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2.1. Seven Pillars Of Quality

Avedis Donabedian who might be considered the "father" of quality, described a model of understanding "quality" in health services incorporating the structure, process, and outcomes of the service2 where

(a) Structure encompasses the characteristics of medical care that are relatively unchanging i.e., the materials and manpower available for care.

(b) Process addresses the content of that care, i.e., how the patient was moved through and out of the health care system and the services that were provided during the care episode.

(c) Outcome pertains to the impacts or results of that care.

In his original work, it is clear that Donabedian equated quality with effectiveness i.e., the outcome of the most importance was the measurable impact of a service or intervention with effectiveness of services usually including concepts relating to

... having the organisation meet the citizens' requirements and having a programme or activity achieve its established goals or intended

aims.

Donabedian argues that in order to achieve effectiveness, it is crucial for the right structures to be determined from research studies and implemented, and that process needs to be considered principally when adverse outcomes are being investigated. His later writing in this area enlarges the original structure-process-outcomes-framework to become the "seven pillars of quality"4 which include both efficiency (defined as the cost for any given improvement in health) and optimality (the best compromise between health benefits and cost). He also includes three attributes with a patient focus: acceptability, legitimacy, and equity. Although he believes that the pursuit of each of the several attributes of quality can be mutually reinforcing, as when effective care is also usually more acceptable and more legitimate, he accepts the pursuit of one attribute may be in conflict with the pursuit of others, and that some sort of a balance is required. This notion of potential conflict within quality is crucial and Donabedian's work offers some practical ways to conceptualize this conflict and as such, provides a framework for moving forward.

2.2. The World Health Organisation

The World Health Organisation (WHO) has recently proposed a framework for the assessment of performance of national health systems5 with "performance" approximating the "optimality" of Donabedian. The WHO Report carefully avoids use of the word "quality" but is clearly interested in similar aspects of systems/services as Donabedian with the assessment of performance based on the overall attainment (effectiveness) of the system relative to the resources (structures) available. Attainment has two components: "good health" measured simply as disability adjusted life expectancy (DALE) as well as a "fairness" component which tries to adjust for variations in the distribution ofgood health. In essence, the WHO approaches attempts to measure, standardize, and compare effectiveness and efficiency for different health systems.

2.3. Operationalizing Quality

In addition to the approach adopted by WHO, others have attempted to operational-ize quality and performance generally using "quality indicators."6-8 However, these indicators tend to be arbitrarily assigned and relate more to ease of measurement than any evidence that they reflect underlying quality (or lack of it). In addition, outcomes using these indicators are often difficult to interpret as they depend on an innately predictable system, something that many argue isjust not cancer care. A recent US report "Crossing the quality chasm"9 concluded that rather than using rigid blueprints, we might be better to focus on a "good enough vision" of quality. The six aims that make up this "good enough vision" are greatly reminiscent of Donabe-dian's early work: that services be Safe, Effective, Patient Centred, Timely, Efficient, and Equitable. Such aims and the accompanying rules by which to achieve them (Table 1) seem far removed from a focus on what sometimes seem more "mechanistic" approach to quality indicators we often observe in health care settings and review.

Despite what Kelley and Tucci8 suggest to be valiant efforts in this report to help the United States reconsider its direction in delivering "quality" health care services, they comment that the report is written from a perspective that does not seem to embody the diversity of view on these rules that actually exists within even the provider community. Indeed, they go so far as to suggest that

Despite rhetoric to the contrary, American health care remains a cottage industry, where providers are preoccupied with financial survival and the challenges of regulation and litigation. They are driven by highly individualised needs, not an abstract or common desire to improve health care.8

We would probably like to think that this sort of comment is not applicable to the health services we contribute to or organize, whether in the USA or elsewhere. However, it is salutary to consider than a mismatch between the "talk" and "actuality" might prevail in many more services than we would like, even just because of competition for funding.10-12 It also seems vital that we should be at pains to avoid a situation where practitioners become increasingly concerned about safe practice in order to avoid punitive action, rather than to enhance quality, as this motivation itself may be a risk to quality.13,14

There are clearly varying views, even just within providers, regarding the different components of models proposed. Different attributes of quality are therefore

Table 1. Ten Rules for Achieving Quality Services

1. Care based on continuous healing relationships

2. Customization based on patient needs and values

3. The patient as the source of control

4. Shared knowledge and the free flow of information

5. Evidence-based decision making

6. Evidence as a system property

7. The need for transparency

8. Anticipation of needs

9. Continuous decrease of waste 10. Co-operation among clinicians

Committee on Quality of Health Care in America 2001.9

likely to be more or less relevant to each of the other stakeholders. Furthermore, attempts to measure particular attributes such as effectiveness for example, are necessarily informed by the perspective of the group doing, or requiring, the measurement.

