For chronic illnesses, such as inflammatory autoimmune diseases, value reflects a timespan. “Its assessment requires identifying a starting point (such as a patient’s first visit to a doctor) and a measurement point (often an arbitrary time following the starting point, such as one or five years),” says Dr. Kasturi.
Determining value for autoimmune rheumatic diseases is complex because the starting point is often vague. “[The disease] may antedate the first contact with a patient by years [or] have a gradual onset, or the patient may have been initially treated elsewhere, perhaps for an incorrect diagnosis,” says Dr. Lockshin. Also, “there may be no goal-defined ending point, but instead a future time arbitrarily defined.”
The most important outcomes occur in years. A short-term goal (e.g., relieving pain with a high-dose prescription of corticosteroids) may result in an undesirable long-term outcome (e.g., osteoporosis or osteonecrosis). Patients and doctors may place different values on the different outcomes (e.g., pain relief now vs. avoidance of disability later) and must negotiate their individual priorities.
Chronic illnesses are progressive and disabling, and are not always reversible. “Until we have cures, success may mean slowing the rate of progression or achieving partial functional improvement,” Dr. Lockshin says. “Value measures may include traditional biological measures, maintenance of function, time in the hospital, social and emotional health and less cost.”
Treatment goals differ according to initial disease severity and other characteristics. “Because rheumatic diseases are heterogeneous, as we assess value, we stratify patients by initial severity,” Dr. Kasturi says. “Because socioeconomic and psychological factors greatly impact outcome, we will stratify patients along these lines as well.”
Defining Value for Different Stakeholders
At HSS, value-based healthcare is incorporated into practice by identifying and implementing clinical care pathways that lead to the best outcomes. Best is defined conjointly by several stakeholders, including patients, doctors and society. “We measure outcomes at fixed, clinically meaningful time points, both short and long term,” Dr. Lockshin says.
For patients, success is measured against outcomes predicted after stratifying patients’ initial disease severity, relevant biological markers, organ systems involved, duration of illness and psycho-social and economic context. “Sharing this information with patients enables them to make informed decisions,” Dr. Kasturi says. “We proactively define and measure meaningful patient-reported outcomes at the point of care. These include emotional and social health, as well as physical function. We note patient satisfaction with attainment of these goals.”