and Penney Upton2
(1)
Faculty of Health, University of Canberra, Canberra, Aust Capital Terr, Australia
(2)
Institute of Health and Society, University of Worcester, Worcester, UK
Box 4.1: Key Points
Quality of life and well-being are umbrella terms that refer to an individual’s subjective ratings of their satisfaction with life, and affective state respectively;
Despite being widely used, these terms are poorly defined and often misused; for example, although often used interchangeably, quality of life and well-being are not synonyms, nor are they on the same continuum;
Health related quality of life is an important patient reported outcome that measures the (negative) impact of the wound and treatment strategies on daily functioning and mental health (deficit model);
In contrast well-being assesses the presence of positive psychological variables that may protect the patient’s mental health (resource model);
Assessment currently focuses on the deficit model, however this is limited, as the absence of mental health problems should not be taken to indicate good well-being;
Given what we already know about psychological health, increasing the focus on well-being may provide a mechanism through which to boost a patient’s psychological resources thereby reducing anxiety, stress and pain, and accelerate the healing process.
Summary
The assessment of quality of life (QoL) has become progressively important over the past 25 years. In clinical settings this is usually called health related quality of life (HRQoL), which has become well-established as an essential patient reported outcome measure (PROM). A related concept, which is garnering increasing interest, is subjective well-being. Despite some commonalities, HRQoL and well-being should be treated as separate concepts; they should not be used as synonyms. In short, HRQoL refers to the cognitive appraisal which a patient makes about the impact their health has on their daily life, whilst well-being concerns a patient’s emotional response to their wound, its treatment and their future. This chapter explores these concepts in more detail, beginning by explaining the theoretical foundations of QoL and wellbeing, and describing the conceptual models that can be applied to wound care. Ways of measuring QoL and well-being are also discussed, before finally the implications for practice, and the benefits for patient care are determined.
Introduction
Researchers and health care professionals place great importance on the improvement and maintenance of the QoL and well-being of chronically ill patients (Herber et al. 2007). Today QoL measures are routinely used to evaluate psychosocial and economic costs and benefits of various health interventions; indeed their inclusion as an outcome measure in randomised control trials (RCT) has become standard practice (Fayers and Machin 2007). This is in part a response to the recognition that whilst advances in medical science have enabled us to increase longevity, this is often at a cost. For example, many chronic wounds result from other long term conditions such as diabetes, vascular disease, obesity or spinal cord injury, as well as being a corollary of an aging population (Sen et al. 2009). Treatments may be aggressive, causing as much pain and distress as the illness itself. Furthermore, despite medical advancement it is not always possible to cure. Thus in palliative care, QoL is not just an outcome, but also an endpoint measure. In both cases, patient choice becomes a vital part of the clinical decision making process (Shukla et al. 2008). Wounds have variable, and often protracted healing rates, which can lead to a wound becoming chronic even when optimum care is being provided. Clinicians may therefore need to acknowledge early on in the care process that for some patients, whilst healing may be the main intended outcome in the longer term, it may not be the priority of care. Incorporating a measure of QoL and well-being within a care pathway, shifts the focus from the wound and physical outcomes such as healing, to the whole person, with the aim of making living with a wound the best it can be.
Despite the ubiquitous nature of QoL assessment in recent years, and the assimilation of terms such as well-being into common parlance, a lack of consensus remains in both academic and clinical settings, regarding the definitions of QoL and well-being. This has led in turn to the development of a range of models and approaches to assessing QoL and well-being. Consequently, negotiating this field can be bewildering to the uninitiated. The aim of this chapter is therefore to provide a clear summary of the dominant theories and measurement approaches in the field, before providing guidance to the application of this theory and measurement in practice, and the possible value for both clinicians and patients with wounds (See Box 4.1).
