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1. The effects of plasma exchange and glucocorticoids on early kidney function among patients with ANCA-associated vasculitis in the PEXIVAS trial

Author

Paizis, Kathy, Walters, Giles, Jardine, Meg, Milton, Caroline, Ibraham, Abu, Siva, Brian, Desmond, Michael, Perkovic, Vlado, Kurtkoti, Jadadeesh, Vilayur, Eswari, Cass, Alan, Summers, Shaun, Brown, Fiona, Ryan, Jessica, Kerr, Peter, Noble, Euan, Luxton, Grant, Mudge, David W., Hawley, Carmel, Johnson, David W., Peh, Chen Au, Faull, Randall J., Ranganathan, Dwarakanathan, Jeffs, Lisa, Nicholls, Kathy, Hughes, Peter, Cooper, Bruce, Boudville, Neil, Ford, Sharon, Langham, Robyn, Reidlinger, Donna, AliciaMorrish, Badve, Sunil V., Pascoe, Elaine, Paul-Brent, Peta-Anne, Robison, Laura, Valks, Andrea, Blockmans, Daniel, Henckaerts, Liesbet, Sprangers, Ben, Suri, Rita, Brachemi, Soumeya, Clark, William, Garg, Amit, Carette, Simon, Pagnoux, Christian, Reich, Heather, Barth, David, Walsh, Michael, Khalidi, Nader, Cox, Gerry, Mazzetti, Andrea, Robins, Diane, Wald, Ron, Perl, Jeffrey, Pavenski, Katerina, Dacouris, Niki, Levin, Adeera, Copland, Michael, Fairhead, Todd, Pannu, Neesh, Qarni, Muhammad Uwais, Habib, Syed, Girard, Louis, Manns, Braden, Tesar, Vladimir, Hruskova, Zdenka, Chocova, Zdenka, Povlsen, Johan, Gregersen, Jon, Ivarsen, Per, Birn, Henrik, Krarup, Elizabeth, Pedersen, Erling B., Thomsen, Ingrid, Bech, Jesper Nørgaard, Szpirt, Wladmir, Egfjord, Martin, Mesbah, Rafik, Bataille, Pierre, Rey, Isabelle, Chantrel, François, Vanhille, Philipe, Quémeneur, Thomas, Carron, Pierre-Louis, Zaoui, Philippe, de Moreuil, Claire, Gosselin, Morgane, Delluc, Aurélien, Hanrotel-Saliou, Catherine, Le Jeune, Mathilde, Ficheux, Maxence, Aniort, Julien, Lavigne, Christian, Augusto, Jean Francois, Chauveau, Dominique, Guitard, Joëlle, Huart, Antoine, Ribes, David, Gatault, Philippe, Becmeur, Camille, Muller, Sandrine, Betz, Valérie, Klein, Alexandre, Blaison, Gilles, Seror, Raphaele, Francois, Hélène, Mariette, Xavier, Aubrun, Aurore, Coustet, Baptiste, Palazzo, Elisabeth, Ottaviani, Sébastien, Goulenok, Tiphaine, Daugas, Eric, Dieudé, Philipe, Papo, Thomas, Lebas, Céline, Lionet, Arnaud, Guillevin, Loïc, Mouthon, Luc, Puéchal, Xavier, Jourde-Chiche, Noémie, Ruivard, Marc, Karras, Alexandre, Limal, Nicolas, Kofman, Thomas, Le Quellec, Alain, Maurier, François, Gibelin, Aude, Parrot, Antoine, Bachmeyer, Claude, Gombert, Bruno, Nouvier, Mathilde, Lega, Jean-Christophe, Fain, Olivier, Andrès, Emmanuel, Cottet, Rachel, Gregorini, Gina, Jeannin, Guido, Possenti, Stefano, Buzio, Carlo, Vaglio, Augusto, Oliva, Elena, Makino, Hirofumi, Muso, Eri, Endo, Tomomi, Kakita, Hiroko, Suzuki, Hiroyuki, Handa, Takaya, Kang, Youngna, Ariyasu, Yuki, Tsukamoto, Tatsuo, Endo, Shuichiro, Miyata, Hitomi, Yamada, Hiroyuki, Ito-Ihara, Toshiko, Uchida, Shunya, Kono, Hajime, Fujigaki, Yoshihide, Kikuchi, Hirotoshi, Nanki, Toshihiro, Kato, Hideki, Okamoto, Akiko, Asako, Kurumi, Suzuki, Kazuo, Hamano, Yoshitomo, Yamagata, Kunihiro, Usui, Joichi, Fujimoto, Shouichi, Sato, Yuji, Kikuchi, Masao, Flores-Suárez, Luis Felipe, Sánchez-Guerrero, Sergio A., Collins, Michael, Schollum, John, de Zoysa, Janak, Quincy, Vicki, Sizeland, Peter, Aasarod, Knut, Solbu, Marit, Bruun, Trude Jannecke, Koldingsnes, Wenche, Wludarczyk, Anna, Nowak, Ilona, Gorka, Jacek, Sznajd, Jan, Padjas, Agnieszka, Jankowski, Milosz, Widawska, Agnieszka, Szczeklik, Wojciech, Ballarin, Jose, Bruchfeld, Annette, Efvergren, Mats, Eriksson, Per, Westman, Kerstin, Selga, Daina, Heijl, Caroline, Ohlsson, Sophie, Segelmark, Marten, Basu, Neil, Kidder, Dana, Fluck, Nicholas, Jayne, David R.W., Smith, Rona, Wilcocks, Lisa, McClure, Mark, Jones, Rachel, Trivedi, Sapna, Gopaluni, Seerapani, Brettell, Elizabeth, Crump, Paul, Feilbach, Annika, Hewitt, Catherine, Hilken, Nick, Howman, Andrew, Hughes, Terry, Ives, Natalie, Jarrett, Hugh, Mehta, Samir, Record, Rebecca, Ryan, Gemma, Sidile, Chaka, Wheatley, Keith, Sheerin, Brown, Alison, Baines, Laura Anne, Lordan, Jim, Pusey, Charles, Tanna, Anisha, McAdoo, Stephen, Levy, Jeremy, Griffith, Megan, Klebe, Bernhard, Doulton, Timothy, Warwick, Graham, Burton, James, Barratt, Jonathon, Topham, Peter, Baines, Richard, Brunskill, Nigel, Al-Jayyousi, Reem, Hamilton, Patrick, Patel, Mumtaz, Mitra, Sandip, Brown, Nina, Sharples, Edward, Luqmani, Raashid, Harper, Lorraine, Rhodes, Benjamin, Chanouzas, Dimitrios, Morgan, Matthew, Hewins, Peter, Floßmann, Oliver, Bhandary, Nitin, Foxton, Julie, Jones, Linda, King, Jenny, Smyth, Lucy, D’Souza, Richard, Haigh, Richard, Hough, Maxine, Salama, Alan, Burns, Aine, Little, Mark, Dhaun, Neeraj, Dhaygude, Ajay, Basnayake, Kolitha, Iggo, Neil, Jones, Daniel, Oliveira, David, MacPhee, Iain A.M., Dunn, Emma, Lewington, Andrew J.P., Fan, Stanley Linsun, Rajakariar, Ravindra, Yaqoob, Magdi, Short, Andrew, Geddes, Colin, Mackinnon, Bruce, Jardine, Alan G., Monach, Paul, Merkel, Peter A., Amudala, Naomi, Quillen, Karen, Weisman, Michael, Wallace, Daniel, Forbess, Lindsy, Venuturupalli, Swamy, Langford, Carol, Hajj-Ali, Rula, Koo, Anna, Hoffman, Gary, Specks, Ulrich, Keogh, Karina, Ytterberg, Steven, Winters, Jeff, Warrington, Kenneth, Cartin-Ceba, Rodrigo, Peikert, Tobias, Fervenza, Fernando, Baqir, Misbah, Nachman, Patrick, Detwiler, Randy, Mottl, Amy, Derebail, Vimal, McGregor, JulieAnne, Sreih, Antoine, Rhee, Rennie, McAlear, Carol, Aqui, Nicole, Moreland, Larry, Kiss, Joseph, Liang, Kimberly, Mohan, Niveditha, Balogun, Rasheed, Li, Tingting, Brasington, Richard, Odler, Balazs, Riedl, Regina, Geetha, Duvuru, Szpirt, Wladimir M., Uchida, Lisa, Wallace, Zachary S., Pusey, Charles D., Little, Mark A., and Kronbichler, Andreas

