Browsing by Author "Hickman, Susan"
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Item Accepting a Terminal Cancer Prognosis: Associations with Patient and Caregiver Quality-of-Life Outcomes and Treatment Preferences(2024-05) Krueger, Ellen; Mosher, Catherine E.; Rand, Kevin L.; Wu, Wei; Hickman, SusanPatients who are aware of their terminal cancer prognosis are more likely to receive end-of-life care consistent with their values. However, prognostic awareness has shown mixed associations with quality of life (QoL) outcomes. Based on theories of acceptance (i.e., Erikson’s stages of life development, Kubler-Ross’s stage model of grief, coping theories) and the Ottawa Decision Support Framework, acceptance of cancer may moderate relationships between prognostic awareness and QoL outcomes and end-of-life treatment preferences. Dyadic coping theories, such as the Systemic Transactional Model and the Dyadic Cancer Outcomes Framework, suggest that patients’ degree of prognostic awareness and acceptance of their illness may also impact their family caregivers’ QoL and end-of-life treatment preferences for the patient. The aim of the present study was to examine the potential moderating role of patient acceptance of cancer in the relationships between patient prognostic awareness and both patient and caregiver QoL and end-of-life treatment preferences. This study was a secondary analysis of cross-sectional data from advanced cancer patients (n = 243) and their caregivers (n = 87) enrolled in the multi-institutional Coping with Cancer-II study. Patient outcomes of physical, psychological, and existential QoL were examined in a moderation path analysis. Caregiver physical and psychological QoL were examined in separate moderation regressions. Patient and caregiver end-of-life treatment preferences were examined in multiple logistic regression moderation models. Results did not support my hypothesis, as patient illness acceptance did not moderate the relationships between patient prognostic awareness and patient and caregiver QoL outcomes and end-of-life treatment preferences. However, there were significant main effects of patient illness acceptance on their own physical, psychological, and existential QoL as well as caregiver psychological QoL. There were also significant main effects of patient prognostic awareness on their own physical QoL and both their own and their caregivers’ end-of-life treatment preferences. Findings suggest that increasing patient’s prognostic awareness and illness acceptance may help improve values-consistent end-of-life care and QoL outcomes in advanced cancer patient-caregiver dyads. Findings support timely conversations to promote advanced cancer patients’ prognostic awareness as well as further research examining the impact of acceptance-based interventions in advanced cancer.Item Author Response to Reader's Comments to Fitzgerald Jones et al., Top Ten Tips Palliative Care Clinicians Should Know About Delivering Antiracist Care to Black Americans (DOI: 10.1089/jpm.2021.0502)(Mary Ann Liebert, 2022) Jones, Katie Fitzgerald; Laury, Esther; Sanders, Justin; Starr, Lauren T.; Rosa, William E.; Booker, Staja Q.; Wachterman, Melissa; Jones, Christopher A.; Hickman, Susan; Merlin, Jessica S.; Meghani, Salimah H.; School of NursingItem Caught in a Loop with Advance Care Planning and Advance Directives: How to Move Forward?(Mary Ann Liebert, Inc., 2022-03) Periyakoil, Vyjeyanthi S.; von Gunten, Charles F.; Arnold, Robert; Hickman, Susan; Morrison, Sean; Sudore, Rebecca; Medicine, School of MedicineCompletion of an advance care planning (ACP) process and/or an advance directive should result in patients receiving the care they desire at the end of life. However, three decades of research have shown that is just not the case. ACP has been a front runner in developing the science within palliative care. Some positive outcomes such as lowering levels of surrogate grief may be associated with ACP. Yet, it does not appear that further ACP research will ensure that seriously ill patients will get goal-concordant care. An unfortunate consequence of palliative care research and advocacy so far is the misguided notion of many hospital systems trying to solve their palliative care problems by only implementing an ACP initiative. At best, ACP is but one tool in the collective palliative care toolbox. New tools are needed. Given that we have finite resources, future research should focus more on tools to improve symptom management, better models of care, and systems that will ensure goal-concordant care that meet the needs of the population that the health care system is designed to meet.Item Characterizing Avoidability of Nursing Home Residents: Comparing the Claims-Based Algorithm and Nurse