title: The patient perspective: Quality of life in advanced heart failure with frequent hospitalisations.
abstract: End of life is an unfortunate but inevitable phase of the heart failure patients' journey. It is often preceded by a stage in the progression of heart failure defined as advanced heart failure, and characterised by poor quality of life and frequent hospitalisations. In clinical practice, the efficacy of treatments for advanced heart failure is often assessed by parameters such as clinical status, haemodynamics, neurohormonal status, and echo/MRI indices. From the patients' perspective, however, quality-of-life-related parameters, such as functional capacity, exercise performance, psychological status, and frequency of re-hospitalisations, are more significant. The effects of therapies and interventions on these parameters are, however, underrepresented in clinical trials targeted to assess advanced heart failure treatment efficacy, and data are overall scarce. This is possibly due to a non-universal definition of the quality-of-life-related endpoints, and to the difficult standardisation of the data collection. These uncertainties also lead to difficulties in handling trade-off decisions between quality of life and survival by patients, families and healthcare providers. A panel of 34 experts in the field of cardiology and intensive cardiac care from 21 countries around the world convened for reviewing the existing data on quality-of-life in patients with advanced heart failure, discussing and reaching a consensus on the validity and significance of quality-of-life assessment methods. Gaps in routine care and research, which should be addressed, were identified. Finally, published data on the effects of current i.v. vasoactive therapies such as inotropes, inodilators, and vasodilators on quality-of-life in advanced heart failure patients were analysed.
authors.affiliation: Helsinki University Central Hospital, Helsinki, Finland. Electronic address: markku.nieminen@hus.fi.
authors.forename: Markku S
authors.initials: MS
authors.lastname: Nieminen
authors.affiliation: University of Bergen, Stavanger University Hospital, Norway.
authors.forename: Kenneth
authors.initials: K
authors.lastname: Dickstein
authors.affiliation: S. Francisco Xavier Hospital, CHLO, NOVA Medical School, Faculdade de Ciências Médicas, Universidade Nova de Lisboa, Portugal.
authors.forename: Cândida
authors.initials: C
authors.lastname: Fonseca
authors.affiliation: División de Educación en Salud, UMAE Hospital de Cardiología Centro Médico Nacional Siglo XXI, Instituto Mexicano del Seguro Social, Mexico.
authors.forename: Jose Magaña
authors.initials: JM
authors.lastname: Serrano
authors.affiliation: Second University Cardiology Clinic, Attiko Teaching Hospital, Athens, Greece.
authors.forename: John
authors.initials: J
authors.lastname: Parissis
authors.affiliation: Department of Cardiovascular, Respiratory, Nephrology and Geriatric Science, University of Rome, Italy.
authors.forename: Francesco
authors.initials: F
authors.lastname: Fedele
authors.affiliation: Department of Cardiology, Akademiska Hospital, Uppsala, Sweden.
authors.forename: Gerhard
authors.initials: G
authors.lastname: Wikström
authors.affiliation: Critical Cardiology Department, Centro Cardiologico Monzino, Milan, Italy.
authors.forename: Piergiuseppe
authors.initials: P
authors.lastname: Agostoni
authors.affiliation: Department of Cardiology, Galilee Medical Center, Nahariya, Israel.
authors.forename: Shaul
authors.initials: S
authors.lastname: Atar
authors.affiliation: Department of Intensive Care, Klinikum Dortmund, Germany.
authors.forename: Loant
authors.initials: L
authors.lastname: Baholli
authors.affiliation: Cardiology Department, Hospital Universitario de Santa Maria, Lisbon, Portugal.
authors.forename: Dulce
authors.initials: D
authors.lastname: Brito
authors.affiliation: IMIM Hospital del Mar Medical Research Institute, Barcelona, Spain.
authors.forename: Josep Comín
authors.initials: JC
authors.lastname: Colet
authors.affiliation: Department of Cardiology, University of Debrecen, Hungary.
authors.forename: István
authors.initials: I
authors.lastname: Édes
authors.affiliation: Fundación Valle del Lili, Cali, Colombia.
authors.forename: Juan E
authors.initials: JE
authors.lastname: Gómez Mesa
authors.affiliation: Department of Intensive Internal Medicine, University Medical Center Ljubljana, Slovenia.