Published
2025
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3. Patient-reported outcome (PRO) measurements in chronic and malignant diseases: ten years’ experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex

Author

Hjollund, Niels Henrik I., Larsen, Louise Pape, de Thurah, Annette Ladefoged, Grove, Birgith Engelst, Skuladottir, Halla, Linnet, Hanne, Friis, Rasmus Blechingberg, Johnsen, Søren Paaske, May, Ole, Jensen, Annesofie Lunde, Hansen, Troels Krarup, Taarnhøj, Gry Assam, Tolstrup, Lærke Kjær, Pappot, Helle, Ivarsen, Per, Dørflinger, Liv, Jessen, Anne, Sørensen, Nanna Toxvig, Schougaard, Liv Marit Valen, and team, The AmbuFlex

Published
2023
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7. The impact of treatment with avacopan on health-related quality of life in antineutrophil cytoplasmic antibody-associated vasculitis: a post-hoc analysis of data from the ADVOCATE trial

Author

Au Peh, Chen, Chakera, Aron, Cooper, Bruce, Kurtkoti, Jagadeesh, Langguth, Daman, Levidiotis, Vicki, Luxton, Grant, Mount, Peter, Mudge, David, Noble, Euan, Phoon, Richard, Ranganathan, Dwarakanathan, Ritchie, Angus, Ryan, Jessica, Suranyi, Michael, Rosenkranz, Alexander, Lhotta, Karl, Kronbichler, Andreas, Demoulin, Nathalie, Bovy, Christophe, Hellemans, Rachel, Hougardy, Jean-Michel, Sprangers, Ben, Wissing, Karl Martin, Pagnoux, Christian, Barbour, Sean, Brachemi, Soumeya, Cournoyer, Serge, Girard, Louis-Philippe, Laurin, Louis-Philippe, Liang, Patrick, Philibert, David, Walsh, Michael, Tesar, Vladimir, Becvar, Radim, Horak, Pavel, Rychlik, Ivan, Szpirt, Wladimir, Dieperink, Hans, Gregersen, Jon Waarst, Ivarsen, Per, Krarup, Elizabeth, Lyngsoe, Cecilie, Rigothier, Claire, Augusto, Jean-Francois, Belot, Alexandre, Chauveau, Dominique, Cornec, Divi, Jourde-Chiche, Noemie, Ficheux, Maxence, Karras, Alexandre, Klein, Alexandre, Maurier, Francois, Mesbah, Rafik, Moranne, Olivier, Neel, Antoine, Quemeneur, Thomas, Saadoun, David, Terrier, Benjamin, Zaoui, Philippe, Schaier, Matthias, Benck, Urs Tobias, Bergner, Raoul, Busch, Martin, Floege, Juergen, Grundmann, Franziska, Haller, Hermann, Haubitz, Marion, Hellmich, Bernhard, Henes, Joerg Christoph, Hohenstein, Bernd, Hugo, Christian, Iking-Konert, Christof, Arndt, Fabian, Kubacki, T, Kotter, Ina, Lamprecht, Peter, Lindner, Tom, Halbritter, Jan, Mehling, Heidrun, Schönermarck, Ulf, Venhoff, Nils, Vielhauer, Volker, Witzke, Oliver, Szombati, Istvan, Szucs, Gabriella, Garibotto, Giacomo, Alberici, Federico, Brunetta, Enrico, Dagna, Lorenzo, De Vita, Salvatore, Emmi, Giacomo, Gabrielli, Armando, Manenti, Lucio, Pieruzzi, Federico, Roccatello, Dario, Salvarani, Carlo, Harigai, Masayoshi, Dobashi, Hiroaki, Atsumi, Tatsuya, Fujimoto, Shoichi, Hagino, Noboru, Ihata, Atsushi, Kaname, Shinya, Kaneko, Yuko, Katagiri, Akira, Katayama, Masao, Kirino, Yohei, Kitagawa, Kiyoki, Komatsuda, Atsushi, Kono, Hajime, Kurasawa, Takahiko, Matsumura, Ryutaro, Mimura, Toshihide, Morinobu, Akio, Murakawa, Yohko, Naniwa, Taio, Nanki, Toshihiro, Ogawa, Noriyoshi, Oshima, Hisaji, Sada, Kenei, Sugiyama, Eiji, Takeuchi, Tohru, Taki, Hirofumi, Tamura, Naoto, Tsukamoto, Tatsuo, Yamagata, Kunihiro, Yamamura, Masahiro, van Daele, Paulus Leon Arthur, Rutgers, Abraham, Teng, Y.K. Onno, Walker, Robert, Chua, Ignatius, Collins, Michael, Rabindranath, Kannaiyan, de Zoysa, Janak, Svensson, My Hanna Sofia, Grevbo, Bard-Waldum, Kalstad, Synove, Little, Mark, Clarkson, Michael, Molloy, Eamonn, Agraz Pamplona, Irene, Anton, Jordi, Barrio Lucia, Vicente, Ciggaran, Secundino, Cinta Cid, Maria, Diaz Encarnacion, Montserrat, Fulladosa Oliveras, Xavier, Jose Soler, Maria, Marco Rusinol, Helena, Praga, Manuel, Quintana Porras, Luis, Segarra, Alfons, Bruchfeld, Annette, Segelmark, Marten, Soveri, Inga, Thomaidi, Eleni, Westman, Kerstin, Neumann, Thomas, Burnier, Michel, Daikeler, Thomas, Dudler, Jean, Hauser, Thomas, Seeger, Harald, Vogt, Bruno, Burton, James, Al Jayyousi, Reem, Amin, Tania, Andrews, Jacqueline, Baines, Laura Anne, Brogan, Paul, Dasgupta, Bhaskar, Doulton, Timothy