Publications by authors named "Jennifer L Wolff"

152 Publications

Examining Information Needs of Heart Failure Patients and Family Companions using a Pre-Visit Question Prompt List and Audiotaped Data: Findings from a Pilot Study.

J Card Fail 2021 Nov 21. Epub 2021 Nov 21.

University of North Carolina, Chapel Hill, USA; Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, USA. Electronic address:

Background: Question prompt lists (QPLs) are an effective tool for improving communication during medical visits. However, no studies have attempted to correlate intentions related to question asking and actual questions asked during visits. Moreover, few studies have used QPLs with patients with Heart Failure (HF) or family companions who accompany them to visits. We examined the usage of a pre-visit QPL for patients with HF and their family companions intended to enhance engagement in HF care. The aim of this research was to assess which questions from the QPL patients and companions selected most frequently to ask and compare this to which questions were actually asked during the medical visit.

Methods: This is a secondary analysis of question prompt list and audiotaped visit data from a pilot study which enrolled and consented HF patients, family companions, and heart failure clinicians. A single group of 30 HF patients and 23 family companions received the QPL to complete in the waiting room immediately before their cardiology visit. To meet our aims, we calculated frequencies for each question selected and asked from the QPL, using data derived from completed prompt lists and audiotaped medical visits. A follow-up survey was administered 2 days after the appointment to assess differences in how participants filled out and used the prompt list.

Results: Patients and companions primarily selected and asked questions from the QPL regarding management and treatment of the disease, general questions about HF, and questions about prognosis. Participants rarely asked questions about support for family and friends or healthcare team roles and responsibilities. Patients and companions did not ask many of the questions they reported wanting to ask.

Conclusion: Prompt lists may empower patients and companions to communicate with their clinician by identifying important questions to help overcome patients' and companions' knowledge gaps. More research is needed to understand the true impact of prompt lists on patient-family-clinician communication and subsequent HF outcomes, and how best to implement them in clinical workflows to increase their potential utility.
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http://dx.doi.org/10.1016/j.cardfail.2021.11.012DOI Listing
November 2021

Acute care utilization risk among older adults living undiagnosed or unaware of dementia.

J Am Geriatr Soc 2021 Nov 13. Epub 2021 Nov 13.

Division of Geriatric Medicine and Gerontology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.

Background: Dementia is associated with increased risk of hospitalization and emergency department (ED) visits. Many persons with dementia are undiagnosed or unaware of their diagnosis, however. Our objective was to determine whether undiagnosed dementia or unawareness affects risk of hospitalization or ED visits.

Methods: Retrospective longitudinal cohort study of 3537 community-living adults age ≥65 enrolled in the 2011-2017 National Health and Aging Trends Study with linked fee-for-service Medicare claims. Using self or proxy reported diagnosis, proxy dementia screening questionnaire, cognitive testing, and Medicare claims diagnosis, participants were classified as having (1) no dementia or dementia, for which they were classified as (2) undiagnosed, (3) diagnosed but unaware, or (4) diagnosed and aware. Proportional hazards models evaluated all-cause and potentially preventable hospitalization and ED visit risk by time-varying dementia status, adjusting for older adult characteristics.

Results: Most participants (n = 2879) had no dementia at baseline. Among participants with dementia at baseline (n = 658), 187 were undiagnosed, 300 diagnosed but unaware, and 171 diagnosed and aware. In multivariable adjusted proportional hazards models, persons with undiagnosed dementia had lower risk of hospitalization and ED visits compared to persons diagnosed and aware (all-cause hospitalization aHR 0.59 [0.44, 0.79] and ED visit aHR 0.63 [0.47, 0.85]) and similar risks of these outcomes compared to persons without dementia. Individuals diagnosed but unaware had greater risk compared to those without dementia: aHR 1.37 (1.18, 1.59) for all-cause hospitalization and 1.48 (1.28, 1.71) for ED visits; they experienced risk comparable to individuals diagnosed and aware.

Conclusion: Older adults with undiagnosed dementia are not at increased risk of acute care utilization after accounting for differences in other characteristics. Individuals unaware of diagnosed dementia demonstrate risk similar to individuals aware of the diagnosis. Increasing diagnosis alone may not affect acute care utilization. The role of awareness warrants further investigation.
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http://dx.doi.org/10.1111/jgs.17550DOI Listing
November 2021

Current practices of family caregiver training during home health care: A qualitative study.

J Am Geriatr Soc 2021 Oct 7. Epub 2021 Oct 7.

Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

Background: Home health clinicians report a need for family caregiver assistance during the majority of skilled home health care episodes. Since 2018, the Medicare Conditions of Participation has required home health agencies to provide training to family caregivers. However, little is known regarding current practices of family caregiver assessment and training during home health care.

Methods: Qualitative research relying on semistructured key informant interviews with registered nurses and physical therapists (n = 19), hereafter "clinicians," from four home health agencies. Interviews were recorded and transcribed, then analyzed using directed content analysis to identify relevant themes and concepts.

Results: Three agencies were not-for-profit and one was for-profit; three were urban and one was rural; two operated on a local scale, one on a regional scale, and one on a national scale. Key informants had an average of 9.3 years of experience in home health care and an average age of 45.0 years. Clinicians described a cyclic process of family caregiver training including four major phases: initial assessment, education, reassessment, and adjustment. Initial assessment was informal and holistic; education was delivered via demonstration and teach-back; reassessment was used to evaluate caregiver progress and inform adjustments to the care plan. Clinicians noted that their perceptions regarding the success of family caregiver training efforts influenced decisions relating to clinical practice, including the number of visits provided and whether to discharge the patient.

Conclusions: Caregiver training is currently integrated into clinician workflows in home health care and helps determine visit intensity and discharge timing, but clinicians face a lack of structured assessment instruments or training materials. Efforts by policymakers and home health agencies to facilitate clinicians' training efforts could positively affect the cost and quality of Medicare-funded home health care.
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http://dx.doi.org/10.1111/jgs.17492DOI Listing
October 2021

A scoping review of person and family engagement in the context of multiple chronic conditions.

