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

Racine, Annie M.; D'Aquila, Madeline L; Schmitt, Eva M.; Gallagher, J. Roswell; Marcantonio, Edward R.; Jones, Richard N.; Inouye, Sharon K.

doi:10.1093/geront/gny041

Cited by 19 publications

(22 citation statements)

References 32 publications

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“…Patients were, on average, 80.3 ± 6.8 years old. Of the patients, 57% were female and 17% were nonwhite; and education was 14.6 ± 2.9 years . Cohort characteristics by delirium and ADRD status are described in Table .…”

Section: Resultsmentioning

confidence: 99%

“…The BASIL study included an initial in‐hospital assessment, daily hospital interviews, in‐person interviews at 1 and 12 months after discharge, and medical chart abstraction . Delirium burden was measured using the DEL‐B instrument at the 1‐month follow‐up visit, to allow sufficient time for resolution of delirium, but not so distant that patients and their caregivers could not recall and reflect on their experiences. To ensure accuracy, patients were administered the Confusion Assessment Method (CAM) and had to be CAM negative before being administered the DEL‐B.…”

Section: Methodsmentioning

confidence: 99%

“…The BASIL study included an initial in-hospital assessment, daily hospital interviews, in-person interviews at 1 and 12 months after discharge, and medical chart abstraction. 14 Delirium burden was measured using the DEL-B instrument 13 at the 1-month follow-up visit, to allow sufficient time for resolution of delirium, but not so distant that patients and their Note. Sample sizes for the patient and caregiver cohort differ (total patient cohort, n = 247; total caregiver cohort, n = 214).…”

Section: Data Collectionmentioning

confidence: 99%

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The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

Fong

Racine

Fick

et al. 2019

J American Geriatrics Society

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Objectives: To measure the burden of delirium in older adults with or without Alzheimer disease or related disorders (ADRD) Design: Prospective, observational cohort Setting: Inpatient hospital, study participants’ homes Participants: A subset (n=267) of older medical and surgical patients and their caregivers enrolled in the Better Assessment of Illness (BASIL) study Measurements: Delirium burden was measured using the DEL-B instrument (range 0-40, higher scores indicate greater burden) in caregivers (DEL-B-C) and patients (DEL-B-P) one-month after hospitalization. Severity of cognitive impairment (Montreal Cognitive Assessment, MoCA), delirium presence (Confusion Assessment Method, CAM) and delirium severity (CAM-Severity, CAM-S) were measured during hospitalization and at one-month followup. ADRD diagnosis was determined by a clinical consensus process. Results: For patients with (n=56) and without (n=211) ADRD, both DEL-B instruments had good internal consistency. DEL-B-C scores had a median (interquartile range, IQR) among caregivers of patients with and without ADRD of 9 (5-15) and 5 (1-11), respectively (p<0.05). If the patient developed delirium, caregivers experienced greater burden (β[delirium×ADRD]=−0.29, p=.42), regardless of ADRD status. Further, caregiver burden was modestly correlated with patient MoCA scores (Spearman correlation coefficient, rho=−.18, p=.01). Patients with ADRD who developed delirium self-reported less burden than those without ADRD (β[delirium×ADRD]=−0.67, p=.044). As with caregivers, delirium burden was modestly correlated with patient MoCA score (rho=−.18, p=.005) and correlated with the CAM-S in patients without ADRD (rho=.38, p<.001) but not for patients with ADRD (rho=−.07, p=.61). Conclusions: Delirium resulted in the same degree of increased caregiver burden regardless of whether or not a patient had ADRD, signifying delirium is equally stressful to caregivers, even among those with experience caring for someone with a chronic cognitive disorder. Delirium burden is only modestly associated with degree of cognitive impairment, suggesting that other aspects of delirium contribute to burden.

