PMID- 34862295
OWN - NLM
STAT- MEDLINE
DCOM- 20220307
LR  - 20220531
IS  - 2044-6055 (Electronic)
IS  - 2044-6055 (Linking)
VI  - 11
IP  - 12
DP  - 2021 Dec 3
TI  - Quality of life and disease experience in patients with heart failure with 
      reduced ejection fraction in Spain: a mixed-methods study.
PG  - e053216
LID - 10.1136/bmjopen-2021-053216 [doi]
LID - e053216
AB  - OBJECTIVES: To gather insights on the disease experience of patients with heart 
      failure (HF) with reduced ejection fraction (HFrEF), and assess how patients' 
      experiences and narratives related to the disease complement data collected 
      through standardised patient-reported outcome measures (PROMs). Also, to explore 
      new ways of evaluating the burden experienced by patients and caregivers. DESIGN: 
      Observational, descriptive, multicentre, cross-sectional, mixed-methods study. 
      SETTING: Secondary care, patient's homes. PARTICIPANTS: Twenty patients with 
      HFrEF (New York Heart Association (NYHA) classification I-III) aged 38-85 years. 
      MEASURES: PROMs EuroQoL 5D-5L (EQ-5D-5L) and Kansas City Cardiomyopathy 
      Questionnaire and patient interview and observation. RESULTS: A total of 20 
      patients with HFrEF participated in the study. The patients' mean (SD) age was 
      72.5 (11.4) years, 65% were male and were classified inNYHA functional classes I 
      (n=4), II (n=7) and III (n=9). The study showed a strong impact of HF in the 
      patients' quality of life (QoL) and disease experience, as revealed by the 
      standardised PROMs (EQ-5D-5L global index=0.64 (0.36); Kansas City Cardiomyopathy 
      Questionnaire total symptom score=71.56 (20.55)) and the in-depth interviews. 
      Patients and caregivers often disagreed describing and evaluating perceived QoL, 
      as patients downplayed their limitations and caregivers overemphasised the poor 
      QoL of the patients. Patients related current QoL to distant life experiences or 
      to critical moments in their disease, such as hospitalisations. Anxiety over the 
      disease progression is apparent in both patients and caregivers, suggesting that 
      caregiver-specific tools should be developed. CONCLUSIONS: PROMs are an effective 
      way of assessing symptoms over the most recent time period. However, especially 
      in chronic diseases such as HFrEF, PROM scores could be complemented with 
      additional tools to gain a better understanding of the patient's status. New 
      PROMs designed to evaluate and compare specific points in the life of the patient 
      could be clinically more useful to assess changes in health status.
CI  - (c) Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No 
      commercial re-use. See rights and permissions. Published by BMJ.
FAU - Rubio, Raul
AU  - Rubio R
AUID- ORCID: 0000-0002-9881-3020
AD  - A Piece of Pie SL, Barcelona, Spain.
FAU - Palacios, Beatriz
AU  - Palacios B
AD  - Medical Department, AstraZeneca Farmaceutica Spain SA, Madrid, Spain.
FAU - Varela, Luis
AU  - Varela L
AD  - Medical Department, AstraZeneca Farmaceutica Spain SA, Madrid, Spain.
FAU - Fernandez, Raquel
AU  - Fernandez R
AD  - Medical Department, AstraZeneca Farmaceutica Spain SA, Madrid, Spain.
FAU - Camargo Correa, Selene
AU  - Camargo Correa S
AD  - A Piece of Pie SL, Barcelona, Spain.
FAU - Estupinan, Maria Fernanda
AU  - Estupinan MF
AD  - A Piece of Pie SL, Barcelona, Spain.
FAU - Calvo, Elena
AU  - Calvo E
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Jose, Nuria
AU  - Jose N
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Ruiz Munoz, Marta
AU  - Ruiz Munoz M
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Yun, Sergi
AU  - Yun S
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Jimenez-Marrero, Santiago
AU  - Jimenez-Marrero S
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Alcoberro, Lidia
AU  - Alcoberro L
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Garay, Alberto
AU  - Garay A
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Department of Cardio-Oncology, Bellvitge University Hospital, L'Hospitalet de 
      Llobregat, Spain.
