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3. Fundamentals of end-of-life communication as part of advance care planning from the perspective of nursing staff, older people, and family caregivers: a scoping review.

Author

Peerboom, F.B.A.L., Friesen-Storms, J.H., Coenegracht, B.J.E.G., Pieters, Sabine, Steen, J.T. van der, Janssen, D.J., Meijers, J.M.M., Peerboom, F.B.A.L., Friesen-Storms, J.H., Coenegracht, B.J.E.G., Pieters, Sabine, Steen, J.T. van der, Janssen, D.J., and Meijers, J.M.M.

Abstract

Contains fulltext : 297348.pdf (Publisher’s version ) (Open Access), 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 fou

Published
2023

4. Properdin produced by dendritic cells contributes to the activation of T cells

Author

Essen, M.F. van, Schlagwein, N., Gijlswijk-Janssen, D.J. van, Ruben, J.M., Kooten, C. van, and COMBAT Consortium

Subjects
Inflammation, Complement system, Properdin, T-Lymphocytes, Immunology, T cells, Humans, Immunology and Allergy, Hematology, RNA, Small Interfering, Kidney Transplantation, Dendritic cells, Cells, Cultured
Abstract

The complement system does not only play an important role in the defence against microorganism and pathogens, but also contributes to the regulation of innate and adaptive immunity. Especially activation fragments C3a and C5a and complement activation at the interface of antigen presenting cell (APC) and T cell, were shown to have a role in T cell activation and proliferation. Whereas most complement factors are produced by the liver, properdin, a positive regulator of the C3 convertase, is mainly produced by myeloid cells. Here we show that properdin can be detected in myeloid cell infiltrate during human renal allograft rejection. In vitro, properdin is produced and secreted by human immature dendritic cells (iDCs), which is further increased by CD40-L-matured DCs (mDCs). Transfection with a specific properdin siRNA reduced properdin secretion by iDCs and mDCs, without affecting the expression of co-stimulatory markers CD80 and CD86. Co-culture of properdin siRNA-transfected iDCs and mDCs with human allogeneic T cells resulted in reduced T cell proliferation, especially under lower DC-T cell ratio's (1:30 and 1:90 ratio). In addition, T cell cytokines were altered, including a reduced TNF-alpha and IL-17 secretion by T cells co-cultured with properdin siRNA-transfected iDCs. Taken together, these results indicate a local role for properdin during the interaction of DCs and allogeneic T cells, contributing to the shaping of T cell proliferation and activation.

Published
2022

6. What to consider when implementing a tool for timely recognition of palliative care needs in heart failure: a context-based qualitative study

Author

Ament, S.M., Broek, Lisette M. van den, Beuken-van Everdingen, Marieke H.J. Van den, Boyne, J.J., Maessen, Jose M.C., Bekkers, Sebastiaan C.A.M., Bellersen, L., Engels, Y., Janssen, D.J., Ament, S.M., Broek, Lisette M. van den, Beuken-van Everdingen, Marieke H.J. Van den, Boyne, J.J., Maessen, Jose M.C., Bekkers, Sebastiaan C.A.M., Bellersen, L., Engels, Y., and Janssen, D.J.

Abstract

Contains fulltext : 243854.pdf (Publisher’s version ) (Open Access)

Published
2022

9. Initial properdin binding contributes to alternative pathway activation at the surface of viable and necrotic cells

Author

Essen, M.F. van, Schlagwein, N., Hoven, E.M.P. van den, Gijlswijk-Janssen, D.J. van, Lubbers, R., Bos, R.M. van den, Born, J. van den, Ruben, J.M., Trouw, L.A., Kooten, C. van, COMBAT Consortium, Groningen Institute for Organ Transplantation (GIOT), and Groningen Kidney Center (GKC)

Subjects
EXPRESSION, FACTOR-H, Complement system, Immunology, Complement Pathway, Alternative, INHIBITION, chemical and pharmacologic phenomena, Complement C3-C5 Convertases, Complement Membrane Attack Complex, urologic and male genital diseases, DENDRITIC CELLS, POSITIVE REGULATOR, Necrosis, Alternative pathway, DIRECTED COMPLEMENT ACTIVATION, Immunology and Allergy, Humans, Complement Activation, Properdin, Macrophages, COMPONENTS, SALIVARY PROTEIN, C3B, female genital diseases and pregnancy complications, PATTERN-RECOGNITION, Viable, death cells
Abstract

Properdin, the only known positive regulator of the complement system, stabilizes the C3 convertase, thereby increasing its half-life. In contrast to most other complement factors, properdin is mainly produced extrahepatically by myeloid cells. Recent data suggest a role for properdin as a pattern recognition molecule. Here, we confirmed previous findings of properdin binding to different necrotic cells including Jurkat T cells. Binding can occur independent of C3, as demonstrated by HAP-1 C3 KO cells, excluding a role for endogenous C3. In view of the cellular source of properdin, interaction with myeloid cells was examined. Properdin bound to the surface of viable monocyte-derived pro- and anti-inflammatory macrophages, but not to DCs. Binding was demonstrated for purified properdin as well as fractionated P2, P3, and P4 properdin oligomers. Binding contributed to local complement activation as determined by C3 and C5b-9 deposition on the cell surfaces and seems a prerequisite for alternative pathway activation. Interaction of properdin with cell surfaces could be inhibited with the tick protein Salp20 and by different polysaccharides, depending on sulfation and chain length. These data identify properdin as a factor interacting with different cell surfaces, being either dead or alive, contributing to the local stimulation of complement activation.

Published
2021

10. [The nurse's role in the process of advance care planning]

Author

Bolt, S.R., Steen, J.T. van der, Schols, J.M.G.A., Zwakhalen, S.M.G., Janssen, D.J., and Meijers, J.M.M.

Subjects
animal structures, stomatognathic system, bacteria, lipids (amino acids, peptides, and proteins), humanities, Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18]
Abstract

Item does not contain fulltext The COVID-19 pandemic and its impact on older and frail people underlines the importance of advance care planning (ACP). ACP is a dynamic communication process involving patients, families and healthcare providers, which serves to discuss and document wishes and goals for future care. Currently, ACP practice is often suboptimal. This implies that important decisions about care and treatment may need to be made acutely in crises. Many factors contribute to suboptimal ACP practice. One such factor is ambiguity regarding roles and responsibilities of different disciplines in the ACP-process. The perception that having ACP conversations is primarily a physician's task is a misconception. Specific skills that could contribute to a holistic and person-centered ACP-process are largely lacking in nursing curricula and therefore, may be insufficient and under-utilized. For instance, nursing staff could involve persons in conversations about meaning, quality of life, loss and grief as a part of ACP. Moreover, they may communicate a patient's wishes to other healthcare providers including physicians. Acknowledgement of this potential role, by physicians as well as by nursing staff themselves, is needed for ACP to become a truly interprofessional process.

