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CONTEXT: Patients receiving inpatient palliative care often face physical and psychological uncertainties during transitions out of the hospital. Family caregivers often take on responsibilities to ensure patient safety, quality of care, and extend palliative care principles, but often without support or training, potentially compromising their health and well-being. OBJECTIVES: This study tested an eight-week intervention using video visits between palliative care nurse interventionists and caregivers to assess changes in caregiver outcomes and patient quality of life. METHODS: This randomized controlled trial, conducted from 2018 to 2022, enrolled adult caregivers in rural or medically underserved areas in Minnesota, Wisconsin, and Iowa. Eligible caregivers included those caring for patients who received inpatient palliative care and transitioned out of the hospital. The intervention group received teaching, guidance, and counseling from a palliative care nurse before and for eight weeks after hospital discharge. The control group received monthly phone calls but no intervention. Caregiver outcomes included changes in depression, burden, and quality of life, and patient quality of life, as reported by the caregiver. RESULTS: Of those consented, 183 completed the intervention, and 184 completed the control arm; 158 participants had complete baseline and eight-week data. In unadjusted analyses, the intervention group and their care recipients showed statistically significant improvements in quality of life compared to the control group. Improvements persisted in adjusted analyses, and depression significantly improved. No differences in caregiver burden were observed. CONCLUSION: Addressing rural caregivers' needs during transitions in care can enhance caregiver outcomes and improve patient quality of life.
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Challenges to recruitment of family caregivers exist and are amplified when consent must occur in the context of chaotic healthcare circumstances, such as the transition from hospital to home. The onset of the COVID-19 pandemic during our randomized controlled trial provided an opportunity for a natural experiment exploring and examining different consent processes for caregiver recruitment. The purpose of this publication is to describe different recruitment processes (in-person versus virtual) and compare diversity in recruitment rates in the context of a care recipient's hospitalization. We found rates of family caregiver recruitment for in-person versus virtual were 28% and 23%, respectively (p = 0.01). Differences existed across groups with family caregivers recruited virtually being more likely to be younger, white, have greater than high school education, and not be a spouse or significant other to the care recipient, such as a child. Future work is still needed to identify the modality and timing of family caregiver recruitment to maximize rates and enhance the representativeness of the population for equitable impact.
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COVID-19 , Cuidadores , Seleção de Pacientes , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , COVID-19/epidemiologia , Alta do Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto , SARS-CoV-2RESUMO
BACKGROUND: Rural family caregivers (FCGs) in the United States often experience high economic costs. This randomized controlled trial compared a transitional palliative care intervention (TPC) to support FCGs of seriously ill care recipients (CRs) to an attention control condition. We evaluated the TPC's effect on healthcare use and out-of-pocket spending for both FCGs and CRs. METHODS: TPC FCGs received teaching, guidance, and counseling via video calls for 8 weeks following CR discharge from the hospital. After discharge, a research assistant called all FCGs once a month for up to 6 months or CR death to collect self-reported healthcare utilization (e.g., outpatient, emergency department, and hospital), out-of-pocket healthcare spending (e.g., deductibles and coinsurance), and health-related travel costs (e.g., transportation, lodging, food) for FCGs and CRs. Incidence rate ratios (IRRs) were estimated using negative binomial regressions. RESULTS: The study included 282 FCG-CR dyads across three U.S. states. Follow-up over the 6-month period was shortened by high CR mortality rates across both arms (29%), but was similar across arms. TPC reduced nights in the hospital for CR (IRR = 0.75; 95% confidence interval [CI] = 0.56-0. 99). Total out-of-pocket spending was not significantly different for TPC versus control. Across both groups, mean out-of-pocket spending for dyads was $1401.85, with healthcare payments contributing $1048.58 and transportation expenses contributing $136.79. TPC dyads reported lower lodging costs (IRR = 0.71; 95% CI = 0.56-0.89). CONCLUSIONS: This study contributes to evidence that palliative care interventions reduce the number of nights in the hospital for seriously ill patients. Yet, overall rural FCGs and seriously ill CRs experience substantial out-of-pocket economic costs in the 6 months following hospitalization. Transitional care intervention design should consider impacts on patient and caregiver spending. CLINICALTRIALS: gov # is NCT03339271.
