Using modeling to inform patient-centered care choices at the end of life.
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ABSTRACT:
SUBMITTER: Hajizadeh N
PROVIDER: S-EPMC3914667 | biostudies-literature | 2013 Sep
REPOSITORIES: biostudies-literature
Publications
Using modeling to inform patient-centered care choices at the end of life.
Hajizadeh Negin N Crothers Kristina K Braithwaite R Scott RS
Journal of comparative effectiveness research 20130901 5
<h4>Aim</h4>Advance directives are often under-informed due to a lack of disease-specific prognostic information. Without well-informed advance directives patients may receive default care that is incongruent with their preferences. We aimed to further inform advance care planning in patients with severe chronic obstructive pulmonary disease by estimating outcomes with alternative advance directives.<h4>Methods</h4>We designed a Markov microsimulation model estimating outcomes for patients choos ...[more]
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Project description:CONTEXT:Although patient and physician characteristics are thought to be predictive of discretionary interventions at the end of life (EoL), few studies have data on both parties. OBJECTIVE:To test the hypothesis that patient preferences and physician attitudes are both independently associated with discretionary interventions at the EoL. METHODS:We report secondary analyses of data collected prospectively from physicians (n = 38) and patients with advanced cancer (n = 265) in the Values and Options in Cancer Care study. Predictor variables were patient attitudes toward EoL care and physician-reported comfort with medical paternalism, assessed indirectly using a modified version of the Control Preference Scale. We explored whether the magnitude of the physician variable was influenced by the inclusion of particular patient treatment-preference variables (i.e., effect modification). Outcomes were a chemotherapy use score (?14 days before death [scored 2], 15-31 days before death [scored 1], and >31 days [scored 0]) and an emergency department visit/inpatient admission score (two or more admissions in the last 31 days [scored 2], one admission [1], and 0 admissions [0]) in the last month of life. RESULTS:Chemotherapy scores were nearly 0.25 points higher if patients expressed a preference for experimental treatments with unknown benefit at study entry (0.238 points, 95% CI = 0.047-0.429) or reported an unfavorable attitude toward palliative care (0.247 points, 95% CI = 0.047-0.450). A two-standard deviation difference in physician comfort with medical paternalism corresponded to standardized effects of 0.35 (95% CI = 0.03-0.66) for chemotherapy and 0.33 (95% CI = 0.04-0.61) for emergency department visits/inpatient admissions. There was no evidence of effect modification. CONCLUSION:Patient treatment preferences and physician attitudes are independently associated with higher levels of treatment intensity before death. Greater research, clinical, and policy attention to patient treatment preferences and physician comfort with medical paternalism might lead to improvements in care of patients with advanced disease.
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Project description:BackgroundAlthough patient portals are widely used for health promotion, little is known about the use of palliative care and end-of-life (PCEOL) portal tools available for patients and caregivers.ObjectiveThis study aims to identify and assess the user perspectives of PCEOL portal tools available to patients and caregivers described and evaluated in the literature.MethodsWe performed a scoping review of the academic literature directed by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) extension for Scoping Review and searched three databases. Sources were included if they reported the development or testing of a feature, resource, tool, or intervention; focused on at least one PCEOL domain defined by the National Coalition for Hospice and Palliative Care; targeted adults with serious illness or caregivers; and were offered via a patient portal tethered to an electronic medical record. We independently screened the titles and abstracts (n=796) for eligibility. Full-text (84/796, 10.6%) sources were reviewed. We abstracted descriptions of the portal tool name, content, targeted population, and reported user acceptability for each tool from included sources (n=19).ResultsIn total, 19 articles describing 12 tools were included, addressing the following PCEOL domains: ethical or legal (n=5), physical (n=5), and psychological or psychiatric (n=2). No tools for bereavement or hospice care were identified. Studies have reported high acceptability of tools among users; however, few sources commented on usability among older adults.ConclusionsPCEOL patient portal tools are understudied. As medical care increasingly moves toward virtual platforms, future research should investigate the usability and acceptability of PCEOL patient portal resources and evaluate their impact on health outcomes.