Published
2021
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11. Bioactive trace metals and their isotopes as paleoproductivity proxies: An assessment using GEOTRACES‐era data

Author

Horner, T.j., Little, S.h., Conway, T.m., Farmer, J.r., Hertzberg, J.e., Janssen, D.j., Lough, A.j.m., Mckay, J., Tessin, A., Galer, S.j.g., Jaccard, S.l., Lacan, F., Paytan, A., Wuttig, K., Members, Geotraces–pages Biological Producti, Horner, T.j., Little, S.h., Conway, T.m., Farmer, J.r., Hertzberg, J.e., Janssen, D.j., Lough, A.j.m., Mckay, J., Tessin, A., Galer, S.j.g., Jaccard, S.l., Lacan, F., Paytan, A., Wuttig, K., and Members, Geotraces–pages Biological Producti

Abstract

Phytoplankton productivity and export sequester climatically significant quantities of atmospheric carbon dioxide as particulate organic carbon through a suite of processes termed the biological pump. How the biological pump operated in the past is therefore important for understanding past atmospheric carbon dioxide concentrations and Earth’s climate history. However, reconstructing the history of the biological pump requires proxies. Due to their intimate association with biological processes, several bioactive trace metals and their isotopes are potential proxies for past phytoplankton productivity, including: iron, zinc, copper, cadmium, molybdenum, barium, nickel, chromium, and silver. Here we review the oceanic distributions, driving processes, and depositional archives for these nine metals and their isotopes based on GEOTRACES-era datasets. We offer an assessment of the overall maturity of each isotope system to serve as a proxy for diagnosing aspects of past ocean productivity and identify priorities for future research. This assessment reveals that cadmium, barium, nickel, and chromium isotopes offer the most promise as tracers of paleoproductivity, whereas iron, zinc, copper, and molybdenum do not. Too little is known about silver to make a confident determination. Intriguingly, the elements that are least sensitive to productivity may be used to trace other aspects of ocean chemistry, such as nutrient sources, particle scavenging, organic complexation, and ocean redox state. These complementary sensitivities suggest new opportunities for combining perspectives from multiple proxies that will ultimately enable painting a more complete picture of marine paleoproductivity, biogeochemical cycles, and Earth’s climate history.

Published
2021
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12. Effectiveness and implementation of palliative care interventions for patients with chronic obstructive pulmonary disease: A systematic review

Author

Broese, J.M., Heij, A.H. de, Janssen, D.J., Skora, J.A., Kerstjens, H.A., Chavannes, N.H., Engels, Y., Kleij, R.M.J.J. van der, Broese, J.M., Heij, A.H. de, Janssen, D.J., Skora, J.A., Kerstjens, H.A., Chavannes, N.H., Engels, Y., and Kleij, R.M.J.J. van der

Abstract

Contains fulltext : 232418.pdf (Publisher’s version ) (Open Access), BACKGROUND: Although guidelines recommend palliative care for patients with chronic obstructive pulmonary disease, there is little evidence for the effectiveness of palliative care interventions for this patient group specifically. AIM: To describe the characteristics of palliative care interventions for patients with COPD and their informal caregivers and review the available evidence on effectiveness and implementation outcomes. DESIGN: Systematic review and narrative synthesis (PROSPERO CRD42017079962). DATA SOURCES: Seven databases were searched for articles reporting on multi-component palliative care interventions for study populations containing ⩾30% patients with COPD. Quantitative as well as qualitative and mixed-method studies were included. Intervention characteristics, effect outcomes, implementation outcomes and barriers and facilitators for successful implementation were extracted and synthesized qualitatively. RESULTS: Thirty-one articles reporting on twenty unique interventions were included. Only four interventions (20%) were evaluated in an adequately powered controlled trial. Most interventions comprised of longitudinal palliative care, including care coordination and comprehensive needs assessments. Results on effectiveness were mixed and inconclusive. The feasibility level varied and was context-dependent. Acceptability of the interventions was high; having someone to call for support and education about breathlessness were most valued characteristics. Most frequently named barriers were uncertainty about the timing of referral due to the unpredictable disease trajectory (referrers), time availability (providers) and accessibility (patients). CONCLUSION: Little high-quality evidence is yet available on the effectiveness and implementation of palliative care interventions for patients with COPD. There is a need for well-conducted effectiveness studies and adequate process evaluations using standardized methodologies to create higher-level evidenc

Published
2021

13. Effectiveness of Home-Based Occupational Therapy on COPM Performance and Satisfaction Scores in Patients with COPD

Author

Koolen, E.H., Spruit, M.A., Man, M. de, Antons, J.C., Nijhuis, E., Nakken, N., Janssen, D.J., Hul, A.J. van 't, Koolen, E.H., Spruit, M.A., Man, M. de, Antons, J.C., Nijhuis, E., Nakken, N., Janssen, D.J., and Hul, A.J. van 't

Abstract

Contains fulltext : 242601.pdf (Publisher’s version ) (Closed access), BACKGROUND.: Occupational therapy (OT) may be an important intervention in patients with COPD, but studies show conflicting results. PURPOSE.: To evaluate the effectiveness of home-based monodisciplinary OT in COPD patients. METHOD.: We conducted an observational clinical study. Main outcomes were the mean differences in the Canadian Occupational Performance Measure (COPM) performance and satisfaction scores, pre and post intervention. FINDINGS.: Pre- and postintervention data were obtained from 41 patients. Statistically significant increases were observed in COPM performance (5.0 +/- 1.1 versus 6.9 +/- 0.9; P<0.001) and satisfaction (4.6 +/- 1.3 versus 6.9 +/- 1.0; P<0.001). The most frequently reported occupational performance problems were found in the domains of productivity (47%) and mobility (40%), fewer in self-care (10%) and the least in leisure (3%). IMPLICATIONS.: Home-based monodisciplinary OT can contribute significantly to the improvement of daily functioning of patients with COPD. OT should therefore be considered more often as part of the integrated management of these patients.

Published
2021

14. The prevalence and related factors of fatigue in patients with COPD: a systematic review

Author

Ebadi, Z., Goërtz, Y.M.J., Herck, M. Van, Janssen, D.J., Spruit, M.A., Burtin, C., Thong, M.S.Y., Muris, J., Otker, J., Looijmans, M., Vlasblom, C., Bastiaansen, J., Prins, J.B., Wouters, E.F.M., Vercoulen, J.H.M.M., Peters, J., Ebadi, Z., Goërtz, Y.M.J., Herck, M. Van, Janssen, D.J., Spruit, M.A., Burtin, C., Thong, M.S.Y., Muris, J., Otker, J., Looijmans, M., Vlasblom, C., Bastiaansen, J., Prins, J.B., Wouters, E.F.M., Vercoulen, J.H.M.M., and Peters, J.