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Section: Resultsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Data Collectionmentioning

confidence: 99%

See 1 more Smart Citation

The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

Fong

Racine

Fick

et al. 2019

J American Geriatrics Society

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“…The DEL-B is an 8-item tool with two-level questions; the first level lists delirium burden features and if answered positive (yes), the follow-up question asks caregivers to rate how distressing the burden (e.g., feelings of helplessness, concern about increased responsibilities, not being recognized by patient) was on a 0-4 scale [56]. Total scores range between 0 and 40, with higher scores indicative of greater burden [56]. The DEL-B will be completed once daily for up to five study days.…”

Section: Delirium Burden Scale (Del-b) (Secondary Aim 5)mentioning

confidence: 99%

A study protocol for a randomized controlled trial of family-partnered delirium prevention, detection, and management in critically ill adults: the ACTIVATE study

Fiest

Krewulak

Sept

et al. 2020

BMC Health Serv Res

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Background: Delirium is very common in critically ill patients admitted to the intensive care unit (ICU) and results in negative long-term outcomes. Family members are also at risk of long-term complications, including depression and anxiety. Family members are frequently at the bedside and want to be engaged; they know the patient best and may notice subtle changes prior to the care team. By engaging family members in delirium care, we may be able to improve both patient and family outcomes by identifying delirium sooner and capacitating family members in care. Methods: The primary aim of this study is to determine the effect of family-administered delirium prevention, detection, and management in critically ill patients on family member symptoms of depression and anxiety, compared to usual care. One-hundred and ninety-eight patient-family dyads will be recruited from four medicalsurgical ICUs in Calgary, Canada. Dyads will be randomized 1:1 to the intervention or control group. The intervention consists of family-partnered delirium prevention, detection, and management, while the control group will receive usual care. Delirium, depression, and anxiety will be measured using validated tools, and participants will be followed for 1-and 3-months post-ICU discharge. All analyses will be intention-to-treat and adjusted for preidentified covariates. Ethical approval has been granted by the University of Calgary Conjoint Health Research Ethics Board (REB19-1000) and the trial registered. The protocol adheres to the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) checklist. Discussion: Critically ill patients are frequently unable to participate in their own care, and partnering with their family members is particularly important for improving experiences and outcomes of care for both patients and families. Trial registration: Registered September 23, 2019 on Clinicaltrials.gov NCT04099472.

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“…Delirium is a common neuropsychiatric complication in the ICU that affects over 50% of critically ill patients [1][2][3] and is associated with negative short-term (e.g., longer ICU stay, increased ICU and in-hospital mortality) and long-term outcomes (e.g., post-intensive care syndrome, (PICS)) [4]. Family caregivers often experience distress from witnessing delirium in their loved ones [5][6][7][8], which can lead to the development of adverse psychological outcomes after ICU discharge known as PICS-Family [9][10][11]. The Society of Critical Care Medicine guidelines for family-centred care in the ICU [12] suggest providing family education programs and including family caregivers in patient care has the potential to improve family caregiver-centred outcomes [10,12].…”

Section: Introductionmentioning

confidence: 99%

Psychometric evaluation of the family caregiver ICU delirium knowledge questionnaire

Krewulak

Bull

Ely

et al. 2020

BMC Health Serv Res

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Background: Delirium is a common condition in critically ill patients, affecting nearly half of all patients admitted to an intensive care unit (ICU). Family caregivers of critically ill patients can be partners in the early recognition, prevention and management of delirium provided they are aware of the signs/symptoms and appropriate nonpharmacological strategies that might be taken. Valid, reliable instruments that assess family caregiver knowledge are essential so that nurses can prepare family caregivers to be effective partners. The purpose of the current study was to (a) adapt an existing caregiver delirium knowledge questionnaire (CDKQ) for use by nurses to measure a family caregiver's delirium knowledge in the ICU; and (b) examine the psychometric properties and structure of the adapted Caregiver ICU Delirium Knowledge Questionnaire (CIDKQ). Methods: In this cross-sectional study, a multidisciplinary team developed the 21-item CIDKQ (possible score range: 0-21) and administered it to 158 family caregivers of critically ill patients. Descriptive statistics were examined for all variables. The CIDKQ was analyzed for face validity, content validity, reliability and internal consistency. Results: The mean CIDKQ score was 14.1 (SD: 3.5, range = 2 to 21). Path analysis revealed that a family caregiver's delirium knowledge in the actions and symptoms dimensions had a direct effect on knowledge of delirium risk factors. The CIDKQ was found to have face validity and reliability (Cronbach's α = 0.79). Conclusions: The findings indicated good validity and reliability of the CIDKQ as a measure of ICU delirium knowledge in family caregivers of critically ill patients.

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

Cited by 19 publications

References 32 publications

The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

The Caregiver Burden of Delirium in Older Adults With Alzheimer Disease and Related Disorders

A study protocol for a randomized controlled trial of family-partnered delirium prevention, detection, and management in critically ill adults: the ACTIVATE study

Psychometric evaluation of the family caregiver ICU delirium knowledge questionnaire

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