William Ronald, Flossmann, Oliver, Griffin, Sian V., Harper, Janice Marian, Harper, Lorraine, Kidder, Dana, Klocke, Rainer, Lanyon, Peter Charles, Luqmani, Raashid, McLaren, John Stuart, Makanjuola, David Osagie, McCann, Liza, Nandagudi, Anupama C., Selvan, Shilpa, O'Riordan, Edmond, Patel, Mumtaz, Patel, Rajan Kantilal, Pusey, Charles Dickson, Rajakariar, Ravindra, Robson, Joanna C., Robson, Michael, Salama, Alan David, Smyth, Lucy, Sznajd, Jan, Taylor, Joanne, Sreih, Antonie G., Belilos, Elise, Bomback, Andrew S., Carlin, Jeffrey, Chang Chen Lin, Yih, Derebail, Vimal K., Dragoi, Serban, Dua, Anisha, Forbess, Lindsy, Geetha, Duvuru, Gipson, Patrick, Gohh, Reginald, Greenwood, Gregory Todd, Hugenberg, Steven T., Jimenez, Richard A.H., Kaskas, Marwan Omar, Kermani, Tanaz, Kivitz, Alan J., Koening, Curry, Langford, Carol A., Marder, Galina, Mohamed, Amr Ahmed El-Huesseini, Monach, Paul, Neyra, Nilda Roxana, Niemer, Gregory W., Niles, John, Obi, Reginald, Owens, Charles, Parks, Deborah L., Podoll, Amber S., Rovin, Brad, Sam, R, Shergy, William Julius, Silva, Arnold Lawrence, Specks, Ulrich, Spiera, Robert, Springer, Jason M., Striebich, Christopher Charles, Swarup, Areena, Thakar, Surabhi, Tiliakos, Athan N., Tsai, Yong, Waguespack, Dia R., Chester Wasko, Mary, Strand, Vibeke, Jayne, David R W, Horomanski, Audra, Yue, Huibin, Bekker, Pirow, and Merkel, Peter A

Published
2023
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12. Coronary Plaque Characteristics in Patients With Chronic Kidney Failure: Impact on Cardiovascular Events and Mortality.

Author

Nørtoft Dahl, Jonathan, Nielsen, Marie B., Rasmussen, Laust D., Ivarsen, Per, Williams, Michelle C., Svensson, My Hanna Sofia, Birn, Henrik, Bøttcher, Morten, and Winther, Simon

Abstract

BACKGROUND: In patients with coronary artery disease, coronary plaques with high-risk features and low-attenuation plaque burden are independent measures associated with major adverse cardiovascular events (MACEs). Patients with chronic kidney failure may have different coronary artery disease characteristics. The aim was to assess the association of coronary plaque characteristics and coronary artery disease extent with MACE and all-cause mortality in patients with chronic kidney failure. METHODS: Potential kidney transplant candidates who underwent coronary computed tomography angiography as part of the cardiac screening program before kidney transplantation were included. We evaluated high-risk plaques and diameter stenosis semiqualitatively and quantified coronary artery calcium score and plaque burden (percentage atheroma volume). RESULTS: In 484 patients with chronic kidney failure and few or no symptoms of coronary artery disease (mean age, 53±12 years; 62% men; 32% on dialysis), 56 (12%) patients suffered MACE and 69 (14%) patients died during a median followup of 4.9 years. High-risk plaques were present in 39 (70%) patients with MACE. Median calcified plaque burden was 3.7% in patients with MACE versus 0.2% in patients without MACE. The median low-attenuation plaque burden was 0.3% versus 0.03%, respectively. In semiqualitative analyses, the presence of high-risk plaque and a higher coronary artery calcium score were associated with increased risk of MACE (hazard ratio (HR), 2.0 [95% CI, 1.0-3.7]; P=0.040; HR, 1.2 [95% CI, 1.0-1.3]; P=0.014), respectively. Neither were associated with all-cause mortality. In quantified analysis, increasing levels of both calcified and low-attenuation plaque burdens were associated with risk of MACE (HR, 2.6 [95% CI, 1.8-3.7]; P<0.001; HR, 2.6 [95% CI, 1.5-4.5]; P=0.001 [per variable doubling, respectively]) and all-cause mortality (HR, 1.6 [95% CI, 1.2-2.1]; P=0.002; HR, 1.8 [95% CI, 1.1-3.0]; P=0.028, respectively). CONCLUSIONS: In patients with chronic kidney failure, calcified and low-attenuation plaque burdens were independently associated with MACE and all-cause mortality, while high-risk plaques and coronary artery calcium score were only associated with MACE. [ABSTRACT FROM AUTHOR]

