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Challenge of assessing symptoms in seriously ill intensive care unit patients: Can proxy reporters help?*

Puntillo, Kathleen A. RN, DNSc, FAAN, FCCM; Neuhaus, John PhD; Arai, Shoshana RN, PhD; Paul, Steven M. PhD; Gropper, Michael A. MD, PhD; Cohen, Neal H. MD, MPH, MS; Miaskowski, Christine RN, PhD, FAAN

doi: 10.1097/CCM.0b013e31825b94d8
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Objective: Determine levels of agreement among intensive care unit patients and their family members, nurses, and physicians (proxies) regarding patients’ symptoms and compare levels of mean intensity (i.e., the magnitude of a symptom sensation) and distress (i.e., the degree of emotionality that a symptom engenders) of symptoms among patients and proxy reporters.

Design: Prospective study of proxy reporters of symptoms in seriously ill patients.

Settings: Two intensive care units in a tertiary medical center in the Western United States.

Patients: Two hundred and forty-five intensive care unit patients, 243 family members, 103 nurses, and 92 physicians.

Interventions: None.

Measurements and Main Results: On the basis of the magnitude of intraclass correlation coefficients, where coefficients from .35 to .78 are considered to be appropriately robust, correlation coefficients between patients’ and family members’ ratings met this criterion (≥.35) for intensity in six of ten symptoms. No intensity ratings between patients and nurses had intraclass correlation coefficients >.32. Three symptoms had intensity correlation coefficients of ≥.36 between patients’ and physicians’ ratings. Correlation coefficients between patients and family members were >.40 for five symptom-distress ratings. No symptoms had distress correlation coefficients of ≥.28 between patients’ and nurses’ ratings. Two symptoms had symptom-distress correlation coefficients between patients’ and physicians’ ratings at >.39. Family members, nurses, and physicians reported higher symptom-intensity scores than patients did for 80%, 60%, and 60% of the symptoms, respectively. Family members, nurses, and physicians reported higher symptom-distress scores than patients did for 90%, 70%, and 80% of the symptoms, respectively.

Conclusions: Patient–family intraclass correlation coefficients were sufficiently close for us to consider using family members to help assess intensive care unit patients’ symptoms. Relatively low intraclass correlation coefficients between intensive care unit clinicians’ and patients’ symptom ratings indicate that some proxy raters overestimate whereas others underestimate patients’ symptoms. Proxy overestimation of patients’ symptom scores warrants further study because this may influence decisions about treating patients’ symptoms.

From the Departments of Physiological Nursing (KAP, SA, SMP, CM), Anesthesiology (MAG, NHC), and Biostatistics and Epidemiology (JN), University of California, San Francisco, CA.

*See also p. 2899.

This study was supported by a grant from the National Institute for Nursing Research (NR008247).

The authors have not disclosed any potential conflicts of interest.

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© 2012 by the Society of Critical Care Medicine and Lippincott Williams & Wilkins