Linköping University Post Print
The value of the quality of life
Tiny Jaarsma and Ivonne Lesman-Leegte
N.B.: When citing this work, cite the original article.
This is a pre-copy-editing, author-produced PDF of an article accepted for publication in EUROPEAN JOURNAL OF HEART FAILURE following peer review. The definitive publisher-authenticated version:
Tiny Jaarsma and Ivonne Lesman-Leegte, The value of the quality of life, EUROPEAN JOURNAL OF HEART FAILURE, (12), 9, 901-902, 2010.
is available online at http://dx.doi.org/10.1093/eurjhf/hfq142 Copyright: Oxford University Press
http://www.oxfordjournals.org/
Postprint available at: Linköping University Electronic Press http://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-58767
Title page: Type: editorial
Title: The value of the quality of life (editorial to Iqbal et al)(HF-10-091-MD)
Authors
Tiny Jaarsma
Department of Social and Welfare Studies, Faculty of Health Sciences Linköping University, Norrköping, Sweden
Ivonne Lesman
Department of Cardiology, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands
2
The value of the quality of life
“It would seem important to devote more of the energies of man to improving the quality of life, so that it may be joyous or noble or creative. Otherwise, existence is nothing but the bored molecular unwinding of a dismal biological clock” [1]
This rather old quote reflects the feeling that accompanies most of us in discussing the value of quality of life during a nice evening with some colleagues debating on the meaning of life and the importance of living a good life. We all want to have a good healthy life with a high quality. However, these reflections are not always mirrored in our daily practice in treating HF patients or studying the effect of new drugs, devices or interventions. From a logical and human point of view we find it important to improve quality of life of our HF patients, but only a limited number of studies specifically address quality of life. Furthermore, the current data are not always applicable to daily practice since data on quality of life in HF patients are mainly derived from clinical trials in which relatively young male patients are included based on stringent selection criteria whereas the HF population is characterised by a
growing number of elderly female patients and patients with several chronic conditions. [2]
Addressing quality of life in HF patients deserves more attention for several reasons. Firstly, nowadays, patients live longer with HF and their symptoms and consequences of treatment not only affect physical dimensions of life but also social and
psychological dimension in several stages of the disease trajectory. [3] Secondly, the quality of life of HF patients is known to be poorer compared with age- and gender-matched healthy persons, as well as with patients with other chronic diseases. [4] In
the ESC guidelines improving quality of life is recognized as one of the major treatment goals in heart failure. [5] As the symptomatic burden of HF still is a major issue, it is important to get more insight in the value of health and quality of life and interventions to improve them. Thirdly, patient preferences and patient centred outcomes are recognized as becoming increasingly important. Some HF patients give equal or more importance to quality of life as compared to length of life. [6] Finally, in predicting outcomes, quality of life seems to be an important variable that no longer can be ignored. In this issue of the European Journal of Heart Failure Iqbal and colleagues [7] report on the impact of quality of life on clinical outcomes with data from 3 year follow up after assessment of quality of life. In a multivariable analysis they found that higher NYHA class, poor socioeconomic status and lack of social support results in poor quality of life in HF patients which in turn leads to an increased risk of hospital admissions and death. It is one of the first studies that specifically addressed the role of the social support in quality of life. Earlier research already reported on the relationship between social support and outcomes [8], but long term prospective data on quality of life were scarce.
Quality of life is increasingly incorporated as outcome in clinical trials evaluating medication, telemedicine or disease management [9-11]. In addition, quality of life and clinical status are now more often part of composite endpoints. Such clinical composite scores combine decrease of symptoms (e.g. NYHA-class), well-being and decrease in specific quality of life domains together with the information provided of the occurrence of major clinical events. This score is
currently used as primary endpoints in trials evaluating cardiac resynchronization and telemonitoring. [12]. Such an outcome is expected to be valuable reflecting more
4 realistic outcomes and at the same time being more sensitive and therefore needed less immense sample sizes to evaluate therapy and management of care.
Adding up the relevance of quality of life for clinical practice, for research and for the individual patients, the value of quality of life cannot be ignored. It therefore seems vital to develop and evaluate interventions that effectively improve quality of life in HF patients.
References
1. Lasagna L. 1962 The Doctors’ Dilemmas. Harper New York, NY
2. Van Jaarsveld CH, Ranchor AV, Kempen GIJM, Coyne JC, van Veldhuisen DJ, Sanderman R. Epidemiology of heart failure in a community-based study of subjects agend > or = 57 years: incidence and long-tem survival. Eur J Heart Fail 2006; 8:23-30.
3. Jaarsma T, Beattie JM, Ryder M, Rutten FH, McDonagh T, Mohacsi P, et al. Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail 2009; 11:433-43.
4. Lesman-Leegte I, Jaarsma T, Coyne JC, Hillege HL, van Veldhuisen DJ, Sanderman S. Quality of life and depressive symptoms in the elderly: a comparison between patients with heart failure and age and gender matched community controls. J Cardiac Fail 2009;15:17-23.
5. Dickstein K, Cohen-Solal A, Filippatos G, et al. ESC guidelines for the diagnosis and treatment of acute and chronic heart failure 2008: the Task Force for the diagnosis and treatment of acute and chronic heart failure 2008 of the European Society of Cardiology. Eur J Heart Fail 2008;10:933-89. 6. Lewis EF, Johnson PA, Johnson W, Collins C, Griffin L, Stevenson LW.
Preferences for quality of life or survival expressed by patients with heart failure.J Heart Lung Transplant 2001;20:1016-24.
7. Iqbal J, Francis L, Reid J, Murray S, Denvi M. Quality of life in patients with chronic heart failure and their carers: a 3 year follow-up study assessing hospitalisation and mortality. J Heart Fail 2010 (this issue).
6 8. Luttik ML, Jaarsma T, Veeger N, van Veldhuisen DJ. Marital status, quality of life, and clinical outcome in patients with heart failure. Heart Lung 2006;35:3-8.
9. Parthasarathy HK, Pieske B, Weisskopf M, Andrews CD, Brunel P, Struthers AD, MacDonald TM. A randomized, double-blind, placebo-controlled study to determine the effects of valsartan on exercise time in patients with
symptomatic heart failure with preserved ejection fraction. Eur J Heart Fail 2009;11:980-9.
10. Piotrowicz E, Baranowski R, Bilinska M, Stepnowska M, Piotrowska M, Wójcik A, Korewicki J, Chojnowska L, Malek LA, Klopotowski M, Piotrowski W, Piotrowicz R. A new model of home-based telemonitored cardiac rehabilitation in patients with heart failure: effectiveness, quality of life, and adherence. Eur J Heart Fail 2010;12:164-71.
11. Austin J, Williams WR, Hutchison S. Multidisciplinary management of elderly patients with chronic heart failure: five year outcome measures in death and survivor groups. Eur J Cardiovasc Nurs 2009;8:34-9
12. Arya A, Block M, Kautzner J, Lewalter T, Mörtel H, Sack S, Schumacher B, Søgaard P, Taborsky M, Husser D, Hindricks G; IN-TIME investigators Influence of Home Monitoring on the clinical status of heart failure patients: Design and rationale of the IN-TIME study. Eur J Heart Fail 2008;10:1143-8.