Theories of QoL and Wellbeing
QoL is a hypothetical construct that acts as ‘an organising concept that exists to guide its users’ (Wallander 2001). In other words it has no physical foundation, but is rather inferred from first-hand experience and theoretical knowledge. Given this definition, it is not surprising that it has been referred to as a ‘vague, ethereal construct’ (Shukla et al. 2008). It is also a concept that is applied widely from economics, through social policy to health. This wide application, coupled with its hypothetical foundations, also explains why there is such difficulty in agreeing a definition; definitions vary in part depending on the aspect of our daily lives to which QoL is being applied, and the perspective of the user. In fact it has been suggested that having multiple definitions is helpful from a theoretical perspective (Wallander 2001), as it allows users to actualise the definition which best suits their needs. Thus an economist, social policy maker and a clinician can work with the definitions that is most apt for their purposes. Well-being is also a very abstract concept, and like quality of life definitions are known to be both ‘ambiguous’ and nebulous’ (Galloway et al. 2006). However, this is not helpful from an applied perspective, and so the aim of this section is to provide a useful working definition that can be employed in clinical practice.
QoL is a complex phenomenon that concerns an individual’s satisfaction with all aspects of life from the physical to the social and psychological. It is affected by many factors including income, social and physical environment, interpersonal relationships and health. The World Health Organisation (WHO) defined QoL as:
‘an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns’(p1, WHO 1997)
Usually in health care settings the focus is on assessing the impact of changes in health status on a patient’s QoL; this type of assessment is very specific and should be referred to as health related QoL or HRQoL. In practice however the terms QoL and HRQoL are often used interchangeably, although it can sometimes be useful to make the distinction between HRQoL and QoL.
HRQoL is itself a complex, multidimensional construct, which focuses on an individual’s experience of the impact that their health status has on their QoL. HRQoL should not therefore be confused with either health status or functional status. Although these terms are also sometimes used interchangeably, this is conceptually inaccurate. Whilst it can be difficult to distinguishing these three concepts, it is not impossible. The difficulty lies in their shared characteristics. Health status refers to the evaluation (either objective or subjective) of a person’s state of health including any illness, treatment and level of functioning; functional status is therefore a part of health status and indicates an individual’s capacity to carry out everyday tasks (Morrison et al. 2003). This relationship is shown diagrammatically in Fig. 4.1.
Figure 4.1
The relationship between QoL, HRQoL, functional status and health status (Based on Morrison et al. (2003))
Figure 4.1 also demonstrates, health status and functioning will impact to some extent on an individual’s QoL. HRQoL therefore concerns the interface between an individual’s health status, functioning and QoL and is therefore a distinct and specific component of QoL. Of course, since HRQoL is one aspect of our overall QoL, it is inevitable that changes in HRQoL will influence overall QoL. Thus whilst in a clinical setting the measurement may focus specifically on HRQoL, when considering the impact of having a chronic wound on the individual the distinction between HRQoL and QoL is less clear.
According to Draper and Thompson (2001), HRQoL is one of the most widely used terms in the health care profession, being applied across professions (nursing, allied health, health economists, public health) and activities (e.g. research, medical ethics, health services management). Despite this, there is no consensus on definition, even at this level of specificity. Different ways of conceptualizing HRQoL can therefore be found throughout the literature (Rapley 2003; Lach et al. 2006). As with QoL, definitions appear to depend upon the perspective and purpose of the clinician or researcher; for example, a surgeon is most likely to focus on HRQoL as a tool to assess health outcomes following life saving treatment, whereas an epidemiologist will want to assess the determinants of HRQoL.
Wellbeing is also sometimes used as a synonym for QoL, and again this is neither correct nor desirable. Well-being has been defined as:
‘a holistic, subjective state which is present when a range of feelings, among them energy, confidence, openness, enjoyment, happiness, calm and caring are combined and balanced’ (Pawlyn and Carnaby 2009)
Although QoL and well-being inevitably overlap – both are subjective assessments and both refer to psychological states – and the terms are often used interchangeably, it is important to distinguish between the two. In essence, QoL refers to a person’s cognitive assessment of their overall standard of living, or their ‘personal assessment of life satisfaction’ (Price and Harding 2004). As can be seen from the WHO definition, QoL asks about an individual’s perception of what their life is like. In contrast, the term ‘well-being’ refers to the presence of positive emotions and contentment, with the absence of long-lasting and persistent negative emotions (e.g. Zikmund 2003; CDC 2011). Well-being therefore refers to an individual’s emotional response to what their life is like. In essence, QoL (and therefore HRQoL) concerns the cognitive appraisal of an individual’s situation, whereas well-being refers to their emotional appraisal. This is a very clear distinction, one that can help provide a useful working definition which can be applied in practice.
