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The National Cancer Policy Forum of the National Academies of Sciences, Engineering and Medicine sponsored a workshop on July 24 and 25, 2017 on Long-Term Survivorship after Cancer Treatment. The workshop brought together diverse stakeholders (patients, advocates, academicians, clinicians, research funders, and policymakers) to review progress and ongoing challenges since the Institute of Medicine (IOM)'s seminal report on the subject of adult cancer survivors published in 2006. This commentary profiles the content of the meeting sessions and concludes with recommendations that stem from the workshop discussions. Although there has been progress over the past decade, many of the recommendations from the 2006 report have not been fully implemented. Obstacles related to the routine delivery of standardized physical and psychosocial care services to cancer survivors are substantial, with important gaps in care for patients and caregivers. Innovative care models for cancer survivors have emerged, and changes in accreditation requirements such as the Commission on Cancer's (CoC) requirement for survivorship care planning have put cancer survivorship on the radar. The Center for Medicare & Medicaid Innovation's Oncology Care Model (OCM), which requires psychosocial services and the creation of survivorship care plans for its beneficiary participants, has placed increased emphasis on this service. The OCM, in conjunction with the CoC requirement, is encouraging electronic health record vendors to incorporate survivorship care planning functionality into updated versions of their products. As new models of care emerge, coordination and communication among survivors and their clinicians will be required to implement patient- and community-centered strategies.

PurposeAsians report worse experiences with care than Whites. This could be due to true differences in care received, expectations about care, or survey response styles. We examined responses to the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Medicare survey items by Whites and Asians, controlling for underlying level on the CAHPS constructs.MethodsWe conducted multiple group analyses to evaluate measurement equivalence of CAHPS Medicare survey data between White and Asian Medicare beneficiaries for CAHPS reporting composites (communication with personal doctor, access to care, plan customer service) and global ratings of care using pooled data from 2007 to 2011. Responses were obtained from 1,326,410 non-Hispanic Whites and 40,672 non-Hispanic Asians (hereafter referred to as Whites and Asians). The median age for Whites was 70, with 24 % 80 or older, and 70 for Asians, with 23 % 80 or older. Fifty-eight percent of Whites and 56 % of Asians were female.ResultsA model without group-specific estimates fit the data as well as a model that included 12 group-specific estimates (7 factor loadings, 3 measured variable errors, and 2 item intercepts): Comparative Fit Index = 0.947 and 0.948; root-mean-square error of approximation = 0.052 and 0.052, respectively). Differences in latent CAHPS score means between Whites and Hispanics estimated from the two models were similar, differing by 0.053 SD or less.ConclusionsThis study provides support for measurement equivalence of the CAHPS Medicare survey composites (communication, access, customer service) and global ratings between White and Asian respondents, supporting comparisons of care experiences between the two groups.

PurposeLittle is known about factors associated with unmet needs for symptom management in patients with cancer.MethodsPatients with a new diagnosis of lung and colorectal cancer from the diverse nationally representative Cancer Care Outcomes Research and Surveillance cohort completed a survey approximately 5 months after diagnosis (N = 5,422). We estimated the prevalence of unmet need for symptom management, defined as patients who report that they wanted help for at least one common symptom (pain, fatigue, depression, nausea/vomiting, cough, dyspnea, diarrhea) during the 4 weeks before the survey but did not receive it. We identified patient factors associated with unmet need by using logistic regression with random effects to account for clustering within study sites.ResultsOverall, 15% (791 of 5,422) of patients had at least one unmet need for symptom management. Adjusting for sociodemographic and clinical factors, African American race, being uninsured or poor, having early-stage lung cancer, and the presence of moderate to severe symptoms were associated with unmet need (all P < .05). Furthermore, patients who rated their physician's communication score < 80 (on a 0 to 100 scale) had adjusted rates of an unmet need for symptom management that were more than twice as high as patients who rated their physicians with a perfect communication score (23.1% v 10.0%; P < .001).ConclusionA significant minority of patients with newly diagnosed lung and colorectal cancer report unmet needs for symptom management. Interventions to improve symptom management should consider the importance of physician communication to the patient's experience of disease.