Abstract

Contains fulltext : 242634.pdf (Publisher’s version ) (Open Access), BACKGROUND: Fatigue is a distressing symptom in patients with COPD. Little is known about the factors that contribute to fatigue in COPD. This review summarises existing knowledge on the prevalence of fatigue, factors related to fatigue and the instruments most commonly used to assess fatigue in COPD. METHODS: Pubmed, PsycINFO, EMBASE, Cochrane and CINAHL databases were searched for studies from inception up to 7 January 2020 using the medical subject headings "COPD" and "Fatigue". Studies were reviewed in accordance with PRISMA guidelines. RESULTS: 196 studies were evaluated. The prevalence of fatigue ranged from 17-95%. Age (r=-0.23 to r=0.27), sex (r=0.11), marital status (r=-0.096), dyspnoea (r=0.13 to r=0.78), forced expiatory volume in 1 s % predicted (r=-0.55 to r=-0.076), number of exacerbations (r=0.27 to r=0.38), number of comorbidities (r=0.10), number of medications (r=0.35), anxiety (r=0.36 to r=0.61), depression (r=0.41 to r=0.66), muscle strength (r=-0.78 to r=-0.45), functional capacity (r=-0.77 to r=-0.14) and quality of life (r=0.48 to r=0.77) showed significant associations with fatigue. CONCLUSIONS: Fatigue is a prevalent symptom in patients with COPD. Multiple physical and psychological factors seem to be associated with fatigue. Future studies are needed to evaluate these underlying factors in integral analyses in samples of patients with COPD.

Published
2021

15. Understanding and Being Understood: Information and Care Needs of 2113 Patients With Confirmed or Suspected COVID-19

Author

Houben-Wilke, S., Delbressine, J.M., Vaes, A.W., Goërtz, Y.M.J., Meys, R., Machado, F.V.C., Herck, M. Van, Burtin, C., Posthuma, R., Franssen, F.M.E., Loon, N.H. van, Hajian, B., Vijlbrief, H., Spies, Y., Hul, A.J. van 't, Janssen, D.J., Spruit, M.A., Houben-Wilke, S., Delbressine, J.M., Vaes, A.W., Goërtz, Y.M.J., Meys, R., Machado, F.V.C., Herck, M. Van, Burtin, C., Posthuma, R., Franssen, F.M.E., Loon, N.H. van, Hajian, B., Vijlbrief, H., Spies, Y., Hul, A.J. van 't, Janssen, D.J., and Spruit, M.A.

Abstract

Contains fulltext : 242640.pdf (Publisher’s version ) (Open Access), To become a proactive and informed partner in postacute coronavirus disease 2019 (COVID-19) management, patients need to have the knowledge, skills, and confidence to self-manage COVID-19-related health challenges. Due to several restrictions and consequently social isolation, online platforms and forums where people can share information and experiences became more popular and influential. Therefore, this study aimed to identify perceived information needs and care needs of members of 2 Facebook groups for patients with COVID-19 and persistent complaints in the Netherlands and Belgium and patients with COVID-19 who registered at a website of the Lung Foundation Netherlands. Besides demographics and clinical characteristics, the degree of satisfaction with care during and after the infection as well as satisfaction with available information were assessed. Open text fields revealed specific information needs which were summarized. Patients with confirmed or suspected COVID-19 perceive various unmet needs varying from specific information needs (eg, information about permanent lung damage) to general needs (eg, being heard and understood). These data lead to several recommendations to improve care for patients with COVID-19 and justify further development of online platforms specifically addressing these unmet needs.

Published
2021

16. Fatigue in patients with chronic disease: results from the population-based Lifelines Cohort Study

Author

Goertz, Yvonne M.J., Braamse, Annemarie M.J., Spruit, M.A., Janssen, D.J., Ebadi, Z., Herck, M. Van, Peters, J., Vercoulen, J.H.M.M., Rosmalen, Judith G.M., Knoop, H., Goertz, Yvonne M.J., Braamse, Annemarie M.J., Spruit, M.A., Janssen, D.J., Ebadi, Z., Herck, M. Van, Peters, J., Vercoulen, J.H.M.M., Rosmalen, Judith G.M., and Knoop, H.

Abstract

Contains fulltext : 239975.pdf (Publisher’s version ) (Open Access)

Published
2021

17. Practical nursing recommendations for palliative care for people with dementia living in long-term care facilities during the COVID-19 pandemic: A rapid scoping review

Author

Bolt, S.R., Steen, J.T. van der, Mujezinović, I., Janssen, D.J., Schols, J.M.G.A., Zwakhalen, S.M.G., Khemai, C., Knapen, E., Dijkstra, L., Meijers, J.M.M., Bolt, S.R., Steen, J.T. van der, Mujezinović, I., Janssen, D.J., Schols, J.M.G.A., Zwakhalen, S.M.G., Khemai, C., Knapen, E., Dijkstra, L., and Meijers, J.M.M.

Abstract

Contains fulltext : 232493.pdf (Publisher’s version ) (Open Access), BACKGROUND: The acute nature of COVID-19 and its effects on society in terms of social distancing and quarantine regulations affect the provision of palliative care for people with dementia who live in long-term care facilities. The current COVID-19 pandemic poses a challenge to nursing staff, who are in a key position to provide high-quality palliative care for people with dementia and their families. OBJECTIVE: To formulate practice recommendations for nursing staff with regard to providing palliative dementia care in times of COVID-19. DESIGN AND METHOD: A rapid scoping review following guidelines from the Joanna Briggs Institute. Eligible papers focused on COVID-19 in combination with palliative care for older people or people with dementia and informed practical nursing recommendations for long-term care facilities. After data extraction, we formulated recommendations covering essential domains in palliative care adapted from the National Consensus Project's Clinical Practice Guidelines for Quality Palliative Care. DATA SOURCES: We searched the bibliographic databases of PubMed, CINAHL and PsycINFO for academic publications. We searched for grey literature using the search engine Google. Moreover, we included relevant letters and editorials, guidelines, web articles and policy papers published by knowledge and professional institutes or associations in dementia and palliative care. RESULTS: In total, 23 documents (7 (special) articles in peer-reviewed journals, 6 guides, 4 letters to editors, 2 web articles (blogs), 2 reports, a correspondence paper and a position paper) were included. The highest number of papers informed recommendations under the domains 'advance care planning' and 'psychological aspects of care'. The lowest number of papers informed the domains 'ethical care', 'care of the dying', 'spiritual care' and 'bereavement care'. We found no papers that informed the 'cultural aspects of care' domain. CONCLUSION: Literature that focuses specifically o

Published
2021

18. Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review

Author

Ament, S.M., Couwenberg, I.M., Boyne, J.J., Kleijnen, J., Stoffers, H.E., Beuken, M.H. van den, Engels, Y., Bellersen, L., Janssen, D.J., Ament, S.M., Couwenberg, I.M., Boyne, J.J., Kleijnen, J., Stoffers, H.E., Beuken, M.H. van den, Engels, Y., Bellersen, L., and Janssen, D.J.