In summary, QoL is a broad concept, an umbrella term which encompasses HRQoL, and is related to well-being. As noted earlier, a number of factors impact upon our QoL including health, income, social status and of course our well-being. It is of course just as likely that our well-being is in turn influenced by these same factors – health, income, social status and QoL. It is therefore probably more accurate to view QoL and well-being as interdependent factors that work together in a dynamic relationship.
The relationship between well-being and QoL is undoubtedly a complex one. To begin to work this out, we first need to understand how individuals reach an assessment of their QoL. It is usually suggested that QoL is the gap between a person’s expectations and their fulfilment. This is commonly known as ‘gap theory’ and is illustrated in Fig. 4.2. Thus it is assumed that poorer QoL is the result of discrepancies between an individual’s actual (‘like me’) and ideal self (‘how I would like to be’) (Eiser and Eiser 2000). As Fig. 4.2 demonstrates this can fluctuate over time as functioning and expectations change. Figure 4.2 illustrates how a person’s QoL might fluctuate over time. Thus at Time 2 an event, such as diagnosis of a venous ulcer provokes a change in a person’s perception of themselves, thus widening the gap between actual and ideal self and lowering QoL. At Time 3 the same individual has come to terms with their altered functioning and lowered their expectations of their ideal self in line with this change in actual self. The gap has therefore diminished and QoL will have improved, even if it may not be back to the initial level. As health improves so expectations of self increase and QoL returns to its original set point.
Figure 4.2
An illustration of gap theory
One idea about how we arrive at this ideal and actual self is the social comparison theory. This theory proposes that we make QoL judgements by comparing ourselves, our status and/or our situation with that of others (Suls et al. 2002). Sometimes we choose to compare ourselves to others who are in a more fortunate situation than we are, at other times we might compare ourselves to individuals or groups who are worse off than we are. Either of these comparisons can result in enhancement or diminishment of our own situation – and therefore either widen or shrink the gap between reality and aspiration. For example, a patient undergoing NPWT might compare themselves with someone else who has undergone the same treatment for the same diagnosis and is now cured, and believe that they too will get better. The cured role model therefore provides hope and inspiration by demonstrating what can be achieved (Suls et al. 2002). Alternatively comparison to someone who is more fortunate could suggest to an individual that they are relatively disadvantaged, leading to a reduction in QoL assessment. In contrast a patient being treated with traditional wound care might look at someone who they see as worse off than they are (undergoing NPWT for example) and feel better about their own situation so enhancing their own perceived QoL, or remind them that their own status could also decline leading to reduced QoL. So just what influences whether or not social comparison serves a self-enhancement function?
One factor that may influence these social comparisons is affect (Wheeler and Miyake 1992). This is consistent with affect-cognition theories in psychology, which suggests that negative emotions elicit negative thoughts about the self and vice versa. Thus individuals who are feeling positive will further enhance these feelings by making a comparison that either re-enforces the superiority of their own position or provides inspiration and hope for the future; individuals who are feeling unhappy will boost their misery further by making unfavourable comparisons of their own situation to that of others or through the despair that is aroused by identification with those who are in a worse situation than themselves. This may also explain in part, the relationship between QoL – our cognitive assessment of our situation – and wellbeing – how positive we feel. Thus by compelling individuals into making favourable social comparisons, the presence of positive emotion may mediate (protect) against some of the more detrimental effects of living with a wound.