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Project description:ObjectiveTo categorize national medical expenditures into patient-centered categories.Data sourcesThe 2007 Medical Expenditure Panel Survey (MEPS), a nationally representative annual survey of the civilian noninstitutionalized population.Study designDescriptive statistics categorizing expenditures into seven patient-centered care categories: chronic conditions, acute illness, trauma/injury or poisoning, dental, pregnancy/birth-related, routine preventative health care, and other.Data collection methodsMEPS cohort.Principal findingsNearly half of expenditures were for chronic conditions. The remaining expenditures were as follows: acute illness (25 percent), trauma/poisoning (8 percent), dental (7 percent), routine preventative health care (6 percent), pregnancy/birth-related (4 percent), and other (3 percent). Hospital-based expenditures accounted for the majority for acute illness, trauma/injury, and pregnancy/birth and over a third for chronic conditions.ConclusionsThis patient-centered viewpoint may complement other methods to examine health care expenditures and may better represent how patients interact with the health care system and expend resources.
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Project description:PurposeThis study presents the validation of an index that defines and measures a patient-centered approach to quality survivorship care.MethodsWe conducted a national survey of 1,278 survivors of breast, prostate, and colorectal cancers to identify their priorities for cancer survivorship care. We identified 42 items that were "very important or absolutely essential" to study participants. We then conducted exploratory and confirmatory factor analyses (EFA/CFA) to develop and validate the Patient-Centered Survivorship Care Index (PC-SCI).ResultsA seven-factor structure was identified based on EFA on a randomly split half sample and then validated by CFA based on the other half sample. The seven factors include: (1) information and support in survivorship (7 items), (2) having a medical home (10 items) (3) patient engagement in care (3 items), (4) care coordination (5 items), (5) insurance navigation (3 items), (6) care transitions from oncologist to primary care (3 items), and (7) prevention and wellness services (5 items). All factors have excellent composite reliabilities (Cronbach's alpha 0.84-0.94, Coefficient of Omega: 0.81-0.94).ConclusionsProviding quality post-treatment care is critical for the long-term health and well-being of survivors. The PC-SCI defines a patient-centered approach to survivorship care to complement clinical practice guidelines. The PC-SCI has acceptable composite reliability, providing the field with a valid instrument of patient-centered survivorship care. The PC-SCI provides cancer centers with a means to guide, measure and monitor the development of their survivorship care to align with patient priorities of care.Trial registrationClinicalTrials.gov ID: NCT02362750 , 13 February 2015.
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Project description:Background:Pakistan has the sixth largest population in the world and boasts the fifth greatest burden of tuberculosis. The Government of Pakistan has set the ambitious goal of zero deaths due to tuberculosis and universal access to tuberculosis care by 2020. Successfully reaching these goals is dependent on the country's capacity to diagnose and successfully treat an estimated 200000 unnotified or missing patients with tuberculosis. Methods:A patient-pathway analysis (PPA) was conducted at the national level, as well as for each of the 4 provinces, to assess the alignment between patient care seeking and the availability of tuberculosis diagnostic and treatment services. Results:Almost 90% of patients initiated care in the private sector, which accounts for only 15% of facilities with the capacity for tuberculosis diagnosis and treatment. Across the country, nearly 50% of tuberculosis microscopy laboratories were located in public-sector-basic health units and regional health centers. However, very few patients initiated care in these facilities. Overall, tuberculosis case detection was high given the low likelihood of patients reaching facilities with the capacity for tuberculosis service delivery during their first visit. Discussion:Improving the engagement of the informal sector and lower-level clinicians will improve the efficiency and timeliness of tuberculosis diagnosis for patients in Pakistan. Concurrently, the apparent strength of the referral networks connecting community-level workers and private clinicians to the public sector for tuberculosis diagnosis and treatment suggests that strengthening the capacity of the public sector could be valuable.