3.0. CONSUMER'S PERSPECTIVES OF QUALITY HEALTH CARE

Having argued the case that different stakeholders will have different views about what comprises good quality care, our brief here is to focus particularly on what users of cancer services can tell us about quality.

It would seem surprising if consumers did not wish to be managed in services with features that are associated with best outcomes, frequently fitting the medical provider perspective on quality. However, in depth interviews that we have carried out with people with life threatening and other chronic conditions15-17 suggest that current models outlining the consequences of many conditions, may be missing the mark, at least in part. Further, issues of access, involvement in decision making, cultural considerations as well as the nature of the surroundings may all play a part in how patients and their families assess the quality of services we provide.

A possible reason for the mismatch between what we (as health care experts) think is important to patients, and what they (as a different sort of expert in their own condition) actually regard as important, may well be related to failing to ask them or not giving full credence to their view even if we do ask.18 This is not a pedantic point about language or semantics as it is hardly remarkable that we may be missing out on what are the key quality indicators for this important stakeholder. Certainly, it would suggest that it might be premature to adopt models of quality that call for "customisation based on patient needs and values" and "the patient as the source of control" without fully understanding what that means. Whichever way one looks at it, quality in cancer care must be a multidimensional concept and those dimensions should include the views of the consumers.

As identified in Section 2, many facets of care need to be addressed if we are to be certain of good quality care including relevance of that care.19 It is not hard to see a place in that list for the views of Black who would add humanity (if ever that can be measured).20 Vardy and Tannock21 in their comprehensive review of the area identified three particular points of relevance. Firstly, is the right treatment being given? Secondly, is it being done well? Thirdly, is the patient being treated in addition to the disease? Part of the problem of evaluating cancer care is that historically such evaluation relates predominantly to clinical outcomes with "evidence" for high-quality care coming principally from large randomized control trials. The issue is that these may miss some of the core concepts of high quality from the regular consumer's perspective, given the tight selection criteria of patients involved in trials and the application of treatment under ideal conditions which may influence the outcomes of such studies.

However, it is fair to say that the quality of evidence for quality cancer care tends to bejudged according to the robustness of that evidence: how the trial was designed, executed, and analyzed and secondly, external factors such as concordance with results of related studies. Commonly, end points in cancer trials and therefore an end point in evaluation of cancer care are tumor response, survival, and improvements in quality of life (QOL). Improvements in symptom control and/or QOL are often seen as major areas of interest for cancer survivors and the calls for a greater focus on these outcomes is rightly made.22 However, there is also a growing awareness that expert-derived outcome measures, and interventions directed at achieving these outcomes, may have limited relevance to people with cancer, particularly to terminally ill people.23

One paper we mentioned previously16 highlighted the growing recognition that cancer outcome measures, such as many of the QOL tools, may have limited validity in assessing patients' experiences and responses to care. These authors identified a central concern of consumers of such services, "taking charge" which is not clearly addressed in existing QOL measures; they also, incidentally identified that whilst preserving dignity was important, it was not commonly considered an 'ultimate' goal from a patient perspective. Whilst these findings were derived from a qualitative study involving people at the end of life they do have relevance for important outcomes for people who are undergoing cancer treatment and those who are longer term cancer survivors.

Much of the evaluation of the quality of cancer care then is dependant on the way in which the treatment is delivered. The National Cancer Institute (NCI) in the United States developed a project in 2002 entitled the "Cancer Quality of Care Measures Project."24 This project is intended to capitalize on an innovative approach for bringing public and private parties together to create "voluntary consensus standards" for decisions bearing on health care quality. As part of the study they will adapt the National Quality Forum Strategic Framework Board's report to cancer care quality and assess the state of the science of cancer quality measurement. The first phase of this project was to look at cancer site-specific measures (breast, colorectal, and prostate cancer diagnosis and treatment). The second area of phase one was to look at cross-cutting measures applied to multiple possible cancer sites involving access (including clinical trials and culturally competent care), communication and co-ordination of care, and prevention and screening within the health care system. They also looked at symptom management and end of life care. Phase two of the study which began in 2004, conducted evidence-based reviews of available measures of cancer quality to identify measures that are ready for use. It also planned to chart strategies for developing and testing new measures. This innovation from the NCI is still a long way from completion but it gives an indication of the relatively early stages of our understanding of evaluating quality of care, far less including the focus of consumers of that care explicitly in such evaluation.

