Oncology team perspectives on distress screening: a multisite study of a well-established use of patient-reported outcomes for clinical assessment.

PURPOSE: Cancer care team attitudes towards distress screening are key to its success and sustainability. Previous qualitative research has interviewed staff mostly around the startup phase. We evaluate oncology teams' perspectives on psychosocial distress screening, including perceived strengths and challenges, in settings where it has been operational for years. METHODS: We conducted, transcribed, and analyzed semi-structured interviews with 71 cancer care team members (e.g., MDs, RNs, MSWs) at 18 Commission on Cancer-accredited cancer programs including those serving underrepresented populations. RESULTS: Strengths of distress screening identified by participants included identifying patient needs and testing provider assumptions. Staff indicated it improved patient-provider communication and other aspects of care. Challenges to distress screening included patient barriers (e.g., respondent burden) and lack of electronic system interoperability. Participants expressed the strengths of distress screening (n = 291) more than challenges (n = 86). Suggested improvements included use of technology to collect data, report results, and make referrals; complete screenings prior to appointments; longitudinal assessment; additional staff training; and improve resources to address patient needs. CONCLUSION: Cancer care team members' perspectives on well-established distress screening programs largely replicate findings of previous studies focusing on the startup phase, but there are important differences: team members expressed more strengths than challenges, suggesting a positive attitude. While our sample described many challenges described previously, they did not indicate challenges with scoring and interpreting the distress screening questionnaire. The differences in attitudes expressed in response to mature versus startup implementations provide important insights to inform efforts to sustain and optimize distress screening.

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

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.

Sociodemographic inequalities in barriers to cancer pain management: a report from the American Cancer Society's Study of Cancer Survivors-II (SCS-II).

OBJECTIVE: Research has increasingly documented sociodemographic inequalities in the assessment and management of cancer-related pain. Most studies have focused on racial/ethnic disparities, while less is known about the impact of other sociodemographic factors, including age and education. We analyzed data from a large, national, population-based study of cancer survivors to examine the influence of sociodemographic factors, and physical and mental health comorbidities on barriers to cancer pain management. METHODS: The study included data from 4707 cancer survivors in the American Cancer Society's Study of Cancer Survivors-II, who reported experiencing pain from their cancer. A multilevel, socioecological, conceptual framework was used to generate a list of 15 barriers to pain management, representing patient, provider, and system levels. Separate multivariable logistic regressions for each barrier identified sociodemographic and health-related inequalities in cancer pain management, controlling for years since diagnosis, disease stage, and cancer treatment. RESULTS: Two-thirds of survivors reported at least 1 barrier to pain management. While patient-related barriers were most common, the greatest disparities were noted in provider- and system-level barriers. Specifically, inequalities by race/ethnicity, education, age, and physical and mental health comorbidities were observed. CONCLUSION: Findings indicate survivors who were nonwhite, less educated, older, and/or burdened by comorbidities were most adversely affected. Future efforts in research, clinical practice, and policy should identify and/or implement new strategies to address sociodemographic inequalities in cancer pain management.

An action plan for translating cancer survivorship research into care.

To meet the complex needs of a growing number of cancer survivors, it is essential to accelerate the translation of survivorship research into evidence-based interventions and, as appropriate, recommendations for care that may be implemented in a wide variety of settings. Current progress in translating research into care is stymied, with results of many studies un- or underutilized. To better understand this problem and identify strategies to encourage the translation of survivorship research findings into practice, four agencies (American Cancer Society, Centers for Disease Control and Prevention, LIVE STRONG: Foundation, National Cancer Institute) hosted a meeting in June, 2012, titled: "Biennial Cancer Survivorship Research Conference: Translating Science to Care." Meeting participants concluded that accelerating science into care will require a coordinated, collaborative effort by individuals from diverse settings, including researchers and clinicians, survivors and families, public health professionals, and policy makers. This commentary describes an approach stemming from that meeting to facilitate translating research into care by changing the process of conducting research-improving communication, collaboration, evaluation, and feedback through true and ongoing partnerships. We apply the T0-T4 translational process model to survivorship research and provide illustrations of its use. The resultant framework is intended to orient stakeholders to the role of their work in the translational process and facilitate the transdisciplinary collaboration needed to translate basic discoveries into best practices regarding clinical care, self-care/management, and community programs for cancer survivors. Finally, we discuss barriers to implementing translational survivorship science identified at the meeting, along with future directions to accelerate this process.

Provision and discussion of survivorship care plans among cancer survivors: results of a nationally representative survey of oncologists and primary care physicians.

