There is an increased interest in measuring outcomes of health care interventions from the patient's perspective, but a recent study indicates that such attempts may actually discriminate against some patients.

Patient-reported health outcome questionnaires are used to provide patients with a voice in making decisions regarding effectiveness of therapy, which means questionnaires need to be relevant to the patients' situation.

However, a study in Parkinson's disease found those with poorer quality of life and poorer mental health considered the relevance of the SF-36, the most widely used health outcome questionnaire, as inadequate. Similarly, a questionnaire developed specifically for Parkinson's disease (the PDQ-39) was less relevant to older people.

Parkinson's disease is a chronic progressive brain disorder that affects about 200 in 100 000 people. Typical onset is around 60 years of age and the disease has been estimated to cost about $23 billion a year in the US. Available treatment improves symptoms but does not cure the disease.

"These findings have important ethical implications", says Dr. Peter Hagell of Lund University, Sweden. "Questionnaires like these are often used to incorporate patients' perspectives in determining effectiveness of therapies. But if the questions asked are less relevant to those who fare least well, those patients will be discriminated against since their views are not captured to the same extent as others'; this may cause misleading conclusions about the value of therapies from a patient perspective."

The full article, "Whose Quality of Life? Ethical Implications in Patient-Reported Health Outcome Measurement," will appear in an upcoming issue of Value in Health, the official journal of the International Society for Pharmacoeconomics and outcomes Research.

Value in Health (ISSN 1098-3015) publishes papers, concepts, and ideas that advance the field of pharmacoeconomics and outcomes research and help health care leaders to make decisions that are solidly evidence-based. The journal is published bi-monthly and has a regular readership of over 4,000 clinicians, decision-makers, and researchers worldwide.

ISPOR is a nonprofit, international organization that strives to translate pharmacoeconomics and outcomes research into practice to ensure that society allocates scarce health care resources wisely, fairly, and efficiently.

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ISPOR