Modern health care is very much concerned with outcomes. The language of outcomes is common in policy development, clinical work, and research. For example, Health Quality Ontario states that the overall quality aims are: Better outcomes, better experience, better value for money.
In the context of clinical care, outcomes are broadly considered to be the results brought about by care delivered to patients by healthcare providers. At the population level, outcomes are understood in terms of metrics such as rates of disease, mortality rates, and other measures of interest. In theory, at least, outcomes are closely related to the desired health-related goals of individuals and populations.
The increased focus on outcomes is understandable given the vast resources our society now devotes to health care. The quest for “better” outcomes is welcome and to be encouraged. However, understanding what exactly constitutes a “better” outcome presents a significant challenge. Understanding outcomes is particularly important as health systems also claim to be person-centred, meaning they are structured to address the particular needs of any given patient seeking care in the system. It is unclear what types of outcomes modern health care should be pursuing. This is particularly the case in the context of an aging population with increasing chronic disease burdens.
Outcomes that are typically measured relate to the management of specific diseases such as cancer, cardiovascular disease, and other common chronic diseases such as diabetes, osteoarthritis, and depression. Addressing these diseases is at the forefront of policy and planning and has driven the agenda regarding quality of care and outcomes. For example, much effort is spent measuring changing rates of morbidity, mortality, and associated costs for these diseases. Influential foundations, such as the Heart and Stroke Foundation, Canadian Diabetes Association, Canadian Cancer Society and others are dedicated to raising awareness and promoting better outcomes for people suffering from the disease for which their foundation advocates.
On the other hand, Canadian health care systems tend to focus on outcomes that relate to the efficiency and cost effectiveness of the health care system. Health care system administrators are typically concerned with system- level outcomes: emergency room visits, hospitalizations and readmissions, alternative level of care, the top 1 and 5 percent of utilization, etc. These metrics are commonly used as indicators of quality.
But these outcomes may be missing an important phenomenon that is occurring before our eyes: multi-morbidity, or multiple concurrent chronic disease (MCCC). Recent research has demonstrated that MCCC, rather than being exceptional, is very common. According to one study, 20% of Canadians between the ages of 54-65 have 4 or more chronic conditions. This rises to over 40% among those aged over 80. This phenomenon has received little policy attention and less public debate. It is crucially important that this occur because we have no clear idea of what outcomes should be pursued for people with MCCC.
It is worth asking, then, what the desired outcomes of health care should be in the 21st Century, in light of the ongoing demographic transition. The population is aging rapidly and the largest gains in life expectancy are in the 80+ category. It is estimated that by 2050 there will be 3.5 million Canadians older than 80. If current trends hold, this will entail a substantial increase in the MCCC population.
But continuing focus on system-level and disease-specific outcomes will fail to address the needs of the large and growing proportion of Canadians with MCCC. This is most pointed with older adults struggling to maintain their independence in the community. System-level outcomes such as Emergency Room visits are not well calibrated as measures of quality, since it is unclear whether observed changes represent improvements. A reduced rate in ER visits among older adults with MCCC might indicate that the system is better meeting the needs of this complex patient population, but it might also mean that the problems of overcrowding and lengthy wait times are simply shifted elsewhere in the system.
Likewise, disease-specific outcomes do not capture the experience or concerns of this population, who do not tend to place particular weight on any one of the chronic diseases they are afflicted with. Arguably, disease-specific outcomes miss the point of what tends to be most important to older patients and their families, namely quality of life and optimized function and independence.
Older adults with MCCC suffer from a high level of symptom burden and complex care regimens involving multiple care providers. The research literature indicates that current health systems serve them poorly. Care is not well coordinated between community providers and health care institutions, communication between providers is poor to absent, patients and their family care givers have to navigate a confusing number of appointments and providers. Treatment goals or patient-centred outcomes related to a particular patient’s needs are seldom acknowledged or discussed.
The research literature also indicates that many health care providers do not willingly accept complex MCCC patients into their practices and express frustration at managing such patients in the time allowed in usual consultations, particularly in primary care. Clarifying outcomes and treatment goals has been described as “too complex and too time consuming.”
There is a sparse literature on outcomes in MCCC. Studies focusing on patient-relevant outcomes indicate less of an emphasis on managing particular diseases and greater focus on optimizing function, reducing symptoms, and preserving independence. It is worth noting, however, that there is not unanimity regarding which specific outcomes are most appropriate in this patient population. Given the variability of patient preferences, it’s unlikely that a single care pathway or clinical algorithm would prove feasible. There is an urgent need to direct attention and develop patient reported outcome measures in this population.
It is time that we openly recognize the reality of aging and MCCC and devote the needed resources to articulating what outcomes should matter and who has the responsibility to see that they come about. System level and disease specific outcomes are, no doubt, legitimate and important in their own right, but they are poorly aligned to the realities of MCCC. There is much work to be done on how to balance system level, disease specific and patient centred outcomes. It is important to recognize that each relates to very different animating values and may in fact conflict. Reasonable people can, and often do, disagree about the legitimate end and purpose of health care. The outcomes we choose to measure become important in setting priorities and tracking quality of care, so it is crucial that these accurately reflect the realities of patients living with MCCC. It would be a disservice to all to continue to proceed as though we are in possession of a clear consensus on which health care outcomes are most relevant in the early 21st Century.
So how shall we proceed? Listening to the voices of patients, their families, and health care professionals involved in the day-to-day management of MCCC may direct us to new dimensions of understanding the range of outcomes that high quality health care ought to pursue. It is a discussion that is well worth having.