The Role of Health Services Research in Improving the Outcomes for Patients With Lung Cancer

Health-Care Accessibility

The term health-care accessibility originally was used narrowly to describe the ability of patients to obtain entry into the health system. Today, it is used more broadly to encompass all of the factors that influence the level of use of a health service in relation to the level of need for the service in a population. The concept of access has been described as representing the overall “degree of fit between the clients and the system.” Several factors have been shown to influence the overall degree of fit. Availability describes the volume and type of services available in relation to the number of patients and their needs. Spatial accessibility describes the relationship between the location of supply of service and the location of the patients who need the service, taking into account travel times and costs. Accommodation describes the extent to which the system is designed to facilitate patient access to service, for example, by operating at convenient hours or by providing lodging for those who require treatment that is only available far from their homes. Affordability describes the relationship between prices and the ability of patients to pay. It also encompasses indirect costs, for example, loss of earnings during treatment that may deter use of the service. Awareness describes the extent to which those who need the service are aware that it is available and that they might benefit from it.

Quality in Health Care

Almost half a century ago, Donabedian defined the quality of health care as “a property of, and a judgement upon, some definable unit of health care, and that care is divisible into at least two parts: technical and interpersonal.” The quality of technical care is measured by the extent to which “the application of medical science and technology maximizes its health benefits without correspondingly increasing its risks.” The quality of interpersonal care is measured by “how well the physician–patient interaction meets the socially defined norms of the relationship.” Today, the Institute of Medicine describes health-care quality as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.”

Donabedian also provided a framework for evaluating the quality of health care in terms of structure, process, and outcome. The term structure is defined broadly to include facilities, equipment, personnel, and organizational structures. The term process includes both the type of care that is delivered and the way in which it is delivered. The term outcome refers to the consequences of the care that has been provided. Donabedian reasoned that optimal process is necessary for optimal outcome; that adequate structure is necessary, although not sufficient, for optimal process; and that outcomes may be enhanced by identifying and correcting deficiencies in structure and/or process.

Efficiency in Health Care

The resources available for health services are always limited, even in high-income nations. What is achievable in terms of cancer control depends on the total health-care budget, on how much of that total budget is directed to cancer care, and on how efficiently the available resources are used in providing cancer care. Efficiency measures whether we are getting the best value for money from the available health-care resources. Inefficiency is said to be present when using those resources in a different way would provide greater health benefits. Health economists distinguish between technical efficiency, productive efficiency, and allocative efficiency. As stated by Palmer and Torgerson, “technical efficiency addresses the issue of using given resources to maximum advantage; productive efficiency of choosing different combinations of resources to achieve the maximum health benefit for a given cost; and allocative efficiency of achieving the right mixture of healthcare programs to maximize the health of society.” Methods for measuring each of these quantities are well established and have been used to address some important issues in the treatment of lung cancer, but the sphere of health economics is beyond the scope of this chapter and therefore we will not deal with it in detail here.

In this chapter, we will review the results of research studies that have sought to optimize the accessibility and quality of programs of care for patients with lung cancer. This work involves identifying barriers to optimal care as well as designing and evaluating interventions to overcome those barriers. However, before one can identify deviations from optimal health system performance, one must first identify appropriate indicators of performance and establish standards of performance with respect to those indicators. We will therefore begin by reviewing the prescriptive research that has been undertaken to establish standards of care for patients with lung cancer. We will distinguish between standards of care for the individual patient and standards for the operation of the health programs that are required to deliver care to a population of patients. Standards of care for the individual patient should be based, whenever possible, on the results of randomized clinical trials that directly compare the outcomes of alternative forms of treatment. Likewise, standards for the operation of health programs should be based on the results of randomized trials that directly compare the effectiveness of alternative approaches to health-care delivery or at least on the results of well-controlled observational studies. However, we will show that the empirical evidence that underpins program standards today is usually much weaker than the evidence that supports guidelines for the care of the individual patient.

Guidelines for the Care of Individual Patients With Lung Cancer

Guidelines for the treatment of lung cancer have been developed by many different agencies and organizations around the world, including specialty societies such as the American Society of Clinical Oncology (ASCO), the European Society for Medical Oncology, the American College of Chest Physicians, and the American Society for Radiation Oncology; groups of health-care institutions such as the National Comprehensive Cancer Network (NCCN) in the United States; and government agencies such as the National Institute for Health and Care Excellence in the United Kingdom, Cancer Care Ontario in Canada, and the Cancer Council Australia. Some of these agencies attempt to provide comprehensive guidelines that cover the entire spectrum of possible presentations of the disease, whereas others have focused on providing detailed guidelines for management in specific clinical contexts. Most guidelines are written primarily for the use of physicians, but some agencies also provide a version that targets patients directly. It is recognized that practice guidelines that are created in one country may not be applicable in other societies with very different resources and/or different populations of patients. The NCCN, an alliance of 23 major cancer centers in the United States, is now endeavoring to provide international adaptations and translations of its guidelines to make them suitable for use in countries with different levels of economic development. Nonetheless, it is probably preferable for each society to develop its own guidelines. Repeating work that has already been done elsewhere may seem to be a waste of resources, but the process of guideline development is important in its own right and may have as much normative effect on practice as the guideline itself.

Challenges to the Development and Application of Practice Guidelines

Variation in patient values and the biologic heterogeneity of tumors pose particular challenges for the creation and application of treatment guidelines.