Published
2024
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13. #2276 Blood stream infections in patients with ANCA-associated vasculitis—a Danish nationwide study

Author

Bruun, Nanna Thuesen, primary, Carlson, Nicholas, additional, Hornum, Mads, additional, Fosbøl, Emil, additional, Lauge, Lauge, additional, Volstedlund, Marianne, additional, Rydahl, Casper, additional, Ivarsen, Per, additional, Gregersen, Jon Waarst, additional, Egfjord, Martin, additional, Szpirt, Wladimir, additional, and Nelveg-Kristensen, Karl Emil, additional

Published
2024
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15. #886 Prevalence and prognostic relevance of electrocardiographic abnormalities among patients with ANCA-associated vasculitis

Author

Nygaard, Louis, primary, Liboriussen, Caroline Hundborg, additional, Carlson, Nicholas, additional, Nelveg-Kristensen, Karl Emil, additional, Kristensen, Salome, additional, Kragholm, Kristian, additional, Graff, Claus, additional, Torp, Christian, additional, Ivarsen, Per, additional, Svensson, My, additional, Gregersen, Jon Waarst, additional, and Polcwiartek, Christoffer, additional

Published
2024
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20. The validity of pathology codes for biopsy-confirmed kidney disease in the Danish National Patobank

Author

Møller, Marie, Bressendorff, Iain, Borg, Rikke, Dieperink, Hans, Gregersen, Jon W., Hansen, Helle, Hommel, Kristine, Hornum, Mads, Ivarsen, Per, Jensen, Karina H., Jørgensen, Morten B., Kristensen, Tilde, Krustrup, Dorrit, Mose, Frank H., Rossing, Peter, Otte, Kjeld E., Persson, Frederik, Schandorff, Kristine D., Hansen, Ditte, Møller, Marie, Bressendorff, Iain, Borg, Rikke, Dieperink, Hans, Gregersen, Jon W., Hansen, Helle, Hommel, Kristine, Hornum, Mads, Ivarsen, Per, Jensen, Karina H., Jørgensen, Morten B., Kristensen, Tilde, Krustrup, Dorrit, Mose, Frank H., Rossing, Peter, Otte, Kjeld E., Persson, Frederik, Schandorff, Kristine D., and Hansen, Ditte

Abstract

Background This study validates the application of Systematized Nomenclature of Medicine second edition (SNOMED II) codes used to describe medical kidney biopsies in Denmark in encoded form, aiming to support robust epidemiological research on the causes, treatments and prognosis of kidney diseases. Methods Kidney biopsy reports from 1 January 1998 to 31 December 2018 were randomly extracted from the Danish National Patobank, using SNOMED codes. A 5% sample was selected, and nephrologists assessed the corresponding medical records, assigning each case the applied clinical diagnoses. Sensitivity, specificity, positive predictive values (PPV), negative predictive values and Cohen's kappa coefficient for the retrieved SNOMED codes were calculated. Results A total of 613 kidney biopsies were included. The primary clinical disease groups were glomerular disease (n = 368), tubulointerstitial disease (n = 67), renal vascular disease (n = 51), diabetic nephropathy (n = 51) and various renal disorders (n = 40). Several SNOMED codes were used to describe each clinical disease group and PPV for the combined SNOMED codes were high for glomerular disease (94%), diabetic nephropathy (85%) and systemic diseases affecting the kidney (96%). Conversely, tubulointerstitial disease (62%), renal vascular disease (60%) and other renal disorders (17%) showed lower PPV. Conclusions SNOMED codes have a high PPV for glomerular diseases, diabetic nephropathy and systemic diseases affecting the kidney, in which they could be applied for future epidemiological research., Background. This study validates the application of Systematized Nomenclature of Medicine second edition( SNOMED II) codes used to describe medical kidney biopsies in Denmark in encoded form, aiming to support robust epidemiological research on the causes, treatments and prognosis of kidney diseases. Methods. Kidney biopsy reports from 1 January 1998 to 31 December 2018 were randomly extracted from the Danish National Patobank, using SNOMED codes. A 5% sample was selected, and nephrologists assessed the corresponding medical records, assigning each case the applied clinical diagnoses. Sensitivity, specificity, positive predictive values ( PPV) , negative predictive values and Cohen's kappa coefficient for the retrieved SNOMED codes were calculated. Results. A total of 613 kidney biopsies were included. The primary clinical disease groups were glomerular disease ( n = 368) , tubulointerstitial disease( n = 67) , renal vascular disease( n = 51) , diabetic nephropathy( n = 51) and various renal disorders( n = 40) . Several SNOMED codes were used to describe each clinical disease group and PPV for the combined SNOMED codes were high for glomerular disease( 94%) , diabetic nephropathy( 85%) and systemic diseases affecting the kidney( 96%) . Conversely, tubulointerstitial disease( 62%) , renal vascular disease( 60%) and other renal disorders( 17%) showed lower PPV. Conclusions. SNOMED codes have a high PPV for glomerular diseases, diabetic nephropathy and systemic diseases affecting the kidney, in which they could be applied for future epidemiological research.