Abstract

Contains fulltext : 232541.pdf (Publisher’s version ) (Open Access), BACKGROUND: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. AIM: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. DESIGN: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools' development, evaluation, feasibility, and implementation was sought and described. DATA SOURCES: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. RESULTS: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. CONCLUSION: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.

Published
2021

19. Fatigue in patients with chronic disease: results from the population-based Lifelines Cohort Study

Author

Goertz, Y.M.J., Braamse, Annemarie M.J., Spruit, M.A., Janssen, D.J., Ebadi, Z., Herck, M. Van, Peters, J., Vercoulen, J.H.M.M., Rosmalen, Judith G.M., Knoop, H., Goertz, Y.M.J., Braamse, Annemarie M.J., Spruit, M.A., Janssen, D.J., Ebadi, Z., Herck, M. Van, Peters, J., Vercoulen, J.H.M.M., Rosmalen, Judith G.M., and Knoop, H.

Abstract

Contains fulltext : 239975.pdf (Publisher’s version ) (Open Access)

Published
2021

20. Care Dependency in Non-Hospitalized Patients with COVID-19

Author

Vaes, A.W., Machado, F.V.C., Meys, R., Delbressine, J.M., Goertz, Y.M.J., Herck, M. Van, Houben-Wilke, S., Franssen, F.M.E., Vijlbrief, H., Spies, Y., Hul, A.J. van 't, Burtin, C., Janssen, D.J., Spruit, Martijn A., Vaes, A.W., Machado, F.V.C., Meys, R., Delbressine, J.M., Goertz, Y.M.J., Herck, M. Van, Houben-Wilke, S., Franssen, F.M.E., Vijlbrief, H., Spies, Y., Hul, A.J. van 't, Burtin, C., Janssen, D.J., and Spruit, Martijn A.

Abstract

Contains fulltext : 225411.pdf (publisher's version ) (Open Access), BACKGROUND: A large sample of "mild" COVID-19 patients still experience multiple symptoms months after being infected. These persistent symptoms are associated with many clinically relevant outcomes, including poor health status and impaired functional status. To date, no information is available about care dependency. Therefore, we aimed to explore the level of care dependency and the need for assistance with personal care in non-hospitalized COVID-19 patients. METHODS: Members of two Facebook groups for COVID-19 patients with persistent complaints in The Netherlands and Belgium, and from a panel of people who registered at a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, and symptoms. In addition, patients were asked about their dependence on others for personal care before and after the infection. The level of care dependency was assessed with the Care Dependency Scale (CDS) in members of the Belgian Facebook group (n = 210). RESULTS: The data of 1837 non-hospitalized patients (86% women; median (IQR) age: 47 (38-54)) were analyzed. Only a small proportion of patients needed help with personal care before COVID-19, but the care need increased significantly after the infection (on average 79 ± 17 days after the onset of symptoms; 7.7% versus 52.4%, respectively; p < 0.05). The patients had a median (IQR) CDS score of 72 (67-75) points, and 31% of the patients were considered as care-dependent (CDS score ≤ 68 points). CONCLUSIONS: COVID-19 has an important impact on care dependency in non-hospitalized patients. About three months after the onset of symptoms, a considerable proportion of non-hospitalized patients were to some degree dependent on others for personal care. This indicates that the impact of COVID-19 on patients' daily lives is tremendous, and more attention is needed to identify optimal treatment strategies to restore patients' independency.

Published
2020

21. Persistent symptoms 3 months after a SARS-CoV-2 infection: the post-COVID-19 syndrome?

Author

Goërtz, Y.M.J., Herck, M. Van, Delbressine, J.M., Vaes, A.W., Meys, R., Machado, F.V.C., Houben-Wilke, S., Burtin, C., Posthuma, R., Franssen, F.M.E., Loon, N. van, Hajian, B., Spies, Y., Vijlbrief, H., Hul, A.J. van 't, Janssen, D.J., Spruit, Martijn A., Goërtz, Y.M.J., Herck, M. Van, Delbressine, J.M., Vaes, A.W., Meys, R., Machado, F.V.C., Houben-Wilke, S., Burtin, C., Posthuma, R., Franssen, F.M.E., Loon, N. van, Hajian, B., Spies, Y., Vijlbrief, H., Hul, A.J. van 't, Janssen, D.J., and Spruit, Martijn A.

Abstract

Contains fulltext : 229916.pdf (publisher's version ) (Open Access), BACKGROUND: Many 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. METHODS: A 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). RESULTS: Overall, 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%). CONCLUSION: In 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.

Published
2020

22. Severe Fatigue is Highly Prevalent in Patients with IPF or Sarcoidosis

Author

Bloem, Ada E.M., Mostard, Remy L.M., Stoot, Naomi, Vercoulen, J.H., Peters, J.B., Janssen, D.J., Custers, Jan W.H., Spruit, M.A., Bloem, Ada E.M., Mostard, Remy L.M., Stoot, Naomi, Vercoulen, J.H., Peters, J.B., Janssen, D.J., Custers, Jan W.H., and Spruit, M.A.

Abstract

Contains fulltext : 219093.pdf (publisher's version ) (Open Access)

Published
2020

23. Profiling of Patients with COPD for Adequate Referral to Exercise-Based Care: The Dutch Model

Author

Spruit, Martijn A., Hul, A.J. van 't, Vreeken, H.L., Beekman, E., Post, M.H.T., Meerhoff, G.A., Valk, A.L. Van der, Zagers, C., Sillen, M.J., Vooijs, M., Custers, J, Muris, J., Langer, D., Donkers, J., Bregman, M., Tissink, L., Bergkamp, E., Wempe, J., Houben-Wilke, S., Augustin, I.M., Vaate, E. Bij de, Franssen, F.F.J., Ranst, D. van, Vaart, H. van der, Antons, J.C., Doormaal, M. Van, Koolen, E.H., Wees, P.J. van der, Snippenburg, R. Van, Janssen, D.J., Simons, S., Spruit, Martijn A., Hul, A.J. van 't, Vreeken, H.L., Beekman, E., Post, M.H.T., Meerhoff, G.A., Valk, A.L. Van der, Zagers, C., Sillen, M.J., Vooijs, M., Custers, J, Muris, J., Langer, D., Donkers, J., Bregman, M., Tissink, L., Bergkamp, E., Wempe, J., Houben-Wilke, S., Augustin, I.M., Vaate, E. Bij de, Franssen, F.F.J., Ranst, D. van, Vaart, H. van der, Antons, J.C., Doormaal, M. Van, Koolen, E.H., Wees, P.J. van der, Snippenburg, R. Van, Janssen, D.J., and Simons, S.

