3b Quality of life

Over the past 30 years, there has been a rapid growth in research on the impact of disease and treatment on the quality of life of patients. A search of PubMed reveals that in 1976, 229 articles were listed under the term ‘quality of life’. The corresponding totals in 1986, 1996 and 2006 were 676, 3130 and 10 116, respectively. Pressure to improve the cost-effectiveness of care, as well as an epidemiological shift from dealing with predominantly acute to predominantly chronic conditions, has highlighted the need to supplement traditional outcomes such as morbidity and mortality with subjective measures that focus on patients’ experiences. A further factor has been the emergence of a post-modern society in which the values of equality, empowerment and autonomy have challenged the traditional paternalism of professions.

Researchers and clinicians have developed and tested hundreds of measures of patient experiences across a wide variety of conditions. These measures are known variously as ‘Health status measures’, ‘Health-related quality of life (HRQoL) measures’ or simply ‘Quality of life measures’. Increasingly, the term ‘Patient reported outcomes’ (PROs) is used to refer to all subjective measures generated from patients. These measures occupy a continuum from highly standardized econometric methods, such as time-trade off and standard gamble, to individualized global measures. Each has it supporters, each involves different assumptions about the nature and interpretation of HRQoL and each has advantages and disadvantages. The research literature is now so vast and the available measures so numerous that it can be very confusing for anyone new to the field.

The development of HRQoL measures has been influenced by the World Health Organization (WHO) definition of health as: ‘a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.’ Most researchers (but not all), accept that there is a subcomponent of quality of life that is influenced by health and it is this we should concern ourselves with in healthcare. One widely used definition is that of Patrick and Erickson who defined HRQoL as: ‘the value assigned to the duration of life as modified by the social opportunities, perceptions, functional states, and impairments that are influenced by disease, injuries, treatments, or policy’.

Most HRQoL measures are multidimensional and usually assess symptoms, physical functioning, psychological well-being and social functioning (Table 3b.1). The most common elements include:

Rigorously designed questionnaires such as the EORTC measures or the SF36 are available that meet the requirements of reliability, validity, sensitivity and applicability. The aim is to collect standardized information often for use in clinical trials or epidemiological studies. However, the routine use of such scales in clinical practice, especially in palliative care, presents a number of problems. Much of the confusion in the HRQoL literature arises from the failure to distinguish between levels of care. The micro level is concerned with individual patients in clinical situations, the meso level is concerned with groups of patients as, for example, in a clinical trial or an institutional policy and the macro level is the level of decision-making that affects large communities. Selecting an appropriate measure of HRQoL depends on the level of analysis.

It is widely accepted that the essence of palliative care is maintaining and improving the quality of life of patients and their families. The WHO defines palliative care precisely in these terms. Therefore, the best strategy for dealing with patients in palliative care settings is simply to measure their quality of life and make sure that they receive integrated care to maximize it. However, that is easier said than done. Much of the research on quality of life in healthcare has been driven by experts in measurement and scale construction, and many of the studies have had an epidemiological or clinical trials focus rather than focusing on day to day clinical applications.

There are many good measures now available for measuring health-related quality of life in cancer patients, but most of these have been developed for assessing the impact of the disease and its treatment in the ‘pre-palliative’ phases of the illness.

The EORTC QLQ-C30 was developed by the European Organization for Research and Treatment of Cancer Quality of Life for assessing HRQoL in clinical trials. It consists of 30 questions organized into 5 scales measuring function, 1 global health/overall quality-of-life scale, 3 scales measuring symptoms (fatigue, nausea, vomiting and pain) and 6 single questions on symptoms and financial difficulties. A shortened version of the measure, the EORTC QLQ-C15-PAL has recently been developed for use in palliative care.¹ Derived from interviews with 41 patients and 66 healthcare professionals in palliative care, the measure consists of scales measuring pain, physical function, emotional function, fatigue, global health status/quality of life, nausea/vomiting, appetite, dyspnoea, constipation and sleep.