Assessment(Oxford University Press, 2022-12-20) Blackburn, Justin; Carnahan, Jennifer; Hickman, Susan; Sachs, Greg; Unroe, Kathleen; Health Policy and Management, School of Public HealthThe elevated risks associated with transferring nursing home residents to the hospital are problematic, but identifying which transfers can be avoided is complex. Using billing claims to determine “avoidability” based on hospital discharge diagnostic codes ignores resource constraints, clinical comorbidities, and asymmetrical information between nursing home staff making the transfer decision at the onset of clinical changes and hospital billing departments following treatment and diagnostic procedures. Conversely, relying on clinical staff assessments at the time of transfer may be an impractical and resource-intensive strategy to drive payment reform and improve quality. Using Medicare claims data representing emergency department and hospitalization transfers from 38 nursing facilities in Indiana from 2016-2020, we compared classification of transfers using a claims-based algorithm and trained nurse assessments of avoidability. Among 960 transfers, nurses judged 48.4% were potentially avoidable while 30.8% were classified as such using claims data. Of concordant assessments, 15.3% were avoidable and 36.0% as not avoidable. Of discordant assessments, 33.1% were judged avoidable by nurses only and 15.5% via the claims-based algorithm (Kappa=0.0153). Discordance was most frequent among transfers with heart failure (64%, n=42), psychosis (74.5%, n=34), acute renal disease (50%, n=28); and lowest among urinary tract infections (31.3%, n=64). No resident demographic or clinical characteristics were associated with discordance (age, race, sex, cognitive function scale, activities of daily living, or CHESS scale). High discordance in determining avoidability may be driven by presentation of symptoms or other condition-specific factors. Policies to reduce avoidable hospitalizations must not rely on overly simplistic approaches for identification.Item Comparing Engagement in Advance Care Planning Between Stages of Heart Failure(2019-08) Catalano, Lori A.; Hickman, Susan; Von Ah, Diane; Torke, Alexia; Weaver, MichaelHeart failure is a terminal disease with an unpredictable trajectory. Family members of patients with heart failure are often called upon to make decisions about treatment and end of life care, sometimes with little guidance as to the patients’ wishes. Advance care planning (ACP) is an ongoing process by which patients make decisions about their future healthcare. Only about one-third of patients with heart failure have participated in ACP, which is a similar percentage to the overall population. Despite increased focus on ACP and interventions to improve it, the rates of ACP in the population remain relatively unchanged. There is a need to develop interventions that are targeted based on patient engagement in the process rather than the existing broad-based interventions. The purpose of this dissertation study is to examine the relationship between the American Heart Association stage of heart failure and readiness to engage in advance care planning. The study consisted of mailed surveys that consisted of demographic questionnaires and the Advance Care Planning Engagement Survey. Engagement was analyzed in relation to heart failure stage, heart failure class, comorbidities, perception of health status, recent hospitalizations, making healthcare decisions for others, and demographic variables. The results demonstrated that although there was no significant association between heart failure stage or class and engagement in advance care planning, there were significant associations between medical comorbidities and advance care planning engagement. Other significantly associated participant characteristics included age, gender, education, ethnicity, and income. Findings suggest that people with multiple comorbid conditions will be more likely to be ready to engage in ACP than those with fewer health conditions. The results from this study will contribute to the development of strategies to improve advance care planning that are targeted based on engagement level.Item Conditions Associated with Successful Implementation of an Advance Care Planning Intervention in Nursing Homes(Oxford University Press, 2023-12-21) Hickman, Susan; Miech, Edward; Stump, Timothy; Mack, Laramie; Tu, Wanzhu; Unroe, Kathleen; School of NursingImplementing evidence-based interventions in nursing homes is challenging in part because clinical trials requiring a controlled experimental environment are difficult to sustain. In contrast, pragmatic clinical trials develop and evaluate evidence-based interventions in the “real world” with the goal of