NINR Standardization of Measurements for Biobehavioral Assessment of Symptoms Comments - March 2011

Patricia Flatley Brennan, R.N., Ph.D., Project HealthDesign Director

Your overall impression of an initiative focused on standardizing measures for the biobehavioral assessment of symptoms.
Health is experienced in highly personal ways. A patient’s daily experience isn’t limited to the 12 symptoms designated in this initiative. Patients make observations of daily living (ODLs) every day; these ODLs are the subtle cues that individuals pay attention to as they monitor their health. For example, they can include information about the moods teens experience in their day-to-day lives or fluctuations in work-related stress. Observations of daily living (ODLs) serve as indicators of the patient’s self-awareness of health, not the patient’s fundamental health state. I applaud the attention given to standardization of measures and urge a broader approach to patients’ experiences of health.
Are there symptoms that should be added to or removed from the 12 listed above?
We recognize that the proposed set represents those symptoms commonly experienced by patients in acute care. However in itself it will not foster a patient-centered approach to care. Patient-generated, patient-sourced data enhances the patient’s voice and perspective in his or her care.
To what extent would the community of scientists who conduct research utilize a toolkit of standardized measures for assessing symptoms along a biobehavioral continuum?
This type of toolkit is of limited use to a community focusing on patient-centered interventions or personal health services. It would provide information only about the most generalizable understandings of health rather than information about individual experiences of health.
How measures (primary and supplemental) can be identified and/or developed that reflects the following: 1) subjective, multidimensional nature of symptoms; 2) molecular entities (genes, proteins, metabolites) that underlie symptom development, sequelae and associated predispositions; and 3) physiologic, clinical and imaging information to document and characterize symptom occurrence.
I applaud the interest in developing a perspective that systematically integrates phenomena across various levels of scale, but caution that we avoid a rigid mapping across scale. For example, one symptom can have many biological precursors. Additionally, although the 12-symptom set represents the most commonly identified symptoms, attending only to these symptoms provides an incomplete view of the patient. We must pay attention not only to individual symptoms, but also to co-occurrence potential of the physiological relationship among subsets of symptoms.
How symptom research could effectively leverage data elements and biospecimens found in existing large/networks/databases?
Demonstrating a systematic relationship among symptoms and biological specimens does not confirm a causal pathway. The things that are important to patients do not always have biological or physical correlates.
Any other comments or recommendations you wish to offer regarding a symptom initiative?
Research that includes patient-defined, patient-sourced data is needed. Defining common data elements is important, but determining what they mean to the patient is also essential. ODLs provide a richer context for clinical symptoms. When symptoms and ODLs are equally emphasized, patients are better equipped to take action to improve their health.

For more information about observations of daily living (ODLs), please visit www.projecthealthdesign.org or bit.ly/eSDlTV.

These comments were submitted to NINR in response to a request for input on the Standardization of Measurements for Biobehavioral Assessment of Symptoms.