This scale was developed at McGill University specifically for use in all phases of the disease trajectory for people with a life-threatening illness. The questionnaire differs from most others in three ways: the existential domain is measured; the physical domain is important but not predominant; positive contributions to quality of life are measured. The scale generates scores on four subscales: physical symptoms, psychological symptoms, outlook on life and meaningful existence.

This is a 25-item scale for seriously ill patients aimed at measuring adaptation to and integration of their physical decline, as well as attainment of life tasks and life closure. The measure addresses five quality-of-life domains that are relevant to end-of-life care: symptom control, function, interpersonal issues, well-being and transcendence.

Questionnaire approaches to the measurement of quality of life provide important information. However, such measures have one particularly important limitation. They impose a predetermined external value system on the respondent. Someone other than the respondent has decided which questions to ask, which areas of life should be explored and what weights should be assigned to the respondent’s answers to obtain a summary score. The weights are standardized and fixed and are generally derived from grouped data. Although these measures may be reliable, they may not be relevant to an individual’s present life situation. Apparently similar behaviours do not have the same relevance or importance for all individuals. Furthermore, the relevance or importance of particular behaviours or events is unlikely to remain static for a given individual with the passage of time or over the course of an illness.

In assessing quality of life in a clinical situation, one needs to know, at a given time, what particular issues are of most concern to the patient. Individuals, even when seriously ill, are active agents, engaged in an unfolding life-cycle, involved in a continuous search for meaning and constantly striving towards the goal of self-actualization. Only individuals can judge their own experiences and they do so in the context of their own expectations, hopes, fears, values and beliefs. To quote the psychotherapist Karl Rogers, ‘the best vantage point for understanding behaviour is from the internal frame of reference of the individual himself’. In order to obtain a valid measurement of quality of life, as opposed to health status, a measure is needed that evaluates each individual on the basis of the areas of life that he or she considers to be most important, quantifies current functioning in each of these personally nominated life areas, and weights their relative importance for that individual at that particular time. A life area that is going badly for an individual but is of little importance to him or her clearly has less implication for that individual’s quality of life than a life area that is going badly but is of great importance. HRQoL measures can be supplemented by individualized QoL measures. Much is to be gained in the clinical situation from finding out what areas of life are important to the patient, the relative importance of each and the level of functioning or satisfaction with each.

Early attempts to measure HRQoL in patients with advanced incurable disease relied heavily on proxy ratings, the underlying assumption being that those patients would not be able to make such assessments themselves. It is now well established that HRQoL is subjective and the ratings provided by healthcare personnel and even by close family often do not tally with the ratings of patients. The consensus, based on research findings, is that:

These findings are hardly surprising. Health professionals evaluate patients using their own particular paradigm and this is different from that used by the patient who is experiencing the condition. Even carers who know the patient very well may be applying a particular paradigm that, again, does not tally with that of the patient. Furthermore, patients are not passive in the face of their changing circumstances but use a wide range of coping processes. Findings such as the above, highlight the importance of maintaining ongoing and excellent communication between patients, carers and health professionals.

The Greek philosopher Heraclitus famously said ‘You cannot step in the same river twice…all is flux….all is becoming…both you and the river are changed.’ There is now considerable interest in HRQoL research in exploring the psychological mechanisms by which patients adapt to their illness. patients’ judgements of their health may stay relatively stable despite large changes in objective measures of health, or their judgement of health may change in a situation where there is little or no objective change. This phenomenon, which is increasingly known as ‘response shift’, is due to the fact that patients may change the criteria they use to make their judgements. For example, a patient’s judgement of his or her health might remain stable despite objective evidence of worsening cancer because, in the course of treatment, they may have seen others who are far worse off. Response shift can help to explain apparently paradoxical findings in the health literature such as:

The important thing to remember is that patients are actively engaged in trying to cope with their condition and that they will use a variety of coping mechanisms to make their journey more meaningful and more bearable. Health professionals who have the motivation and the communication skills to share the patient’s world view by focusing, not only on the objective indicators of disease, but also on the quality of life of the individual patient can have the privilege of walking part of that journey with the patient. In Kierkegaard’s words they will have discovered the ‘secret of caring’.