authors.forename: Vojka
authors.initials: V
authors.lastname: Gorjup
authors.affiliation: Heart Failure, Heart Transplant Department, Centro Médico Zambrano Hellion, Heart Failure Clinic Unidad Médica de Alta Especialidad, Hospital de Cardiología No. 34, IMSS Monterrey Nuevo León, Mexico.
authors.forename: Eduardo Herrera
authors.initials: EH
authors.lastname: Garza
authors.affiliation: Cardiology and Coronary Care Department, Clinico Santiago de Compostela, Spain.
authors.forename: José R
authors.initials: JR
authors.lastname: González Juanatey
authors.affiliation: Clinical Department of Anaesthesiology and Intensive Care, University Hospital of Split, Croatia.
authors.forename: Nenad
authors.initials: N
authors.lastname: Karanovic
authors.affiliation: Heart Failure Clinic & Echo Lab, Gennimatas General Hospital of Athens, Greece.
authors.forename: Apostolos
authors.initials: A
authors.lastname: Karavidas
authors.affiliation: Cardiology Intensive Care Unit, O. Bogomolets National Medical University, Kiev, Ukraine.
authors.forename: Igor
authors.initials: I
authors.lastname: Katsytadze
authors.affiliation: Critical Care, Orion Pharma, Espoo, Finland.
authors.forename: Matti
authors.initials: M
authors.lastname: Kivikko
authors.affiliation: Bakulev Scientific Center for Cardiovascular Surgery, Moscow, Russia.
authors.forename: Simon
authors.initials: S
authors.lastname: Matskeplishvili
authors.affiliation: Heart and Vascular Center, Semmelweis University, Budapest, Hungary.
authors.forename: Béla
authors.initials: B
authors.lastname: Merkely
authors.affiliation: Department of Cardiovascular Science, University of Insubria, Circolo Hospital and Macchi Foundation, Varese, Italy.
authors.forename: Fabrizio
authors.initials: F
authors.lastname: Morandi
authors.affiliation: Clínica El Rosario, Medellin, Colombia.
authors.forename: Angel
authors.initials: A
authors.lastname: Novoa
authors.affiliation: Department of Cardiology, Niguarda Ca'Granda Hospital, Milan, Italy.
authors.forename: Fabrizio
authors.initials: F
authors.lastname: Oliva
authors.affiliation: Department of Cardiology, Cardiovascular Center, Na Homolce Hospital, Prague, Czech Republic.
authors.forename: Petr
authors.initials: P
authors.lastname: Ostadal
authors.affiliation: Hospital das Clínicas da Faculdade de Medicina, University of São Paulo, Brazil.
authors.forename: Antonio
authors.initials: A
authors.lastname: Pereira-Barretto
authors.affiliation: Critical Care, Orion Pharma, Espoo, Finland.
authors.forename: Piero
authors.initials: P
authors.lastname: Pollesello
authors.affiliation: Institute of Anaesthesiology, University Hospital Zurich, Switzerland.
authors.forename: Alain
authors.initials: A
authors.lastname: Rudiger
authors.affiliation: Department of Internal Medicine, Kliniken Nordoberpfalz, Weiden, Germany; Teaching Hospital of the University of Regensburg, Germany.
authors.forename: Robert H G
authors.initials: RH
authors.lastname: Schwinger
authors.affiliation: Department of Internal Medicine 1, University Hospital Krems, Karl Landsteiner University of Health Sciences, Austria.
authors.forename: Manfred
authors.initials: M
authors.lastname: Wieser
authors.affiliation: Scientific Research Institute of Physico-Chemical Medicine of the Federal Medico-Biological Agency of the Russian Federation, Moscow, Russia.
authors.forename: Igor
authors.initials: I
authors.lastname: Yavelov
authors.affiliation: Department of Cardiology, Cardiology Intensive Care Unit, The 4th Military Hospital, Wroclaw, Poland.
authors.forename: Robert
authors.initials: R
authors.lastname: Zymliński
mesh_terms: D018450:Disease Progression; D006333:Heart Failure / Q000401:mortality / Q000523:psychology* / Q000628:therapy; D006760:Hospitalization / Q000639:trends*; D006801:Humans; D011788:Quality of Life / Q000523:psychology*; D015996:Survival Rate / Q000639:trends; D016896:Treatment Outcome
keywords: Advanced heart failure; Levosimendan; Nesiritide; Nitroprusside; Quality of life; Trade-off