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OBJECTIVES: Compared to urban family caregivers (FCG), rural FCG experience greater burdens accessing coordinated care for their loved ones during and after hospitalization. The impact of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being evaluated in a randomized control trial. This study evaluates resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms. METHODS: Rural caregivers of hospitalized patients were randomized into an 8-week intervention consisting of video visits conducted by a registered nurse certified in palliative care, supplemented with phone calls and texts (n = 215), or attentional control. Labor costs were estimated for a registered nurse and compared to scenario analyses using a nurse practitioner or social worker wages. Medicare reimbursement scenarios included Transitional Care Management (TCM) and Chronic Care Management (CCM) CPT codes. RESULTS: In the base case, TPC cost was $395 per FCG facilitated by a registered nurse, compared to $337 and $585 if facilitated by a social worker or nurse practitioner, respectively. Mean Medicare reimbursement in the TCM-only scenario was $322 and $260 for high or moderate complexity patients, respectively. Reimbursement in the CCM only scenario was $348 and $274 for complex and non-complex patients, respectively. Reimbursement in the TCM+CCM scenario was $496 and $397, for high/complex and moderate/non-complex patients, respectively. CONCLUSION: TPC is a feasible, low cost and sustainable strategy to enhance FCG support in rural areas. Potential reimbursement mechanisms are available to offset the costs to the health system for providing transitional palliative care to caregivers of patients recently hospitalized.
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Cuidados Paliativos , Cuidado Transicional , Idoso , Humanos , Estados Unidos , Cuidadores , Medicare , Assistência de Longa DuraçãoRESUMO
OBJECTIVE: People living with dementia often have high care needs at the end-of-life. We compared care delivery in the last year of life for people living with dementia in the community (home or assisted living facilities [ALFs]) versus those in skilled nursing facilities (SNFs). METHODS: A retrospective study was performed of older adults with a dementia diagnosis who died in the community or SNFs from 2013 through 2018. Primary outcomes were numbers of hospitalizations and emergency department visits in the last year of life. Secondary outcomes were completed advance care plans, hospice enrollment, time in hospice, practitioner visits, and intensive care unit admissions. RESULTS: Of 1203 older adults with dementia, 622 (51.7%) lived at home/ALFs; 581 (48.3%) lived in SNFs. At least 1 hospitalization was recorded for 70.7% living at home/ALFs versus 50.8% in SNFs (P < .001), similar to percentages of emergency department visits (80.2% vs 58.0% of the home/ALF and SNF groups, P < .001). SNF residents had more practitioner visits than home/ALF residents: median (IQR), 9.0 (6.0-12.0) versus 5.0 (3.0-9.0; P < .001). No advance care plan was documented for 12.2% (n = 76) of the home/ALF group versus 4.6% (n = 27) of the SNF group (P < .001). Nearly 57% of SNF residents were enrolled in hospice versus 68.3% at home/ALFs (P < .001). The median time in hospice was 26.5 days in SNFs versus 30.0 days at home/ALFs (P = .67). CONCLUSIONS: Older adults with dementia frequently receive acute care in their last year of life. Hospice care was more common for home/ALF residents. Time in hospice was short.
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Demência , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Estados Unidos , Idoso , Instituições de Cuidados Especializados de Enfermagem , Estudos Retrospectivos , Demência/terapiaRESUMO
Managing the complex care needs of seriously ill patients transitioning from hospital to home can have detrimental effects on family caregivers (FCG). Multi-component interventions tailored to FCG needs are most effective at reducing caregiver burden, distress, and depression. However, gaps exist in determining best methods to assess, document, and analyze intervention components for FCGs. Common methods used to capture patient data during transitions in care may not be appropriate or allowed for FCG needs. As such, we present a methodological approach for electronically capturing, reporting, and analyzing multiple intervention components. This approach uses a standardized terminology and pathway for tailoring intervention components in real time while evaluating intervention effects across time. We use examples from a randomized controlled trial to illustrate the benefits of the current approach for analyzing the effectiveness of multi-component interventions in the context of caregiving research.