Published
2024

21. Age- and time-dependent increases in incident anti-glomerular basement membrane disease: a nationwide cohort study

Author

Nelveg-kristensen, Karl Emil, Madsen, Bo, Mcclure, Mark, Bruun, Nanna, Lyngsø, Cecilie, Dieperink, Hans, Gregersen, Jon Waarst, Krarup, Elizabeth, Ivarsen, Per, Torp-pedersen, Christian, Egfjord, Martin, Szpirt, Wladimir, Carlson, Nicholas, Nelveg-kristensen, Karl Emil, Madsen, Bo, Mcclure, Mark, Bruun, Nanna, Lyngsø, Cecilie, Dieperink, Hans, Gregersen, Jon Waarst, Krarup, Elizabeth, Ivarsen, Per, Torp-pedersen, Christian, Egfjord, Martin, Szpirt, Wladimir, and Carlson, Nicholas

Abstract

Background Epidemiologic assessments of anti-glomerular basement membrane (GBM) disease have been challenging due to its rare occurrence. We examined changes in the incidence and outcomes from 1998 to 2018 using nationwide healthcare registries. Methods All patients with incident anti-GBM disease were identified using the International Classification of Diseases, 10th Revision code DM31.0A. Controls were matched 4:1 on birthyear and sex using exposure density sampling. Log link regression adjusted for time, age and sex was applied to model survival. Results We identified 97 patients with incident anti-GBM disease, corresponding to an incidence of 0.91 cases/million/year [standard deviation (SD) 0.6]. The incidence increased over time [1998–2004: 0.50 (SD 0.2), 2005–2011: 0.80 (SD 0.4), 2012–2018: 1.4 (SD 0.5); P = .02] and with age [0.76 (SD 0.4), 1.5 (SD 1.04) and 4.9 (SD 2.6) for patients <45, 45–75 and >75 years]. The median age was 56 years (interquartile range 46) and 51.6% were female. Dialysis was required in 58.4%, 61.9% and 62.9% of patients at day 30, 180 and 360, respectively. The 1-year kidney survival probability was 0.38 (SD 0.05) and exhibited time-dependent changes [1998–2004: 0.47 (SD 0.13), 2005–2011: 0.16 (SD 0.07), 2012–2018: 0.46 (SD 0.07); P = .035]. The 5-year mortality was 26.8% and mortality remained stable over time (P = .228). The risk of death was greater than that of the matched background population {absolute risk ratio [ARR] 5.27 [confidence interval (CI) 2.45–11.3], P < .001}, however, it was comparable to that of patients with anti-neutrophil cytoplasmic antibody–associated vasculitis (AAV) requiring renal dialysis at presentation [ARR 0.82 (CI 0.48–1.41), P = .50]. Conclusion The incidence of anti-GBM disease increased over time, possibly related to temporal demographic changes. Mortality remained high and was comparable with an age- and sex-matched cohort of dialysis-dependent AAV, Background Epidemiologic assessments of anti-glomerular basement membrane (GBM) disease have been challenging due to its rare occurrence. We examined changes in the incidence and outcomes from 1998 to 2018 using nationwide healthcare registries. Methods All patients with incident anti-GBM disease were identified using the International Classification of Diseases, 10th Revision code DM31.0A. Controls were matched 4:1 on birthyear and sex using exposure density sampling. Log link regression adjusted for time, age and sex was applied to model survival. Results We identified 97 patients with incident anti-GBM disease, corresponding to an incidence of 0.91 cases/million/year [standard deviation (SD) 0.6]. The incidence increased over time [1998–2004: 0.50 (SD 0.2), 2005–2011: 0.80 (SD 0.4), 2012–2018: 1.4 (SD 0.5); P = .02] and with age [0.76 (SD 0.4), 1.5 (SD 1.04) and 4.9 (SD 2.6) for patients <45, 45–75 and >75 years]. The median age was 56 years (interquartile range 46) and 51.6% were female. Dialysis was required in 58.4%, 61.9% and 62.9% of patients at day 30, 180 and 360, respectively. The 1-year kidney survival probability was 0.38 (SD 0.05) and exhibited time-dependent changes [1998–2004: 0.47 (SD 0.13), 2005–2011: 0.16 (SD 0.07), 2012–2018: 0.46 (SD 0.07); P = .035]. The 5-year mortality was 26.8% and mortality remained stable over time (P = .228). The risk of death was greater than that of the matched background population {absolute risk ratio [ARR] 5.27 [confidence interval (CI) 2.45–11.3], P < .001}, however, it was comparable to that of patients with anti-neutrophil cytoplasmic antibody–associated vasculitis (AAV) requiring renal dialysis at presentation [ARR 0.82 (CI 0.48–1.41), P = .50]. Conclusion The incidence of anti-GBM disease increased over time, possibly related to temporal demographic changes. Mortality remained high and was comparable with an age- and sex-matched cohort of dialysis-dependent AAV

Published
2024

24. Dietary app for patients with kidney disease: Qualitative evaluation of a prototype.

Author

Suder, Louise Birk, Ivarsen, Per, Førrisdahl, Lisbeth, Christensen, Mette R., Streubel‐Kristensen, Lise, Sørensen, Anni, and Finderup, Jeanette

Subjects
MOBILE apps, QUALITATIVE research, FOCUS groups, SELF-management (Psychology), RESEARCH funding, PHOSPHATES, POTASSIUM, NUTRITION counseling, HEMODIALYSIS, DESCRIPTIVE statistics, CHRONIC kidney failure, THEMATIC analysis, ATTITUDES of medical personnel, ANTHROPOMETRY, DATA analysis software, DIET, PATIENTS' attitudes
Abstract

Background: Individual dietary recommendations change as loss of kidney function progresses. Adopting these recommendations in everyday life poses major challenges for patients. Individualising dietary counselling is crucial to easy accessibility. Aim: To investigate patients' needs with regard to a dietary app for patients with chronic kidney disease, patients', and health professionals' immediate responses to such a dietary app and suggestions for improvement and further development of a prototype. Design: A prototype of the dietary app has been developed and demonstrates how all information it provides can be tailored to the individual patient according to stage of disease, anthropometrics, and phosphate and potassium levels. A qualitative evaluation of the prototype was conducted using the Consolidated Criteria for Reporting Qualitative Research checklist for reporting. Approach: Seven individual interviews and four focus groups were analysed using interpretive description. Participants: Individual interviews with seven patients who have stage 4 or 5 chronic kidney disease and are not on dialysis, and four focus groups: one with participants from the individual interviews, one with six patients on haemodialysis, one with 13 kidney dieticians and one with seven health professionals. Findings: Both patients and healthcare professionals were positive about the app. Individualisation is necessary for the app to work in practice. The patients reported access to a diet diary and recipes as important elements. Conclusion: There is a need to improve the tools we use today to enhance patient adherence to dietary recommendations. The development of an app for individual dietary counselling could be a useful solution. [ABSTRACT FROM AUTHOR]

Published
2024
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25. Remote symptom monitoring with patient-reported outcome measures in outpatients with chronic kidney disease (PROKID): a multicentre randomised controlled non-inferiority study.