Health Serv Res 2021 10 4;56 Suppl 1:990-1005. Epub 2021 Oct 4.

Johns Hopkins University School of Medicine, Department of Internal Medicine, Baltimore, Maryland, USA.

Objective: To review definitions, concepts, and evidence regarding person and family engagement for persons with multiple chronic conditions (MCCs) in order to identify opportunities to advance the field.

Data Source: Ovid MEDLINE.

Study Design: We performed a two-step process as follows: (1) a critical review of conceptual models of engagement to identify key concepts most pertinent to engagement among persons with MCC as a "launch pad" to our scoping review and (2) a scoping review of reviews of engagement for persons living with MCC.

Data Collection/extraction Methods: First, we critically reviewed six models of engagement. Second, our scoping review identified 1297 citations, with 67 articles meeting criteria for inclusion. Of these, we focused on reviews, of which there were nine titles/abstracts retained for full-text consideration. Six full-text reviews were included in the final analysis. The purpose, review type, population, number/type of included studies, theoretical framework, and findings of each study were extracted and analyzed thematically.

Principal Findings: Conceptual models of engagement differ with respect to areas of emphasis (e.g., systems or clinical encounters) as well as attention to vulnerable populations, involvement of family, consideration of cost-benefit trade-offs, and attention to outcomes that matter most. Our scoping review of reviews identified just one article explicitly focused on engagement interventions for those with MCC. Other reviews examined elements of self-management and involvement in decision making, conceptually related to engagement without explicit use of the word. We find that existing evidence has predominantly described individual-level strategies rather than targeting organizations, systems, or policies. Barriers to engagement are not well described nor are potential downsides to engagement. Family engagement is rarely considered.

Conclusions: Promising areas of future work include attention to barriers to engagement including trust, goal-based care, the design of structural changes to care delivery, trade-offs between benefits and costs, and family engagement.
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http://dx.doi.org/10.1111/1475-6773.13857DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8515220PMC
October 2021

The Future of Dementia Care, Caregiving, and Services Research.

J Am Med Dir Assoc 2021 07 10;22(7):1361-1362. Epub 2021 Jul 10.

Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA. Electronic address:

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http://dx.doi.org/10.1016/j.jamda.2021.05.025DOI Listing
July 2021

The future of dementia care, caregiving, and services research.

J Am Geriatr Soc 2021 07;69(7):1752-1754

Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

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http://dx.doi.org/10.1111/jgs.17268DOI Listing
July 2021

Emerging topics in dementia care and services.

J Am Geriatr Soc 2021 07;69(7):1763-1773

Department of Medicine, University of California, Los Angeles, Los Angeles, California, USA.

Background: The National Institute on Aging (NIA), in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act (NAPA), convened a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series. This review article summarizes three areas of emerging science that are likely to grow in importance given advances in measurement, technologies, and diagnostic tests that were presented at the Summit.

Results: Dr. Cassel discussed novel ethical considerations that have resulted from scientific advances that have enabled early diagnosis of pre-clinical dementia. Dr. Monin then summarized issues regarding emotional experiences in persons with dementia and their caregivers and care partners, including the protective impact of positive emotion and heterogeneity of differences in emotion by dementia type and individual characteristics that affect emotional processes with disease progression. Finally, Dr. Jared Benge provided an overview of the role of technologies in buffering the impact of cognitive change on real-world functioning and their utility in safety and monitoring of function and treatment adherence, facilitating communication and transportation, and increasing access to specialists in underserved or remote areas.

Conclusions: National policy initiatives, supported by strong advocacy and increased federal investments, have accelerated the pace of scientific inquiry and innovation related to dementia care and services but have raised some new concerns regarding ethics, disparities, and attending to individual needs, capabilities, and preferences.
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http://dx.doi.org/10.1111/jgs.17341DOI Listing
July 2021

Neighborhood Broadband and Use of Telehealth Among Older Adults: Cross-sectional Study of National Survey Data Linked With Census Data.

J Med Internet Res 2021 06 14;23(6):e26242. Epub 2021 Jun 14.

Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, United States.

Background: The COVID-19 pandemic has amplified the role of telehealth in health care delivery. Regional variation in internet access and telehealth use are well-documented, but the effect of neighborhood factors, including the pervasiveness of broadband internet, on older adults' telehealth usage in the context of internet access is not known.

Objective: This study aimed to investigate how individual and neighborhood characteristics, including the pervasiveness of neighborhood broadband internet subscription, are associated with engagement in telehealth among older adults with internet access.

Methods: In this cross-sectional study, we included 5117 community-living older adults aged ≥65 years, who participated in the 2017 National Health and Aging Trends Study with census tract-level data for participants' places of residence from the American Community Survey.

Results: Of an estimated 35.3 million community-living older adults, 21.1 million (59.7%) were internet users, and of this group, more than one-third (35.8%) engaged in telehealth. In a multivariable regression model adjusted for individual- and neighborhood-level factors, age, education, income, and the pervasiveness of neighborhood broadband internet subscription were associated with engagement in telehealth, while race, health, county metropolitan status, and neighborhood social deprivation were not. Among internet users, living in a neighborhood at the lowest (versus highest) tertile of broadband internet subscription was associated with being 40% less likely to engage in telehealth (adjusted odds ratio 0.61, 95% CI 0.42-0.87), all else equal.

Conclusions: Neighborhood broadband internet stands out as a mutable characteristic that is consequential to engagement in telehealth.
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http://dx.doi.org/10.2196/26242DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8240798PMC
June 2021

Supplemental nutrition assistance program 2009 expansion and cardiometabolic markers among low-income adults.

Prev Med 2021 09 5;150:106678. Epub 2021 Jun 5.