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Cuidadores , Qualidade de Vida , Humanos , Depressão/terapia , Hospitais , FamíliaRESUMO
In this Perspective, we contend bold action is needed to improve transitions from hospitals to home for aging patients and their family caregivers living in rural and underserved areas. The Caregiver Advise, Record, Enable (CARE) Act, passed in over 40 US states, is intended to provide family caregivers of hospitalized patients with the knowledge and skills needed for safe and efficient transitions. It has broken important ground for family caregivers who assist with transitions in patient care. It may fall short, however, in addressing the unique needs of family caregivers living in rural and underserved areas. We contend that to realize the intended safety, cost, and care quality benefits of the CARE Act, especially for those living in rural and underserved areas, states need to expand the Act's scope. We provide three recommendations: 1) modify hospital information systems to support the care provided by family caregivers; 2) require assessments of family caregivers that reflect the challenges of family caregiving in rural and underserved areas; and 3) identify local resources to improve discharge planning. We describe the rationale for each recommendation and the potential ways that an expanded CARE Act could reduce the risks associated with transitions in care for aging patients.
Key Points:1. Recent state laws aim to support family caregivers of hospitalized patients.2. These laws do not account for the unique needs of rural caregivers.3. Expanding laws to address rural caregiver needs may improve patient outcomes.
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As a new era of healthcare advocates a more valuable and intelligent approach to care management and delivery based on values and outcomes, shifts toward risk management to boost performance should be considered that encompass the capitalization of health assets or health strengths. To make full use of individuals' or populations' health assets, data capture and representation are needed. This paper uses a strengths-oriented case study mapped to an inter-disciplinary standardized terminology, the Omaha System, to illustrate and compare the conventional problem-based approach to care management with the strengths-oriented approach to care that demonstrates whole-person data capture of an individual's health and health assets leveraged to promote health values and performance. The Omaha system provides a standardized framework to organize the concepts of all of health from a whole-person perspective for documentation to enable data analysis, interoperability, and health information exchange.
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Promoção da Saúde , HumanosAssuntos
COVID-19/mortalidade , COVID-19/psicologia , Cuidadores/psicologia , Gerentes de Casos/educação , Família/psicologia , Pesar , Pessoal de Saúde/educação , Adulto , Atitude do Pessoal de Saúde , Atitude Frente a Morte , Gerentes de Casos/psicologia , Currículo , Educação Continuada em Enfermagem , Feminino , Pessoal de Saúde/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , SARS-CoV-2 , Assistência Terminal/psicologiaRESUMO
BACKGROUND: Transitioning care from hospital to home is associated with risks of adverse events and poor continuity of care. These transitions are even more challenging when new approaches to care, such as palliative care, are introduced before discharge. Family caregivers (FCGs) are expected to navigate these transitions while also managing care. In addition to extensive caregiving responsibilities, FCGs often have their own health needs that can inhibit their ability to provide care. Those living in rural areas have even fewer resources to meet their self-care and caregiving needs. The purpose of this study is to test the efficacy and cost-effectiveness of an intervention to improve FCGs' health and well-being. The intervention uses video visits to teach, guide, and counsel FCGs in rural areas during hospital-to-home transitions. The intervention is based on evidence of transitional and palliative care principles, which are individualized to improve continuity of care, provide caregiver support, enhance knowledge and skills, and attend to caregivers' health needs. It aims to test whether usual care practices are similar to this technology-enhanced intervention in (1) caregiving skills (e.g., caregiving preparedness, communication with clinicians, and satisfaction with care), (2) FCG health outcomes (e.g., quality of life, burden, coping skills, depression), and (3) cost. We describe the rationale for targeting rural caregivers, the methods for the study and intervention, and the analysis plan to test the intervention's effect. METHODS: The study uses a randomized controlled trial design, with FCGs assigned to the control condition or the caregiver intervention by computer-generated lists. The intervention period continues for 8 weeks after care recipients are discharged from the hospital. Data are collected at baseline, 2 weeks, 8 weeks, and 6 months. Time and monetary costs from a societal perspective are captured monthly. DISCUSSION: This study addresses 2 independent yet interrelated health care foci-transitional care and palliative care-by testing an intervention to extend palliative care practice and improve transition management for caregivers of seriously ill patients in rural areas. The comprehensive cost assessment will quantify the commitment and financial burden of FCGs. TRIAL REGISTRATION: ClinicalTrials.gov NCT03339271 . Registered on 13 November 2017. Protocol version: 11.