Early in 2005 the National Quality Forum (NQF—atwww.qualityforum.org) announced its endorsement of a standardized survey of patients' perceptions of their experience of hospital care. The survey instrument is a 27-item survey designed and developed over 3 years by groups including providers of care and consumers. It includes questions addressing seven domains of hospital care which are all relevant to cancer care: communication and responsiveness of hospital staff, pain control, communication about medicines, the environment, and discharge information. The NQF also has as a goal, to develop a standardized framework for the selection and implementation of quality measures and also to establish overarching principles for an ideal measure set that can assess the totality of cancer care and serve as a guide for the development of new measures. One of the purposes is to identify opportunities to improve cancer care in order to reduce death, disability suffering, and the economic burden caused by cancer—very similar goals to the Cancer Control Strategy published in New Zealand.25 The goals of the New Zealand Cancer Control Strategy (as influenced by the Australian National Cancer Control Initiative and the Canadian Strategy for Cancer Control and informed by consumer views) are to:

• reduce the incidence of cancer through primary prevention

• ensure effective screening and early detection to reduce cancer incidence and mortality

• ensure effective diagnosis and treatment to reduce cancer morbidity and mortality

• improve the QOL for those with cancer, their family, and whanau through support, rehabilitation, and palliative care

• improve the delivery of services across the continuum of cancer control through effective planning, co-ordination and integration of resources and activity, monitoring, and evaluation

• improve the effectiveness of cancer control in New Zealand through research and surveillance.

Within the USA, the National Coalition for Cancer Survivorship (NCCS) has been similarly active in calling for key principles to underpin cancer care. In particular, the NCCS highlighted survivorship to be a distinct phase of the trajectory of cancer care as enduring consequences of cancer may well remain even in the absence of active disease. Indeed, cancer survivors have been shown in a large cohort study to have poorer health outcomes than matched control individuals without cancer.26 This point is a crucial reminder that although frequently considered separate fields of practice, integration of "rehabilitation" into cancer care may well be an additional requirement for many survivors. This point is further pursued in a recent exploration of cancer care for survivors27 with cancer being clearly many things, including now for many people, a chronic condition.

Within the United Kingdom, attempts to improve cancer services led to the NHS Cancer Plan28 but progress in terms of actual operations has fallen behind what was expected to date. The Cancer Plan provides a detailed account of the UK government's national programme for investment in, and reform of, cancer services in England. It aims to reduce death rates and improve prospects of survival and QOL for cancer patients. The Plan aimed to "guarantee" high-quality treatment and care throughout the country facilitated by the development of cancer networks which include the voices of consumers in their planning. The core goals of improving prevention, promoting early detection, and effective screening practice were thus influenced by consumer views on how best to achieve such improvement. However, by the end of 2005, 30% of networks visited by the National Audit Office did not have comprehensive plans for providing cancer services in their locality.29 Of particular concern is that patients are diagnosed with cancer at a later stage in the United Kingdom than in other European countries. As in other countries such as the United States this can particularly affect people from deprived areas. Facilitating access to screening and diagnostic services requires that patients have more (but also more appropriate) information to understand the referral processes and an increased understanding of warning signs and symptoms of cancer. The Expert Patient Program and its contribution to enhancing the appropriate information will be discussed in more detail in Chapter 27.

Despite what appears increasingly good intentions of delivering quality care for cancer survivors, research indicates huge room for improvement. There are many studies which indicate that patients leave consultations confused about their ongoing diagnosis and prognosis and uncertain of the management plan and intended treatment.30 However, communication skills can be taught and considerable improvements can be made in the doctor/patient relationship and hence in the perception in the quality of care provided.31-33 There are studies34 that highlight some good elements of communication such as friendliness, a caring demeanor, and clarity of information. Others, from a patient and/or family members' perspective suggest that the areas of the greatest need after receiving a diagnosis of cancer are: care availability and quality of disease management; good information; sympathetic communication; and most importantly regaining control of their lives.16,35-37 High quality cancer care for many would suggest an involvement in decision making on the part of the patient and their family but sadly this is not yet seen as the norm38 and most cancer patients fail to achieve their desired level of involvement in treatment decision making.27

There are other initiatives in the United Kingdom which may lead to an improved consumer involvement in elements of cancer care. INVOLVE (http:,/www.invo.org.uk) is a national advisory Group, funded by the Department of Health, which aims to promote and support active public involvement in the National Health Service, public health, and social care research. They believe that involving members of the public leads to research that is more relevant to people's needs and concerns, more reliable and more likely to be used. CancerVOICES http://www.cancervoices.org.uk. is another organization in the United Kingdom which may help to shape the future of cancer care in that country. These groups provide local and national feedback on the levels and nature of service provided in cancer care. They are supported by a charity organization, the Macmillan Cancer Relief.