Johns Hopkins Bloomberg School of Public Health, Department of Health Policy and Management, USA. Electronic address:

A 2009 Supplemental Nutrition Assistance Program (SNAP) policy change that expanded eligibility and increased benefit amounts has been associated with reduced food insecurity. This study tests the hypothesis that the SNAP policy change corresponds with improved stress- and nutrition-sensitive cardiometabolic markers. This study included non-pregnant participants aged 18-59 with annual family incomes ≤185% of the federal poverty guideline from the repeated cross-sectional NHANES study. Those living in SNAP eligible households (income ≤130% of the poverty guideline) were compared to those who were likely non-eligible (income 131%-≤185%). Difference-in-differences analyses compared hemoglobin A1c (%), CRP (mg/dL), total cholesterol (mg/dL), LDL (mg/dL) and waist circumference (cm) across groups before (2007-2008) and after (2009-2010) the SNAP policy change. Sampling weights were applied. Adjusting for demographic, socioeconomic, household and health factors, there were statistically significant difference-in-differences estimates for hemoglobin A1c (p = 0.003, n = 3723) and total cholesterol (p = 0.028, n = 3710). SNAP eligible adults had no difference in hemoglobin A1c after the policy change and, among those less than 40 years of age, 5 mg/dL lower total cholesterol levels whereas likely non-SNAP eligible adults had 0.14% higher hemoglobin A1c and no difference in total cholesterol after the policy change. The 2009 SNAP expansion was associated with improved nutrition-sensitive cardiometabolic markers in SNAP-eligible adults. This study found less of an upward trend in hemoglobin A1c levels for young and middle aged adults and decreased total cholesterol for young adults. These results highlight the potential role of SNAP to prevent costly chronic conditions among low-income U.S. adults.
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http://dx.doi.org/10.1016/j.ypmed.2021.106678DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8316430PMC
September 2021

National trends in extremity fracture hospitalizations among older adults between 2003 and 2017.

J Am Geriatr Soc 2021 09 1;69(9):2556-2565. Epub 2021 Jun 1.

Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

Background: Fractures in late life are highly consequential for health, services use, and spending. Little is known about trends in extremity fracture hospitalizations among older adults in the United States.

Design: Retrospective longitudinal cohort study.

Setting: The 2003-2017 National Inpatient Sample (NIS), a representative sample of U.S. community hospitals.

Participants: Hospitalized adults aged 65 and older with a diagnosis of upper or lower extremity fracture.

Measurements: Incidence of extremity fracture hospitalization and mortality, using NIS discharge and trend weights, and population denominators derived from the U.S. Census Bureau. Incidence was reported separately for men and women by age, fracture diagnosis, and injury mechanism. Weighted linear regression was used to test for significant trends over time.

Results: Incidence of extremity fracture hospitalizations declined in both women (15.7%, p trend < 0.001) and men (3.2%, p trend < 0.001) between 2003 and 2017. This trend was primarily attributed to a decline in low energy femur fractures which accounted for 65% of all fracture hospitalizations. Among older adults with an extremity fracture hospitalization, mortality declined from 5.1% in 2003 to 3.3% in 2017 in men, and from 2.6% to 1.9% in women (p trend < 0.001). High energy fractures were due to falls (53%), motor vehicle accidents (34%), and other high impact injuries (13%). Overall, 12% of extremity fracture hospitalizations were attributed to high-energy injuries: increases were observed among men ages 65-74 (20%; p trend < 0.001) and 75-84 (10%; p trend = 0.013), but not among women of any age.

Conclusion: Observed declines in the incidence of extremity fracture hospitalizations and related mortality are encouraging. However, increasing incidence of fracture hospitalization from high energy injuries among men suggests that older adults with complex injuries will be seen with more prevalence in the future.
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http://dx.doi.org/10.1111/jgs.17281DOI Listing
September 2021

Impact of Neighborhood Social and Environmental Resources on Medicaid Spending.

Am J Prev Med 2021 08 24;61(2):e93-e101. Epub 2021 May 24.

Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland; The Roger C. Lipitz Center for Integrated Health Care, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland.

Introduction: In an era of COVID-19, Black Lives Matter, and unsustainable healthcare spending, efforts to address the root causes of health are urgently needed. Research linking medical spending to variation in neighborhood resources is critical to building the case for increased funding for social conditions. However, few studies link neighborhood factors to medical spending. This study assesses the relationship between neighborhood social and environmental resources and medical spending across the spending distribution.

Methods: Individual-level health outcomes were drawn from a sample of Medicaid enrollees living in Baltimore, Maryland during 2016. A multidimensional index of neighborhood social and environmental resources was created and stratified by tertile (high, medium, and low). Differences were examined in individual-level medical spending associated with living in high-, medium-, or low-resource neighborhoods in unadjusted and adjusted 2-part models and quantile regression models. Analyses were conducted in 2019.

Results: Enrollees who live in neighborhoods with low social and environmental resources incur significantly higher spending at the mean and across the distribution of medical spending even after controlling for age, race, sex, and morbidity than those who live in neighborhoods with high social and environmental resources. On average, this spending difference between individuals in low- and those in high-resource neighborhoods is estimated to be $523.60 per person per year.

Conclusions: Living in neighborhoods with low (versus those with high) resources is associated with higher individual-level medical spending across the distribution of medical spending. Findings suggest potential benefits from efforts to address the social and environmental context of neighborhoods in addition to the traditional orientation to addressing individual behavior and risk.
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http://dx.doi.org/10.1016/j.amepre.2021.02.019DOI Listing
August 2021

Caregiver economics: A framework for estimating the value of the American Jobs Plan for a caring infrastructure.

J Am Geriatr Soc 2021 08 18;69(8):2370-2373. Epub 2021 May 18.

Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

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http://dx.doi.org/10.1111/jgs.17269DOI Listing
August 2021

Home and Neighborhood Context of Falls Among Black and White Older Americans.

J Aging Health 2021 10 20;33(9):721-731. Epub 2021 Apr 20.

Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.

