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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. [ABSTRACT FROM AUTHOR]

Background and Objectives While there are qualitative studies examining the delirium-related experiences of patients, family caregivers, and nurses separately, little is known about common aspects of delirium burden among all three groups. We describe common delirium burdens from the perspectives of patients, family caregivers, and nurses. Research Design and Methods We conducted semistructured qualitative interviews about delirium burden with 18 patients who had recently experienced a delirium episode, with 16 family caregivers, and with 15 nurses who routinely cared for patients with delirium. We recruited participants from a large, urban teaching hospital in Boston, Massachusetts. Interviews were recorded and transcribed. We used interpretive description as the approach to data analysis. Results We identified three common burden themes of the delirium experience: Symptom Burden (Disorientation, Hallucinations/Delusions, Impaired Communication, Memory Problems, Personality Changes, Sleep Disturbances); Emotional Burden (Anger/Frustration, Emotional Distress, Fear, Guilt, Helplessness); and Situational Burden (Loss of Control, Lack of Attention, Lack of Knowledge, Lack of Resources, Safety Concerns, Unpredictability, Unpreparedness). These burdens arise from different sources among patients, family caregivers, and nurses, with markedly differing perspectives on the burden experience. Discussion and Implications Our findings advance the understanding of common burdens of the delirium experience for all groups and offer structure for instrument development and distinct interventions to address the burden of delirium as an individual or group experience. Our work reinforces that no one group experiences delirium in isolation. Delirium is a shared experience that will respond best to systemwide approaches to reduce associated burden. [ABSTRACT FROM AUTHOR]

Background/objectives: To describe the design, procedures, and cohort for the Better ASsessment of ILlness -(BASIL) study, which is conducted to develop and test new delirium severity measures, compare them with existing measures, and examine related clinical outcomes.Methods: Prospective cohort study with 1 year follow-up of study participants at a large teaching hospital in Boston, Massachusetts. After brief cognitive testing and the Delirium Symptom Interview, delirium and delirium severity were rated daily in the hospital using the Confusion Assessment Method (CAM) and CAM-Severity score, the Delirium Rating Scale-Revised-98 (DRS-R-98), and the Memorial Delirium Assessment Scale (MDAS). Other key study variables included comorbidity, physical function (basic and instrumental activities of daily living [ADL]), ratings of subjective health and well-being, and clinical outcomes (length of stay, 30 day rehospitalization, nursing home admission, healthcare utilization). Follow-up interviews occurred at 1- and 12-month with patients and families. In 42 patient interviews, inter-rater reliability for key variables was assessed.Results: Of 768 eligible patients approached, 469 were screened and 352 enrolled, yielding an overall study response rate of 67% for potentially eligible participants. The mean participant was 80.3 years old (SD 6.8) and 203 (58%) were female. The majority of patients were medically complex with Charlson Comorbidity Scores ≥2 (192 patients, 55%), and 102 (29%) met criteria for dementia. Inter-rater reliability assessments (n = 42 pairs) were high for overall ratings of presence or absence of delirium by CAM (κ = 1.0), delirium severity by DRS-R-98 and MDAS (weighted kappa, κ = 1.0 for each) and for ADL impairment (κ = 1.0). For eligible participants at each time point, 278 out of 308 (90%) completed the 1-month follow-up and 132 out of 256 (53%) have completed the 12-month follow-up to date, which is still in progress. Among those who completed interviews, there was only 1-3% missing data on most major outcomes (delirium, basic ADL, and readmission).Conclusion: The BASIL study presents an innovative effort to advance the conceptualization and measurement of delirium severity. Unique strengths include the diverse cohort with complete high quality data and longitudinal follow-up, along with detailed collection of multiple delirium measures daily during hospitalization. [ABSTRACT FROM AUTHOR]

Background/objectives: To describe the design, procedures, and cohort for the Better ASsessment of ILlness -(BASIL) study, which is conducted to develop and test new delirium severity measures, compare them with existing measures, and examine related clinical outcomes., Methods: Prospective cohort study with 1 year follow-up of study participants at a large teaching hospital in Boston, Massachusetts. After brief cognitive testing and the Delirium Symptom Interview, delirium and delirium severity were rated daily in the hospital using the Confusion Assessment Method (CAM) and CAM-Severity score, the Delirium Rating Scale-Revised-98 (DRS-R-98), and the Memorial Delirium Assessment Scale (MDAS). Other key study variables included comorbidity, physical function (basic and instrumental activities of daily living [ADL]), ratings of subjective health and well-being, and clinical outcomes (length of stay, 30 day rehospitalization, nursing home admission, healthcare utilization). Follow-up interviews occurred at 1- and 12-month with patients and families. In 42 patient interviews, inter-rater reliability for key variables was assessed., Results: Of 768 eligible patients approached, 469 were screened and 352 enrolled, yielding an overall study response rate of 67% for potentially eligible participants. The mean participant was 80.3 years old (SD 6.8) and 203 (58%) were female. The majority of patients were medically complex with Charlson Comorbidity Scores ≥2 (192 patients, 55%), and 102 (29%) met criteria for dementia. Inter-rater reliability assessments (n = 42 pairs) were high for overall ratings of presence or absence of delirium by CAM (κ = 1.0), delirium severity by DRS-R-98 and MDAS (weighted kappa, κ = 1.0 for each) and for ADL impairment (κ = 1.0). For eligible participants at each time point, 278 out of 308 (90%) completed the 1-month follow-up and 132 out of 256 (53%) have completed the 12-month follow-up to date, which is still in progress. Among those who completed interviews, there was only 1-3% missing data on most major outcomes (delirium, basic ADL, and readmission)., Conclusion: The BASIL study presents an innovative effort to advance the conceptualization and measurement of delirium severity. Unique strengths include the diverse cohort with complete high quality data and longitudinal follow-up, along with detailed collection of multiple delirium measures daily during hospitalization., (© 2018 S. Karger AG, Basel.)