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Cuidadores , Cuidado Transicional , Adulto , Atenção , Humanos , Área Carente de Assistência Médica , Cuidados Paliativos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , TecnologiaRESUMO
BACKGROUND: Patients with multiple chronic conditions represent a growing segment for healthcare. The Chronic Care Model (CCM) supports leveraging community programs to support patients and their caregivers overwhelmed by their treatment plans, but this component has lagged behind the adoption of other model elements. Community Care Teams (CCTs) leverage partnerships between healthcare delivery systems and existing community programs to address this deficiency. There remains a gap in moving CCTs from pilot phase to sustainable full-scale programs. Therefore, the purpose of this study was to identify the cognitive and structural needs of clinicians, social workers, and nurse care coordinators to effectively refer appropriate patients to the CCT and the value these stakeholders derived from referring to and receiving feedback from the CCT. We then sought to translate this knowledge into an implementation toolkit to bridge implementation gaps. METHODS: Our research process was guided by the Assess, Innovate, Develop, Engage, and Devolve (AIDED) implementation science framework. During the Assess process we conducted chart reviews, interviews, and observations and in Innovate and Develop phases, we worked with stakeholders to develop an implementation toolkit. The Engage and Devolve phases disseminate the toolkit through social networks of clinical champions and are ongoing. RESULTS: We completed 14 chart reviews, 11 interviews, and 2 observations. From these, facilitators and barriers to CCT referrals and patient re-integration into primary care were identified. These insights informed the development of a toolkit with seven components to address implementation gaps identified by the researchers and stakeholders. CONCLUSION: We identified implementation gaps to sustaining the CCT program, a community-healthcare partnership, and used this information to build an implementation toolkit. We established liaisons with clinical champions to diffuse this information. The AIDED Model, not previously used in high-income countries' primary care settings, proved adaptable and useful.
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Serviços de Saúde Comunitária/organização & administração , Atenção à Saúde/organização & administração , Múltiplas Afecções Crônicas/terapia , Idoso , Feminino , Humanos , Masculino , Avaliação das Necessidades , Equipe de Assistência ao Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Avaliação de Programas e Projetos de SaúdeRESUMO
PURPOSE/OBJECTIVES: The purpose of this study was to describe lessons learned during the development and implementation of a community care team (CCT) and the applicability of this model in movement toward cross-sector team-based care coordination. PRIMARY PRACTICE SETTING: Primary care. FINDINGS/CONCLUSIONS: Cross-sector CCTs composed of primary care and community service providers are a care coordination approach that attends to the individual's social determinants of health, enhances the individual's capacity to manage treatment and self-care demands of multiple chronic health conditions, improves the care experience, and impacts well-being. A collaborative CCT decreased the use of acute care services and the costs of care. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: As reported in this study, use of interprofessional collaborative health care teams in planning care and services for individuals is a standard of practice for case management. Cross-sector partnerships provide the opportunity to maximize the contributions of health care and community service providers that address both chronic health conditions and social determinants of health, minimize fragmentation and costs of care, and promote collaborative care coordination. Community care teams offer sophisticated care coordination not otherwise available to medically complex high-need individuals who require assistance in navigating the medical and financial systems that exist in health care today.
