What is Important to Patients? Quantity or Quality of Life?

A recent article in The Wall Street Journal describes “The Simple Idea That Is Transforming Health Care”-focusing medical providers on patient quality of life (QOL) and integrated and holistic care.  The article provides example after example of how a focus on patient-centric approaches to care, if applied appropriately can be the driver of the metrics that are more typically viewed by health plans and regulators, such as mortality and hospitalization. While the concept that optimizing QOL is an important goal in life and in medical care is intuitive, does apply well to patients with chronic illnesses, and if so, are we in nephrology sufficiently engaged in this effort?

The segment of the American public with chronic illness is growing as the population ages and as obesity, diabetes and hypertension all increase in prevalence. We have seen the results, of course, in the continuing growth of incident ESRD patients, two-thirds of whom have diabetes and or hypertension as a cause or complication of kidney disease. We as a renal community have continued to pursue the more traditional metrics of outcomes success -and not even very rigorously since we are tracking and being held accountable primarily for intermediate or surrogate outcomes such as dialysis adequacy, anemia, and so on. Although standardized mortality and hospitalization ratios (SMR and SHR) are also available, the value and accuracy of these is open to debate because the key to the standardization is the “expected” mortality/hospitalization rate and the elements that are considered in that calculation. There have been no publications independently verifying the accuracy of SMR or SHR in this population.

For many years we have been focusing on patient-centric care at DaVita, including through our disease management group VillageHealth®. An integral component of the VillageHealth program is the patient activation measure (PAM) which gauges the knowledge, skills and confidence essential to managing one’s own health and healthcare. The PAM assessment segments patients into one of four progressively higher activation levels. Each level addresses a broad array of self-care behaviors and offers insight into the characteristics that drive health behaviors.

Activated patients are fully engaged as participants in their care, are more adherent with medications and other aspects of care, and have lower hospitalization rates, better survival, and higher QOL.

We have recently conducted extensive surveys and focus groups with patients to better understand what is important to them when they are getting ESRD care. I expected that great clinical outcomes like fewer catheters and outstanding phosphorus levels would be near the top of the list. However,  none of the clinical outcomes came close to the desire of patients to be treated as human beings -for caregivers to truly treat them holistically, to care about them as people and about their families to understand what is important to them and to help them achieve their life goals.

The challenge of responding to these needs is considerable. The current standardized instruments we have for assessing QOL, including the KDQOL, are imperfect and as shown recently by Tracy Mayne, an international authority in this area and a member of DaVita Clinical Research® (DCR®). KDQOL cannot be validated as truly predictive of QOL with current ESRD patients. While the search for a reliable, reproducible, valid instrument to measure QOL goes on, we all need to commit to the importance of this area.

Nephrologists, as leaders of the healthcare team for our patients, need to be sensitive to the integrated and holistic needs of patients and be role models for other members of the team. All caregivers need to believe that hitting QIP targets or other quality metrics is important, but caring about the patient as a person is at least as, if not more, important. We should all encourage our patients to take advantage of the full range of tools to increase their empowerment.

We have developed a teaching program for CKD patients (KidneySmart™), have a website for ESRD patients and have dedicated social workers who focus every day on helping patients have their hopes and dreams known and fulfilled to the extent possible. But these tools are not enough unless we are all willing to make a paradigm shift in the way we think about what is really important in the lives of these vulnerable and fragile patients.

Some time ago the clinical leadership at DaVita® began a journey to understand and then address how we can truly make a difference in our patients’ lives. It all starts with a vision, and I now state this vision under my signature on every email I send, just to remind me:   “Advancing Integrated and Holistic Care to Realize the Vision of Our Village”.

As Hippocrates said over 2500 years ago:

“It is more important to know what sort of person has a disease than to know what sort of disease a person has.”

Striving to bring quality to life,
Allen R. Nissenson, MD
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