Abstract

Contains fulltext : 225497.pdf (Publisher’s version ) (Open Access), A loss of physical functioning (i.e., a low physical capacity and/or a low physical activity) is a common feature in patients with chronic obstructive pulmonary disease (COPD). To date, the primary care physiotherapy and specialized pulmonary rehabilitation are clearly underused, and limited to patients with a moderate to very severe degree of airflow limitation (GOLD stage 2 or higher). However, improved referral rates are a necessity to lower the burden for patients with COPD and for society. Therefore, a multidisciplinary group of healthcare professionals and scientists proposes a new model for referral of patients with COPD to the right type of exercise-based care, irrespective of the degree of airflow limitation. Indeed, disease instability (recent hospitalization, yes/no), the burden of disease (no/low, mild/moderate or high), physical capacity (low or preserved) and physical activity (low or preserved) need to be used to allocate patients to one of the six distinct patient profiles. Patients with profile 1 or 2 will not be referred for physiotherapy; patients with profiles 3-5 will be referred for primary care physiotherapy; and patients with profile 6 will be referred for screening for specialized pulmonary rehabilitation. The proposed Dutch model has the intention to get the right patient with COPD allocated to the right type of exercise-based care and at the right moment.

Published
2020

27. Fatigue is highly prevalent in patients with COPD and correlates poorly with the degree of airflow limitation

Author

Goertz, Y.M.J., Spruit, M.A., Hul, A.J. van 't, Peters, J.B., Herck, M. Van, Nakken, N., Djamin, R.S., Burtin, C., Thong, M.S.Y., Coors, A., Meertens-Kerris, Y., Wouters, E.F.M., Prins, J.B., Franssen, F.M.E., Muris, J.W., Vanfleteren, L., Sprangers, M.A.G., Janssen, D.J., Vercoulen, J.H.M.M., Goertz, Y.M.J., Spruit, M.A., Hul, A.J. van 't, Peters, J.B., Herck, M. Van, Nakken, N., Djamin, R.S., Burtin, C., Thong, M.S.Y., Coors, A., Meertens-Kerris, Y., Wouters, E.F.M., Prins, J.B., Franssen, F.M.E., Muris, J.W., Vanfleteren, L., Sprangers, M.A.G., Janssen, D.J., and Vercoulen, J.H.M.M.

Abstract

Contains fulltext : 208497.pdf (publisher's version ) (Open Access), BACKGROUND: The objective of this study was to compare fatigue levels between subjects with and without COPD, and to investigate the relationship between fatigue, demographics, clinical features and disease severity. METHODS: A total of 1290 patients with COPD [age 65 +/- 9 years, 61% male, forced expiratory volume in 1 s (FEV1) 56 +/- 19% predicted] and 199 subjects without COPD (age 63 +/- 9 years, 51% male, FEV1 112 +/- 21% predicted) were assessed for fatigue (Checklist Individual Strength-Fatigue), demographics, clinical features and disease severity. RESULTS: Patients with COPD had a higher mean fatigue score, and a higher proportion of severe fatigue (CIS-Fatigue score 35 +/- 12 versus 21 +/- 11 points, p < 0.001; 49 versus 10%, p < 0.001). Fatigue was significantly, but poorly, associated with the degree of airflow limitation [FEV1 (% predicted) Spearman correlation coefficient = -0.08, p = 0.006]. Multiple regression indicated that 30% of the variance in fatigue was explained by the predictor variables. CONCLUSIONS: Severe fatigue is prevalent in half of the patients with COPD, and correlates poorly with the degree of airflow limitation. Future studies are needed to better understand the physical, psychological, behavioural, and systemic factors that precipitate or perpetuate fatigue in COPD.

Published
2019

28. Culture medium used during small interfering RNA (siRNA) transfection determines the maturation status of dendritic cells

Author

Essen, M.F. van, Schlagwein, N., Gijlswijk-Janssen, D.J. van, Anholts, J.D.H., Eikmans, M., Ruben, J.M., Kooten, C. van, and COMBAT Consortium

Subjects
0301 basic medicine, Small interfering RNA, Cell type, T-Lymphocytes, T cell, Immunology, Lymphocyte Activation, Transfection, Dendritic cells, 03 medical and health sciences, RNA interference, 0302 clinical medicine, medicine, Humans, Immunology and Allergy, Gene silencing, RNA, Small Interfering, Cells, Cultured, Chemistry, Cell Differentiation, Dendritic cell, Culture Media, Cell biology, 030104 developmental biology, medicine.anatomical_structure, Cell culture, siRNA, Cell maturation, 030215 immunology
Abstract

Gene silencing using small interfering ribonucleic acids (siRNA) is a powerful method to interfere with gene expression, allowing for the functional exploration of specific genes. siRNA interference can be applied in both cell lines, as well as in primary, non-dividing cell types like dendritic cells. However, the efficacy in different cell types is variable and requires optimization. Here, we showed that the type of culture medium used during lipid-based siRNA-mediated transfection acts as a critical factor, affecting dendritic cell activation. Transfection of immature monocyte-derived dendritic cells in RPMI medium, but not in IMDM, showed increased transcript levels of pro-inflammatory cytokines. Moreover, the expression of co-stimulatory molecules was enhanced, thereby increasing the T cell stimulatory capacity. Our data demonstrates that the choice of medium should be critically examined as one of the variables while optimizing cell transfection.

Published
2020
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30. Fatigue is Highly Prevalent in Patients with Asthma and Contributes to the Burden of Disease

Author

Herck, M. Van, Spruit, M.A., Burtin, C., Djamin, R., Antons, J.C., Goertz, Y.M.J., Ebadi, Z., Janssen, D.J., Vercoulen, J.H.M.M., Peters, J.B., Thong, M.S.Y., Otker, J., Coors, A., Sprangers, M.A.G., Muris, J.W., Wouters, E.F., Hul, A.J. van 't, Herck, M. Van, Spruit, M.A., Burtin, C., Djamin, R., Antons, J.C., Goertz, Y.M.J., Ebadi, Z., Janssen, D.J., Vercoulen, J.H.M.M., Peters, J.B., Thong, M.S.Y., Otker, J., Coors, A., Sprangers, M.A.G., Muris, J.W., Wouters, E.F., and Hul, A.J. van 't

