SYMptoms in chronic heart failure imPACT on burden of treatment (SYMPACT): a cross-sectional survey
SYMptoms in chronic heart failure imPACT on burden of treatment (SYMPACT): a cross-sectional survey
Aims
This study aimed to describe patient-reported symptoms and burden of treatment (BoT) experienced by patients with chronic heart failure (CHF). BoT describes the illness workload, individual capacity to perform that work, and resultant impact on the individual. Overwhelming BoT is related to poor quality of life and worse clinical outcomes. This research is the first to explore symptoms and BoT in people with CHF, in the UK.
Methods and results
This is a cross-sectional questionnaire survey of CHF patients. Participants completed the Heart Failure Symptom Survey (HFSS; max score 10) and the Minnesota Living with Heart Failure Questionnaire (MLHFQ; max scores: physical 40, emotional 25, and total 105), which measured symptoms. BoT was measured with the Patient Experience with Treatment and Self-management (PETS; max score 100) questionnaires. Participant characteristics and questionnaire results were summarized using descriptive statistics. Relationships between symptoms and BoT, summarized by the workload and impact indices, were explored using Spearman's and Pearson's correlation coefficients together with scatter plots. The survey was completed by 333 participants, mean age of 71 (±13) years old. The majority (89%) were recruited from secondary care NHS trusts, and 25% were female. All types of heart failure were represented. Mean symptom scores were as follows: HFSS burden score: 2.4 (±2.1), and MLHFQ scores: physical score 20 (±12.4), emotional score 9.9 (±8.1), and total score 41.3 (±26.3). The highest mean PETS domain scores were exercise [51.3 (±24.7)], diet [40.3 (±22.7)], difficulty with healthcare services [39.9 (±21.3)], and physical and mental fatigue [36.0 (±25.7)]. Pairwise correlations were observed between HFSS scores and MLHFQ physical and emotional sub-scores with PETS workload and impact indices. Positive correlations were weak to moderate (0.326–0.487) between workload index and symptoms, and moderate to strong between impact index and symptoms (0.553–0.725). The P value was 0.006, adjusted by Bonferroni's correction.
Conclusions
Symptoms are associated with BoT in CHF patients. Although symptom burden was low, CHF patients reported higher levels of burden around self-care activities of exercise, diet, healthcare interaction, as well as physical and mental fatigue due to engagement with self-care regimens. Observed higher levels of burden were in key self-care areas for CHF and suggest areas where service delivery and support of CHF patients may be improved to reduce BoT. Clinicians could individualize their consultations by focusing on troublesome symptoms, as well as alleviating illness workload, which may better enable patients to live well with CHF.
Burden of treatment, Chronic heart failure, Cross-sectional survey, Self-care, Symptoms
2279-2290
Austin, Rosalynn C.
4bc7fd45-753b-4a78-a9d7-85fce9280c93
Schoonhoven, Lisette
46a2705b-c657-409b-b9da-329d5b1b02de
Koutra, Vasiliki
380da498-0288-4644-86c5-fb8ab984ec6b
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Kalra, Paul R.
7a4ef3d4-0168-4e03-83c4-4769c62805f4
May, Carl R.
17697f8d-98f6-40d3-9cc0-022f04009ae4
August 2022
Austin, Rosalynn C.
4bc7fd45-753b-4a78-a9d7-85fce9280c93
Schoonhoven, Lisette
46a2705b-c657-409b-b9da-329d5b1b02de
Koutra, Vasiliki
380da498-0288-4644-86c5-fb8ab984ec6b
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Kalra, Paul R.
7a4ef3d4-0168-4e03-83c4-4769c62805f4
May, Carl R.
17697f8d-98f6-40d3-9cc0-022f04009ae4
Austin, Rosalynn C., Schoonhoven, Lisette, Koutra, Vasiliki, Richardson, Alison, Kalra, Paul R. and May, Carl R.
(2022)
SYMptoms in chronic heart failure imPACT on burden of treatment (SYMPACT): a cross-sectional survey.
ESC Heart Failure, 9 (4), .
(doi:10.1002/ehf2.13904).
Abstract
Aims
This study aimed to describe patient-reported symptoms and burden of treatment (BoT) experienced by patients with chronic heart failure (CHF). BoT describes the illness workload, individual capacity to perform that work, and resultant impact on the individual. Overwhelming BoT is related to poor quality of life and worse clinical outcomes. This research is the first to explore symptoms and BoT in people with CHF, in the UK.
