the submitted work. Conflict of interest: M. Maddocks is supported by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration South London (NIHR ARC South London) at King's College Hospital NHS Foundation Trust; the views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Conflict of interest: H. Pinnock has received speaker fees from Boehringer Ingelheim, Teva, and Sandoz for non-promotional talks on digital respiratory health and asthma supported selfmanagement. Conflict of interest: T. Tonia is a methodologist for the European Respiratory Society. Conflict of interest: K. Marsaa reports lecture fees from Astellas Pharma, GlaxoSmithKline, AstraZeneca, Novartis, Boehringer Ingelheim, Kyowa Kirin, Norgine, Roche, Bristol-Myers Squibb, Chiesi Pharma outside the submitted work. Conflict of interest: All other panellists have no conflicts of interest to report., (Copyright ©The authors 2023. For reproduction rights and permissions contact permissions@ersnet.org.)

This study evaluates to what extent symptoms are present before, during, and after a positive SARS-CoV-2 polymerase chain reaction (PCR) test, and to evaluate how the symptom burden and quality of Life (QoL) compares to those with a negative PCR test. Participants from the Dutch Lifelines COVID-19 Cohort Study filled-out as of March 2020 weekly, later bi-weekly and monthly, questions about demographics, COVID-19 diagnosis and severity, QoL, and symptoms. The study population included those with one positive or negative PCR test who filled out two questionnaires before and after the test, resulting in 996 SARS-CoV-2 PCR positive and 3978 negative participants. Nearly all symptoms were more often reported after a positive test versus the period before the test (p < 0.05), except fever. A higher symptom prevalence after versus before a test was also found for nearly all symptoms in negatives (p < 0.05). Before the test, symptoms were already partly present and reporting of nearly all symptoms before did not differ between positives and negatives (p > 0.05). QoL decreased around the test for positives and negatives, with a larger deterioration for positives. Not all symptoms after a positive SARS-CoV-2 PCR test might be attributable to the infection and symptoms were also common in negatives., (© 2023. The Author(s).)

Rationale: A significant reduction in hospitalizations for acute exacerbations of COPD (AECOPDs) has been reported during the coronavirus disease 2019 (COVID-19) pandemic. It remains unclear whether this reduction is the result of health care avoidance by patients, or of infection prevention and control (IPC) measures., Objectives: Our objective was to explore the impact of COVID-19-related IPC measures on the occurrence of AECOPD in a real-life inpatient pulmonary rehabilitation (PR) setting, thereby ruling out potential effects of health care avoidance., Methods: Patients with COPD admitted for 8 weeks of inpatient PR at Ciro (Horn, the Netherlands) between October 2020 and March 2021, the first winter with full COVID-19-related IPC measures,were compared to patients admitted during the same period in previous years (2017-2018, 2018-2019, and 2019-2020). Electronic medical records were retrospectively screened for the occurrence of moderate to severe AECOPDs, drop-out, and mortality., Results: A total of 501 patients with COPD (median age 66.6 [interquartile range (IQR) 60.3-71.9] years, 43.1% male, forced expiratory volume in 1 second [FEV 1 ] 35.9 [26.8-50.6] % predicted) were analyzed. During 2020-2021, 22 patients (31.0%) experienced ≥1 AECOPD compared to 43 patients (33.6%) in 2019-2020, 55 patients (36.9%) in 2018-2019, and 83 patients (54.2%) in 2017-2018. This represents a 25.4% reduction in 2020-2021 compared to the average of the previous 3 periods, p =0.077. No differences in AECOPD severity, drop-out, or mortality were observed., Conclusions: COVID-19-related IPC measures did not significantly reduce the AECOPD rate during inpatient PR in a single-center setting. The current findings suggest that avoidance of health care may be an important factor in the observed reduction of AECOPD-related hospitalizations during the pandemic and that the value of the strict COVID-19-related IPC measures for the prevention of AECOPDs warrants further research., (JCOPDF © 2023.)

Exploring clinically meaningful measures of improvement for people with persisting breathlessness https://bit.ly/3WaCzFh., Competing Interests: Conflict of interest: C. Verberkt reports grant from Radboudumc. D. Janssen reports grants from the Netherlands Organisation for Health Research and Development (ZonMw), Stichting Astmabestrijding and NRS Award. D.C. Currow reports advisory board membership and consultancy for Helsinn Pharmaceuticals; consultancy and receives payment for intellectual property with Mayne Pharma International Pty Ltd.; subcontracting to Nous Group Pty Ltd; board membership for icare Dust Diseases Care NSW; and board membership/directorship for Chris O'Brien Lifehouse. The remaining authors have nothing to disclose., (Copyright ©The authors 2023.)