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Project description:BACKGROUND:In recent literature, patient portals are considered as important tools for the delivery of patient-centered care. To date, it is not clear how patients would conceptualize a patient portal and which health information needs they have when doing so. OBJECTIVE:This study aimed (1) to investigate health information needs, expectations, and attitudes toward a patient portal and (2) to assess whether determinants, such as patient characteristics, health literacy, and empowerment status, can predict two different variables, namely the importance people attribute to obtaining health information when using a patient portal and the expectations concerning personal health care when using a patient portal. METHODS:We conducted a cross-sectional survey of the Flemish population on what patients prefer to know about their digital health data and their expectations and attitudes toward using a patient portal to access their electronic health record. People were invited to participate in the survey through newsletters, social media, and magazines. We used a questionnaire including demographics, health characteristics, health literacy, patient empowerment, and patient portal characteristics. RESULTS:We received 433 completed surveys. The health information needs included features such as being notified when one's health changes (371/396, 93.7%), being notified when physical parameters increase to dangerous levels (370/395, 93.7%), observing connections between one's symptoms or diseases or biological parameters (339/398, 85.2%), viewing the evolution of one's health in function of time (333/394, 84.5%), and viewing information about the expected effect of treatment (349/395, 88.4%). Almost 90% (369/412) of respondents were interested in using a patient portal. Determinants of patients' attachment for obtaining health information on a patient portal were (1) age between 45 and 54 years (P=.05); (2) neutral (P=.03) or interested attitude (P=.008) toward shared decision making; and (3) commitment to question physicians' decisions (P=.03, R2=0.122). Determinants of patients' expectations on improved health care by accessing a patient portal were (1) lower education level (P=.04); (2) neutral (P=.03) or interested attitude (P=.008) toward shared decision making; and (3) problems in understanding health information (P=.04; R2=0.106). CONCLUSIONS:The interest in using a patient portal is considerable in Flanders. People would like to receive alerts or some form of communication from a patient portal in case they need to act to manage their health. Determinants such as education, attached importance to shared decision making, difficulties in finding relevant health information, and the attached importance in questioning the decisions of physicians need to be considered in the design of a patient portal.
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Project description:The Veterans Health Administration (VHA) is charged with providing high-quality health care, not only in terms of technical competence but also with regard to patient-centered care experiences. Patient-centered coordination of care and communication are especially important in cancer care, as deficiencies in these areas have been implicated in many cases of delayed cancer diagnosis and treatment. Additionally, because cancer care facilities are concentrated within the VHA system, geographical and system-level barriers may present prominent obstacles to quality care. Systematic assessment of patient-centered communication (PCC) may help identify both individual veterans who are at risk of suboptimal care and opportunities for quality improvement initiatives at the service, facility, or system-wide level. In this manuscript, we describe our vision to implement an assessment of PCC through patient self-report to improve the quality of cancer care and other health services in the VHA. We outline a possible strategy to assess PCC that leverages the VHA's existing initiative to promote use of an online personal health record for veterans (MyHealtheVet). Questionnaires administered periodically or following specific episodes of care can be targeted to assess PCC in cancer care. Assessment of PCC can also be tied to clinical and administrative data for more robust analysis of patient outcomes. Ultimately, the goal of any assessment of PCC is to gather valid, actionable data that can assist VHA clinicians and staff with providing the best possible care for veterans with cancer.
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Project description:With advances in breast cancer (BC) gene panel testing, risk counseling has become increasingly complex, potentially leading to unmet psychosocial needs. We assessed psychosocial needs and correlates in women initiating testing for high genetic BC risk in clinics in France and Germany, and compared these results with data from a literature review. Among the 442 counselees consecutively approached, 212 (83%) in France and 180 (97%) in Germany, mostly BC patients (81% and 92%, respectively), returned the 'Psychosocial Assessment in Hereditary Cancer' questionnaire. Based on the Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA) BC risk estimation model, the mean BC lifetime risk estimates were 19% and 18% in France and Germany, respectively. In both countries, the most prevalent needs clustered around the "living with cancer" and "children-related issues" domains. In multivariate analyses, a higher number of psychosocial needs were significantly associated with younger age (b = -0.05), higher anxiety (b = 0.78), and having children (b = 1.51), but not with country, educational level, marital status, depression, or loss of a family member due to hereditary cancer. These results are in line with the literature review data. However, this review identified only seven studies that quantitatively addressed psychosocial needs in the BC genetic counseling setting. Current data lack understandings of how cancer risk counseling affects psychosocial needs, and improves patient-centered care in that setting.
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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.
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