FAU - Moliner, Pedro
AU  - Moliner P
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Department of Cardio-Oncology, Bellvitge University Hospital, L'Hospitalet de 
      Llobregat, Spain.
FAU - Sanchez-Fernandez, Lydia
AU  - Sanchez-Fernandez L
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Department of Cardio-Oncology, Bellvitge University Hospital, L'Hospitalet de 
      Llobregat, Spain.
FAU - Soria Gomez, Maria Teresa
AU  - Soria Gomez MT
AD  - Heart Failure Unit, Puerta de Hierro University Hospital, Madrid, Spain.
FAU - Hidalgo, Encarna
AU  - Hidalgo E
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Enjuanes, Cristina
AU  - Enjuanes C
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Calero-Molina, Esther
AU  - Calero-Molina E
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
FAU - Rueda, Yolanda
AU  - Rueda Y
AD  - CardioAlianza, Barcelona, Spain.
FAU - San Saturnino, Maite
AU  - San Saturnino M
AD  - CardioAlianza, Barcelona, Spain.
FAU - Garcimartin, Paloma
AU  - Garcimartin P
AD  - Outpatients Clinics, Hospital del Mar, Barcelona, Spain.
AD  - Department of Biomedical Research in Heart Diseases, Hospital del Mar Institute 
      for Medical Research, Barcelona, Spain.
FAU - Lopez-Ibor, Jorge V
AU  - Lopez-Ibor JV
AD  - Department of Cardiology, Puerta de Hierro University Hospital, Madrid, Spain.
FAU - Segovia-Cubero, Javier
AU  - Segovia-Cubero J
AD  - Department of Cardiology, Puerta de Hierro University Hospital, Madrid, Spain.
AD  - CIBER of Cardiovascular Diseases, Carlos III Health Institute, Madrid, Spain.
FAU - Comin-Colet, Josep
AU  - Comin-Colet J
AUID- ORCID: 0000-0001-8780-720X
AD  - Department of Cardiology and Heart Failure Program, Bellvitge University 
      Hospital, L'Hospitalet de Llobregat, Spain josepcomin@gmail.com.
AD  - Bio-Heart Cardiovascular Diseases Research Group, Bellvitge Institute for 
      Biomedical Research (IDIBELL), Hospitalet de Llobregat, Spain.
AD  - Department of Clinical Sciences, School of Medicine, University of Barcelona, 
      Barcelona, Spain.
LA  - eng
PT  - Journal Article
PT  - Multicenter Study
PT  - Observational Study
PT  - Research Support, Non-U.S. Gov't
DEP - 20211203
PL  - England
TA  - BMJ Open
JT  - BMJ open
JID - 101552874
SB  - IM
MH  - Adult
MH  - Aged
MH  - Aged, 80 and over
MH  - Cross-Sectional Studies
MH  - Female
MH  - *Heart Failure/therapy
MH  - Humans
MH  - Male
MH  - Middle Aged
MH  - *Quality of Life
MH  - Spain
MH  - Stroke Volume
MH  - Surveys and Questionnaires
PMC - PMC8647550
OTO - NOTNLM
OT  - heart failure
OT  - qualitative research
OT  - quality in health care
COIS- Competing interests: JC-C received fees from AstraZeneca for the coordination and 
      oversight of the study. RR, MFE and SCC received research funding from 
      AstraZeneca. RFdlF, BP and LV are employees of AstraZeneca. All other authors 
      report no competing interests.
EDAT- 2021/12/05 06:00
MHDA- 2022/03/08 06:00
PMCR- 2021/12/03
CRDT- 2021/12/04 05:38
PHST- 2021/12/04 05:38 [entrez]
PHST- 2021/12/05 06:00 [pubmed]
PHST- 2022/03/08 06:00 [medline]
PHST- 2021/12/03 00:00 [pmc-release]
AID - bmjopen-2021-053216 [pii]
AID - 10.1136/bmjopen-2021-053216 [doi]
PST - epublish
SO  - BMJ Open. 2021 Dec 3;11(12):e053216. doi: 10.1136/bmjopen-2021-053216.