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Developing Predictive Models to Determine Patients in End-of-Life Care in Administrative Datasets.

ABSTRACT: INTRODUCTION:In observational studies with mortality endpoints, one needs to consider how to account for subjects whose interventions appear to be part of 'end-of-life' care. OBJECTIVE:The objective of this study was to develop a diagnostic predictive model to identify those in end-of-life care at the time of a drug exposure. METHODS:We used data from four administrative claims datasets from 2000 to 2017. The index date was the date of the first prescription for the last new drug subjects received during their observation period. The outcome of end-of-life care was determined by the presence of one or more codes indicating terminal or hospice care. Models were developed using regularized logistic regression. Internal validation was through examination of the area under the receiver operating characteristic curve (AUC) and through model calibration in a 25% subset of the data held back from model training. External validation was through examination of the AUC after applying the model learned on one dataset to the three other datasets. RESULTS:The models showed excellent performance characteristics. Internal validation resulted in AUCs ranging from 0.918 (95% confidence interval [CI] 0.905-0.930) to 0.983 (95% CI 0.978-0.987) for the four different datasets. Calibration results were also very good, with slopes near unity. External validation also produced very good to excellent performance metrics, with AUCs ranging from 0.840 (95% CI 0.834-0.846) to 0.956 (95% CI 0.952-0.960). CONCLUSION:These results show that developing diagnostic predictive models for determining subjects in end-of-life care at the time of a drug treatment is possible and may improve the validity of the risk profile for those treatments.

SUBMITTER: Swerdel JN

PROVIDER: S-EPMC7165142 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Developing Predictive Models to Determine Patients in End-of-Life Care in Administrative Datasets.

Swerdel Joel N JN Reps Jenna M JM Fife Daniel D Ryan Patrick B PB

Drug safety 20200501 5

<h4>Introduction</h4>In observational studies with mortality endpoints, one needs to consider how to account for subjects whose interventions appear to be part of 'end-of-life' care.<h4>Objective</h4>The objective of this study was to develop a diagnostic predictive model to identify those in end-of-life care at the time of a drug exposure.<h4>Methods</h4>We used data from four administrative claims datasets from 2000 to 2017. The index date was the date of the first prescription for the last ne ...[more]

PMID: 31939079

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Project description:BackgroundNursing homes are likely to become increasingly important as end-of-life care facilities. Previous studies indicate that individuals residing in these facilities have a high prevalence of end-of-life symptoms and a significant need for palliative care. The aim of this study was to develop an end-of-life care program for nursing homes in Spain based on previous models yet adapted to the specific context and the needs of staff in nursing homes in the country.MethodsA descriptive study of a complex intervention procedure was developed. The study consisted of three phases. The first phase was a prospective study assessing self-efficacy in palliative care (using the SEPC scale) and attitudes towards end-of-life care (using the FATCOD-B scale) among nursing home staff before and after the completion of a basic palliative care training program. In the second phase, objectives were selected using the Delphi consensus technique, where nursing home and primary care professionals assessed the relevance, feasibility, and level of attainment of 42 quality standards. In phase 3, interventions were selected for these objectives through two focus group sessions involving nursing home, primary care, and palliative care professionals.ResultsAs a result of the training, an improvement in self-efficacy and attitudes towards end-of-life care was observed. In phase 2, 14 standards were selected and grouped into 5 objectives: to conduct a comprehensive assessment and develop a personalized care plan adapted to the palliative needs detected; to provide information in a clear and accessible way; to request and record advance care directives; to provide early care with respect to loss and grief; to refer patients to a specialized palliative care unit if appropriate, depending on the complexity of the palliative care required. Based on these objectives, the participants in the focus group sessions designed the 22 interventions that make up the program.ConclusionsThe objectives and interventions of the NUHELP program constitute an end-of-life care program which can be implemented in nursing homes to improve the quality of end-of-life care in these facilities by modifying their clinical practice, organization, and relationship with the health system as well as serving as an example of an effective health intervention program.

Project description:BackgroundCulture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care.Methods and findingsIn this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n?=?171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach ??=?0.98); and significantly associated with US birthplace (r?=?0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR?=?1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR?=?0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR?=?1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR?=?2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR?=?1.59, 95% CI:1.20-2.12).ConclusionThe USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials).

Project description:BACKGROUND & AIMS:There has been increased attention on ways to improve the quality of end-of-life care for patients with end-stage liver disease; however, there have been few reports of care experiences for patients during terminal hospitalizations. We analyzed data from a large national database to increase our understanding of palliative care for and health care utilization by patients with end-stage liver disease. METHODS:We performed a cross-sectional, observational study to examine terminal hospitalizations of adults with decompensated cirrhosis using data from the National Inpatient Sample from 2009 through 2013. We collected data on palliative care consultation and total hospital costs, and performed multivariate regression analyses to identify factors associated with palliative care consultation. We also investigated whether consultation was associated with lower costs. RESULTS:Among hospitalized adults with terminal decompensated cirrhosis, 30.3% received palliative care; the mean cost per hospitalization was $48,551 ± $1142. Palliative care consultation increased annually, and was provided to 18.0% of patients in 2009 and to 36.6% of patients in 2013 (P < .05). The mean cost for the terminal hospitalization did not increase significantly ($47,969 in 2009 to $48,956 in 2013, P = .77). African Americans, Hispanics, Asians, and liver transplant candidates were less likely to receive palliative care, whereas care in large urban teaching hospitals was associated with a higher odds of receiving consultation. Palliative care was associated with lower procedure burden-after adjusting for other factors, palliative care was associated with a cost reduction of $10,062. CONCLUSIONS:Palliative care consultation for patients with end-stage liver disease increased from 2009 through 2013. Palliative care consultation during terminal hospitalizations is associated with lower costs and procedure burden. Future research should evaluate timing and effects of palliative care on quality of end-of-life care in this population.