Objectives: To develop learner-centered education, knowledge about learning styles and factors that affect the ability to learn in patients and their significant others are essential. The present scoping review aims to identify current evidence on 1) how learning styles are assessed within health education, for adult patients as well as their significant others and 2) factors affecting learning in adult patients and their significant others who receive health education., Methods: Systematic literature searches were performed in ERIC, PubMed, Web of Science and PsycINFO., Inclusion Criteria: 1) participants ≥ 18 years; 2) participants were patients or significant others; 3) assessment of learning style and/or factors affecting learning; and 4) health education as context., Results: 45 articles were included. Learning style within health education can be assessed with multiple choice questions, qualitative methods and a validated questionnaire. Health literacy was the most reported factor affecting learning, followed by anxiety and illness condition., Conclusions: Prior to the development of learner-centered education for patients and significant others, learning styles as well as factors affecting learning should be assessed in both patients and significant others., Practice Implications: The process of learning is complex, and it is a shared responsibility of both the learner and the educator., Competing Interests: Declaration of Competing Interest AJLM, SHW and YZ have no conflicts of interests to declare. MAS reports grants and/or fees from Lung Foundation Netherlands, Stichting Astma Bestrijding, Boehringer Ingelheim, AstraZeneca, Chiesi and TEVA, all paid to the institution and all outside the submitted work. DJAJ has received lectures fees from Boehringer Ingelheim, Chiesi (paid to institution) and Abbott (paid to institution) within the previous three years, outside the submitted work., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Background: Fatigue is frequently reported in people with a non-communicable chronic disease. More insight in the nature of this symptom may enhance targeted treatment of fatigue. In this study, we aimed to gain more insight in the prevalence of different types of fatigue and in current prescribed treatment strategies to reduce fatigue in non-communicable chronic diseases., Methods: People with non-communicable chronic diseases were contacted via public, non-profit, disease-specific health funds and patient associations and invited to complete a web-based survey. The survey included a general question about the experience ("Do you now or have you ever had complaints of fatigue?") and nature of fatigue (physically/mentally/combination), the Checklist Individual Strength-subscale subjective fatigue (CIS-Fatigue; 8-56 points), self-constructed questions for the distinction between physical and mental fatigue (both 3-21 points) and questions on prescribed treatments for fatigue., Results: In total, 4199 participants (77% females) completed the online survey. 3945 participants (94.0%) reported experiencing fatigue, of which 64.4% reported a combination of both physical and mental fatigue. Median CIS-Fatigue score was 41 (32-48) points, with 68% of the participants reporting severe fatigue (≥36 points). Median scores for physical and mental fatigue were 15 (11-18) and 12 (8-16) points, respectively. In 55% of the participants, fatigue was only occasionally or never discussed with the healthcare professional, and only 23% of the participants were prescribed a treatment for fatigue. Participants often reported no effect or even an increase in fatigue after treatment., Conclusions: Findings indicate that both physical and mental fatigue are often experienced simultaneously in people with non-communicable chronic diseases, but can also occur separately. Fatigue is often only occasionally or never discussed, let alone treated, highlighting the need to raise awareness among healthcare professionals. Future studies are needed to gain more insight in underlying factors of fatigue in non-communicable chronic diseases, its impact on daily life and development and evaluation of targeted treatment strategies.Key messages:Both physical and mental fatigue are frequently present in people with non-communicable chronic diseases.Fatigue is often only occasionally or never discussed during consultation with the physician, highlighting the need to raise awareness among healthcare professionals for adequate screening and evaluating of fatigue in people with non-communicable chronic diseases.Only less than a quarter of the people with non-communicable chronic diseases who reported to experience fatigue were prescribed a treatment for fatigue, which was often experienced as ineffective.

This study aimed to compare religiosity and religious coping (RC) between Brazilian and Dutch patients with chronic obstructive pulmonary disease (COPD) and to examine associations with physical and psychological health. Religiosity, RC, and physical and psychological health were cross-sectionally assessed in 161 patients with COPD (74 from Brazil and 87 from the Netherlands). Brazilian participants showed the greatest religiosity (p < 0.05), and weak correlations were observed between religiosity/RC and exercise capacity and quality of life (p < 0.05 for all analyses). Brazilian patients with COPD had higher religiosity than Dutch patients, and religiosity correlated with functional exercise capacity and quality of life., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1 ) delivery models, 2 ) comprehensive symptom assessment and management, 3 ) advance care planning and goals of care discussions, 4 ) caregiver support, 5 ) health disparities, 6 ) mass casualty events and emergency preparedness, and 7 ) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

A qualitative study was conducted to examine the experiences of informal caregivers of persons with dementia pertaining interprofessional collaboration with and among healthcare professionals in home care (HC), nursing homes and during home to nursing home transitions in palliative care. Semi-structured interviews were performed with bereaved informal caregivers. Data were analysed using a critical realist approach. The two main themes that emerged were: ( 1) Informal caregivers' roles in interprofessional collaboration with healthcare professionals and ( 2) Informal caregivers' perception of interprofessional collaboration among healthcare professionals . Informal caregivers' roles were identified in three collaboration processes: information exchange, care process and shared decision-making. Interprofessional collaboration among healthcare professionals was more perceptible on the collaboration outcome level (e.g. being up to date with the health status of the person with dementia; acting proactive, being adequate and consistent in the care process; and giving a warm welcome) than on the collaboration processes level (e.g. communicating and being involved in team processes). Our study revealed that intrinsic and extrinsic factors and interprofessional collaboration among healthcare professionals affected informal caregivers' collaborative roles. In summary, our study showed that informal caregivers have important roles as team members in the continuity and quality of palliative care for persons with dementia.

Recently, the call for chaplains to become 'research literate' has been recognized by various scholars as well as by practitioners in the field. However, papers that present and discuss the study design and provide guidance on the methodology of chaplaincy research are scarce. The aim of this study is to present the design of a mixed-methods study that investigates the impact of a spiritual care intervention on patients' spiritual wellbeing in palliative, home-based care. It reports on the steps needed to conduct such a study in chaplaincy care, and describes and discusses the study's research design, intervention, participants, sampling strategy, patient and public involvement, procedure, ethical considerations, data collection, and analysis. Presenting and discussing such a design is not only useful for researchers before conducting their study, in order to create transparency, but also for chaplains to improve their knowledge on research methodology and research literacy.