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      Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research, education, and policy

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          Abstract

          Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors' and caregivers' unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors' needs and functioning and caregivers' needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.

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          Most cited references 78

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          Self-management education: History, definition, outcomes, and mechanisms

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            Subsequent neoplasms in 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study.

            The occurrence of subsequent neoplasms has direct impact on the quantity and quality of life in cancer survivors. We have expanded our analysis of these events in the Childhood Cancer Survivor Study (CCSS) to better understand the occurrence of these events as the survivor population ages. The incidence of and risk for subsequent neoplasms occurring 5 years or more after the childhood cancer diagnosis were determined among 14,359 5-year survivors in the CCSS who were treated from 1970 through 1986 and who were at a median age of 30 years (range = 5-56 years) for this analysis. At 30 years after childhood cancer diagnosis, we calculated cumulative incidence at 30 years of subsequent neoplasms and calculated standardized incidence ratios (SIRs), excess absolute risks (EARs) for invasive second malignant neoplasms, and relative risks for subsequent neoplasms by use of multivariable Poisson regression. Among 14,359 5-year survivors, 1402 subsequently developed 2703 neoplasms. Cumulative incidence at 30 years after the childhood cancer diagnosis was 20.5% (95% confidence interval [CI] = 19.1% to 21.8%) for all subsequent neoplasms, 7.9% (95% CI = 7.2% to 8.5%) for second malignant neoplasms (excluding nonmelanoma skin cancer), 9.1% (95% CI = 8.1% to 10.1%) for nonmelanoma skin cancer, and 3.1% (95% CI = 2.5% to 3.8%) for meningioma. Excess risk was evident for all primary diagnoses (EAR = 2.6 per 1000 person-years, 95% CI = 2.4 to 2.9 per 1000 person-years; SIR = 6.0, 95% CI = 5.5 to 6.4), with the highest being for Hodgkin lymphoma (SIR = 8.7, 95% CI = 7.7 to 9.8) and Ewing sarcoma (SIR = 8.5, 95% CI = 6.2 to 11.7). In the Poisson multivariable analysis, female sex, older age at diagnosis, earlier treatment era, diagnosis of Hodgkin lymphoma, and treatment with radiation therapy were associated with increased risk of subsequent neoplasm. As childhood cancer survivors progress through adulthood, risk of subsequent neoplasms increases. Patients surviving Hodgkin lymphoma are at greatest risk. There is no evidence of risk reduction with increasing duration of follow-up.
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              Evidence on the cost and cost-effectiveness of palliative care: a literature review.

              In the context of limited resources, evidence on costs and cost-effectiveness of alternative methods of delivering health-care services is increasingly important to facilitate appropriate resource allocation. Palliative care services have been expanding worldwide with the aim of improving the experience of patients with terminal illness at the end of life through better symptom control, coordination of care and improved communication between professionals and the patient and family. To present results from a comprehensive literature review of available international evidence on the costs and cost-effectiveness of palliative care interventions in any setting (e.g. hospital-based, home-based and hospice care) over the period 2002-2011. Key bibliographic and review databases were searched. Quality of retrieved papers was assessed against a set of 31 indicators developed for this review. PubMed, EURONHEED, the Applied Social Sciences Index and the Cochrane library of databases. A total of 46 papers met the criteria for inclusion in the review, examining the cost and/or utilisation implications of a palliative care intervention with some form of comparator. The main focus of these studies was on direct costs with little focus on informal care or out-of-pocket costs. The overall quality of the studies is mixed, although a number of cohort studies do undertake multivariate regression analysis. Despite wide variation in study type, characteristic and study quality, there are consistent patterns in the results. Palliative care is most frequently found to be less costly relative to comparator groups, and in most cases, the difference in cost is statistically significant.
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                Author and article information

                Journal
                CA: A Cancer Journal for Clinicians
                CA: A Cancer Journal for Clinicians
                American Cancer Society
                00079235
                October 30 2018
                Affiliations
                [1 ]Vice President, Survivorship; American Cancer Society; Washington DC
                [2 ]Senior Principal Scientist; Behavioral Research, American Cancer Society; Atlanta GA
                [3 ]Senior Associate Scientist; Surveillance Research, American Cancer Society; Atlanta GA
                [4 ]Strategic Director; Cancer Caregiver Support, American Cancer Society; Atlanta GA
                [5 ]Chief Cancer Control Officer; American Cancer Society; Atlanta GA
                [6 ]Chief Medical Officer; American Cancer Society; Atlanta GA
                Article
                10.3322/caac.21548
                30376182
                © 2018

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