259 Background: Asians report worse experiences with care than Whites. This could be due to true differences in care received, expectations about care, or survey response styles. To examine measurement equivalence of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Medicare survey items between Whites and Asians. Methods: We conducted multiple group confirmatory factor analyses to evaluate measurement equivalence of CAHPS Medicare survey data between White and Asian Medicare beneficiaries for three CAHPS reporting composites (communication with personal doctor, access to care, plan customer service) and global ratings of care using pooled CAHPS data from 2007-2011. Responses were obtained from non-Hispanic whites (n = 1,326,410) and Asians (n = 40,672). The median age for whites was 70, with 24% 80 or older, and 70 for Asians, with 23% 80 or older. Fifty-eight percent of the whites and 56% of the Asians were female. Results: A model without group-specific estimates fit the data as well as a model that included 12 group-specific estimates suggested by Lagrange multiplier tests (Comparative Fit Index = 0.922, Root Mean Square Error of Approximation = 0.064). Three of the 12 group-specific estimates consisted of 7 factor loadings, 3 measured variable errors, and 2 item intercepts. Six of the factor loadings were larger for Asians than for whites. Conclusions: This study provides general support for measurement equivalence in response to the CAHPS Medicare survey composites (communication, access, customer service) and global ratings between White and Asian respondents, supporting comparison of care experiences for the two groups.

BackgroundSince 1990, the National Cancer Institute (NCI) and Centers for Medicare and Medicaid Services (CMS) have collaborated to create linked data resources to improve our understanding of patterns of care, health care costs, and trends in utilization. However, existing data linkages have not included measures of patient experiences with care.ObjectiveTo describe a new resource for quality of care research based on a linkage between the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient surveys and the NCI's Surveillance, Epidemiology and End Results (SEER) data.DesignThis is an observational study of CAHPS respondents and includes both fee-for-service and Medicare Advantage beneficiaries with and without cancer. The data linkage includes: CAHPS survey data collected between 1998 and 2010 to assess patient reports on multiple aspects of their care, such as access to needed and timely care, doctor communication, as well as patients' global ratings of their personal doctor, specialists, overall health care, and their health plan; SEER registry data (1973-2007) on cancer site, stage, treatment, death information, and patient demographics; and longitudinal Medicare claims data (2002-2011) for fee-for-service beneficiaries on utilization and costs of care.ParticipantsIn total, 150,750 respondents were in the cancer cohort and 571,318 were in the non-cancer cohort.Main measuresThe data linkage includes SEER data on cancer site, stage, treatment, death information, and patient demographics, in addition to longitudinal data from Medicare claims and information on patient experiences from CAHPS surveys.Key resultsSizable proportions of cases from common cancers (e.g., breast, colorectal, prostate) and short-term survival cancers (e.g., pancreas) by time since diagnosis enable comparisons across the cancer care trajectory by MA vs. FFS coverage.ConclusionsSEER-CAHPS is a valuable resource for information about Medicare beneficiaries' experiences of care across different diagnoses and treatment modalities, and enables comparisons by type of insurance.

ImportanceShared decision making is associated with improved patient-reported outcomes of cancer treatment, but not all patients prefer to participate in medical decisions. Results from studies of the effect of matching between actual and preferred medical decision roles on patients' perceptions of care quality have been conflicting.ObjectivesTo determine whether shared decision making was associated with patient ratings of care quality and physician communication and whether patients' preferred decision roles modified those associations.Design, setting, and participantsWe performed a population- and health system-based survey of participants in the Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) study diagnosed with lung and/or colorectal cancer between 2003 and 2005 (56% with colorectal cancer, 40% with non-small-cell lung cancer, and 5% with small-cell lung cancer). The CanCORS study included 9737 patients (cooperation rate among patients contacted, 59.9%) treated in integrated care delivery systems, academic institutions, private offices, and Veterans Affairs hospitals. The medical records were abstracted between October 11, 2005, and April 30, 2009; all analyses were conducted between 2013 and 2014.InterventionsWe surveyed patients specifically about their preferred roles in cancer treatment decisions and their actual roles in decisions about surgery, chemotherapy, and radiation therapy. We analyzed the responses of 5315 patients who completed baseline surveys and reported decision roles for a total of 10 817 treatment decisions and assessed associations of patients' decision roles with patient-reported quality of care and physician communication.Main outcomes and measuresThe outcomes (identified before data collection) included patient-reported excellent quality of care and top ratings (highest score) on a physician communication scale.ResultsAfter adjustment, patients describing physician-controlled (vs shared) decisions were less likely to report excellent quality of care (odds ratio [OR], 0.64; 95% CI, 0.54-0.75; P