Methods and results
This is a cross-sectional questionnaire survey of CHF patients. Participants completed the Heart Failure Symptom Survey (HFSS; max score 10) and the Minnesota Living with Heart Failure Questionnaire (MLHFQ; max scores: physical 40, emotional 25, and total 105), which measured symptoms. BoT was measured with the Patient Experience with Treatment and Self-management (PETS; max score 100) questionnaires. Participant characteristics and questionnaire results were summarized using descriptive statistics. Relationships between symptoms and BoT, summarized by the workload and impact indices, were explored using Spearman's and Pearson's correlation coefficients together with scatter plots. The survey was completed by 333 participants, mean age of 71 (±13) years old. The majority (89%) were recruited from secondary care NHS trusts, and 25% were female. All types of heart failure were represented. Mean symptom scores were as follows: HFSS burden score: 2.4 (±2.1), and MLHFQ scores: physical score 20 (±12.4), emotional score 9.9 (±8.1), and total score 41.3 (±26.3). The highest mean PETS domain scores were exercise [51.3 (±24.7)], diet [40.3 (±22.7)], difficulty with healthcare services [39.9 (±21.3)], and physical and mental fatigue [36.0 (±25.7)]. Pairwise correlations were observed between HFSS scores and MLHFQ physical and emotional sub-scores with PETS workload and impact indices. Positive correlations were weak to moderate (0.326–0.487) between workload index and symptoms, and moderate to strong between impact index and symptoms (0.553–0.725). The P value was 0.006, adjusted by Bonferroni's correction.
Conclusions
Symptoms are associated with BoT in CHF patients. Although symptom burden was low, CHF patients reported higher levels of burden around self-care activities of exercise, diet, healthcare interaction, as well as physical and mental fatigue due to engagement with self-care regimens. Observed higher levels of burden were in key self-care areas for CHF and suggest areas where service delivery and support of CHF patients may be improved to reduce BoT. Clinicians could individualize their consultations by focusing on troublesome symptoms, as well as alleviating illness workload, which may better enable patients to live well with CHF.
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SYMptoms in chronic heart failure imPACT on burden of treatment
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ESC Heart Failure - 2022 - Austin - SYMptoms in chronic heart failure imPACT on burden of treatment SYMPACT a (1)
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Accepted/In Press date: 11 March 2022
e-pub ahead of print date: 21 April 2022
Published date: August 2022
Additional Information:
Funding Information:
This work was supported as a part of a fully funded Clinical Academic Doctoral Fellowship at the University of Southampton, Portsmouth Hospitals University NHS Trust, and the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) Wessex. This article is an independent research supported in part by the NIHR ARC Wessex.
Funding Information:
This work was supported as a part of a fully funded Clinical Academic Doctoral Fellowship at the University of Southampton, Portsmouth Hospitals University NHS Trust, and the National Institute for Health Research (NIHR) Applied Research Collaboration (ARC) Wessex. This article is an independent research supported in part by the NIHR ARC Wessex. The authors thank the individuals with heart failure who kindly gave their time to participate in this phase of SYMPACT. Serena Howe (principle investigator) at Portsmouth Hospitals University NHS Trust (PHU) and research team members Amanda Bakes, Claudia Lameirinhas, Joanna Candler, Kerrie Scott, Charlotte Turner, and Anne Withers; Simon Smith (principle investigator) at University Hospital Southampton NHS Foundation Trust and research team members Laura Baldwin, Sarah Hammond, Jake Harvey, Marta Snell, Constance Temple-Brown, and Hannah Yates; Emma McLoughlin and Joanne Taylor (principle investigators) at Solent NHS Trust and research team members Lindsey Cooke Natalie Parker, Emma Searle, and Sally Shillaker; and patient research ambassador group at PHU who continues to provide patient and public involvement for SYMPACT. For this phase, group members (Bill Ware, Anna Ganville-Hearson, Graham Edwards, Noreen Cole, Carole King, Tim Coney, Chris Staples, and Darren Jenkinson) provided introductions to community support groups, editing of patient-facing documents, creating the short name of study, informing study logo choice, and sense-checking conclusions drawn from data. A second group (Sharon Court, Dee Whitelock, Jane Ward, Carol King and Simon Brain) are helping to create a patient facing version of the results in this paper for participants. Milan Chauhan (MC), at PHU, helped develop and maintain the REDCap Cloud database and verified a portion of the data.
Publisher Copyright:
© 2022 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of European Society of Cardiology.
Keywords:
Burden of treatment, Chronic heart failure, Cross-sectional survey, Self-care, Symptoms
Identifiers
Local EPrints ID: 457667
URI: http://eprints.soton.ac.uk/id/eprint/457667
ISSN: 2055-5822
PURE UUID: 48dd28e1-deae-41e9-9d94-36af41b4d4e5
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Date deposited: 14 Jun 2022 16:58
Last modified: 16 Apr 2024 01:44
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Contributors
Author:
Rosalynn C. Austin
Author:
Vasiliki Koutra
Author:
Paul R. Kalra
Author:
Carl R. May
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