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      Quality of Life and Mortality of Long-Term Colorectal Cancer Survivors in the Seattle Colorectal Cancer Family Registry

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          Abstract

          Background and Aim

          Because most colorectal cancer patients survive beyond five years, understanding quality of life among these long-term survivors is essential to providing comprehensive survivor care. We sought to identify personal characteristics associated with reported quality of life in colorectal cancer survivors, and sub-groups of survivors potentially vulnerable to very low quality of life.

          Methods

          We assessed quality of life using the Veterans RAND 12-item Health Survey within a population-based sample of 1,021 colorectal cancer survivors in the Seattle Colorectal Cancer Family Registry, approximately 5 years post-diagnosis. In this case-only study, mean physical component summary scores and mental component summary scores were examined with linear regression. To identify survivors with substantially reduced ability to complete daily tasks, logistic regression was used to estimate odds ratios for “very low” summary scores, defined as a score in the lowest decile of the reference US population. All cases were followed for vital status following QoL assessment, and mortality was analyzed with Cox proportional hazards regression.

          Results

          Lower mean physical component summary score was associated with older age, female sex, obesity, smoking, and diabetes or other co-morbidity; lower mean mental component summary score was associated with younger age and female sex. Higher odds of very low physical component summary score was associated with older age, obesity, less education, smoking, co-morbidities, and later stage at diagnosis; smoking was associated with higher odds of very low mental component summary score. A very low physical component score was associated with higher risk of mortality (hazard ratio (95% confidence interval): 3.97 (2.95–5.34)).

          Conclusions

          Our results suggest that identifiable sub-groups of survivors are vulnerable to very low physical components of quality of life, decrements that may represent meaningful impairment in completing everyday tasks and are associated with higher risk of death.

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          Most cited references31

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          Updated U.S. population standard for the Veterans RAND 12-item Health Survey (VR-12).

          The purpose of this project was to develop an updated U.S. population standard for the Veterans RAND 12-item Health Survey (VR-12). We used a well-defined and nationally representative sample of the U.S. population from 52,425 responses to the Medical Expenditure Panel Survey (MEPS) collected between 2000 and 2002. We applied modified regression estimates to update the non-proprietary 1990 scoring algorithms. We applied the updated standard to the Medicare Health Outcomes Survey (HOS) to compute the VR-12 physical (PCS((MEPS standard))) and mental (MCS((MEPS standard))) component summaries based on the MEPS. We compared these scores to PCS and MCS based on the 1990 U.S. population standard. Using the updated U.S. population standard, the average VR-12 PCS((MEPS standard)) and MCS((MEPS standard)) scores in the Medicare HOS were 39.82 (standard deviation [SD] = 12.2) and 50.08 (SD = 11.4), respectively. For the same Medicare HOS, the average PCS and MCS scores based on the 1990 standard were 1.40 points higher and 0.99 points lower in comparison to VR-12 PCS and MCS, respectively. Changes in the U.S. population between 1990 and today make the old standard obsolete for the VR-12, so the updated standard developed here is widely available to serve as such a contemporary standard for future applications for health-related quality of life (HRQoL) assessments.
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            Interpreting SF-36 summary health measures: a response.

            In response to questions raised about the "accuracy" of SF-36 physical (PCS) and mental (MCS) component summary scores, particularly extremely high and low scores, we briefly comment on: how they were developed, how they are scored, the factor content of the eight SF-36 subscales, cross-tabulations between item-level responses and extreme summary scores, and published and new tests of their empirical validity. Published cross-tabulations between SF-36 items and PCS and MCS scores, reanalyses of public datasets (N = 5919), and preliminary results from the Medicare Health Outcomes Survey (HOS) (N = 172,314) yielded little or no evidence in support of Taft's hypothesis that extreme scores are an invalid artifact of some negative scoring weights. For example, in the HOS, those (N = 432) with "unexpected" PCS scores worse than 20 (which, according to Taft, indicate better mental health rather than worse physical health) were about 25% more likely to die within two years, in comparison with those scoring in the next highest (21-30) category. In this test and in all other empirical tests, results of predictions supported the validity of extreme PCS and MCS scores. We recommend against the interpretation of average differences smaller than one point in studies that seek to detect "false" measurement and we again repeat our 7-year-old recommendation that results based on summary measures should be thoroughly compared with the SF-36 profile before drawing conclusions. To facilitate such comparisons, scoring utilities and user-friendly graphs for SF-36 profiles and physical and mental summary scores (both orthogonal and oblique scoring algorithms) have been made available on the Internet at www.sf-36.com/test.
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              Colon Cancer Family Registry: an international resource for studies of the genetic epidemiology of colon cancer.