Measuring Quality of Life
HRQoL measurement has been considered one of the most difficult and challenging areas faced by health care professionals (Lyons 2005). This is in part due to the subjective nature of QoL, which means that it cannot be measured by objective observation, it can only be assessed by patient self-report measurement. Furthermore such patient reports cannot be verified by another individual, or by observation alone (Colver 2006).
HRQoL can be assessed using either qualitative or quantitative techniques; in practice quantitative fixed-response measures such as questionnaires are normally used in a clinical setting. Such quantitative HRQoL measurement usually takes one of two possible approaches, generic or condition specific assessment.
Generic questionnaires measure broad aspects of HRQoL and provide a general sense of the effects of health on well-being and function. Questions cover general issues of health such as whether or not an individual has experienced any aches or pains and what impact that has had on their QoL. The questions are therefore applicable to the general population and measures can be applied to any disease group and even healthy individuals.
The second approach uses measures that are specific to a condition or population. Questions therefore concern issues related to a particular illness and its treatment. Thus a measure designed to assess the HRQoL of a patient with a wound, would ask about the impact of wound related symptoms such as wound pain and exudate on an individual’s QoL. Questions are also likely to address issues such as the effect of treatments factors such as dressings change, compression bandaging or NPWT. Thus a condition-specific measure covers issues pertaining to a specific disease or population and as such can only be applied to the disease or population for which they were developed
Because of this specificity, such instruments are likely to be more powerful at detecting intervention effects than generic instruments. This is not to say that condition–specific instruments provide “better” assessments of HRQoL, rather the choice of generic or specific depends on the purpose of the assessment. Thus generic measures should be used for comparisons of HRQoL across different wound types, and between those with a chronic wound and those without. They can therefore be administered to different populations to examine the impact of general health care initiatives and as such offer potential for measuring change in a population. Condition specific measures will however be more useful when making comparisons within a specific disease or population – for example when considering the relative benefits and costs of different treatment regimes for individuals with wounds. Examples of both generic and disease specific measures commonly applied to wound care populations is given in Table 4.1 .
Table 4.1
Measures of quality of life typically administered to patients with wounds
Measures of quality of life | Type |
|---|---|
Cardiff wound impact schedule (CWIS) | Wound specific |
Charing cross venous leg ulcer questionnaire (CCVLUQ) | Wound specific |
Sheffield Preference-based Venous Ulcer questionnaire (SPVU-5D) | Wound specific |
Skindex | Wound specific |
Hyland New Ulcer Specific Tool | Wound specific |
WoundQoL | Wound specific |
Nottingham health profile (NHP) | Generic |
Philadelphia geriatric centre multi-level assessment instrument | Generic |
SF-36 | Generic |
EuroQoL (EQ-5D) | Generic |
Whilst generic and disease specific measures have a different focus for their questions, both share a multidimensional construct that integrates a number of features including physical, social and psychological functioning (see Table 4.2). In practice, many measures follow the WHO statement that health is “a state of complete physical, mental, and social well-being; not merely the absence of disease” (WHO 1948) as their conceptual foundation and often focus specifically on the impact of illness and treatment on these aspects of daily life. According to Varni et al. (2003) HRQoL instruments must be multidimensional, consisting at the minimum of the physical, mental, and social health dimensions delineated by the World Health Organization (WHO 1948). These core components of physical, mental and social functioning may therefore be supplemented with additional dimensions such as patient satisfaction and spirituality (Cella 1997). Table 4.2 clearly demonstrates this. All three generic and three wound specific measures cover the minimum domains of physical, social and emotional functioning. However each measure also includes a range of other domains including vitality, cosmeis, pain and smell.
Table 4.2
Domains covered by quality of life typically administered to patients with wounds
SF36 | EQ-5D | Nottingham health profile | Charing cross VLU | Cardiff wound profile | SPVU-5D |
|---|---|---|---|---|---|
8 Domains: | 5 Domains: | 6 Domains: | 4 Domains: | 4 Domains: | 5 Domains: |
Physical functioning | Mobility | Physical mobility | Domestic activities | Physical symptoms | Mobility |
Role limitations- physical | Self-care
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