Project description:Hematologic malignancies are a heterogeneous group of diseases with unique illness trajectories, treatment paradigms, and potential for curability, which affect patients' palliative and end-of-life care needs. Patients with hematologic malignancies endure immense physical and psychological symptoms because of both their illness and often intensive treatments that result in significant toxicities and adverse effects. Compared with patients with solid tumors, those with hematologic malignancies also experience high rates of hospitalizations, intensive care unit admissions, and in-hospital deaths and low rates of referral to hospice as well as shorter hospice length of stay. In addition, patients with hematologic malignancies harbor substantial misperceptions about treatment risks and benefits and frequently overestimate their prognosis. Even survivors of hematologic malignancies struggle with late effects, post-treatment complications, and post-traumatic stress symptoms that can significantly diminish their quality of life. Despite these substantial unmet needs, specialty palliative care services are infrequently consulted for the care of patients with hematologic malignancies. Several illness-specific, cultural, and system-based barriers to palliative care integration and optimal end-of-life care exist in this population. However, recent evidence has demonstrated the feasibility, acceptability, and efficacy of integrating palliative care to improve the quality of life and care of patients with hematologic malignancies and their caregivers. More research is needed to develop and test population-specific palliative and supportive care interventions to ensure generalizability and to define a sustainable clinical delivery model. Future work also should focus on identifying moderators and mediators of the effect of integrated palliative care models on patient-reported outcomes and on developing less resource-intensive integrated care models to address the diverse needs of this population.

Project description:Background and objectivesCare coordination and palliative care supports are associated with reduced anxiety, fewer hospital admissions, and improved quality of life for patients and their families. Early palliative care can result in savings in the end-of-life period, but there is limited evidence that larger-scale models can improve both utilization and the cost of care. Three models that received Health Care Innovation Awards from the Centers for Medicare & Medicaid Services aimed to improve quality of care and reduce cost through the use of innovative care coordination models. This study explores the total cost of care and selected utilization outcomes at the end-of-life for these innovative models, each of which enrolled adults with multiple chronic conditions and featured care coordination with advance care planning as a component of palliative care. These included a comprehensive at-home supportive care model for persons predicted to die within a year and two models offering advance care planning in nursing facilities and during care transitions.Research design and methodsWe used regression models to assess model impacts on costs and utilization for high-risk Medicare beneficiaries participating in the comprehensive supportive care model (N = 3,339) and the two care transition models (N = 587 and N = 277) who died during the study period (2013-2016), relative to a set of matched comparison patients.ResultsComparing participants in each model who died during the study period to matched comparators, two of the three models were associated with significantly lower costs in the last 90 days of life ($2,122 and $4,606 per person), and the third model showed nonsignificant differences. Two of the three models encouraged early hospice entry in the last 30 days of life. For the comprehensive at-home supportive care model, we observed aggregate savings of nearly $19 million over the study period. One care transition model showed aggregate savings of over $500,000 during the same period. Potential drivers of these cost savings include improved patient safety, timeliness of care, and caregiver support.Discussion and implicationsTwo of the three models achieved significant lower Medicare costs than a comparison group and the same two models also sustained their models beyond the Centers for Medicare & Medicaid Services award period. These findings show promise for achieving palliative care goals as part of care coordination innovation.

Project description:ImportanceThere is widespread consensus on the challenges to meeting the end-of-life wishes of decedents in the US. However, there is broad but not always recognized success in meeting wishes among decedents 65 years and older.ObjectiveTo assess how well end-of-life wishes of decedents 65 years and older are met in the last year of life.Design, setting, and participantsThis quality improvement study involved 3 planned samples of family members or informants identified as the primary contact in the medical record of Kaiser Permanente Southern California decedents. The first sample was 715 decedents, 65 years or older, who died between April 1 and May 31, 2017. The second was a high-cost sample of 332 decedents, 65 years or older, who died between June 1, 2016, and May 31, 2017, and whose costs in the last year of life were in the top 10% of the costs of all decedents. The third was a lower-cost sample with 655 decedents whose costs were not in the top 10%. The survey was fielded between December 19, 2017, and February 8, 2018.Main outcomes and measuresMeeting end-of-life wishes, discussions with next of kin and physicians, types of discordant care, and perceptions of amount of care received.ResultsSurveys were completed by 715 of the 2281 next of kin in the all-decedent sample (mean [SD] decedent age, 80.9 [8.9] years; 361 [50.5%] male) for a 31% response rate; in 332 of the 1339 next of kin in the high-cost sample (mean [SD] decedent age, 75.5 [7.1] years; 194 [48.4%] male) for a 25% response rate; and in 659 of 2058 in the lower-cost sample (mean [SD] decedent age, 81.6 [8.8] years) for a 32% response rate. Respondents noted that high percentages of decedents received treatment that was concordant with their desires: 601 (88.9%) had their wishes met, 39 (5.9%) received a treatment they did not want, and 554 (84.1%) filled out an advance directive. A total of 509 respondents (82.5%) believed the amount of care was the right amount. Those with the highest costs had their wishes met at lower rates than those with lower costs (250 [80.1%] vs 553 [89.6%]).Conclusions and relevanceIn this Kaiser Permanente Southern California cohort, a large proportion of decedents 65 years and older had end-of-life discussions and documentation, had their wishes met, and received the amount of care they thought appropriate.

Project description:BackgroundMany people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process.AimExplore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care.MethodsSemi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia.ResultsParticipants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes.ConclusionsThe modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.

Dataset Information

Developing Predictive Models to Determine Patients in End-of-Life Care in Administrative Datasets.

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Developing Predictive Models to Determine Patients in End-of-Life Care in Administrative Datasets.

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