streamlining implementation after study completion. However, there is minimal information available identifying conditions associated with successful implementation of pragmatic interventions in the nursing home setting. The “Aligning Patient Preferences - a Role Offering Alzheimer’s patients, Caregivers, and Healthcare Providers Education and Support” (APPROACHES) project is a pragmatic trial designed to test and evaluate a staff-led advance care planning (ACP) intervention for residents with ADRD in 131 nursing homes (64 intervention, 67 control) between September 1, 2021 and August 31, 2022. ACP Specialists received training on ACP facilitation and implementation of the ACP program in the facility. Twenty of 65 (31%) sites successfully implemented the APPROACHES intervention and had > 75% of residents with documented ACP conversations. Using configurational analysis, we found two solutions directly linked with successful pragmatic implementation: (1) no executive director turnover during the observation period combined with site participation in monthly intervention support calls with ACP staff at other facilities; and (2) higher rates of hospitalization (3.96 – 7.2 per 1000 resident days) combined with a low number of certified beds. Findings suggest that leadership stability and engagement with peers were essential drivers of successful implementation. Having greater improvement opportunities as well as a more manageable caseload for the ACP Specialist may also help explain successful implementation.Item Daily Engagement in Meaningful Activity for Home Care Patients with Subjective Cognitive Decline and Caregivers(Oxford University Press, 2023-12-21) Lu, Yvonne; Ellis, Jennifer; Perkins, Susan; Hickman, Susan; Chang, Pei-Shiun; Haase, Joan; Otis, Laurie; Winton, Rebecca; School of NursingPatients with subject cognitive decline (SCD) often lose sense of control, disengage from meaningful activities, and have less confidence in their ability to manage daily challenges. The objectives of pragmatic pilot phase study were to evaluate the feasibility and benefits of a Daily Engagement in Meaningful Activity Professional (DEMA-Pro) for patients with SCD; and explore nurses’ experience of DEMA-Pro implementation. Forty-nine patients at four home healthcare sites received six weekly DEMA-Pro telephone sessions. The Outcome and Assessment Information Set-D were collected at starting date (pre-intervention) and discharge date (post-intervention). Quantitative surveys and qualitative focus group methods were used to explore the DEMA-Pro nurses (n = 3) experiences. The consent rate was 67.1%, the completed intervention rate 36.7%, and the partial completed intervention rate 25.5%. For 36 subjects with discharge data available, both IADLs and self-care scores improved (d = 3.11 and d = 2.66, respectively). Specifically, those that completed all DEMA-Pro sessions (n=14), partial completers (n=12), and non-completers (n=10), had improved scores on IADLs (d = 4.0, 4.2, and 2.5, respectively) and Self-Care (d = 3.7, 3.1 and 2.0, respectively). Completers had greater improvement than non-Completers for both outcomes and greater improvement on IADLs than partial completers (all p-values < 0.03). Nurses reported high satisfaction with their training, and high confidence that the implementation of the intervention met patient and caregiver needs. The DEMA-Pro has shown benefits and feasibility that will need further testing in a large pragmatic trial in homecare settings.Item Group-Based Trajectory Modeling of Nursing Home Resident Pain Scores(Oxford University Press, 2022-12-20) Cole, Connie; Hickman, Susan; Blackburn, Justin; Carpenter, Janet; Chen, Chen; School of NursingUp to 80% of older adults living in a nursing home (NH) experience pain and up to 32% have substantial pain. Pain in NH residents is associated with poor quality of life, higher likelihood of depression, and decreased life satisfaction. Pain in NH residents has often been studied using a cross-sectional approach, which fails to consider the temporal nature of pain. Therefore, the purpose of this analysis was to identify and characterize clinically meaningful, dynamic pain trajectories in NH residents using data from the Minimum Data Set. A retrospective longitudinal analysis was conducted using group-based trajectory modeling with pain scores from admission to discharge or a maximum of 28 assessments. We identified four distinct trajectories: 1) consistent pain absence (48.9%), 2) decreasing-increasing pain presence (21.8%), 3) increasing-decreasing pain presence (15.3%), and 4) persistent pain presence (14.0%). Relative to residents’ in the consistent pain absence trajectory, the likelihood of being in the persistent pain presence trajectory was more than