4.0. CONSUMER VIEWS ON "CARE"

Having considered what consumers view as contributing to quality care (and the deficits therein) it seems rather important to touch upon the role of"care" itself. The nature of care in the delivery of health services is variable amongst the professions and therefore, almost by necessity, has variable meaning amongst those receiving care. For many, the expectations of care are centered on the technical expertise and skill with pharmaceutical agents to "make well" again. Caring has behavioral and motivational elements39—it has physical manifestations but also psychological, spiritual, and social dimensions. Even in studies carried out in the early days of the technological revolution in health care, people with cancer, when asked to assess their perceptions of caring behaviors of nurses, consistently ranked the highest caring behaviors as those that showed competence and knowledgeable technical skills and abilities.40 Conversely when the same tool was used to measure cancer nurses perceptions of what they thought would make the patient feel cared for the nurses' ranked expressive humanistic behaviors highest—listening, comforting, and expressing sensitivity.41 Clearly the person being cared for will have differing needs as the illness changes or progresses, the need to be physically cared for may be greater at times and care for the physical body giving health care professionals an opportunity to introduce the concept of spiritual or psychological care with varying degrees of intimacy. Nurses speak of the ability to foster or engender hope in their caring practices42 but it is at an individual level that we need to ensure we understand the patient's need for care. Larsson et al. have compared cancer patients' and staff perceptions of caring behaviors43 showing that patients rate the health professional's ability to anticipate needs as the highest ranking characteristic whereas the carers ranked the provision of "comfort" as the highest.

Overall, a review of the available literature would suggest that patients value a high level of competency and skills as caring characteristics but staff value the interpersonal aspects of the relationship with the patient. Those people who are acutely ill would perhaps focus on the immediate tasks and treatments provided (giving the right medication for pain at the right time for example) if their survivorship is not long lasting, or in fact moves to a more long term care situation, the patient may be more focused on a closer, more meaningful relationship.44 One thing that can never be emphasized enough is that all patients need doctors and nurses who care as well as cure—this is an ever more difficult task for medical educators as the advances in clinical practice threaten to engulf the undergraduate curricula45 but those humanistic elements of care must never be lost in our evermore sophisticated world of technical medical practice.

5.0. IMPLICATIONS AND RECOMMENDATIONS

We have outlined above a number of factors that are likely to contribute to difficulty in addressing "quality" of health care in cancer survivorship. One way of reducing the tensions that exist between the needs of funders, providers, and consumers of heath services is to make explicit the components of quality that are of interest to the various parties. In order to do this satisfactorily, the debate must utilize (and expand as required) theoretical models that provide a way of considering quality issues. Knowledge about cancer survivor perspectives on quality care is growing but it is early days. Focused attention on that perspective utilizing appropriate methodologies is likely to help us prioritize resource allocation toward higher quality and more responsive services for cancer survivors. Facilitating the survivor voice to be heard and to impact on service development will mean that effort in audit and evaluation will be worthwhile and not just a matter of ticking boxes.

6.0. SUMMARY

What is meant by "quality" of health care, and how we set about achieving it is a longstanding and somewhat fraught topic of discussion. Confusion and conflict about what might truly comprise "quality" and its related components exist, with some suspecting developments to be more frequently driven by political rhetoric than the needs of patients and their families. Whilst some confusion is perhaps unavoidable given that the technical language regarding quality is itself complex, it seems there are identifiable sources of conflict that we can confront and address to truly achieve better quality care. This chapter has argued that a potential source of conflict arises from the fact that there are different interested parties in health care and as such, potentially quite dissimilar views that might need to be addressed. In particular, we refer to research which explores the patient's view of "what matters most" in cancer care and survivorship. Theoretical models of quality are also explored to provide a context for discussing these issues and possible ways forward. We also examine what consumers have to say about "caring" itself as a component of health service delivery. The chapter presents an argument that improving the development and delivery of quality of cancer services in ways that are meaningful rests upon a better understanding of patient perspectives.

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