Browsing by Author "Cagle, John"

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    An Analysis of Palliative Care Provider Nursing Home Consultations for Patients with Cognitive Impairment
    (Oxford University Press, 2024-12-31) Nesvet, Matthew; Floyd, Alex; Cagle, John; Elftmann, Hanley; Unroe, Kathlee; Medicine, School of Medicine
    Nursing homes (NH) are important sites of care for people with serious illnesses in need of end-of-life care. Extant studies have shown NH residents with dementia struggle to receive high quality care. There is some evidence that palliative care (PC) interventions may improve quality of life (QOL) and care. There is little prior description of PC consults conducted in the nursing home setting. We examined notes PC providers wrote after initial consults with 197 residents of 8 nursing homes enrolled in UPLIFT, an NIH-funded clinical trial evaluating implementation of a PC model of care. Residents enrolled in UPLIFT who screened positive for PC needs were referred for consultations. We analyzed initial consult notes to learn about the residents referred and content of the consultative visits, including recommendations made. Mean age of the residents was 75 years. 70% were White, 19% Black/African American, and 52% female. Goals of care were discussed in 83% of the PC consults, the most commonly observed intervention. The most frequent types of recommendations by PC providers were: 1) medication-related (n=207); 2) referrals to other clinical services (n=103); 3) non-pharmacologic symptom relief (n=53); and 4) specific recommendations for NH staff-based activities (n=40). In total, PC providers averaged three recommendations when at least one family member, friend, or guardian was present during the clinical encounter in person (n=127) or by phone (n=38), and two when only the resident participated in the encounter (n=33).
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    Exploratory Factor Analysis of the Comfort Assessment in Dying With Dementia Scale
    (Oxford University Press, 2023-12-21) Zhang, Peiyuan; Stump, Timothy; Tu, Wanzhu; Becker, Todd; Orth, Jessica; Floyd, Alexander; Unroe, Kathleen; Cagle, John; Biostatistics and Health Data Science, Richard M. Fairbanks School of Public Health
    The 14-item Comfort Assessment in Dying with Dementia (CAD-EOLD) scale is a widely used instrument measuring end-of-life care for people with dementia (PWD). The instrument has been used to evaluate symptom burden among PWD in nursing homes, but the measurement properties are less studied for symptoms reported by family and staff caregivers. We conducted an exploratory factor analysis to evaluate the psychometric properties of the scale using staff and family (N=476) responses to CAD-EOLD at the baseline of an NIH-funded clinical trial. Subjects were long-stay nursing home residents with moderate-to-severe cognitive impairment in Indiana and Maryland. Staff (n=368) and family members (n=108) completed the CAD-EOLD, describing participating residents. We performed separate exploratory factor analyses on family and staff responses. Family and staff data showed similar clustering patterns. Restlessness, anxiety, fear, crying, and moaning had high factor loadings in the first cluster, interpreted as “Physical and Psychological Distress” (loading range = 0.47–0.91). Choking, gurgling, and difficulty swallowing had high loadings in the second cluster that depicted “Dying Symptoms” (loading range = 0.62–1.15). Serenity, calm, and peace had high loadings in the third factor on “Well-Being” (loading range = 0.72–0.93). Three “Physical Distress” items (i.e., discomfort, pain, and shortness of breath) cross-loaded with “Dying Symptoms.” Accordingly, “Physical and Psychological Distress,” “Dying Symptoms,” and “Well-Being” represented important but separate dimensions for measuring end-of-life experiences of PWD. Findings demonstrated favorable construct validity of CAD-EOLD in PWD with moderate-to-severe cognitive impairment in nursing homes, as reported by staff and family caregivers.
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    Family Involvement and Symptom Burden in Nursing Home Residents with Cognitive Impairment
    (Oxford University Press, 2024-12-31) Tucker, Gretchen; Cagle, John; Stump, Timothy; Tu, Wanzhu; Zhang, Peiyuan; Floyd, Alex; Ersek, Mary; Unroe, Kathleen; Medicine, School of Medicine
    Research suggests that family involvement improves the quality of life of nursing home residents. Using baseline data from an on-going multisite clinical trial (UPLIFT-AD), we examined the association between family involvement and staff-reported accounts of resident symptom burden. Symptom burden was measured as a composite of frequency and intensity of symptoms, using items from the End-of-Life Dementia (EOLD) scale. Higher scores indicate greater burden. Family involvement was measured by the family-reported average weekly in-person visit frequency over the past month (range 0-7 days). Data on 198 residents were collected, 61.9% of whom were in Indiana, with the remainder (38.1%) in Maryland. Of the 198 residents, 60.3% were female. The Brief Interview for Mental Status score, which indicates cognitive impairment level, was 6.5 (SD=3.9). Most family members were an adult child (58.7%), 7.9% were spouses, and 38.8% were “other.” On average, spouses visited 5 days a week, children 2 days a week, and other family members 1.5 days a week. In 53.5% of cases, the reporting staff member knew the resident for >1 year. Linear regression analysis was used to examine the associations between the frequency of in-person family visits and EOLD scores while adjusting for resident demographics, mental status, family relationship to the resident, and facility location. Visit frequency was associated with higher EOLD scores (B=0.18, p=.037). Findings suggest family involvement may sensitize nursing home staff to the presence of a resident’s burdensome symptoms, which may become more discernible to families with increased involvement.