PURPOSE: Survivorship care planning should involve discussions between providers and cancer survivors to address survivors' needs and optimize adherence. We examined the frequency and factors associated with oncologists' and primary care physicians' (PCPs) reports of provision of written survivorship care plans (SCPs) and discussion of survivorship care recommendations with survivors. METHODS: A nationally representative sample of 1,130 oncologists and 1,020 PCPs was surveyed about survivorship care practices with survivors. Logistic regression models predicted multilevel factors associated with providing SCPs or discussing recommendations with survivors. RESULTS: Although a majority of oncologists (64%) reported always/almost always discussing survivorship care recommendations with survivors, fewer also discussed who survivors should see for cancer-related and other follow-up care (32%); fewer still also provided a written SCP to the survivor (< 5%). Survivorship care recommendations and provider responsibility were not regularly discussed by PCPs and survivors (12%). Oncologists who reported detailed training about late and long-term effects of cancer were more likely to provide written SCPs (odds ratio [OR], 1.73; 95% CI, 1.22 to 2.44) and discuss survivorship care planning with survivors (OR, 2.02; 95% CI, 1.51 to 2.70). PCPs who received SCPs from oncologists were 9× more likely (95% CI, 5.74 to 14.82) to report survivorship discussions with survivors. CONCLUSION: A minority of both PCPs and oncologists reported consistently discussing and providing SCPs to cancer survivors. Training and knowledge specific to survivorship care and coordinated care between PCPs and oncologists were associated with increased survivorship discussions with survivors. These nationally representative data provide a useful benchmark to assess implementation of new efforts to improve the follow-up care of survivors.

Assessment of the status of a National Action Plan for Cancer Survivorship in the USA.

PURPOSE: There are currently more than 12 million cancer survivors in the USA. Survivors face many issues related to cancer and treatment that are outside the purview of the clinical care system. Therefore, understanding and providing for the evolving needs of cancer survivors offers challenges and opportunities for the public health system. In 2004, the Centers for Disease Control and Prevention and the Lance Armstrong Foundation, now the Livestrong Foundation, partnered with national cancer survivorship organizations to develop the National Action Plan for Cancer Survivorship (NAPCS). This plan outlines public health strategies to address the needs of cancer survivors. To date, no assessment of NAPCS strategies and their alignment with domestic cancer survivorship activities has been conducted. METHODS: The activities of five national organizations with organized public health agendas about cancer survivorship were assessed qualitatively during 2003-2007. Using the NAPCS as an organizing framework, interviews were conducted with key informants from all participating organizations. Interview responses were supplemented with relevant materials from informants and reviews of the organizations' websites. RESULTS: Strategies associated with surveillance and applied research; communication, education, and training; and programs, policy, and infrastructure represent a large amount of the organizational efforts. However, there are gaps in research on preventive interventions, evaluation of implemented activities, and translation. CONCLUSIONS: Numerous NAPCS strategies have been implemented. Future efforts of national cancer survivorship organizations should include rigorous evaluation of implemented activities, increased translation of research to practice, and assessment of dissemination efforts. IMPLICATIONS FOR CANCER SURVIVORS: The results of this descriptive assessment provide cancer survivors, cancer survivorship organizations, researchers, providers, and policy makers with initial information about cancer survivorship public health efforts in the USA. Additionally, results suggest areas in need of further attention and next steps in advancing the national cancer survivorship public health agenda.

Patient-reported outcome measures suitable to assessment of patient navigation.

BACKGROUND: Patient-reported outcomes (PROs) are measures completed by patients to capture outcomes that are meaningful and valued by patients. To help standardize PRO measures in patient navigation research and program evaluation, the Patient-Reported Outcomes Working Group (PROWG) was convened as part of the American Cancer Society's National Patient Navigator Leadership Summit. METHODS: The PROWG consisted of clinicians, researchers, and program managers from a variety of perspectives who developed a set of recommended PRO measures across the cancer continuum (ie, screening, diagnostic follow-up, treatment, survivorship, end of life) as well as those useful for assessing family caregivers. Measures were recommended based on face validity, responsiveness to navigation, reliability, and construct validity in relevant populations. Other considerations included readability, existence of multiple language versions, the existence of norm groups, and respondent burden. RESULTS: The PROWG reached consensus on measures for use in the domains of treatment adherence; perceived barriers to care; satisfaction with cancer care; satisfaction with patient navigation services; working alliance with patient navigator; perceived knowledge/competence/self-efficacy; functional assessment/symptom burden; global quality of life; specific quality-of-life symptoms (eg, depression, anxiety); and perceived cultural competency of the navigator. In domains where validated measures were found lacking, recommendations were made for areas of needed scale development. CONCLUSIONS: These measures should guide research and programmatic evaluation of patient navigation.

Symptom burden in cancer survivors 1 year after diagnosis: a report from the American Cancer Society's Studies of Cancer Survivors.