To examine social and physical environmental fall-risk factors in a nationally representative sample of community-living older adults overall and by racial group. We used data from the 2015 and 2016 rounds of the National Health and Aging Trends Study ( = 5581) linked to census tract measures from the American Community Survey. Recurrent falls are defined as 2+ self-reported falls over 12 months. Older adults with recurrent falls were more likely to have lower education, lower income, financial hardship, live in homes with disorder and disrepair and in neighborhoods without sidewalks, with high social deprivation, and in nonmetropolitan counties. Home disrepair, lack of sidewalks, and residence in a nonmetropolitan county were important fall-risk factors among White older adults only. Financial hardship was an important risk factor among Black older adults. Environmental factors are associated with recurrent falls among older Americans and should be incorporated into fall-risk profiles and prevention efforts.
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http://dx.doi.org/10.1177/08982643211009436DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8416780PMC
October 2021

Caring for Older Adults With Self-Reported Vision Impairment: Findings from the National Study of Caregiving.

Am J Ophthalmol 2021 07 5;227:211-221. Epub 2021 Apr 5.

From the Johns Hopkins Wilmer Eye Institute, Baltimore, Maryland, USA; Johns Hopkins Disability Health Research Center, Johns Hopkins University, Baltimore, Maryland, USA; Johns Hopkins University Center on Aging and Health, Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA. Electronic address:

Purpose: The purpose of this study was to examine caregiving relationships for older adults with vision impairment (VI).

Design: Cross-sectional study with a nationally representative sample.

Methods: Setting: the National Health and Aging Trends Study linked to the National Study of Caregiving, Year 2011.

Study Population: 1,776 family or unpaid caregivers to community-dwelling Medicare beneficiaries age ≥65 years old.

Outcome Measurement: in the preceding month, 1) the number of hours of care provided; 2) the valued activities affected by caregiving; and 3) the odds of experiencing substantial emotional, financial, and physical difficulty related to providing care.

Exposure: VI was defined as a report of blindness or difficulty with distance or near vision.

Results: Among 1,776 caregivers, 428 caregivers spent an average ± standard error (SE) of 111 ± 9.1 hours per month assisting older adults with VI, whereas 1,348 spent an average of 72 ± 3.3 hours assisting older adults without VI. In fully adjusted negative binomial regression analyses, caregivers of older adults with VI spent 36% more hours (incident rate ratio [IRR]: 1.36; 95% confidence interval [CI]: 1.15-1.60) providing care and reported having 61% more valued activities affected (IRR: 1.61; 95% CI: 1.23-2.10) than caregivers of older adults without VI. In fully adjusted logistic regression analyses, caregivers of older adults with VI had greater odds of emotional (odds ratio [OR]: 1.46; 95% CI: 1.04-2.03) but not financial (OR: 1.33; 95% CI: 0.87-2.03) or physical (OR: 1.13; 95% CI: 0.74-1.74) difficulty related to providing care than caregivers of older adults without VI.

Conclusions: These results suggest that caring for older adults with VI places different demands on time and emotional wellbeing than caring for older adults without VI, but no differences in financial or physical difficulties.
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http://dx.doi.org/10.1016/j.ajo.2021.03.031DOI Listing
July 2021

Unmet family caregiver training needs associated with acute care utilization during home health care.

J Am Geriatr Soc 2021 07 26;69(7):1887-1895. Epub 2021 Mar 26.

Department of Health Policy & Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.

Background/objectives: Medicare-certified home health agencies are required to offer family caregiver training, but little is known regarding the potential impact of this training on outcomes during home health care. We estimate the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and examine whether these unmet training needs are associated with older adults' risk of acute care utilization during home health care.

Design: Observational, nationally representative cohort study.

Setting: Linked National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016.

Participants: Thousand two hundred seventeen (weighted n = 5,870,905) community-living Medicare beneficiaries who received home health care between 2011 and 2016.

Measurements: Family caregivers' unmet training needs measured from OASIS and Medicare claims; home health patients' acute care utilization (including emergency department use and hospitalization) measured from OASIS.

Results: Rates of unmet need for training varied by activity, from 8.2% of family caregivers assisting with household chores to 16.0% assisting with self-care tasks. After controlling for older adult and home health provider characteristics, older adults whose family caregivers had an unmet need for training with any caregiving activity were twice as likely to incur acute care utilization during their home health episode (adjusted odds ratio [aOR]: 2.01, 95% confidence interval [CI]: 1.20-3.38). This relationship held across specific caregiving activities including household chores (aOR: 1.98; 95% CI: 1.13-3.46), medication management (aOR: 2.50; 95% CI: 1.46-4.26), patient supervision (aOR: 2.92; 95% CI: 1.36-6.24), and self-care tasks (aOR: 3.11; 95% CI: 1.62-6.00).

Conclusions And Relevance: Unmet training needs among family caregivers are associated with greater likelihood of acute care utilization among Medicare beneficiaries receiving home health care. Identifying and addressing family caregivers' training needs may reduce older adults' risk of acute care utilization during home health care.
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http://dx.doi.org/10.1111/jgs.17138DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8273145PMC
July 2021

Receipt of Posthospitalization Care Training Among Medicare Beneficiaries' Family Caregivers.

JAMA Netw Open 2021 03 1;4(3):e211806. Epub 2021 Mar 1.

Department of Health Policy & Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland.

Importance: Medicare conditions of participation require hospitals to provide training to family and unpaid caregivers when their support is necessary to enact the postdischarge care plan. However, caregivers often report feeling unprepared for this role.

Objective: To describe the characteristics of caregivers who assist with posthospitalization care transitions and assess the prevalence of and factors associated with receipt of adequate transitional care training.

Design, Setting, And Participants: This cross-sectional study analyzed data from the 2017 National Health and Aging Trends Study and its linked National Study of Caregiving, surveys of Medicare beneficiaries and their family and unpaid caregivers. The present study included family caregivers for community-living Medicare beneficiaries 65 years or older with disabilities. Data analysis was performed from June to September 2020.

Main Outcomes And Measures: Characteristics of family caregivers by whether they assisted during a posthospitalization care transition in the year preceding the survey interview. Unweighted frequencies and weighted percentages, as well as the results of weighted Pearson and Wald tests for differences between groups, are reported. Receipt of the training needed to manage the older adult's posthospitalization care transition (hereafter referred to as adequate transitional care training) as a function of individual caregiver characteristics was modeled using multivariable, weighted logistic regression.

