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Quasi-Experimental Evaluation of LifeCourse on Utilization and Patient and Caregiver Quality of Life and Experience.

ABSTRACT: Whole-person care is a new paradigm for serious illness, but few programs have been robustly studied. We sought to test the effect of LifeCourse (LC), a person-centered program for patients living with serious illness, on health-care utilization, care experience, and quality of life, employing a quasi-experimental design with a Usual Care (UC) comparison group. The study was conducted 2012 to 2017 at an upper-Midwest not-for-profit health-care system with outcomes measured every 3 months until the end of life. Enrolled patients (N = 903) were estimated to be within 3 years of end of life and diagnosed with 1+ serious illness. Exclusion criteria included hospice enrollment at time of screening or active dying. Community health workers (CHWs) delivered standardized monthly 1-hour home visits based on palliative care guidelines and motivational interviewing to promote patients' physical, psychosocial, and financial well-being. Primary outcomes included health-care utilization and patient- and caregiver-experience and quality of life. Patients were elderly (LC 74, UC 78 years) and primarily non-Hispanic, white, living at home with cardiovascular disease as the primary diagnosis (LC 69%, UC 57%). A higher proportion of LC patients completed advance directives (N = 173, 38%) than UC patients (N = 66, 15%; P < .001). LifeCourse patients who died spent more days in hospice (88 ± 191 days) compared to UC patients (44 ± 71 days; P = .018). LifeCourse patients reported greater improvements than UC in communication as part of the care experience ( P = .016). Implementation of person-centered programs delivered by CHWs is feasible; inexpensive upstream expansion of palliative care models can yield benefits for patients and caregivers. Trial Registration: Trial NCT01746446 was registered on November 27, 2012 at ClinicalTrials.gov .

SUBMITTER: Britt HR

PROVIDER: S-EPMC6442020 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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Quasi-Experimental Evaluation of LifeCourse on Utilization and Patient and Caregiver Quality of Life and Experience.

Britt Heather R HR JaKa Meghan M MM Fernstrom Karl M KM Bingham Paige E PE Betzner Anne E AE Taghon Jessica R JR Shippee Nathan D ND Shippee Tetyana P TP Schellinger Sandra E SE Anderson Eric W EW

The American journal of hospice & palliative care 20181213 5

Whole-person care is a new paradigm for serious illness, but few programs have been robustly studied. We sought to test the effect of LifeCourse (LC), a person-centered program for patients living with serious illness, on health-care utilization, care experience, and quality of life, employing a quasi-experimental design with a Usual Care (UC) comparison group. The study was conducted 2012 to 2017 at an upper-Midwest not-for-profit health-care system with outcomes measured every 3 months until t ...[more]

PMID: 30541333

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Project description:BackgroundCaregivers of adults with cancer often report a different understanding of the patient's prognosis than the oncologist. We examine the associations of caregiver-oncologist prognostic concordance with caregiver depressive symptoms, distress, and quality of life (QoL). We also explore whether these relationships differed by caregiver environment mastery, an individual's sense of control, and effectiveness in managing life situations.Materials and methodsWe used data from a national geriatric assessment cluster-randomized trial (URCC 13070) that recruited patients aged 70 years and older with incurable cancer considering any line of cancer treatment at community oncology practices, their caregivers, and their oncologists. At enrollment, caregivers and oncologists estimated the patient's prognosis (0-6 months, 7-12 months, 1-2 years, 2-5 years, and >5 years; identical responses were concordant). Caregivers completed the Ryff's environmental mastery at enrollment. At 4-6 weeks, caregivers completed the Patient Health Questionnaire-2 (depressive symptoms), distress thermometer, and 12-Item Short-Form Health Survey (quality of life [QoL]). We used generalized estimating equations in models adjusted for covariates. We then assessed the moderation effect of caregiver mastery.ResultsOf 411 caregiver-oncologist dyads (mean age = 66.5 years), 369 provided responses and 28% were concordant. Prognostic concordance was associated with greater caregiver depressive symptoms (β = 0.30; p = .04) but not distress or QoL. A significant moderation effect for caregiver depressive symptoms was found between concordance and mastery (p = .01). Specifically, among caregivers with low mastery (below median), concordance was associated with greater depressive symptoms (β = 0.68; p = .003).ConclusionsCaregiver-oncologist prognostic concordance was associated with caregiver depressive symptoms. We found a novel moderating effect of caregiver mastery on the relationship between concordance and caregiver depressive symptoms.Implications for practiceCaregiver-oncologist prognostic concordance is associated with greater caregiver depressive symptoms, particularly in those with low caregiver mastery. When discussing prognosis with caregivers, physicians should be aware that prognostic understanding may affect caregiver psychological health and should assess their depressive symptoms. In addition, while promoting accurate prognostic understanding, physicians should also identify strengths and build resilience among caregivers.

Project description:Importance:Quality of life (QoL) is an important consideration in cancer medicine, especially because drugs are becoming more costly and may only result in modest gains in overall survival. However, there has been no descriptive analysis for the points at which QoL is measured in cancer trials. Objective:To estimate the prevalence of studies that measure QoL at different points and see how many studies measure QoL for the entirety of a patient's life. Design, Setting, and Participants:This cross-sectional analysis includes all articles on oncology clinical trials in the 3 highest-impact oncology journals, published between July 2015 and June 2018, that reported QoL outcomes. Main Outcomes and Measures:Data were abstracted on when QoL was assessed and the characteristics of these studies. Results:For all 149 studies that met inclusion criteria, QoL assessment was high during treatment (104 articles [69.8%]), during follow-up (81 articles [54.4%]), and after the end of the intervention (68 articles [45.6%]). In 5 of the 149 studies (3.4%), QoL was assessed until death, including in only 1 of the 74 studies on metastatic or incurable cancers. Among these 5 studies, only 1 (20%) used a drug intervention, 1 (20%) used a behavioral intervention, and 2 (40%) used a radiation intervention; only 1 of 5 was in the metastatic setting. The number of studies that reported a positive QoL outcome (ie, QoL outcome was more favorable in the intervention group than in the control group) was between 42 of 81 articles (51.9%) and 16 of 28 articles (57.1%) for most QoL assessment points but only 1 of 5 articles (20%) for studies measuring QoL until death. Conclusions and Relevance:This study found that most clinical trials assessed QoL during the treatment or intervention and often during a given amount of follow-up but infrequently assessed QoL on disease progression and rarely followed QoL until the end of the patient's life. Most studies reporting QoL until the end of life reported worse QoL outcomes for the intervention group than the control group. Future research and policy recommendations should consider not just short-term QoL outcomes but QoL outcomes throughout the patient's cancer care.

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Quasi-Experimental Evaluation of LifeCourse on Utilization and Patient and Caregiver Quality of Life and Experience.

Publications

Quasi-Experimental Evaluation of LifeCourse on Utilization and Patient and Caregiver Quality of Life and Experience.

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