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A new perspective on proxy report: Investigating implicit processes of understanding through patient–proxy congruence

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All our knowledge begins with the senses, proceeds then to the understanding, and ends with reason.

Immanuel Kant

Abstract

Background

Utilizing proxy report is a common solution to gathering quality-of-life information from people who are not capable of reliably answering questionnaires, such as people with dementia. Proxy report could, however, also provide information about patients’ implicit processes of understanding, which we define as automatic, schema-driven cognitive processes that allow one to have a better understanding of oneself and of one’s body, make oneself known and knowable to members of the social network, and allow one to react proactively in response to cues. We investigated whether implicit processes of understanding explain some of the association between reserve and healthy lifestyle behaviors.

Methods

We operationalized three implicit processes of understanding: (a) psychosocial understanding; (b) insight into physical disability; and (c) somatic awareness. This secondary analysis involved a cohort of multiple sclerosis patients and their caregiver informants (n = 118 pairs). Measures included a neurologist-administered Expanded Disability Status Scale, patient- and informant-completed survey measures, and a heartbeat perception test (interoception). Patient–other congruence assessed implicit processes of understanding: psychosocial understanding (neurocognitive and personality); physical-disability insight; and somatic awareness (interoception).

Results

Effect sizes (ES) for the inter-correlations between the three implicit processes were small. Psychosocial understanding was associated with higher past reserve-building activities (small ES). Psychosocial understanding explained variance in healthy lifestyle behaviors over and above the variance explained by current reserve-building activities (∆R 2 = 0.04; model R 2Adjusted  = 0.18).

Conclusions

Proxy versus patient report can provide information about underlying interpretational processes related to insight. These processes are distinct from reserve, predict health outcomes, and can inform lifestyle-changing interventions.

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Acknowledgments

This work was funded in part by a National Multiple Sclerosis Society Pilot Grant to Dr. Benedict (RG4060A3/1) and by the University of Rochester Hendershott Fund. We thank Brian Quaranto for data management services early in the project and are grateful to Dr. Janine Devine and Dr. Teresa Young for helpful comments on an earlier draft of this manuscript.

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Authors and Affiliations

  1. DeltaQuest Foundation, Inc., 31 Mitchell Road, Concord, MA, 01742, USA

    Carolyn E. Schwartz & Armon Ayandeh

  2. Departments of Medicine and Orthopaedic Surgery, Tufts University Medical School, Boston, MA, USA

    Carolyn E. Schwartz

  3. Department of Neurology, School of Medicine and Biomedical Sciences, University at Buffalo, State University of New York, Buffalo, NY, USA

    Jonathan D. Rodgers, Bianca Weinstock-Guttman & Ralph H. B. Benedict

  4. Department of Psychiatry and Rochester Health Care Decision Making Group, University of Rochester Medical Center, Rochester, NY, USA

    Paul Duberstein

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  1. Carolyn E. Schwartz
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Correspondence to Carolyn E. Schwartz.

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Schwartz, C.E., Ayandeh, A., Rodgers, J.D. et al. A new perspective on proxy report: Investigating implicit processes of understanding through patient–proxy congruence. Qual Life Res 24, 2637–2649 (2015). https://doi.org/10.1007/s11136-015-1017-4

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