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Administração de Caso/organização & administração , Serviços de Saúde Comunitária/organização & administração , Colaboração Intersetorial , Equipe de Assistência ao Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Comportamento Cooperativo , Educação Médica Continuada , Humanos , Estados UnidosRESUMO
PURPOSE OF STUDY: The Early Screen for Discharge Planning (ESDP) is a decision support tool developed in an urban academic medical center. High ESDP scores identify patients with nonroutine discharge plans who would benefit from early discharge planning intervention. We aimed to determine the predictive performance of the ESDP in a different practice setting. PRIMARY PRACTICE SETTING: Rural regional community hospital. METHODOLOGY AND SAMPLE: We designed a comparative, descriptive survey study and enrolled a convenience sample of 222 patients (identified at admission) who provided informed consent. Sample characteristics and ESDP scores were collected during enrollment. The Problems After Discharge Questionnaire, EuroQoL-5Dimensions quality-of-life measure, length of stay, and use of post-acute care services were recorded after discharge. We compared outcomes between patients with low and high ESDP scores. RESULTS: More than half of the sample (51.8%) had a high ESDP score. Patients with high ESDP scores reported more problems after discharge (p = .02), reported lower quality of life (p < .001), had longer length of stays (p = .04), and used post-acute care services (p = .006) more than patients with low ESDP scores. The difference in the average percentage of unmet needs was not statistically significant (p = .12), but patients with high ESDP scores reported more unmet needs than patients with low ESDP scores. IMPLICATIONS FOR CASE MANAGEMENT PRACTICE: The value of systematically proactive approaches to discharge planning is increasingly recognized, but establishing the performance capacity of support tools is critical for optimizing benefit. These study findings support use of the ESDP in regional community hospitals, making it a useful, open-source decision support tool for various health care delivery systems.
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To be effective, nurse care coordination must be targeted at individuals who will use the service. The purpose of this study was to identify variables that predicted use of care coordination by primary care patients. Data on the potential predictor variables were obtained from patient interviews, the electronic health record, and an administrative database of 178 adults eligible for care coordination. Use of care coordination was obtained from an administrative database. A multivariable logistic regression model was developed using a bootstrap sampling approach. Variables predicting use of care coordination were dependence in both activities of daily living (ADL) and instrumental activities of daily living (IADL; odds ratio [OR] = 5.30, p = .002), independent for ADL but dependent for IADL (OR = 2.68, p = .01), and number of prescription medications (OR = 1.12, p = .002). Consideration of these variables may improve identification of patients to target for care coordination.
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Doença Crônica/enfermagem , Continuidade da Assistência ao Paciente , Papel do Profissional de Enfermagem , Atenção Primária à Saúde/métodos , Atividades Cotidianas , Idoso , Registros Eletrônicos de Saúde/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
BACKGROUND AND PURPOSE: It is critical to accurately represent strengths interventions to improve data and enable intervention effectiveness research from a strengths perspective. However, it is challenging to understand strengths interventions from the multiple perspectives of computerized knowledge representation, evidence-based practice guidelines, and practice-based evidence narratives. Intervention phrases abstracted from nurse care coordinator practice narratives described strengths interventions with community-dwelling elders. This project aims were to (a) compare nurse care coordinator use of evidence-based interventions as described in the two guidelines (what to do and how to do it), (b) analyze nurse care coordinator intervention tailoring (individualized care), and (c) evaluate the usefulness of the Omaha System for comparison of narrative phrases to evidence-based guidelines. METHODS: Phrases from expert nurse care coordinators were mapped to the Omaha System for comparison with the guidelines interventions and were analyzed using descriptive statistics. Venn diagrams were used to visually depict intervention overlap between the guidelines and the phrases. RESULTS: Empirical evaluation of 66 intervention phrases mapped to 14 problems using 3 category terms and 19 target terms showed alignment between guidelines and the phrases, with the most overlap across two guidelines and the phrases in categories, and the most diversity in care descriptions. CONCLUSION: These findings demonstrate the value in having both standardized guidelines and expert clinicians who see the whole person and can synthesize and apply guidelines in tailored ways. There is potential to create a feedback loop between practice-based evidence and evidence-based practice by expanding this approach to use of practice-generated Omaha System data as practice-based evidence. Further research is needed to refine and advance the use of these methods with additional practices and guidelines.