Abstract

Contains fulltext : 200107.pdf (Publisher’s version ) (Open Access), The 2018 update of the Global Strategy for Asthma Management and Prevention does not mention fatigue-related symptoms. Nevertheless, patients with asthma frequently report tiredness, lack of energy, and daytime sleepiness. Quantitative research regarding the prevalence of fatigue in asthmatic patients is lacking. This retrospective cross-sectional study of outpatients with asthma upon referral to a chest physician assessed fatigue (Checklist Individual Strength-Fatigue (CIS-Fatigue)), lung function (spirometry), asthma control (Asthma Control Questionnaire (ACQ)), dyspnea (Medical Research Council (MRC) scale), exercise capacity (six-minute walk test (6MWT)), and asthma-related Quality-of-Life (QoL), Asthma Quality of Life Questionnaire (AQLQ) during a comprehensive health-status assessment. In total, 733 asthmatic patients were eligible and analyzed (47.4 +/- 16.3 years, 41.1% male). Severe fatigue (CIS-Fatigue >/= 36 points) was detected in 62.6% of patients. Fatigue was not related to airflow limitation (FEV1, rho = -0.083); was related moderately to ACQ (rho = 0.455), AQLQ (rho = -0.554), and MRC (rho = 0.435; all p-values < 0.001); and was related weakly to 6MWT (rho = -0.243, p < 0.001). In stepwise multiple regression analysis, 28.9% of variance in fatigue was explained by ACQ (21.0%), MRC (6.5%), and age (1.4%). As for AQLQ, 42.2% of variance was explained by fatigue (29.8%), MRC (8.6%), exacerbation rate (2.6%), and age (1.2%). Severe fatigue is highly prevalent in asthmatic patients; it is an important determinant of disease-specific QoL and a crucial yet ignored patient-related outcome in patients with asthma.

Published
2018

31. Determination of Mn, Fe, Ni, Cu, Zn, Cd and Pb in seawater using offline extraction and triple quadrupole ICP-MS/MS

Author

Jackson, Sarah L., Spence, J., Janssen, D.J., Ross, A.R.S., Cullen, J.T., Jackson, Sarah L., Spence, J., Janssen, D.J., Ross, A.R.S., and Cullen, J.T.

Abstract

Highly resolved temporal and spatial distributions of trace elements in ocean water can provide insight into ocean processes but carry a significant analytical demand which requires methods that combine accuracy and precision with high sample throughput. Here a multi-element method is presented which combines the commercially-available seaFAST preconcentration system with ICP-MS/MS for the analysis of Mn, Fe, Ni, Cu, Zn, Cd and Pb in seawater. Samples (20 mL or 40 mL) are loaded on to a chelation resin column and trace metals eluted into 2.5 mL of 1.6 N HNO3. Analysis of the eluate was carried out by ICP-MS/MS, which combines two mass-selecting quadrupoles separated by an octopole collision/reaction cell. The collision/reaction cell was pressurized with O2 gas for the analysis of Mn, Ni, Cu, Cd and Pb and H2 gas for the analysis of Fe and Zn, which removed common interferences (e.g. ArO+ on 56Fe and MoO+ on Cd) yet maintained the highest instrument sensitivity across the entire mass range. Measured blanks and detection limits were ≤0.050 nmol L−1 levels, except for the Fe (blank 0.14 nmol L−1) and were suitable for open-ocean seawater analysis. We report results for the certified reference material NASS-6, consensus reference standards SAFe S and SAFe D and depth profiles of trace metals from the Arctic Ocean, collected as part of the Canadian GEOTRACES program.

Published
2018

33. An official American Thoracic Society/European Respiratory Society statement: key concepts and advances in pulmonary rehabilitation

Author

Spruit, M.A., Singh, S.J., Garvey, C., ZuWallack, R., Nici, L., Rochester, C., Hill, K., Holland, A.E., Lareau, S.C., Man, W.D., Pitta, F., Sewell, L., Raskin, J., Bourbeau, J., Crouch, R., Franssen, F.M., Casaburi, R., Vercoulen, J.H.M.M., Vogiatzis, I., Gosselink, R., Clini, E.M., Effing, T.W., Maltais, F., Palen, J.A.M. van der, Troosters, T., Janssen, D.J., Collins, E., Garcia-Aymerich, J., Brooks, D., Fahy, B.F., Puhan, M.A., Hoogendoorn, M., Garrod, R., Schols, A.M.W.J., Carlin, B., Benzo, R., Meek, P., Morgan, M., Molken, M.P. Rutten-van, Ries, A.L., Make, B., Goldstein, R.S., Dowson, C.A., Brozek, J.L., Donner, C.F., Wouters, E.F., Rehabilitation, A.E.T.F.o.P., RS: CAPHRI School for Public Health and Primary Care, RS: NUTRIM - R3 - Chronic inflammatory disease and wasting, Family Medicine, Pulmonologie, University of Zurich, Faculty of Behavioural, Management and Social Sciences, and Health Economics (HE)

Subjects
Pulmonary and Respiratory Medicine, Lung Diseases, medicine.medical_specialty, INTENSIVE-CARE-UNIT, Exacerbation, medicine.medical_treatment, MEDLINE, METIS-300801, 610 Medicine & health, AIR-FLOW LIMITATION, Motor Activity, Critical Care and Intensive Care Medicine, outcomes, Pulmonary Disease, Chronic Obstructive, Quality of life (healthcare), exacerbation, QUALITY-OF-LIFE, 6-MINUTE WALK DISTANCE, MINIMAL IMPORTANT DIFFERENCE, medicine, Humans, COPD, Pulmonary rehabilitation, FUNCTIONAL EXERCISE CAPACITY, INSPIRATORY MUSCLE STRENGTH, Intensive care medicine, Lung, NEUROMUSCULAR ELECTRICAL-STIMULATION, Chronic care, Rehabilitation, business.industry, behavior, IR-88633, Respiratory disease, Psychological determinants of chronic illness [NCEBP 8], 10060 Epidemiology, Biostatistics and Prevention Institute (EBPI), RANDOMIZED CONTROLLED-TRIAL, medicine.disease, pulmonary rehabilitation, Bronchodilator Agents, Exercise Therapy, Pathogenesis and modulation of inflammation [N4i 1], 2740 Pulmonary and Respiratory Medicine, Physical therapy, business, 2706 Critical Care and Intensive Care Medicine, CRITICALLY-ILL PATIENTS
Abstract