Results: Of 1905 family caregivers, 618 (58.9%) were 60 years or older, 1288 (63.8%) were female, and 796 (41.7%) assisted with a posthospitalization care transition. Those who assisted with a posthospitalization care transition were more likely to report experiencing financial (154 [18.3%] vs 123 [10.1%]; P < .001), emotional (344 [41.3%] vs 342 [31.1%]; P < .001), and physical (200 [22.2%] vs 170 [14.6%]; P = .001) difficulty associated with caregiving. Among caregivers who assisted during a posthospitalization care transition, 490 (59.1%) reported receiving adequate transitional care training. Caregivers were less likely to report receiving adequate training if they assisted an older adult who was female (316 [62.3%] vs 227 [73.2%]; P = .02), Black (163 [14.0%] vs 121 [19.8%]; P = .02), or enrolled in Medicaid (127 [21.2%] vs 90 [31.9%]; P = .01). After adjusting for older adult characteristics, caregivers were half as likely to report receiving adequate training if they were Black (adjusted odds ratio [aOR], 0.52; 95% CI, 0.31-0.89) or experienced financial difficulty (aOR, 0.50; 95% CI, 0.31-0.81). Caregivers were more than twice as likely to report receiving adequate training if they were female (aOR, 2.44; 95% CI, 1.65-3.61) or spoke with the older adult's clinician about his or her care in the past year sometimes or often vs never (aOR, 1.93; 95% CI, 1.19-3.12).

Conclusions And Relevance: In this cross-sectional study, caregivers were less likely to receive adequate transitional care training if they were Black; experienced financial difficulty; or cared for a Black, female, or Medicaid-enrolled older adult. These findings suggest that changes to the discharge process, such as using standardized caregiver assessments, may be necessary to ensure equitable support of family caregivers.
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http://dx.doi.org/10.1001/jamanetworkopen.2021.1806DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7967076PMC
March 2021

A randomized intervention involving family to improve communication in breast cancer care.

NPJ Breast Cancer 2021 Feb 12;7(1):14. Epub 2021 Feb 12.

The Johns Hopkins University School of Medicine, Baltimore, MD, USA.

We examined the effects of a communication intervention to engage family care partners on patient portal (MyChart) use, illness understanding, satisfaction with cancer care, and symptoms of anxiety in a single-blind randomized trial of patients in treatment for breast cancer. Patient-family dyads were recruited and randomly assigned a self-administered checklist to clarify the care partner role, establish a shared visit agenda, and facilitate MyChart access (n = 63) or usual care (n = 55). Interviews administered at baseline, 3, 9 (primary endpoint), and 12 months assessed anxiety (GAD-2), mean FAMCARE satisfaction, and complete illness understanding (4 of 4 items correct). Time-stamped electronic interactions measured MyChart use. By 9 months, more intervention than control care partners registered for MyChart (77.8 % vs 1.8%; p < 0.001) and logged into the patient's account (61.2% vs 0% of those registered; p < 0.001), but few sent messages to clinicians (6.1% vs 0%; p = 0.247). More intervention than control patients viewed clinical notes (60.3% vs 32.7%; p = 0.003). No pre-post group differences in patient or care partner symptoms of anxiety, satisfaction, or complete illness understanding were found. Intervention patients whose care partners logged into MyChart were more likely to have complete illness understanding at 9 months (changed 70.0% to 80.0% vs 69.7% to 54.6%; p = 0.03); symptoms of anxiety were numerically lower (16.7% to 6.7% vs 15.2% to 15.2%; p = 0.24) and satisfaction numerically higher (15.8-16.2 vs 18.0-17.4; p = 0.25). A brief, scalable communication intervention led to greater care partner MyChart use and increased illness understanding among patients with more engaged care partners (NCT03283553).
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http://dx.doi.org/10.1038/s41523-021-00217-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7881185PMC
February 2021

Family Caregiver Training Needs and Medicare Home Health Visit Utilization.

Med Care 2021 04;59(4):341-347

Departments of Health Policy and Management.

Background: Medicare home health providers are now required to deliver family caregiver training, but potential consequences for service intensity are unknown.

Objective: The objective of this study was to assess how family caregiver training needs affect the number and type of home health visits received.

Design: Observational study using linked National Health and Aging Trends Study (NHATS), Outcomes and Assessment Information Set (OASIS), and Medicare claims data. Propensity score adjusted, multivariable logistic, and negative binomial regressions model the relationship between caregivers' training needs and number/type of home health visits.

Subjects: A total of 1217 (weighted n=5,870,905) National Health and Aging Trends Study participants receiving Medicare-funded home health between 2011 and 2016.

Measures: Number and type of home health visits, from Medicare claims. Family caregivers' training needs, from home health clinician reports.

Results: Receipt of nursing visits was more likely when family caregivers had medication management [adjusted odds ratio (aOR): 3.03; 95% confidence interval (CI): 1.06, 8.68] or household chore training needs (aOR: 3.38; 95% CI: 1.33, 8.59). Receipt of therapy visits was more likely when caregivers had self-care training needs (aOR: 1.70; 95% CI: 1.01, 2.86). Receipt of aide visits was more likely when caregivers had household chore (aOR: 3.54; 95% CI: 1.82, 6.92) or self-care training needs (aOR: 2.12; 95% CI: 1.11, 4.05). Medication management training needs were associated with receiving an additional 1.06 (95% CI: 0.11, 2.01) nursing visits, and household chores training needs were associated with an additional 3.24 total (95% CI: 0.21, 6.28) and 1.32 aide visits (95% CI: 0.36, 2.27).

Conclusion: Family caregivers' activity-specific training needs may affect home health visit utilization.
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http://dx.doi.org/10.1097/MLR.0000000000001487DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7954883PMC
April 2021

SHARING Choices: A Pilot Study to Engage Family in Advance Care Planning of Older Adults With and Without Cognitive Impairment in the Primary Care Context.