              Family studies have served as a cornerstone of genetic research on colorectal cancer. The Colorectal Cancer Family Registry (Colon CFR) is an international consortium of six centers in North America and Australia formed as a resource to support studies on the etiology, prevention, and clinical management of colorectal cancer. Differences in design and sampling schemes ensures a resource that covers the continuum of disease risk. Two separate recruitment strategies identified colorectal cancer cases: population-based (incident case probands identified by cancer registries; all six centers) and clinic-based (families with multiple cases of colorectal cancer presenting at cancer family clinics; three centers). At this time, the Colon CFR is in year 10 with the second phase of enrollment nearly complete. In phase I recruitment (1998-2002), population-based sampling ranged from all incident cases of colorectal cancer to a subsample based on age at diagnosis and/or family cancer history. During phase II (2002-2007), population-based recruitment targeted cases diagnosed before the age of 50 years are more likely attributable to genetic factors. Standardized protocols were used to collect information regarding family cancer history and colorectal cancer risk factors, and biospecimens were obtained to assess microsatellite instability (MSI) status, expression of mismatch repair proteins, and other molecular and genetic processes. Of the 8,369 case probands enrolled to date, 2,602 reported having one or more colorectal cancer-affected relatives and 799 met the Amsterdam I criteria for Lynch syndrome. A large number of affected (1,324) and unaffected (19,816) relatives were enrolled, as were population-based (4,108) and spouse (983) controls. To date, 91% of case probands provided blood (or, for a few, buccal cell) samples and 75% provided tumor tissue. For a selected sample of high-risk subjects, lymphocytes have been immortalized. Nearly 600 case probands had more than two affected colorectal cancer relatives, and 800 meeting the Amsterdam I criteria and 128, the Amsterdam II criteria. MSI testing for 10 markers was attempted on all obtained tumors. Of the 4,011 tumors collected in phase I that were successfully tested, 16% were MSI-high, 12% were MSI-low, and 72% were microsatellite stable. Tumor tissues from clinic-based cases were twice as likely as population-based cases to be MSI-high (34% versus 17%). Seventeen percent of phase I proband tumors and 24% of phase II proband tumors had some loss of mismatch repair protein, with the prevalence depending on sampling. Active follow-up to update personal and family histories, new neoplasms, and deaths in probands and relatives is nearly complete. The Colon CFR supports an evolving research program that is broad and interdisciplinary. The greater scientific community has access to this large and well-characterized resource for studies of colorectal cancer.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                2 June 2016
                2016
                : 11
                : 6
                : e0156534
                Affiliations
                [001]Public Health Sciences Division, Fred Hutchinson Cancer Research Center, Seattle, WA, United States of America
                Iranian Institute for Health Sciences Research, ACECR, ISLAMIC REPUBLIC OF IRAN
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Conceived and designed the experiments: RC SVA. Performed the experiments: SVA. Analyzed the data: SVA. Contributed reagents/materials/analysis tools: PAN. Wrote the paper: SVA RC PAN. Manuscript revision: PAN RC SVA. Interpretation of results: PAN RC SVA.

                Article
                PONE-D-15-32462
                10.1371/journal.pone.0156534
                4890809
                27253385
                8ed74de6-bba3-4e18-a8f6-7fa28ff44504
                © 2016 Adams et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 29 July 2015
                : 15 May 2016
                Page count
                Figures: 2, Tables: 3, Pages: 13
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/100000054, National Cancer Institute;
                Award ID: UM1 CA167551
                Funded by: funder-id http://dx.doi.org/10.13039/100000054, National Cancer Institute;
                Award ID: U01CA074794
                Award Recipient :
                Funded by: funder-id http://dx.doi.org/10.13039/100000054, National Cancer Institute;
                Award ID: K05 CA152715
                Award Recipient :
                This work was supported by the National Cancer Institute, National Institutes of Health grant UM1 CA167551 to R.M. Haile to support the Colorectal Cancer Family Registry Cohort infrastructure, grant U01CA074794 to P. A. Newcomb to support the Seattle Colorectal Cancer Family Registry, and grant K05 CA152715 to P. A. Newcomb. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Medicine and Health Sciences
                Oncology
                Cancers and Neoplasms
                Colorectal Cancer
                Medicine and Health Sciences
                Oncology
                Cancer Detection and Diagnosis
                Medicine and Health Sciences
                Health Care
                Quality of Life
                Medicine and Health Sciences
                Endocrinology
                Endocrine Disorders
                Diabetes Mellitus
                Medicine and Health Sciences
                Metabolic Disorders
                Diabetes Mellitus
                People and Places
                Demography
                Death Rates
                Biology and Life Sciences
                Population Biology
                Population Metrics
                Death Rates
                Medicine and Health Sciences
                Diagnostic Medicine
                Diabetes Diagnosis and Management
                Biology and Life Sciences
                Physiology
                Physiological Parameters
                Body Weight
                Obesity
                Medicine and Health Sciences
                Physiology
                Physiological Parameters
                Body Weight
                Obesity
                Research and Analysis Methods
                Mathematical and Statistical Techniques
                Statistical Methods
                Regression Analysis
                Linear Regression Analysis
                Physical Sciences
                Mathematics
                Statistics (Mathematics)
                Statistical Methods
                Regression Analysis
                Linear Regression Analysis
                Custom metadata
                Due to ethical restrictions regarding patient privacy and consent, data are available upon request. Requests for the data may be sent to either Ms. Rachel Malen ( rmalen@ 123456fredhutch.org ) and Ms. Allyson Templeton ( atemplet@ 123456fredhutch.org ), or to author Dr. Newcomb ( pnewcomb@ 123456fredhutch.org ).

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