Measurements of quality of life in patients needing palliative care are too complex, have poor relevance to patient needs and perceptions, and are difficult to administer in practice, say Drs Feinberg and Kiss. They believe that some currently available quality-of-life instruments have applicability to the palliative care setting.
If cancer treatment decision making were a triad formed by efficacy, toxicity, and cost, Dr Feinberg, vice president and chief medical officer at Cardinal Health Specialty Solutions, believes that in oncology care, “we’ve been translating the toxicity as the equivalent of quality of life” and giving it the least recognition. He believes clinicians get distracted by the complexity of the myriad quality-of-life measurement scores, which can lead them to often miss the simplest things. Rather, Dr Feinberg suggests, we should ask simple questions, record them continually, and review the impact.
“Quality-of-life is important, but measurement is a problem,” says Dr Kiss, vice president, healthcare transformation, Blue Cross Blue Shield of Florida. The instruments used to measure end-of-life treatment regimens should be better validated, but it is important that they remain “simple, straightforward, and patient friendly.” As to what specific quality-of-life metrics can add meaningful value for palliative care treatment regimens, Dr Kiss mentions the MD Anderson Symptom Inventory (MDASI) and the Optum SF™ Health Surveys, among others, calling them “pretty good” and “pretty well validated.”
Dr Feinberg expresses concern about the complexity of the available tools, the literacy and problem-solving sophistication required by those using them, and whether they are culturally relevant across the board. In addition, Dr Feinberg questions what resources it would take to conduct the measurements accurately and with validity in various palliative care environments, including offices, private practice, or in hospitals. Starting with good ideas, dealing with the flaws that develop, and continuing to address those issues one at a time would lead to some good progress, says Dr Feinberg.