Am J Hosp Palliat Care 2021 Nov 16;38(11):1314-1321. Epub 2020 Dec 16.

121577MedStar Health Institute for Quality and Safety, MedStar Health System, Columbia, MD, USA.

Context: Few advance care planning (ACP) interventions proactively engage family or address the needs of older adults with and without cognitive impairment in the primary care context.

Objectives: To pilot a multicomponent intervention involving: an introductory letter describing a new clinic initiative and inviting patients to complete a patient-family pre-visit agenda-setting checklist, share their electronic health information with family, and talk about their wishes for future care with a trained ACP facilitator (SHARING Choices).

Methods: SHARING Choices was delivered to 40 patient-family dyads from 3 primary care clinics. Facilitators completed post-ACP reports. Patient and family participants completed baseline and 6-week surveys.

Results: Patients were on average 75 years (range 65-90). Family were spouses (85.0%) or adult children (15.0%). At 6 weeks, nearly half of dyads participated in ACP conversations (n = 19) or used the agenda-setting checklist (n = 17), one-third (n = 13) registered family to access the patient's portal account, and most (n = 28) provided the primary care team with a new or previously completed advance directive. Of 12 patients who screened positive for cognitive impairment, 9 completed ACP conversations and 10 provided the clinic with an advance directive. ACP engagement, measured on a 4-point scale, was comparatively lower at baseline and 6 weeks among family (3.05 and 3.19) than patients (3.56 and 3.54). Patients remarked that SHARING Choices clarified communication and preferences while family reported a better understanding of their role in ACP and communication.

Conclusion: SHARING Choices was acceptable among older adults with and without cognitive impairment and may increase advance directive completion.
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http://dx.doi.org/10.1177/1049909120978771DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8206219PMC
November 2021

Challenges and approaches to involving family caregivers in primary care.

Patient Educ Couns 2021 07 28;104(7):1644-1651. Epub 2020 Nov 28.

Department of Human Development, Cornell University, Ithaca, USA.

Objective: Older adults are commonly accompanied to routine medical visits. This study identifies challenges and explores approaches to managing patient-family interactions in primary care.

Methods: Semi-structured interviews were conducted with primary care clinicians and staff (N = 30) as well as older adult patients and family caregivers (N = 40). Interviews were analyzed using content analysis.

Results: Three major challenges to patient-family interactions were identified: navigating patient autonomy and family motivation to participate; adjudicating patient-family disagreements; and minimizing obtrusive behaviors by caregivers. Three approaches to managing patient-family interactions were identified. Collaborating involved non-judgmental listening, consensus-building, and validation of different perspectives. Dividing involved separating the patient and family member to elicit confidential information from one member of the dyad. Focusing involved re-directing the conversation to either the patient or family member while minimizing input from the other. Approaches varied by patients' cognitive status and overall health condition. In general, patients and caregivers expressed the most positive attitudes toward collaborating and patient-directed focusing approaches.

Conclusion: Primary care clinicians use varied approaches to managing their interactions with patient-family dyads. Patients and caregivers generally prefer those approaches that involve collaborative rather than individual discussions.

Practice Implications: Findings suggest the potential for the development of communication-focused interventions to promote positive clinician-patient-family interactions.
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http://dx.doi.org/10.1016/j.pec.2020.11.031DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8160020PMC
July 2021

Social Vulnerability and Medical Complexity Among Medicare Beneficiaries Receiving Home Health Without Prior Hospitalization.

Innov Aging 2020 3;4(6):igaa049. Epub 2020 Oct 3.

Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland.

Background And Objectives: Recent Medicare home health payment changes reduce reimbursement for care provided to patients without a preceding hospitalization. Beneficiaries may enter home health without a preceding hospitalization via referral from a community provider or through incurring multiple episodes of home health care. We assess potential implications of this change by examining the characteristics of patients accessing Medicare home health through each of these pathways.

Research Design And Methods: Nationally representative retrospective cohort study of 1,224 (weighted = 5,913,080) older adults who participated in the National Health and Aging Trends Study between 2011 and 2015 and received Medicare-funded home health within 1 year of interview. Patient characteristics before home health were drawn from the National Health and Aging Trends Study, while characteristics during home health, referral source, and number of episodes incurred were drawn from linked Outcomes and Assessment Information Set and Medicare claims. We tested for differences in characteristics by referral source and number of episodes using weighted chi-square tests and tests.

Results: Patients referred to home health from the community were more than twice as likely to be Medicaid-enrolled (24.0% vs 12.5%, < .001), have dementia (29.5% vs 12.4%, < .001), and have received 80 or more hours/month of family caregiver assistance (20.7% vs 10.1%, < .001) prior to home health entry compared to those referred from a hospital or skilled nursing facility. Patients who incurred multiple episodes in a spell of home health care were more likely to have high clinical severity during home health (48.3% vs 28.1%, < .001), compared to those with a single episode.

Discussion And Implications: Greater social vulnerability and care needs home health were associated with community referral, while greater clinical severity home health was associated with incurring multiple episodes of care. Findings suggest that recent payment changes may threaten home health access among beneficiaries with greater social vulnerability and/or medical complexity.
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http://dx.doi.org/10.1093/geroni/igaa049DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7672253PMC
October 2020

Assessing and Addressing Family Caregivers' Needs and Risks in Primary Care.

J Am Geriatr Soc 2021 02 20;69(2):432-440. Epub 2020 Nov 20.

Department of Human Development, Cornell University, Ithaca, New York, USA.

Objectives: To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.

Design: Cross-sectional, national mail-based survey.

Setting: American Medical Association Masterfile database.

Participants: U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62).

Measurements: Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments.

Results: Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type.

Conclusions: Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice.
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http://dx.doi.org/10.1111/jgs.16945DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8062767PMC
February 2021

Caring for Older Adults With Vision Impairment and Dementia.

Innov Aging 2020 11;4(6):igaa043. Epub 2020 Sep 11.