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    Symptom Burden and Quality of Life for Nursing Home Residents with Dementia: Uplift Trial Early Data
    (Oxford University Press, 2022-12-20) Cagle, John; Orth, Jessica; Becker, Todd; Zhang, Peiyuan; Ersek, Mary; Tu, Wanzhu; Floyd, Alex; Unroe, Kathleen; Biostatistics, School of Public Health
    Communication difficulties in nursing home (NH) residents with dementia make valid assessment of symptoms and quality-of-life (QOL) challenging. Thus, researchers and clinicians frequently rely on proxy-based measures. The End-of-life Dementia-Comfort Assessment in Dying (EOLD-CAD) and two single-item QOL measures (7-point item; 5-point item) have been used in several studies, though evaluation of their psychometric properties is limited. We used baseline data from an ongoing multi-site randomized trial (UPLIFT) to describe symptoms and QOL and examine the measures’ validity and reliability in 138 residents with moderate to severe dementia living at 16 facilities. Descriptive data and assessments of convergent validity and inter-rater reliability are provided. Based on assessments by 134 staff and 45 family, physical symptoms, physical distress, and emotional distress were reported as infrequent by staff and family; indications of well-being were more frequently observed. Median QOL was the same for staff and family observers (4=“Life is so-so” [7-point item]; 3=“Fair” [5-point item]). Inter-observer assessments of resident QOL (staff vs. family) were correlated (7-point item: r=0.47, ICC=.643; 5-point item: r=0.48, ICC=.645, p<.05 for all). Seven of 18 EOLD-CAD symptoms were significantly positively correlated. ICC values varied between high or moderately high: shortness-of-breath (ICC=.74), choking (ICC=.65), gurgling (ICC=.81), agitation (ICC=.51), fear (ICC=.46), crying (ICC=.65), peace (ICC=.57), and care resistance (ICC=.68) (p<.05 for all). Choking and gurgling were the most prominently reported symptoms by both groups.Early findings provide a contemporary assessment of QOL and symptoms among NH residents with dementia. Measurement properties affirm general reliability and validity of study instruments.
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    Using Palliative Leaders in Facilities to Transform Care for People with Alzheimer’s Disease (UPLIFT-AD): protocol of a palliative care clinical trial in nursing homes
    (BMC, 2023-07-26) Unroe, Kathleen T.; Ersek, Mary; Tu, Wanzhu; Floyd, Alexander; Becker, Todd; Trimmer, Jessica; Lamie, Jodi; Cagle, John; Medicine, School of Medicine
    Background: Palliative care is an effective model of care focused on maximizing quality of life and relieving the suffering of people with serious illnesses, including dementia. Evidence shows that many people receiving care in nursing homes are eligible for and would benefit from palliative care services. Yet, palliative care is not consistently available in nursing home settings. There is a need to test pragmatic strategies to implement palliative care programs in nursing homes. Methods/design: The UPLIFT-AD (Utilizing Palliative Leaders in Facilities to Transform care for people with Alzheimer's Disease) study is a pragmatic stepped wedge trial in 16 nursing homes in Maryland and Indiana, testing the effectiveness of the intervention while assessing its implementation. The proposed intervention is a palliative care program, including 1) training at least two facility staff as Palliative Care Leads, 2) training for all staff in general principles of palliative care, 3) structured screening for palliative care needs, and 4) on-site specialty palliative care consultations for a one-year intervention period. All residents with at least moderate cognitive impairment, present in the facility for at least 30 days, and not on hospice at baseline are considered eligible. Opt-out consent is obtained from legal decision-makers. Outcome assessments measuring symptoms and quality of care are obtained from staff and family proxy respondents at four time points: pre-implementation (baseline), six months after implementation, at 12 months (conclusion of implementation), and six months after the end of implementation. Palliative care attitudes and practices are assessed through surveys of frontline nursing home staff both pre- and post-implementation. Qualitative and quantitative implementation data, including fidelity assessments and interviews with Palliative Care Leads, are also collected. The study will follow the Declaration of Helsinki. Discussion: This trial assesses the implementation and effectiveness of a robust palliative care intervention for residents with moderate-to-advanced cognitive impairment in 16 diverse nursing homes. The intervention represents an innovative, pragmatic approach that includes both internal capacity-building of frontline nursing home staff, and support from external palliative care specialty consultants.