Clinical and patient-reported trajectories at end-of-life in older patients with advanced CKD
Author:
Chesnaye Nicholas C12, Caskey Fergus J3, Dekker Friedo W4, de Rooij Esther N M4, Evans Marie5ORCID, Heimburger Olof6, Pippias Maria37, Torino Claudia8, Porto Gaetana9, Szymczak Maciej10, Drechsler Christiane11, Wanner Christoph11ORCID, Jager Kitty J12, Schneider Andreas, Torp Anke, Iwig Beate, Perras Boris, Marx Christian, Drechsler Christiane, Blaser Christof, Wanner ChristophORCID, Emde Claudia, Krieter Detlef, Fuchs Dunja, Irmler Ellen, Platen Eva, Schmidt-Gürtler Hans, Schlee Hendrik, Naujoks Holger, Schlee Ines, Cäsar Sabine, Beige Joachim, Röthele Jochen, Mazur Justyna, Hahn Kai, Blouin Katja, Neumeier Katrin, Anding-Rost Kirsten, Schramm Lothar, Hopf Monika, Wuttke Nadja, Frischmuth Nikolaus, Ichtiaris Pawlos, Kirste Petra, Schulz Petra, Aign Sabine, Biribauer Sandra, Manan Sherin, Röser Silke, Heidenreich Stefan, Palm Stephanie, Schwedler Susanne, Delrieux Sylke, Renker Sylvia, Schättel Sylvia, Stephan Theresa, Schmiedeke Thomas, Weinreich Thomas, Leimbach Til, Stövesand Torsten, Bahner Udo, Seeger Wolfgang, Cupisti Adamasco, Sagliocca Adelia, Ferraro Alberto, Mele Alessandra, Naticchia Alessandro, Còsaro Alex, Ranghino Andrea, Stucchi Andrea, Pignataro Angelo, De Blasio Antonella, Pani Antonello, Tsalouichos Aris, Antonio Bellasi, Iorio Biagio Raffaele Di, Alessandra Butti, Abaterusso Cataldo, Somma Chiara, D'alessandro Claudia, Torino Claudia, Zullo Claudia, Pozzi Claudio, Bergamo Daniela, Ciurlino Daniele, Motta Daria, Russo Domenico, Favaro Enrico, Vigotti Federica, Ansali Ferruccio, Conte Ferruccio, Cianciotta Francesca, Giacchino Francesca, Cappellaio Francesco, Pizzarelli Francesco, Greco Gaetano, Porto Gaetana, Bigatti Giada, Marinangeli Giancarlo, Cabiddu Gianfranca, Fumagalli Giordano, Caloro Giorgia, Piccoli Giorgina, Capasso Giovanbattista, Gambaro Giovanni, Tognarelli Giuliana, Bonforte Giuseppe, Conte Giuseppe, Toscano Giuseppe, Del Rosso Goffredo, Capizzi Irene, Baragetti Ivano, Oldrizzi Lamberto, Gesualdo Loreto, Biancone Luigi, Magnano Manuela, Ricardi Marco, Bari Maria Di, Laudato Maria, Sirico Maria Luisa, Ferraresi Martina, Provenzano Michele, Malaguti Moreno, Palmieri Nicola, Murrone Paola, Cirillo Pietro, Dattolo Pietro, Acampora Pina, Nigro Rita, Boero Roberto, Scarpioni Roberto, Sicoli Rosa, Malandra Rosella, Savoldi Silvana, Bertoli Silvio, Borrelli Silvio, Maxia Stefania, Maffei Stefano, Mangano Stefano, Cicchetti Teresa, Rappa Tiziana, Palazzo Valentina, De Simone Walter, Schrander Anita, van Dam Bastiaan, Siegert Carl, Gaillard Carlo, Beerenhout Charles, Verburgh Cornelis, Janmaat Cynthia, Hoogeveen Ellen, Hoorn Ewout, Dekker Friedo, Boots Johannes, Boom Henk, Eijgenraam Jan-Willem, Kooman Jeroen, Rotmans Joris, Jager Kitty, Vogt Liffert, Raasveld Maarten, Vervloet Marc, van Buren Marjolijn, van Diepen Merel, Chesnaye Nicholas, Leurs Paul, Voskamp Pauline, Blankestijn Peter, van Esch Sadie, Boorsma Siska, Berger Stefan, Konings Constantijn, Aydin Zeynep, Musiała Aleksandra, Szymczak Anna, Olczyk Ewelina, Augustyniak-Bartosik Hanna, Miśkowiec-Wiśniewska Ilona, Manitius Jacek, Pondel Joanna, Jędrzejak Kamila, Nowańska Katarzyna, Nowak Łukasz, Szymczak Maciej, Durlik Magdalena, Dorota Szyszkowska, Nieszporek Teresa, Heleniak Zbigniew, Jonsson Andreas, Blom Anna-Lena, Rogland Björn, Wallquist Carin, Vargas Denes, Dimény Emöke, Sundelin Fredrik, Uhlin Fredrik, Welander Gunilla, Hernandez Isabel Bascaran, Gröntoft Knut-Christian, Stendahl Maria, Svensson Maria, Evans Marie, Heimburger Olof, Kashioulis Pavlos, Melander Stefan, Almquist Tora, Jensen Ulrika, Woodman Alistair, McKeever Anna, Ullah Asad, McLaren Barbara, Harron Camille, Barrett Carla, O'Toole