Dana Center for Preventive Ophthalmology, Johns Hopkins Wilmer Eye Institute, Baltimore, Maryland.

Background And Objectives: Dementia and vision impairment (VI) are common among older adults but little is known about caregiving in this context.

Research Design And Methods: We used data from the 2011 National Health and Aging Trends Study, a nationally representative survey of Medicare beneficiaries, linked to their family/unpaid helpers from the National Study of Caregiving. Vision impairment was defined as self-reported blindness or difficulty with distance/near vision. Probable dementia was based on survey report, interviews, and cognitive tests. Our outcomes included hours of care provided, and number of valued activities (scored 0-4) affected by caregiving, per month.

Results: Among 1,776 caregivers, 898 (55.1%, weighted) assisted older adults without dementia or VI, 450 (21.9%) with dementia only, 224 (13.0%) with VI only, and 204 (10.0%) with dementia and VI. In fully adjusted negative binomial regression analyses, caregivers of individuals with dementia and VI spent 1.7 times as many hours (95% confidence interval [CI] = 1.4-2.2) providing care than caregivers of those without either impairment; however, caregivers of individuals with dementia only (95% CI = 1.1-1.6) and VI only (95% CI = 1.1-1.6) spent 1.3 times more hours. Additionally, caregivers of individuals with dementia and VI had 3.2 times as many valued activities affected (95% CI = 2.2-4.6), while caregivers of dementia only and VI only reported 1.9 times (95% CI = 1.4-2.6) and 1.3 times (95% CI = 0.9-1.8) more activities affected, respectively.

Discussion And Implications: Our results suggest that caring for older adults with VI involves similar time demands as caring for older adults with dementia, but that participation impacts are greater when caring for older adults with both dementia and VI.
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http://dx.doi.org/10.1093/geroni/igaa043DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7657090PMC
September 2020

Do Caregiving Factors Affect Hospitalization Risk Among Disabled Older Adults?

J Am Geriatr Soc 2021 01 22;69(1):129-139. Epub 2020 Sep 22.

Department of Health Policy and Management, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, USA.

Background/objectives: Hospitalization is common among older adults with disability, many of whom receive help from a caregiver and have dementia. Our objective was to evaluate the association between caregiver factors and risk of hospitalization and whether associations differ by dementia status.

Design: Longitudinal observational study.

Setting: The 1999 and 2004 National Long-Term Care Survey and the 2011 and 2015 National Health and Aging Trends Study, linked caregiver surveys, and Medicare claims.

Participants: A total of 2,589 community-living Medicare fee-for-service beneficiaries, aged 65 years or older (mean age = 79 years; 63% women; 31% with dementia), with self-care or mobility disability and their primary family or unpaid caregiver.

Measurements: Self-reported characteristics of older adults and their caregivers were assessed from older adult and caregiver survey interviews. Older adult hospitalization over the subsequent 12 months was identified in Medicare claims. Multivariable Cox proportional hazards models adjusted for older adult characteristics and were stratified by dementia status.

Results: In this nationally representative cohort, 38% of older adults with disabilities were hospitalized over 12 months following interview. Increased hospitalization risk was associated with having a primary caregiver who helped with healthcare tasks (adjusted hazard ratio (aHR) = 1.22; 95% confidence interval (CI) = 1.05-1.40), reported physical strain (aHR = 1.21; 95% CI = 1.04-1.42), and provided more than 40 hours of care weekly (aHR = 1.26; 95% CI = 1.04-1.54 vs ≤20 hours). Having a caregiver who had helped for 4 years or longer (vs <1 year) was associated with 38% lower risk of hospitalization (aHR = 0.62; 95% CI = 0.49-0.79). Older adults with and without dementia had similar rates of hospitalization (39.5% vs 37.3%; P = .4), and caregiving factors were similarly associated with hospitalization regardless of older adults' dementia status.

Conclusion: Select caregiving characteristics are associated with hospitalization risk among older adults with disability. Hospitalization risk reduction strategies may benefit from understanding and addressing caregiving circumstances.
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http://dx.doi.org/10.1111/jgs.16817DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7856284PMC
January 2021

Disability Prevention Program Improves Life-Space and Falls Efficacy: A Randomized Controlled Trial.

J Am Geriatr Soc 2021 01 20;69(1):85-90. Epub 2020 Sep 20.

Johns Hopkins University School of Nursing, Baltimore, Maryland, USA.

Objectives: To evaluate the effects of a home-based disability prevention program on life-space and falls efficacy among low-income older adults.

Design: Single-blind two-arm randomized controlled trial.

Setting: Participants' homes.

Participants: Participants were low-income cognitively intact older adults (≥65 years old) with restricted daily activities. Our analytic sample for life-space (n = 194) and falls efficacy (n = 233) varied as the life-space measure was introduced 4 months after the trial began.

Intervention: Up to six 1-hour home visits with an occupational therapist; up to four 1-hour home visits with a registered nurse; and up to $1,300 worth of home repairs, modifications, and assistive devices with a handyman, during a course of 4 months.

Measurements: Life-space was measured by the Homebound Mobility Assessment; falls efficacy was measured using the 10-item Tinetti Falls Efficacy Scale at baseline and 5 months.

Results: Participants were on average 75 years old, predominantly Black (86%) and female (85%-86%). Compared with participants in the control group, participants receiving the intervention were more likely to have improved versus decreased life-space in areas of bathroom (adjusted odds ratio (OR) = 3.95; 95% confidence interval (CI) = 1.20-12.97), front or back porch, patio, or deck (adjusted OR = 2.67; 95% CI = 1.05-6.79), stairs (adjusted OR = 4.09; 95% CI = 1.34-12.48), leaving the house for any reason other than for health care (adjusted OR = 2.40; 95% CI = 1.01-5.73), and overall life-space (adjusted OR = 2.15; 95% CI = 1.10-4.19). Participants who received the intervention also had an 11% improvement in falls efficacy in performing daily activities (exponentiated coefficient = 1.12; 95% CI = 1.04-1.21).