BACKGROUND: Few studies have examined risk for severe symptoms during early cancer survivorship. By using baseline data from the American Cancer Society's Study of Cancer Survivors-I, the authors examined cancer survivors with high symptom burden, identified risk factors associated with high symptom burden, and evaluated the impact of high symptom burden on health-related quality of life (HRQoL) 1 year postdiagnosis. METHODS: Participants were enrolled from 11 state cancer registries approximately 1 year after diagnosis and were surveyed by telephone or mail. The outcomes measures used were the Modified Rotterdam Symptom Checklist and the Profile of Mood States-37 (to assess symptom burden) and the Satisfaction with Life Domains Scale-Cancer (to assess HRQoL). RESULTS: Of 4903 survivors, 4512 (92%) reported symptoms related to their cancer and/or its treatment. Two-step clustering yielded 2 subgroups, 1 with low symptom burden (n = 3113) and 1 with high symptom burden (n = 1399). Variables that were associated with high symptom burden included lung cancer (odds ratio [OR], 2.27), metastatic cancer (OR, 2.05), the number of comorbid conditions (OR, 1.76), remaining on active chemotherapy (OR, 1.93), younger age (OR, 2.31), lacking insurance/being underinsured (OR, 1.57), having lower income (OR, 1.61), being unemployed (OR, 1.27), and being less educated (OR, 1.29). Depression, fatigue, and pain had the greatest impact on HRQoL in survivors with high symptom burden, who also had lower HRQoL (P < .0001). CONCLUSIONS: More than 1 in 4 cancer survivors had high symptom burden 1 year postdiagnosis, even after treatment termination. These results indicate a need for continued symptom monitoring and management in early post-treatment survivorship, especially for the underserved.

Residential segregation and disparities in health-related quality of life among Black and White cancer survivors.

OBJECTIVE: Studies of health-related quality of life (HRQOL) among Black and White cancer survivors have been based on small convenience samples and yielded inconsistent results. We examined Black-White disparities in survivors' HRQOL with a population-based sample, and tested the hypothesis that area-level segregation accounts for those disparities. DESIGN: A sample of survivors of 10 types of cancer was drawn from 11 U.S. state cancer registries and surveyed 12-15 months after diagnosis. The current sample consisted of 5195 survivors (415 Black, 4780 White) who resided in 584 counties. MAIN OUTCOME MEASURES: SF-36 General Health subscale scores were used as the measure of HRQOL. RESULTS: Bivariate results revealed that Black survivors had significantly poorer HRQOL than did White survivors. Multilevel regression including individual-level (gender, age, marital status, education, cancer type, stage at diagnosis, cancer progression, comorbidities, race/ethnicity) and area-level (county segregation and poverty) variables found that HRQOL was poorer among survivors who resided in high-Black-segregated counties, whereas race/ethnicity was no longer significant. CONCLUSION: These findings indicate that Black-White disparities in HRQOL among cancer survivors might be a function, not of race/ethnicity, but of area-level variables associated with race/ethnicity. The strong role of segregation highlights the need for interventions to target Black-segregated areas.

Mass media and marketing communication promoting primary and secondary cancer prevention.

People often seek and receive cancer information from mass media (including television, radio, print media, and the Internet), and marketing strategies often inform cancer information needs assessment, message development, and channel selection. In this article, we present the discussion of a 2-hour working group convened for a cancer communications workshop held at the 2008 Society of Behavioral Medicine meeting in San Diego, CA. During the session, an interdisciplinary group of investigators discussed the current state of the science for mass media and marketing communication promoting primary and secondary cancer prevention. We discussed current research, new research areas, methodologies and theories needed to move the field forward, and critical areas and disciplines for future research.

Cancer care in the United States: identifying end-of-life cohorts.

OBJECTIVES: End-of-life care is increasingly recognized as an important part of cancer management for many patients. Current methods to measure end-of-life care are limited by difficulties in identifying cancer cohorts with administrative data. We examined several techniques of identifying end-of-life cancer cohorts with claims data that is population-based, geographically scalable, and amenable to routine updating. METHODS: Using Medicare claims for patients 65 years of age and older, four techniques for identifying end-of-life cancer cohorts were compared; one based on Part A data using a broad primary or narrow secondary diagnosis of cancer, two based on Part B data, and one combining the Part A and B methods. We tested the performance of each definition to ascertain an appropriate end-of-life cancer population. RESULTS: The combined Part A and B definition using a primary or secondary diagnosis of cancer within a window of 180 days prior to death appears to be the most accurate and inclusive in ascertaining an end-of-life cohort (78.7% attainment). CONCLUSION: Combining inpatient and outpatient claims data, and identifying cases based upon a broad primary or a narrow secondary cancer definition is the most accurate and inclusive in ascertaining an end-of-life cohort.