Background: Pulmonary rehabilitation is recognized as a core component of the management of individuals with chronic respiratory disease. Since the 2006 American Thoracic Society (ATS)/European Respiratory Society (ERS) Statement on Pulmonary Rehabilitation, there has been considerable growth in our knowledge of its efficacy and scope. Purpose: The purpose of this Statement is to update the 2006 document, including a new definition of pulmonary rehabilitation and highlighting key concepts and major advances in the field. Methods: A multidisciplinary committee of experts representing the ATS Pulmonary Rehabilitation Assembly and the ERS Scientific Group 01.02, “Rehabilitation and Chronic Care,” determined the overall scope of this update through group consensus. Focused literature reviews in key topic areas were conducted by committee members with relevant clinical and scientific expertise. The final content of this Statement was agreed on by all members. Results: An updated definition of pulmonary rehabilitation is proposed. New data are presented on the science and application of pulmonary rehabilitation, including its effectiveness in acutely ill individuals with chronic obstructive pulmonary disease, and in individuals with other chronic respiratory diseases. The important role of pulmonary rehabilitation in chronic disease management is highlighted. In addition, the role of health behavior change in optimizing and maintaining benefits is discussed. Conclusions: The considerable growth in the science and application of pulmonary rehabilitation since 2006 adds further support for its efficacy in a wide range of individuals with chronic respiratory disease Read More: http://www.atsjournals.org/doi/abs/10.1164/rccm.201309-1634ST

Published
2013

34. Knowledge gaps in patients with COPD and their proxies

Author

Nakken, N., Janssen, D.J., Bogaart, E.H. van den, Muris, J.W., Vercoulen, J.H., Custers, F.L., Bootsma, G.P., Gronenschild, M.H.M., Wouters, E.F., Spruit, M.A., Nakken, N., Janssen, D.J., Bogaart, E.H. van den, Muris, J.W., Vercoulen, J.H., Custers, F.L., Bootsma, G.P., Gronenschild, M.H.M., Wouters, E.F., and Spruit, M.A.

Abstract

Contains fulltext : 181935.pdf (publisher's version ) (Open Access), BACKGROUND: Although proxies of patients with chronic obstructive pulmonary disease (COPD) need health-related knowledge to support patients in managing their disease, their current level of knowledge remains unknown. We aimed to compare health-related knowledge (generic and COPD-related knowledge) between patients with COPD and their resident proxies. METHODS: In this cross-sectional study, we included stable patients with moderate to very severe COPD and their resident proxies (n = 194 couples). Thirty-four statements about generic health and COPD-related topics were assessed in patients and proxies separately. Statements could be answered by 'true', 'false', or 'do not know'. This study is approved by the Medical Research Ethics Committees United (MEC-U), the Netherlands (NL42721.060.12/M12-1280). RESULTS: Patients answered on average 17% of the statements incorrect, and 19% with 'do not know'. The same figure (19%) for the incorrect and unknown statements was shown by proxies. Patients who attended pulmonary rehabilitation previously answered more statements correct (about three) compared to patients who did not attend pulmonary rehabilitation. More correct answers were reported by: younger patients, patients with a higher level of education, patients who previously participated in pulmonary rehabilitation, patients with better cognitive functioning, and patients with a COPD diagnosis longer ago. CONCLUSIONS: Proxies of patients with COPD as well as patients themselves answer about two third of 34 knowledge statements about COPD correct. So, both patients and proxies seem to have an incomplete knowledge about COPD and general health. Therefore, education about general health and COPD should be offered to all subgroups of patients with COPD and their proxies. TRIAL REGISTRATION: This study is registered in the Dutch Trial Register ( NTR3941 ). Registered 19 April 2013.

Published
2017

35. Gender differences in partners of patients with COPD and their perceptions about the patients

Author

Nakken, N., Janssen, D.J., Vliet, M. van, Vries, G.J. de, Clappers-Gielen, G.A., Michels, A.J., Muris, J.W., Vercoulen, J.H.M.M., Wouters, E.F., Spruit, M.A., Nakken, N., Janssen, D.J., Vliet, M. van, Vries, G.J. de, Clappers-Gielen, G.A., Michels, A.J., Muris, J.W., Vercoulen, J.H.M.M., Wouters, E.F., and Spruit, M.A.

Abstract

Contains fulltext : 170329.pdf (publisher's version ) (Open Access), 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.

Published
2017

37. A randomized controlled trial on the benefits and respiratory adverse effects of morphine for refractory dyspnea in patients with COPD: Protocol of the MORDYC study

Author

Verberkt, C.A., Beuken-van Everdingen, M.H.J., Franssen, F.M., Dirksen, C.D., Schols, J.M., Wouters, E.F.M., Janssen, D.J., Verberkt, C.A., Beuken-van Everdingen, M.H.J., Franssen, F.M., Dirksen, C.D., Schols, J.M., Wouters, E.F.M., and Janssen, D.J.

Abstract

Item does not contain fulltext, Dyspnea is one of the most reported symptoms of patients with advanced Chronic Obstructive Pulmonary Disease (COPD) and is often undertreated. Morphine has proven to be an effective treatment for dyspnea and is recommended in clinical practice guidelines, but questions concerning benefits and respiratory adverse effects remain. This study primarily evaluates the impact of oral sustained release morphine (morphine SR) on health-related quality of life and respiratory adverse effects in patients with COPD. Secondary objectives include the impact on exercise capacity, the relationship between description and severity of dyspnea and the presence of a clinically relevant response to morphine, and cost-effectiveness. A single-center, randomized, double blind, placebo controlled intervention study will be performed in 124 patients with COPD who recently completed a comprehensive pulmonary rehabilitation program. Participants will receive 20-30mg/24h morphine SR or placebo for four weeks. After the intervention, participants will be followed for twelve weeks. Outcomes include: the COPD Assessment Test, six minute walking test, Multidimensional Dyspnea Scale and a cost diary. Furthermore, lung function and arterial blood gasses will be measured. These measures will be assessed during a baseline and outcome assessment, two home visits, two phone calls, and three follow-up assessments. The intervention and control group will be compared using uni- and multivariate regression analysis and logistic regression analysis. Finally, an economic evaluation will be performed from a societal and healthcare perspective. The current manuscript describes the rationale and methods of this study and provides an outline of the possible strengths, weaknesses and clinical consequences.

Published
2016

38. Definition of a COPD self-management intervention: International Expert Group consensus

Author

Effing, T.W., Vercoulen, J.H., Bourbeau, J., Trappenburg, J., Lenferink, A., Cafarella, P., Coultas, D., Meek, P., Valk, P. van de, Bischoff, E.W., Bucknall, C., Dewan, N.A., Early, F., Fan, V., Frith, P., Janssen, D.J., Mitchell, K., Morgan, M., Nici, L., Patel, I., Walters, H., Rice, K.L., Singh, S., ZuWallack, R., Benzo, R., Goldstein, R., Partridge, M.R., van der Palen, J., Effing, T.W., Vercoulen, J.H., Bourbeau, J., Trappenburg, J., Lenferink, A., Cafarella, P., Coultas, D., Meek, P., Valk, P. van de, Bischoff, E.W., Bucknall, C., Dewan, N.A., Early, F., Fan, V., Frith, P., Janssen, D.J., Mitchell, K., Morgan, M., Nici, L., Patel, I., Walters, H., Rice, K.L., Singh, S., ZuWallack, R., Benzo, R., Goldstein, R., Partridge, M.R., and van der Palen, J.