Conclusion: Life-space and falls efficacy were improved through a multicomponent, person-directed, home-based disability prevention intervention. Findings suggest that this intervention should be translated into different settings to promote independent aging.
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http://dx.doi.org/10.1111/jgs.16808DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8344360PMC
January 2021

Reply to Comment on: Advance Care Planning: Social Isolation Matters.

J Am Geriatr Soc 2020 11 4;68(11):2701-2702. Epub 2020 Sep 4.

Johns Hopkins University School of Medicine, Baltimore, Maryland.

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http://dx.doi.org/10.1111/jgs.16799DOI Listing
November 2020

Measurement Properties of the CAPACITY Instrument to Assess Perceived Communication With the Health Care Team Among Care Partners of Patients With Cognitive Impairment.

Med Care 2020 09;58(9):842-849

Departments of Neurology.

Background: The CAregiver Perceptions About CommunIcaTion with Clinical Team members (CAPACITY) instrument measures how care partners perceive themselves to be supported by the patient's health care team and their experiences communicating with the team.

Objectives: The objective of this study was to assess the measurement properties (ie, structural validity of the construct and internal consistency) of the CAPACITY instrument in care partners of patients with cognitive impairment, and to examine whether care partner health literacy and patient cognitive impairment are associated with a higher or lower CAPACITY score.

Research Design: This was a retrospective cohort study.

Subjects: A total of 1746 dyads of community-dwelling care partners and older adults in the United States with cognitive impairment who obtained an amyloid positron emission tomography scan.

Measures: The CAPACITY instrument comprises 12 items that can be combined as a total score or examined as subdomain scores about communication with the team and care partner capacity-assessment by the team. The 2 covariates of primary interest in the regression model are health literacy and level of cognitive impairment of the patient (Modified Telephone Interview Cognitive Status).

Results: Confirmatory factor analysis showed the CAPACITY items fit the expected 2-factor structure (communication and capacity). Higher cognitive functioning of patients and higher health literacy among care partners was associated with lower communication domain scores, lower capacity domain scores, and lower overall CAPACITY scores.

Conclusions: The strong psychometric validity of the CAPACITY measure indicates it could have utility in other family caregivers or care partner studies assessing the quality of interactions with clinical teams. Knowing that CAPACITY differs by care partner health literacy and patient impairment level may help health care teams employ tailored strategies to achieve high-quality care partner interactions.
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http://dx.doi.org/10.1097/MLR.0000000000001363DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7717666PMC
September 2020

Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors.

Biol Blood Marrow Transplant 2020 11 8;26(11):2121-2126. Epub 2020 Aug 8.

Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, Maryland; Bloomberg School of Public Health at Johns Hopkins, Baltimore, Maryland.

Increasingly, adolescent, young adult, and adult children are relied upon as donors for their parents undergoing blood and marrow stem cell transplant. How family functioning impacts donors' decision making and whether haploidentical donor children have unique supportive care needs is unknown. In this qualitative research study, we conducted 15 semistructured telephone interviews among individuals who underwent blood or marrow stem cell donation for their parent. Interviews explored donors' perspectives of the transplant experience across the trajectory from screening through early post-transplant follow-up and elicited unmet needs. Major themes included: (1) perception of choice, (2) act of giving back, (3) burdens of donation, (4) anticipated health benefit to parent, and (5) impact of donation on parent/child relationship. The majority of participants described high family functioning, but strain was also evident. Family functioning rarely was reported as affecting the decision to donate, with all donors expressing a sense of obligation. Participants were overwhelmingly satisfied with their decision and the ability to give back to their parent. Suggestions for the health care team to improve the donation experience focused on increased education about potential delays in screening, better description of possible complications for recipients, and provision of emotional support following donation.
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http://dx.doi.org/10.1016/j.bbmt.2020.08.005DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7609517PMC
November 2020

Designing a Primary Care-Based Deprescribing Intervention for Patients with Dementia and Multiple Chronic Conditions: a Qualitative Study.

J Gen Intern Med 2020 12 29;35(12):3556-3563. Epub 2020 Jul 29.

Institute for Health Research, Kaiser Permanente Colorado, Aurora, CO, USA.

Background: Patients with dementia and multiple chronic conditions (MCC) frequently experience polypharmacy, increasing their risk of adverse drug events.

Objectives: To elucidate patient, family, and physician perspectives on medication discontinuation and recommended language for deprescribing discussions in order to inform an intervention to increase awareness of deprescribing among individuals with dementia and MCC, family caregivers and primary care physicians. We also explored participant views on culturally competent approaches to deprescribing.

Design: Qualitative approach based on semi-structured interviews with patients, caregivers, and physicians.

Participants: Patients aged ≥ 65 years with claims-based diagnosis of dementia, ≥ 1 additional chronic condition, and ≥ 5 chronic medications were recruited from an integrated delivery system in Colorado and an academic medical center in Maryland. We included caregivers when present or if patients were unable to participate due to severe cognitive impairment. Physicians were recruited within the same systems and through snowball sampling, targeting areas with large African American and Hispanic populations.

Approach: We used constant comparison to identify and compare themes between patients, caregivers, and physicians.

Key Results: We conducted interviews with 17 patients, 16 caregivers, and 16 physicians. All groups said it was important to earn trust before deprescribing, frame deprescribing as routine and positive, align deprescribing with goals of dementia care, and respect caregivers' expertise. As in other areas of medicine, racial, ethnic, and language concordance was important to patients and caregivers from minority cultural backgrounds. Participants favored direct-to-patient educational materials, support from pharmacists and other team members, and close follow-up during deprescribing. Patients and caregivers favored language that explained deprescribing in terms of altered physiology with aging. Physicians desired communication tips addressing specific clinical situations.

Conclusions: Culturally sensitive communication within a trusted patient-physician relationship supplemented by pharmacists, and language tailored to specific clinical situations may support deprescribing in primary care for patients with dementia and MCC.
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http://dx.doi.org/10.1007/s11606-020-06063-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7728901PMC
December 2020
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