Author

Grove, Birgith Engelst, Schougaard, Liv Marit Valen, Mose, Frank, Randers, Else, Hjollund, Niels Henrik, Ivarsen, Per, and Thurah, Annette De

Subjects
MEDICAL care, PATIENT reported outcome measures, CHRONIC kidney failure, GLOMERULAR filtration rate, PATIENT participation
Abstract

Background The increasing incidence of chronic kidney disease (CKD) is straining the capacity of outpatient clinics. Remote healthcare delivery might improve CKD follow-up compared with conventional face-to-face follow-up. Patient-reported outcomes (PROs) are used to empower remote follow-up and patient engagement. The consequences of shifting from face-to-face follow-up to remote outpatient follow-up on kidney function, health resource utilisation and quality of life remain unknown. Methods We conducted a multicentre pragmatic non-inferiority trial at three outpatient clinics in the Central Denmark Region. A total of 152 incident outpatients with CKD were randomised (1:1:1) to either PRO-based, PRO-telephone follow-up or standard of care (SoC). The primary outcome was the annual change in kidney function measured by the slope of the estimated glomerular filtration rate (eGFR). The non-inferiority margin was an eGFR of 2.85 ml/min/1.73 m2/year. Mean differences were estimated using intention-to-treat (ITT), per protocol and random coefficient models. Results Mean eGFR slope differences between PRO-based and SoC were −0.97 ml/min/1.73 m2/year [95% confidence interval (CI) −3.00–1.07] and −1.06 ml/min/1.73 m2/year (95% CI −3.02–0.89) between PRO-telephone and SoC. Non-inferiority was only established in the per-protocol analysis due to CIs exceeding the margin in the ITT group. Both intervention groups had fewer outpatient visits: −4.95 (95% CI −5.82 to −4.08) for the PRO-based group and −5.21 (95% CI −5.95 to −4.46) for the PRO-telephone group. We found no significant differences in quality of life, illness perception or satisfaction. Conclusion Differences in the eGFR slope between groups were non-significant and results on non-inferiority were inconclusive. Thus, transitioning to remote PRO-based follow-up requires close monitoring of kidney function. Reducing patients' attendance in the outpatient clinic was possible without decreasing either quality of life or illness perception. ClinicalTrials.gov identifier: NCT03847766 [ABSTRACT FROM AUTHOR]

Published
2024
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32. Age and time-dependent increase in incident anti-glomerular basement membrane (anti-GBM) disease: a nation-wide cohort study

Author

Nelveg-Kristensen, Karl Emil, primary, Madsen, Bo, additional, McClure, Mark, additional, Bruun, Nanna, additional, Lyngsø, Cecilie, additional, Dieperink, Hans, additional, Gregersen, Jon Waarst, additional, Krarup, Elizabeth, additional, Ivarsen, Per, additional, Torp-Pedersen, Christian, additional, Egfjord, Martin, additional, Szpirt, Wladimir, additional, and Carlson, Nicholas, additional

Published
2023
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34. The impact of treatment with avacopan on health-related quality of life in antineutrophil cytoplasmic antibody-associated vasculitis: a post-hoc analysis of data from the ADVOCATE trial