Charlotte, Summersgill Christina, Geddes Colin, Glowski Deborah, McGlynn Deborah, Sands Dympna, Caskey Fergus, Roy Geena, Hirst Gillian, King Hayley, McNally Helen, Masri-Senghor Houda, Murtagh Hugh, Rayner Hugh, Turner Jane, Wilcox Joanne, Berdeprado Jocelyn, Wong Jonathan, Banda Joyce, Jones Kirsteen, Haydock Lesley, Wilkinson Lily, Carmody Margaret, Weetman Maria, Joinson Martin, Dutton Mary, Matthews Michael, Morgan Neal, Bleakley Nina, Cockwell Paul, Roderick Paul, Mason Phil, Kalra Philip, Sajith Rincy, Chapman Sally, Navjee Santee, Crosbie Sarah, Brown Sharon, Tickle Sheila, Mathavakkannan Suresh, Kuan Ying,
Affiliation:
1. ERA Registry, Amsterdam UMC location University of Amsterdam , Medical Informatics, Meibergdreef 9, Amsterdam , Netherlands 2. Amsterdam Public Health Research Institute , Quality of Care, Amsterdam , the Netherlands 3. Population Health Sciences, Bristol Medical School, University of Bristol, Bristol , UK 4. Department of Clinical Epidemiology, Leiden University Medical Center , Leiden , the Netherlands 5. Renal unit, department of Clinical Intervention and technology (CLINTEC), Karolinska Institutet and Karolinska University hospital , Stockholm , Sweden 6. Department of Clinical Sciences Intervention and Technology, Karolinska University Hospital Huddinge , Stockholm , Sweden 7. Renal unit, Southmead Hospital , North Bristol Trust, Bristol , UK 8. IFC-CNR, Clinical Epidemiology and Pathophysiology of Renal Diseases and Hypertension , Reggio Calabria, Italy 9. GOM Bianchi Melacrino Morelli, Reggio Calabria , Italy 10. Department of Nephrology and Transplantation Medicine, Wroclaw Medical University , Wroclaw , Poland 11. Division of Nephrology, University Hospital of Würzburg , Würzburg, Germany
Abstract
ABSTRACT
Background
We explore longitudinal trajectories of clinical indicators, patient-reported outcomes, and hospitalizations, in the years preceding death in a population of older patients with advanced chronic kidney disease (CKD).
Methods
The EQUAL study is a European observational prospective cohort study with an incident eGFR <20 ml/min per 1.73 m2 and ≥65 years of age. The evolution of each clinical indicator was explored using generalized additive models during the 4 years preceding death.
Results
We included 661 decedents with a median time to death of 2.0 years (IQR 0.9–3.2). During the years preceding death, eGFR, Subjective Global Assessment score, and blood pressure declined, with accelerations seen at 6 months preceding death. Serum hemoglobin, hematocrit, cholesterol, calcium, albumin, and sodium values declined slowly during follow-up, with accelerations observed between 6 and 12 months preceding death. Physical and mental quality of life declined linearly throughout follow-up. The number of reported symptoms was stable up to 2 years prior to death, with an acceleration observed at 1 year prior to death. The rate of hospitalization was stable at around one hospitalization per person year, increasing exponentially at 6 months preceding death.
Conclusions
We identified clinically relevant physiological accelerations in patient trajectories that began ∼6 to 12 months prior to death, which are likely multifactorial in nature, but correlate with a surge in hospitalizations. Further research should focus on how to effectively use this knowledge to inform patient and family expectations, to benefit the planning of (end-of-life) care, and to establish clinical alert systems.
Funder
Swedish Medical Association Stockholm County Council Italian Society of Nephrology Dutch Kidney Foundation National Institute for Health Research
Publisher
Oxford University Press (OUP)
Subject
Transplantation,Nephrology
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