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Medicina Baseada em Evidências/normas , Entrevistas como Assunto , Modelos Estatísticos , Cuidados de Enfermagem , Pesquisa em Enfermagem/estatística & dados numéricos , HumanosRESUMO
PURPOSE: Although discharge planning (DP) is recognized as a critical component of hospital care, national initiatives have focused on older adults, with limited focus on pediatric patients. We aimed to describe patient problems and targeted interventions as documented by social workers or DP nurses providing specialized DP services in a children's hospital. METHODS: Text from 67 clinical notes for 28 patients was mapped to a standardized terminology (Omaha System). Data were deductively analyzed. RESULTS: A total of 517 phrases were mapped. Eleven of the 42 Omaha System problems were identified. The most frequent problem was health care supervision (297/517; 57.4%). Three Omaha System intervention categories were used (teaching, guidance, and counseling; case management; and surveillance). Intervention targets are varied by role. CONCLUSION: The findings provide a rich description of the nature of DP for complex pediatric patients and increase our understanding of the work of DP staff and the influence of the DP practice model.
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Hospitais Pediátricos/organização & administração , Alta do Paciente , Criança , HumanosRESUMO
This article reports on the development and evaluation of a mechanism designed for real-time tracking of discharge delays by bedside clinicians and the reporting of delays in a manner amenable to action. During the implementation phase, delay time totaled 23.6 days for 114 patients affected by a delay. More than one-half of delays (61.4%) occurred for patients whose discharge disposition was home to self-care.
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Alta do Paciente/normas , Melhoria de Qualidade , Comunicação , Serviços de Assistência Domiciliar , Humanos , Alta do Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde , Fatores de TempoRESUMO
There has been a proliferation of initiatives to improve discharge processes and outcomes for the transition from hospital to home and community-based care. Operationalization of these processes has varied widely as hospitals have customized discharge care into innovative roles and functions. This article presents a model for conceptualizing the components of hospital discharge preparation to ensure attention to the full range of processes needed for a comprehensive strategy for hospital discharge.
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Cuidadores/educação , Administração de Caso/organização & administração , Continuidade da Assistência ao Paciente/organização & administração , Reconciliação de Medicamentos/normas , Alta do Paciente/normas , Educação de Pacientes como Assunto/organização & administração , Administração de Caso/normas , Continuidade da Assistência ao Paciente/normas , Humanos , Reconciliação de Medicamentos/métodos , Modelos Organizacionais , Educação de Pacientes como Assunto/métodos , Educação de Pacientes como Assunto/normasRESUMO
OBJECTIVES: To compare patients who accepted ("acceptors") post acute care services (PAC) with those who were offered services and refused ("refusers") in terms of their sociodemographic and clinical characteristics, quality of life, health-related problems, and unmet needs; and to examine the association between refusing PAC services and the risk for 30- and 60-day readmission. STUDY DESIGN: Secondary data analysis from a cross-sectional study. METHODS: Bivariate analysis and logistic regressions were used to examine the association between refusing PAC services and 30- and 60-day readmission. RESULTS: A convenience sample of 495 PAC-referred patients 55 years and older discharged from 2 large academic medical centers in the northeastern United States completed the study questionnaires, with a resulting 28% (n = 139) that refused PAC services. Refusers were significantly younger (average age 68 years vs 73 years; P < .001), as well as more likely to be married (62% vs 46%; P < .001), privately insured (35% vs 18%; P < .001), and with lower risk of mortality/severity of illness. Refusers also had shorter hospital stays (4.8 days vs 7.5 days; P < .001); higher quality of life after discharge (0.83 vs 0.73; P < .001); and fewer unmet needs after discharge. However, refusers had higher 30-day (21% vs 16%; P = .17) and 60-day (31% vs 25%; P = .18) readmission rates; with logistic regression showing about twice-higher odds of 30-day (OR [odds ratio], 2.13; 95% CI, 1.11-3.02; P = .01) and 60-day (OR, 1.8; 95% CI, 1.11-3.02; P = .02) readmission. CONCLUSIONS: PAC refusers are younger, better educated, and healthier, but they have twice-higher odds of 30- and 60-day readmissions, compared with PAC acceptors. Further investigation into reasons for PAC refusal is critical to foster enhanced patient communication regarding PAC services, improve rates of service acceptance, and ultimately decrease readmissions.