Abstract

Item does not contain fulltext, There is an urgent need for consensus on what defines a chronic obstructive pulmonary disease (COPD) self-management intervention. We aimed to obtain consensus regarding the conceptual definition of a COPD self-management intervention by engaging an international panel of COPD self-management experts using Delphi technique features and an additional group meeting.In each consensus round the experts were asked to provide feedback on the proposed definition and to score their level of agreement (1=totally disagree; 5=totally agree). The information provided was used to modify the definition for the next consensus round. Thematic analysis was used for free text responses and descriptive statistics were used for agreement scores.In total, 28 experts participated. The consensus round response rate varied randomly over the five rounds (ranging from 48% (n=13) to 85% (n=23)), and mean definition agreement scores increased from 3.8 (round 1) to 4.8 (round 5) with an increasing percentage of experts allocating the highest score of 5 (round 1: 14% (n=3); round 5: 83% (n=19)).In this study we reached consensus regarding a conceptual definition of what should be a COPD self-management intervention, clarifying the requisites for such an intervention. Operationalisation of this conceptual definition in the near future will be an essential next step.

Published
2016

39. Health Status and Morbidities in Resident Relatives of Patients With COPD

Author

Nakken, N., Spruit, M.A., Bogaart, E.H. van den, Vliet, M. van, Vries, G.J. de, Custers, F.L., Vercoulen, J.H., Asijee, G.M., Muris, J.W., Vanfleteren, L.E., Franssen, F.M., Wouters, E.F., Janssen, D.J., Nakken, N., Spruit, M.A., Bogaart, E.H. van den, Vliet, M. van, Vries, G.J. de, Custers, F.L., Vercoulen, J.H., Asijee, G.M., Muris, J.W., Vanfleteren, L.E., Franssen, F.M., Wouters, E.F., and Janssen, D.J.

Abstract

Item does not contain fulltext, OBJECTIVES: Resident relatives of patients with chronic obstructive pulmonary disease (COPD) may play a major role in obtaining a healthy lifestyle for patients. Little is known about resident relatives. This study aimed to compare health status, morbidities, care dependency, and mobility between patients with COPD and their resident relatives. DESIGN: Cross-sectional study. PARTICIPANTS: Stable patients with moderate to very severe COPD (n = 194) and their resident relatives (n = 194) were visited in their home environment. MEASUREMENTS: Post-bronchodilator spirometry was assessed and generic health status was measured using the EuroQol-5 Dimensions and the Assessment of Quality of Life with 8 dimensions. Care dependency was measured using the Care Dependency Scale. Mobility was measured using the Timed "Up and Go" test (TUG). Morbidities (COPD, hypertension, anxiety and depression, obesity, and muscle wasting) were determined using accepted disease cutoff points and/or receiving specific treatment. RESULTS: Age (patients: 66.0 [8.7], resident relatives: 64.8 [9.7]) and gender (male patients: 53%, male resident relatives: 45%) were comparable. Patients had worse generic health status, higher level of care dependency, and worse mobility. 29% of the resident relatives had airflow limitation based on the Tiffeneau index and 19% based on the lower limit of normal, 33% were current smokers, and 92% had at least one chronic condition. Resident relatives more frequently had hypertension (46% versus 69%). CONCLUSION: Resident relatives of patients with COPD are often current smokers and often have undiagnosed morbidities. Although their health status is better compared with patients, their disease management and health behavior should also be considered when advising patients in obtaining a healthier lifestyle and also when involving them as informal caregivers.

Published
2016

40. Informal caregivers of patients with COPD: Home Sweet Home?

Author

Nakken, N., Janssen, D.J., Bogaart, E.H. van den, Wouters, E.F., Franssen, F.M., Vercoulen, J.H., Spruit, M.A., Nakken, N., Janssen, D.J., Bogaart, E.H. van den, Wouters, E.F., Franssen, F.M., Vercoulen, J.H., and Spruit, M.A.

Abstract

Contains fulltext : 153175.pdf (publisher's version ) (Open Access), The burden of chronic obstructive pulmonary disease (COPD) on society is increasing. Healthcare systems should support patients with COPD in achieving an optimal quality of life, while limiting the costs of care. As a consequence, a shift from hospital care to home care seems inevitable. Therefore, patients will have to rely to a greater extent on informal caregivers. Patients with COPD as well as their informal caregivers are confronted with multiple limitations in activities of daily living. The presence of an informal caregiver is important to provide practical help and emotional support. However, caregivers can be overprotective, which can make patients more dependent. Informal caregiving may lead to symptoms of anxiety, depression, social isolation and a changed relationship with the patient. The caregivers' subjective burden is a major determinant of the impact of caregiving. Therefore, the caregiver's perception of the patient's health is an important factor. This article reviews the current knowledge about these informal caregivers of patients with COPD, the impact of COPD on their lives and their perception of the patient's health status.

Published
2015

41. An observational, longitudinal study on the home environment of people with chronic obstructive pulmonary disease: the research protocol of the Home Sweet Home study

Author

Nakken, N., Janssen, D.J., Bogaart, E.H. van den, Vercoulen, J.H.M.M., Wouters, E.F., Spruit, M.A., Nakken, N., Janssen, D.J., Bogaart, E.H. van den, Vercoulen, J.H.M.M., Wouters, E.F., and Spruit, M.A.

Abstract

Contains fulltext : 139047.pdf (publisher's version ) (Open Access), INTRODUCTION: Chronic obstructive pulmonary disease (COPD) represents an important public health challenge. Patients are confronted with limitations during activities of daily living (ADLs). Resident loved ones of patients with COPD may be uniquely positioned to witness these limitations. COPD may have an impact on not only the patients' life, but also on the lives of the resident loved ones. Furthermore, COPD exacerbation-related hospital admissions often occur in patients with COPD. However, whether and to what extent these admissions influence resident loved ones' burden and health status remains currently unknown. Therefore, the primary objectives of this study are to investigate the differences between patients with COPD and resident loved ones' perceptions of patients' health status and problematic ADLs and to study prospectively the effects of a COPD exacerbation on resident loved ones' perceptions of patients' health status and problematic ADLs. METHODS AND ANALYSIS: An observational, longitudinal study will be performed in 192 patients with COPD and their 192 resident loved ones. Primary outcomes are daily functioning, ADL, disease-specific health status, generic health status and dyspnoea. These will be assessed during home visits at baseline and after 12 months. Additional home visits will be performed when a COPD exacerbation-related hospital admission occurs during the 12-month follow-up period. ETHICS AND DISSEMINATION: This protocol was approved by the Medical Ethics Committee of the Catharina Hospital Eindhoven, the Netherlands (NL42721.060.12/M12-1280) and is registered in the Dutch Trial Register (NTR3941).

Published
2014

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