BACKGROUND: Shared decision-making is an important component of patient-centered care and is associated with improved outcomes. To the authors' knowledge, little is known concerning the extent and predictors of the involvement of a patient's family in decisions regarding cancer treatments. METHODS: The Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium is a large, multiregional, prospective cohort study of the cancer care and outcomes of patients with lung and colorectal cancer. Participants reported the roles of their families in decision-making regarding treatment. Multinomial logistic regression was used to assess patient factors associated with family roles in decisions. RESULTS: Among 5284 patients, 80 (1.5%) reported family-controlled decisions, with the highest adjusted rates (12.8%) noted among non-English-speaking Asians. Among the 5204 remaining patients, 49.4% reported equally sharing decisions with family, 22.1% reported some family input, and 28.5% reported little family input. In adjusted analyses, patients who were married, female, older, and insured more often reported equally shared decisions with family (all P

ContextRelatively few data are available about symptoms among cancer patients.ObjectivesTo describe the prevalence and severity of symptoms among a large, representative cohort of newly diagnosed cancer patients.MethodsWe collected survey data about symptoms (pain, fatigue, depression, nausea/vomiting, cough, dyspnea, and diarrhea) from 5422 patients with incident lung and colorectal cancer from the diverse, nationally representative Cancer Care Outcomes Research and Surveillance Consortium cohort. We described the prevalence of any symptoms and moderate/severe symptoms approximately four to six months after diagnosis. We used logistic regression to identify patient and clinical characteristics associated with symptoms, and calculated adjusted proportions of patients with symptoms.ResultsIn total, 5067 (93.5%) patients reported at least one symptom in the four weeks before their survey, with 51% reporting at least one moderate/severe symptom. Lung cancer patients reported more symptoms than colorectal cancer patients. Patients who received treatment or had more comorbidities were more likely to report symptoms. For example, after adjustment, patients who received chemotherapy during the six weeks before the survey were more likely than others to report at least one symptom (97.3% vs. 90.8%, P

PurposeWe examined racial and ethnic disparities in patient-provider communication (PPC), perceived care quality, and patient activation among long-term cancer survivors.MethodsIn 2005 to 2006, survivors of breast, prostate, colorectal, ovarian, and endometrial cancers completed a mailed survey on cancer follow-up care. African American, Asian/Pacific Islander (Asian), Hispanic, and non-Hispanic white (white) survivors who had seen a physician for follow-up care in the past 2 years (n = 1,196) composed the analytic sample. We conducted linear and logistic regression analyses to identify racial and ethnic differences in PPC (overall communication and medical test communication), perceived care quality, and patient activation in clinical care (self-efficacy in medical decisions and perceived control). We further examined the potential contribution of PPC to racial and ethnic differences in perceived care quality and patient activation.ResultsCompared with white survivors (mean score, 85.16), Hispanic (mean score, 79.95) and Asian (mean score, 76.55) survivors reported poorer overall communication (P = .04 and P < .001, respectively), and Asian survivors (mean score, 79.97) reported poorer medical test communication (P = .001). Asian survivors were less likely to report high care quality (odds ratio, 0.47; 95% CI, 0.30 to 0.72) and reported lower self-efficacy in medical decisions (mean score, 74.71; P < .001) compared with white survivors (mean score, 84.22). No disparity was found in perceived control. PPC was positively associated with care quality (P < .001) and self-efficacy (P < .001). After adjusting for PPC and other covariates, when compared with whites, Asian disparities remained significant.ConclusionAsian survivors report poorer follow-up care communication and care quality. More research is needed to identify contributing factors beyond PPC, such as cultural influences and medical system factors.

BackgroundClinical trials are essential to establish the effectiveness of new cancer therapies, but less than 5% of adults with cancer enroll in trials. In addition to ineligibility or lack of available trials, barriers to enrollment may include limited patient awareness about the option of participation.MethodsWe surveyed a multiregional cohort of patients with lung or colorectal cancer (or their surrogates) three to six months after diagnosis. We assessed whether respondents reported learning that clinical trial participation might be an option, and, if so, with whom they discussed trials. We used logistic regression to assess the association of patient characteristics with discussing trial participation and enrolling in trials. All statistical tests were two-sided.ResultsOf 7887 respondents, 1114 (14.1%) reported discussing the possibility of clinical trial participation; most learned about trials from their physicians, and 287 patients (3.6% of all patients, 25.8% of trial discussants) enrolled. Among 2173 patients who received chemotherapy for advanced (stage III/IV lung or stage IV colorectal) cancer, 25.7% discussed trials, and 7.6% (29.5% of trial discussants) enrolled. Discussions were less frequent among older patients, African American or Asian vs white patients, and those with lower incomes and more comorbidity. Enrollment was higher among patients reporting shared vs physician-driven decisions (all P < .05).ConclusionsIn this population-based cohort, only 14% of patients discussed participation in clinical trials. Discussions were more frequent among advanced cancer patients but were still reported by a minority of patients. Strategies to expand access to trials and facilitate patient-provider communication about participation may accelerate development of better cancer therapeutics.