Author

Strand, Vibeke, primary, Jayne, David R W, additional, Horomanski, Audra, additional, Yue, Huibin, additional, Bekker, Pirow, additional, Merkel, Peter A, additional, Au Peh, Chen, additional, Chakera, Aron, additional, Cooper, Bruce, additional, Kurtkoti, Jagadeesh, additional, Langguth, Daman, additional, Levidiotis, Vicki, additional, Luxton, Grant, additional, Mount, Peter, additional, Mudge, David, additional, Noble, Euan, additional, Phoon, Richard, additional, Ranganathan, Dwarakanathan, additional, Ritchie, Angus, additional, Ryan, Jessica, additional, Suranyi, Michael, additional, Rosenkranz, Alexander, additional, Lhotta, Karl, additional, Kronbichler, Andreas, additional, Demoulin, Nathalie, additional, Bovy, Christophe, additional, Hellemans, Rachel, additional, Hougardy, Jean-Michel, additional, Sprangers, Ben, additional, Wissing, Karl Martin, additional, Pagnoux, Christian, additional, Barbour, Sean, additional, Brachemi, Soumeya, additional, Cournoyer, Serge, additional, Girard, Louis-Philippe, additional, Laurin, Louis-Philippe, additional, Liang, Patrick, additional, Philibert, David, additional, Walsh, Michael, additional, Tesar, Vladimir, additional, Becvar, Radim, additional, Horak, Pavel, additional, Rychlik, Ivan, additional, Szpirt, Wladimir, additional, Dieperink, Hans, additional, Gregersen, Jon Waarst, additional, Ivarsen, Per, additional, Krarup, Elizabeth, additional, Lyngsoe, Cecilie, additional, Rigothier, Claire, additional, Augusto, Jean-Francois, additional, Belot, Alexandre, additional, Chauveau, Dominique, additional, Cornec, Divi, additional, Jourde-Chiche, Noemie, additional, Ficheux, Maxence, additional, Karras, Alexandre, additional, Klein, Alexandre, additional, Maurier, Francois, additional, Mesbah, Rafik, additional, Moranne, Olivier, additional, Neel, Antoine, additional, Quemeneur, Thomas, additional, Saadoun, David, additional, Terrier, Benjamin, additional, Zaoui, Philippe, additional, Schaier, Matthias, additional, Benck, Urs Tobias, additional, Bergner, Raoul, additional, Busch, Martin, additional, Floege, Juergen, additional, Grundmann, Franziska, additional, Haller, Hermann, additional, Haubitz, Marion, additional, Hellmich, Bernhard, additional, Henes, Joerg Christoph, additional, Hohenstein, Bernd, additional, Hugo, Christian, additional, Iking-Konert, Christof, additional, Arndt, Fabian, additional, Kubacki, T, additional, Kotter, Ina, additional, Lamprecht, Peter, additional, Lindner, Tom, additional, Halbritter, Jan, additional, Mehling, Heidrun, additional, Schönermarck, Ulf, additional, Venhoff, Nils, additional, Vielhauer, Volker, additional, Witzke, Oliver, additional, Szombati, Istvan, additional, Szucs, Gabriella, additional, Garibotto, Giacomo, additional, Alberici, Federico, additional, Brunetta, Enrico, additional, Dagna, Lorenzo, additional, De Vita, Salvatore, additional, Emmi, Giacomo, additional, Gabrielli, Armando, additional, Manenti, Lucio, additional, Pieruzzi, Federico, additional, Roccatello, Dario, additional, Salvarani, Carlo, additional, Harigai, Masayoshi, additional, Dobashi, Hiroaki, additional, Atsumi, Tatsuya, additional, Fujimoto, Shoichi, additional, Hagino, Noboru, additional, Ihata, Atsushi, additional, Kaname, Shinya, additional, Kaneko, Yuko, additional, Katagiri, Akira, additional, Katayama, Masao, additional, Kirino, Yohei, additional, Kitagawa, Kiyoki, additional, Komatsuda, Atsushi, additional, Kono, Hajime, additional, Kurasawa, Takahiko, additional, Matsumura, Ryutaro, additional, Mimura, Toshihide, additional, Morinobu, Akio, additional, Murakawa, Yohko, additional, Naniwa, Taio, additional, Nanki, Toshihiro, additional, Ogawa, Noriyoshi, additional, Oshima, Hisaji, additional, Sada, Kenei, additional, Sugiyama, Eiji, additional, Takeuchi, Tohru, additional, Taki, Hirofumi, additional, Tamura, Naoto, additional, Tsukamoto, Tatsuo, additional, Yamagata, Kunihiro, additional, Yamamura, Masahiro, additional, van Daele, Paulus Leon Arthur, additional, Rutgers, Abraham, additional, Teng, Y.K. Onno, additional, Walker, Robert, additional, Chua, Ignatius, additional, Collins, Michael, additional, Rabindranath, Kannaiyan, additional, de Zoysa, Janak, additional, Svensson, My Hanna Sofia, additional, Grevbo, Bard-Waldum, additional, Kalstad, Synove, additional, Little, Mark, additional, Clarkson, Michael, additional, Molloy, Eamonn, additional, Agraz Pamplona, Irene, additional, Anton, Jordi, additional, Barrio Lucia, Vicente, additional, Ciggaran, Secundino, additional, Cinta Cid, Maria, additional, Diaz Encarnacion, Montserrat, additional, Fulladosa Oliveras, Xavier, additional, Jose Soler, Maria, additional, Marco Rusinol, Helena, additional, Praga, Manuel, additional, Quintana Porras, Luis, additional, Segarra, Alfons, additional, Bruchfeld, Annette, additional, Segelmark, Marten, additional, Soveri, Inga, additional, Thomaidi, Eleni, additional, Westman, Kerstin, additional, Neumann, Thomas, additional, Burnier, Michel, additional, Daikeler, Thomas, additional, Dudler, Jean, additional, Hauser, Thomas, additional, Seeger, Harald, additional, Vogt, Bruno, additional, Burton, James, additional, Al Jayyousi, Reem, additional, Amin, Tania, additional, Andrews, Jacqueline, additional, Baines, Laura Anne, additional, Brogan, Paul, additional, Dasgupta, Bhaskar, additional, Doulton, Timothy William Ronald, additional, Flossmann, Oliver, additional, Griffin, Sian V., additional, Harper, Janice Marian, additional, Harper, Lorraine, additional, Kidder, Dana, additional, Klocke, Rainer, additional, Lanyon, Peter Charles, additional, Luqmani, Raashid, additional, McLaren, John Stuart, additional, Makanjuola, David Osagie, additional, McCann, Liza, additional, Nandagudi, Anupama C., additional, Selvan, Shilpa, additional, O'Riordan, Edmond, additional, Patel, Mumtaz, additional, Patel, Rajan Kantilal, additional, Pusey, Charles Dickson, additional, Rajakariar, Ravindra, additional, Robson, Joanna C., additional, Robson, Michael, additional, Salama, Alan David, additional, Smyth, Lucy, additional, Sznajd, Jan, additional, Taylor, Joanne, additional, Sreih, Antonie G., additional, Belilos, Elise, additional, Bomback, Andrew S., additional, Carlin, Jeffrey, additional, Chang Chen Lin, Yih, additional, Derebail, Vimal K., additional, Dragoi, Serban, additional, Dua, Anisha, additional, Forbess, Lindsy, additional, Geetha, Duvuru, additional, Gipson, Patrick, additional, Gohh, Reginald, additional, Greenwood, Gregory Todd, additional, Hugenberg, Steven T., additional, Jimenez, Richard A.H., additional, Kaskas, Marwan Omar, additional, Kermani, Tanaz, additional, Kivitz, Alan J., additional, Koening, Curry, additional, Langford, Carol A., additional, Marder, Galina, additional, Mohamed, Amr Ahmed El-Huesseini, additional, Monach, Paul, additional, Neyra, Nilda Roxana, additional, Niemer, Gregory W., additional, Niles, John, additional, Obi, Reginald, additional, Owens, Charles, additional, Parks, Deborah L., additional, Podoll, Amber S., additional, Rovin, Brad, additional, Sam, R, additional, Shergy, William Julius, additional, Silva, Arnold Lawrence, additional, Specks, Ulrich, additional, Spiera, Robert, additional, Springer, Jason M., additional, Striebich, Christopher Charles, additional, Swarup, Areena, additional, Thakar, Surabhi, additional, Tiliakos, Athan N., additional, Tsai, Yong, additional, Waguespack, Dia R., additional, and Chester Wasko, Mary, additional

Published
2023
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38. Patient-reported outcome (PRO) measurements in chronic and malignant diseases:ten years’ experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex

Author

Hjollund, Niels Henrik I., Larsen, Louise Pape, de Thurah, Annette Ladefoged, Grove, Birgith Engelst, Skuladottir, Halla, Linnet, Hanne, Friis, Rasmus Blechingberg, Johnsen, Søren Paaske, May, Ole, Jensen, Annesofie Lunde, Hansen, Troels Krarup, Taarnhøj, Gry Assam, Tolstrup, Lærke Kjær, Pappot, Helle, Ivarsen, Per, Dørflinger, Liv, Jessen, Anne, Sørensen, Nanna Toxvig, Schougaard, Liv Marit Valen, Hjollund, Niels Henrik I., Larsen, Louise Pape, de Thurah, Annette Ladefoged, Grove, Birgith Engelst, Skuladottir, Halla, Linnet, Hanne, Friis, Rasmus Blechingberg, Johnsen, Søren Paaske, May, Ole, Jensen, Annesofie Lunde, Hansen, Troels Krarup, Taarnhøj, Gry Assam, Tolstrup, Lærke Kjær, Pappot, Helle, Ivarsen, Per, Dørflinger, Liv, Jessen, Anne, Sørensen, Nanna Toxvig, and Schougaard, Liv Marit Valen

Abstract

Background: Patient-reported Outcome (PRO) measures may be used as the basis for out-patient follow-up instead of fixed appointments. The patients attend follow-up from home by filling in questionnaires developed for that specific aim and patient group (telePRO). The questionnaires are handled in real time by a specific algorithm, which assigns an outcome color reflecting clinical need. The specific questionnaires and algorithms (named solutions) are constructed in a consensus process with clinicians. We aimed to describe AmbuFlex’ telePRO solutions and the algorithm outcomes and variation between patient groups, and to discuss possible applications and challenges. Methods: TelePRO solutions with more than 100 processed questionnaires were included in the analysis. Data were retrieved together with data from national registers. Characteristics of patients, questionnaires and outcomes were tabulated for each solution. Graphs were constructed depicting the overall and within-patient distribution of algorithm outcomes for each solution. Results: From 2011 to 2021, 29 specific telePRO solutions were implemented within 24 different ICD-10 groups. A total of 42,015 patients were referred and answered 171,268 questionnaires. An existing applicable instrument with cut-off values was available for four solutions, whereas items were selected or developed ad hoc for the other solutions. Mean age ranged from 10.7 (Pain in children) to 73.3 years (chronic kidney disease). Mortality among referred patients varied between 0 (obesity, asthma, endometriosis and pain in children) and 528 per 1000 patient years (Lung cancer). There was substantial variation in algorithm outcome across patient groups while different solutions within the same patient group varied little. Discussion: TelePRO can be applied in diseases where PRO can reflect clinical status and needs. Questionnaires and algorithms should be adapted for the specific patient groups and clinical aims. When PRO is used as r

Published
2023

46. Increasing incidence and improved survival in ANCA-associated vasculitis-a Danish nationwide study

Author

Nelveg-Kristensen, Karl Emil, Szpirt, Wladimir, Carlson, Nicholas, McClure, Mark, Jayne, David, Dieperink, Hans, Gregersen, Jon Waarst, Krarup, Elizabeth, Ivarsen, Per, Torp-Pedersen, Christian, Egfjord, Martin, Nelveg-Kristensen, Karl Emil, Szpirt, Wladimir, Carlson, Nicholas, McClure, Mark, Jayne, David, Dieperink, Hans, Gregersen, Jon Waarst, Krarup, Elizabeth, Ivarsen, Per, Torp-Pedersen, Christian, and Egfjord, Martin

Abstract

Background. Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis (AAV) carries a high risk of morbidity and mortality, with outcomes modified by treatment and an incidence that may be increasing. We examined temporal changes in incidence and mortality during 2000-15 using nationwide healthcare registries.Methods. Patients with incident AAV were identified using International Classification of Diseases Version 10 (ICD10) codes and grouped according to inclusion year (Period 1: 2000-04, Period 2: 2005-09, Period 3: 2010-15). Log link cumulative incidence regression adjusted for age, sex, renal function, cardiovascular disease, diabetes, hypertension and advanced disease severity were used to model survival.Results. We identified 1631 patients (52% male), corresponding to an incidence of 18.5 persons/million/year (Period 1: 15.1, Period 2: 18.5, Period 3: 21.4). The slope of incident serologic ANCA testing was steeper than that of AAV (P = 0.002). Mean [standard deviation (SD)] age was 60.2 (16.7) years and mean (SD) follow-up was 6.8 (4.7) years. A total of 571 (35%) patients died (5-year mortality of 22.1%), with an absolute risk ratio (ARR) for Periods 2 and 3 compared with Period 1 of 0.80 [confidence interval (CI) 0.65-0.98, P = 0.031] and 0.39 (CI 0.31-0.50, P < 0.001). About 274 patients developed end-stage renal disease (ESRD) [16.8% (Period 1: 23.3%, Period 2: 17.6%, Period 3: 12.5%)], with ARR decreasing over time: Period 2 0.61 (CI 0.42-0.87, P = 0.007) and Period 3 0.57 (CI 0.39-0.83, P = 0.003). The overall risk of death associated with ESRD or chronic kidney disease was 1.74 (CI 1.29-2.37, P < 0.001) and 1.58 (CI 1.21-2.07, P < 0.001).Conclusions. Incidence of ANCA testing and AAV diagnosis increased over the test period. Falls over time in mortality and ESRD risk may relate to earlier diagnosis and changes in treatment practice.

Published
2022

48. Patient-reported outcome (PRO) measurements in chronic and malignant diseases: Ten years’ experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex

Author

Hjollund, Niels Henrik Ingvar, primary, Larsen, Louise Pape, additional, de Thurah, Annette Ladefoged, additional, Grove, Birgith Engest, additional, Skuladottir, Halla, additional, Linnet, Hanne, additional, Friis, Rasmus Blechingberg, additional, Johnsen, Søren Paaske, additional, May, Ole, additional, Jensen, Annesofie Lunde, additional, Hansen, Troels Krarup, additional, Taarnhøj, Gry Assam, additional, Tolstrup, Lærke Kjær, additional, Pappot, Helle, additional, Ivarsen, Per, additional, Dørflinger, Liv, additional, Jessen, Anne, additional, Sørensen, Nanna Toxvig, additional, Schougaard, Liv Marit Valen, additional, and Team, The AmbuFlex, additional

Published
2022
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