Review
The Role of Quality of Life Indices in Patient-Centred Management of Arrhythmia

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Abstract

Clinicians obviously need to understand the impact of illness and its management on their patients’ quality of life (QOL). Objective, “hard” outcomes have taken primacy in the assessment of treatment outcomes in cardiovascular care, at least in part because they are relatively easy to measure precisely and accurately. QOL, on the other hand, is a subjective and more nebulous concept. However, decades of clinical observation and research have clearly shown that what matters most to patients is their subjective QOL, and objective measures of disease burden are less salient to their concerns. It is possible to measure QOL objectively and quantitatively using validated methods and to incorporate these into both everyday clinical care and research to measure the effect of various treatments and strategies. Physician beliefs about patients' subjective states are often imprecise and imperfectly accurate. Patient-reported QOL measures can help to predict the potential benefits of treatment; using validated measures, an estimate of the relevance of a particular amount of change in QOL can be obtained; the efficacy of different treatments from the patient’s perspective can be compared. In patient-centred care, the patient is the central focus of attention; this focus should be on patients and their subjective perceptions, more importantly than on the disease or associated laboratory measures of severity.

Résumé

Il va de soi que les cliniciens doivent comprendre les répercussions de la maladie sur la qualité de vie de leurs patients et savoir comment les prendre en charge. L'évaluation de l'efficacité des soins cardiovasculaires tient principalement compte des résultats objectifs et « tangibles », au moins en partie parce qu’ils sont relativement faciles à mesurer avec précision et exactitude. En revanche, la qualité de vie demeure un concept subjectif et plus nébuleux. Des décennies d’observation et de recherche clinique montrent toutefois nettement que ce qui compte le plus pour les patients est leur qualité de vie subjective; les mesures objectives du fardeau de la maladie sont moins importantes à leurs yeux. Il est possible de mesurer la qualité de vie de manière objective et quantitative grâce à des méthodes validées, qui peuvent être intégrées tant aux soins cliniques courants qu’aux activités de recherche, afin de mesurer l’effet des divers traitements et stratégies. Les croyances des médecins au sujet de l’état subjectif de leurs patients sont souvent imprécises et incomplètes. Les mesures de la qualité de vie rapportées par les patients peuvent aider à prédire les bienfaits éventuels d’un traitement; grâce à des outils de mesure validés, il est possible d’estimer l’importance d’une variation particulière de l’évaluation de la qualité de vie et de comparer l’efficacité de différents traitements du point de vue du patient. Pour prodiguer des soins réellement axés sur le patient, il faut tenir compte concrètement de ce dernier et de ses perceptions subjectives, bien plus que de la maladie ou des résultats des épreuves de laboratoire indiquant la gravité de l’atteinte.

Section snippets

Why Measure QOL?

QOL is a slippery concept. It is, by definition, subjective, and difficult for patients to articulate. How do we translate social, philosophical, and cultural concepts into a shared language we can all understand?

In the Encyclopedia Britannica, QOL is defined as follows: “The degree to which an individual is healthy, comfortable, and able to participate or enjoy life events.. The term 'quality of life' is inherently ambiguous, as it can refer both to the experience an individual has of his or

Measuring quality of life

Questionnaires (“instruments”) to measure quality of life may be generic, involving 1 or more questions for various concepts or domains (the most frequently used scale in cardiac research is the SF36 generic QOL scale), or disease specific, which are questionnaires developed for particular diseases that have a commonly observed constellation of symptoms and consequences.

Patient-reported outcomes and QOL scales are not synonymous. A questionnaire measuring QOL is 1 type of patient-reported

How Do We Interpret a Particular Score or Result of a QOL Questionnaire?

The result of a QOL questionnaire is generally simply a number. This, of course, has to be translated into a clinically meaningful concept for effective comparison within and among patients. Generally, QOL scales are calibrated within a range of minimum and maximum possible points. Importantly, there are often floor and ceiling effects so that if patients have particularly poor or particularly good QOL, even potentially relevant improvements or deterioration are hard to evaluate, given how

Patient-Centred Care

  • "Patient-centred care” is simple as a phrase but complex in practice. The Institute of Medicine defines patient-centred care as “providing care that is respectful of, and responsive to, individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”

In this respect, patient-centred care can be thought of as care that respects patients’ values and preferences and aims, at all times, to take patients’ QOL as the principal and most important

Informed Decision Making

Canadian guidelines rightly emphasize patients' values and preferences as important variables to consider in the process of decision making about treatments. However, it is not uncomplicated for patients to articulate their values and preferences without assistance from caregivers, and their expression of values and preferences may be modified by caregiver interactions. Making decisions that are rational and congruent with their values and preferences is challenging to evaluate, especially as

Objective, “Hard” Outcomes vs Subjective, “Soft” Outcomes

The specific impact of an outcome, such as a heart failure event, MI, or a recurrence of AF will not only depend on the event itself but will differ among patients with respect to the impact it will have on their QOL.

As an example, it is not at all clear that the burden of AF, as a measurable objective quantity, has any specific meaning for patients beyond the emphasis that cardiologists place on this quantity. Rather, the QOL and well being consequences of AF, which are only marginally related

A Suggested Model for Shared Decision Making

Shared decision making (SDM) has been defined as “an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences.” There are practical challenges in helping patients make the best decisions, congruent with their values and preferences.28

The way in which information is presented to patients will have a very large influence on the type and quality of

A Suggested Integrated Concept of What Determines Health-Related QOL

Figure 3 illustrates a conceptual framework to aid in understanding the connections among disease burden, symptoms, psychological predisposition, and QOL, using AF as an example.

The Figure illustrates the complex relationship of disease burden in AF to patient subjective QOL. AF burden (measured as the frequency and duration of AF) by itself has a variable impact on patient symptoms, as can be readily seen by the observation that some patients have permanent AF and no symptoms whatsoever,

The Use QOL Measures in Clinical Practice

There are 2 overlapping ways in which the objective measurement of a subjective state can be helpful in clinical practice. First, the administration a caregiver-administered scale, such as SAF scale for AF, similar to the way in which the ubiquitous NYHA functional class is used in clinical practice, can be used as a tool to quantify physicians’ clinical impressions about patients’ subjective interpretations of their health states. These measures can serve as a baseline to monitor changes over

The Use of Patient Reported Outcomes in Treatment Evaluation and Research

In most objective evaluations of treatment effectiveness, including those leading to a product or procedure regulatory approval, objective outcomes are usually the primary endpoints evaluated; this is because they are feasible, generally precise and accurate, and easily interpretable. However, from a patient perspective, subjective outcomes are potentially more important even if less reliably measured. Patient-reported outcomes are therefore increasingly used as secondary measures in cardiac

Conclusions

We must not fall into the trap of thinking about QOL as residing on 1 of 2 opposite poles of a spectrum: on 1 hand, an unquantifiable, subjective phenomenon that cannot be used as a scientific basis for decisions about the value of treatments and health outcomes; on the other hand, a precise and unvarying reflection of individual values and preferences that can numerically dictate the choices of consumers and providers of health care.

QOL judgements fall on a continuum that allows them to be

Funding Sources

The authors report no funding sources relevant to the contents of this paper.

Disclosures

The authors have no conflicts of interest to disclose.

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