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. 2019 Sep 17;59(5):e393-e402.
doi: 10.1093/geront/gny041.

Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments

Annie M Racine  1   2   3 , Madeline D'Aquila  1 , Eva M Schmitt  1 , Jacqueline Gallagher  4 , Edward R Marcantonio  1   2   4 , Richard N Jones  5 , Sharon K Inouye  1   2   4 , Dena Schulman-Green  6 ; BASIL Study Group
Collaborators, Affiliations

Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments

Annie M Racine et al. Gerontologist. .

Abstract

Background and objectives: Delirium creates distinct emotional distress in patients and family caregivers, yet there are limited tools to assess the experience. Our objective was to develop separate patient and family caregiver delirium burden instruments and to test their content and construct validity.

Research design and methods: Two hundred forty-seven patients and 213 family caregivers were selected from an ongoing prospective cohort of medical-surgical admissions aged ≥70 years old. New patient and family caregiver delirium burden instruments were developed and used to measure the subjective experiences of in-hospital delirium. Delirium and delirium severity were measured by the Confusion Assessment Method (CAM) and CAM-Severity (long form).

Results: Both Delirium Burden (DEL-B) instruments consist of eight questions and are measured on a 0 - 40 point scale. Final questions had good clarity and relevancy, as rated by the expert panel, and good internal consistency (Cronbach's α = .82-.86). In the cohort validation, Patient DEL-B (DEL-B-P) was 5.1 points higher and Family Caregiver DEL-B (DEL-B-C) was 5.8 points higher, on average, for patients who developed delirium compared to those who did not (p < .001). Test-retest reliability of DEL-B-C at baseline and 1 month was strong (correlation = .73). Delirium severity was mildly-moderately correlated with DEL-B-P (correlation = .34) and DEL-B-C (correlation = .26), suggesting contribution of other factors.

Discussion and implications: We created instruments to reliably measure and evaluate the burden of delirium for patients and their family caregivers. Although additional validation is indicated, these instruments provide a key first step toward measuring and improving the subjective experience of delirium for patients and their families.

Keywords: Caregiver burden; Delirium burden; Distress; Family caregiver; Instrument development; Patient burden.

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Figures

Figure 1.
Figure 1.
Histograms of patient delirium burden (DEL-B-P, left) and family caregiver delirium burden (DEL-B-C, right) instruments assessed at 1-month post-hospitalization. The total sample is displayed in the top panel, and the subsample of delirium patients only are displayed in the bottom panel. All data displayed is from the 1-month assessment.
Figure 2.
Figure 2.
Delirium burden (DEL-B) by delirium status for patients (left) and family caregivers (right). Box plots display Patient Delirium Burden (DEL-B-P) and Family Caregiver Delirium Burden (DEL-B-C) data by delirium status (no delirium vs delirium) for data collected at the 1-month assessment.
Figure 3.
Figure 3.
Correlation between Family Caregiver Delirium Burden (DEL-B-C) and Patient Delirium Burden (DEL-B-P). The correlation between DEL-B-P and DEL-B-C was stronger for caregiver-patient dyads who lived together (blue triangles/solid line) than for caregiver-patient dyads who did not live together (red circles/dashed line). Rho refers to Spearman’s rank order correlation coefficient.
Figure 4.
Figure 4.
Association between delirium severity and patient (top) and family caregiver (bottom) delirium burden (DEL-B). Delirium severity was measured by CAM-S sum score (left, scatter plot) and CAM-S peak tertiles (right, box plot).
See this image and copyright information in PMC

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