Health plan member survey and cancer registry data were analyzed to understand differences in health-related quality of life (HRQOL) among cancer survivors and those without a cancer diagnosis enrolled in Medicare managed care. HRQOL was measured by the physical component summary score (PCS) and mental component summary score (MCS) of the Medical Outcomes Study SF-36, version 1.0. Cancer survivors enrolled in Medicare managed care have lower PCS and MCS scores than those enrollees who have never been diagnosed with cancer. PCS scores are worse than the MCS scores, and lowest for cancer survivors who are Hispanic, Medicaid enrollees, and those who have low income or education. HRQOL disparities are greatest among cancer survivors diagnosed with lung cancer and those with multiple primary cancer diagnoses. The influence of these variables persists when controlling for multiple variables including comorbidity status. Health plans should focus on addressing these disparities.

In cancer observational studies, differences between groups on confounding variables may have a significant effect on results when examining health outcomes. This study demonstrates the utility of propensity score matching to balance a non-cancer and cancer cohort of older adults on multiple relevant covariates. This approach matches cases to controls on a single indicator, the propensity score, rather than multiple variables. Results indicated that propensity score matching is an efficient and useful way to create a matched case-control study out of a large cohort study, and allows confidence in the strength of the observed outcomes of the study.

A diagnosis of cancer typically results in patients experiencing uncertainty about and loss of control over their situation, which in turn has a negative influence on their health outcomes. Cancer treatment further disrupts patients' quality of life. Throughout their cancer journey patients often rely on their physicians to provide them with social/interpersonal, informational, and decisional support. A growing body of research shows that physicians' communication behavior does indeed have a positive impact on patient health outcomes. Thus, the patient-physician interaction assumes great significance in the cancer care delivery process. It is encouraging to note that research in this area, largely dominated by studies conducted in primary care, is attracting the attention of cancer researchers. In an attempt to encourage and aid future research on patient-physician communication in cancer care, this paper presents a critical evaluation of existing literature on key elements of physicians' communication behavior (i.e., interpersonal communication, information exchange, and facilitation of patient involvement in decision-making). Different approaches to assessing physician behavior are discussed followed by a review of key findings linking physician behavior with cancer patient health outcomes. Finally, potential limitations of existing research are highlighted and areas for future research are identified. Keywords: Patient-physician interaction; Patient participation; Cancer; Health outcomes; Quality of life

Background Despite substantial evidence that the public wants access to Internet-based communication with health care providers, online patient-provider communication remains relatively uncommon, and few studies have examined sociodemographic and health-related factors associated with the use of online communication with health care providers at a population level. Objective The aim of the study was to use nationally representative data to report on the prevalence of and changes in use of online patient-provider communication in 2003 and 2005 and to describe sociodemographic and health-related factors associated with its use. Methods Data for this study are from two iterations of the Health Information National Trends Survey (HINTS 2003, HINTS 2005). In both years, respondents were asked whether they had ever used email or the Internet to communicate with a doctor or a doctor’s office. Adult Internet users in 2003 (n = 3982) and 2005 (n = 3244) were included in the present study. Multivariate logistic regression analysis was conducted to identify predictors for electronic communication with health care providers. Results In 2003, 7% of Internet users had communicated online with an health care provider; this prevalence significantly increased to 10% in 2005. In multivariate analyses, Internet users with more years of education, who lived in a metro area, who reported poorer health status or who had a personal history of cancer were more likely to have used online patient-provider communication. Conclusions Despite wide diffusion of the Internet, online patient-provider communication remains uncommon but is slowly increasing. Policy-level changes are needed to maximize the availability and effectiveness of online patient-provider communication for health care consumers and health care providers. Internet access remains a significant barrier to online patient-provider communication.