Clinical and patient-reported trajectories at end-of-life in older patients with advanced CKD
Authors: Chesnaye Nicholas C , Caskey Fergus J , Dekker Friedo W , de Rooij Esther N M , Evans Marie , Heimburger Olof , Pippias Maria , Torino Claudia , Porto Gaetana , Szymczak Maciej , Drechsler Christiane , Wanner Christoph , Jager Kitty J ,   the EQUAL study investigators, Schneider Andreas , Torp Anke , Iwig Beate , Perras Boris , Marx Christian , Drechsler Christiane , Blaser Christof , Wanner Christoph , 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 
Published: May 2023

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 &lt;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.