twice as high for those living in a rural versus (AOR 2.7, CI 2.2-3.4, p<.001), over 4 times higher for those with hip fracture (AOR 4.3 CI 2.6-7.0, p<.001), nearly 3 times higher for those with a fracture other than hip (AOR 2.9, CI 2.0-4.1, p<.001), and almost twice as high for those with contracture (AOR 1.7, CI 1.4-2.1, p<.001). Using residents’ characteristics associated with persistent pain such as hip fracture or contracture may improve care planning based on early identification or risk stratification and can improve mitigation of persistent pain.Item Hospital Transfers: Perspectives of Nursing Home Residents and Nurses(Oxford University Press, 2022) Ahmetovic, Alma; Drucker, Claire; Huber, Lesa; Unroe, Kathleen; Hickman, Susan; School of NursingBetween 1 million and 2.2 million nursing home residents are transferred to a hospital emergency department each year. These transfers are costly, have negative health outcomes, and can increase the morbidity and mortality of residents. The purpose of this study was to examine the transfer process between the nursing home and the hospital from the perspective of nursing home residents and nurses, focusing on how decisions were made to transfer residents. Using a qualitative descriptive method, 22 participants were recruited from four nursing homes located in rural Indiana. Purposive sampling, semi-structured interviews, and conventional content analysis were used to collect and analyze narratives obtained from residents and nurses about their experiences with a recent transfer. The participants described four aspects of the transfer process: transfer decisions, transport experiences, hospital stays, and returns to the nursing home. The most common reason for transfers was an acute exacerbation of a chronic condition, and the decision to transfer was often made by a nurse. Most residents found aspects of the transfer aversive or upsetting. The return to the nursing home was typically welcomed but often challenging due to problems with mobility, medications, and cognitive changes. Participants also provided several recommendations for avoiding potentially preventable transfers including adding “in-house” diagnostic testing and treatment equipment, improving staff competencies in managing acute exacerbations, increasing staffing, improving communication among staff, and increasing staff familiarity with resident histories and preferences. The findings have several clinical and policy implications for preventing or decreasing the negative effects of hospital transfers.Item Identification, Quantification, and Characterization of Nursing Home Resident Pain Trajectories(2022-05) Cole, Connie Sue; Hickman, Susan; Blackburn, Justin; Carpenter, Janet S.; Chen, Chen X.Pain prevalence in nursing home (NH) residents is high. Studies report up to 85.0% of NH residents experience pain and up to 58.0% experience persistent pain. Pain in NH residents can lead to decreased happiness, quality of life, and life satisfaction. Traditionally, pain has been studied in relation to specific comorbid conditions or pain subtypes (nociceptive, neuropathic) with little consideration for the dynamic (temporal) nature of pain. Current pain subtypes are clinically linked to recommended pain treatments and provide insight into underlying mechanisms. However, current pain subtypes are limited by their focus on pain origin, do not include severity or duration of the pain experience, and do not illustrate how the course or trajectory of pain changes over time. Understanding the trajectory of pain experience can provide opportunities to alter the course of pain experience, improve residents’ quality of life and prevent adverse outcomes. This dissertation provides the first evidence of four distinct pain trajectories among NH residents including persistent pain which was associated with several resident characteristics and clinically relevant diagnosis. Using residents’ characteristics associated with persistent pain, such as a history of fracture or contracture, may improve care planning based on early identification or risk stratification and can improve mitigation of persistent pain. To identify and characterize pain trajectories in NH residents, the following activities were completed (1) systematic review of the literature related to prevalence of pain and associated factors in NH residents, (2) cross-sectional analysis of secondary data to examine prevalence of pain, persistent pain, and factors associated with pain in NH residents, and (3) a longitudinal retrospective analysis of secondary data using group-based trajectory modeling to identify, quantify, and characterize NH pain trajectories. The findings from this study highlight the prevalence and complexity of pain in NH residents.