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.

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.

Self-reported physical activity, sitting time, and mental and physical health among older cancer survivors compared with adults without a history of cancer.

BACKGROUND: To the authors' knowledge, few studies to date have examined associations between moderate to vigorous physical activity (MVPA) and sitting time with quality of life in cancer survivors compared with a cancer-free group. The current study examined differences in global mental health (GMH) and global physical health (GPH) across levels of MVPA and sitting among cancer survivors and cancer-free participants. METHODS: Cancer Prevention Study II participants (59.9% of whom were female with an age of 77.8 ± 5.8 years) were grouped as: 1) survivors who were 1 to 5 years after diagnosis (3718 participants); 2) survivors who were 6 to 10 years after diagnosis (4248 participants); and 3) cancer-free participants (ie, no history of cancer; 69,860 participants). In 2009, participants completed MVPA, sitting, and Patient-Reported Outcomes Measurement Information System GMH/GPH surveys. Mean differences in GMH and GPH T scores across MVPA (none, 0 to <7.5, 7.5 to <15, 15 to <22.5, and ≥22.5 metabolic equivalent [MET]-hours/week) and sitting (0 to <3, 3 to <6, and ≥6 hours/day) were assessed using multivariate generalized linear models. RESULTS: The mean GMH and GPH scores were statistically significantly higher in cancer-free participants compared with cancer survivor groups, although the differences were not clinically meaningful (mean difference of 0.52 for GMH and 0.88 for GPH). More MVPA was associated with higher GMH and GPH scores for all 3 groups (P for trend <.001), and differences between the least and most active participants were found to be clinically meaningful (mean differences of ≥4.34 for GMH and ≥6.39 for GPH). Similarly, a lower duration of sitting was associated with higher GMH and GPH scores for all groups (P for trend <.001), with clinically meaningful differences observed between the least and most sedentary participants (mean differences of ≥2.74 for GMH and ≥3.75 for GPH). CONCLUSIONS: The findings of the current study provide evidence of the importance of increased MVPA and decreased sitting for improved health in older adults with or without a prior cancer diagnosis.

Effectiveness trial of an online self-help intervention for sexual problems after cancer.

Sexual dysfunction affects over 60% of cancer survivors. Internet interventions have improved sexual function, but with considerable clinician guidance, restricting scalability. This pragmatic trial evaluated an online, self-help intervention. As with many unguided digital interventions, attrition was high. Given low numbers in other groups, this paper focuses on 30% of female patient participants who completed 3-month questionnaires and visited the intervention site (N = 60). Benefits included increased sexually active individuals at follow-up (p < 0.001, Effect size = 0.54), improved sexual function (p < 0.001, Effect size = -0.76, N = 41), and increased use of sexual aids (p = 0.01, Effect size=-0.14, N = 58). The intervention has been revised to improve patient engagement.

Investigating relationships among cancer survivors' engagement in an online support community, social support perceptions, well-being, and moderating effects of existing (offline) social support.

PURPOSE: Socially supportive relationships help cancer survivors cope with their diagnosis and may improve quality of life; however, many survivors report unmet support and information needs. Online communities of survivors may address these needs, but research on their benefits have been equivocal. This cross-sectional, self-report study investigated relationships among cancer survivors' level of engagement in an online survivor community (The American Cancer Society Cancer Survivors Network®; CSN), perceptions of emotional/informational support available from online communities ("online social support"), well-being, and moderating effects of "offline social support." METHODS: Participants were 1255 registered users of the CSN who completed surveys between 2013 and 2014. Three types of engagement with the CSN-social/communal, interpersonal communication, and informational/search engagement-were identified through principal components analysis. Regression analyses examined hypotheses. RESULTS: More frequent social/communal and interpersonal communication engagement were associated with increased online social support (p < .0001), and the relationship between interpersonal communication engagement and online social support was strongest for survivors reporting lower offline social support (interaction ß = - .35, p < .001). Greater online social support was associated with increased well-being, but only among survivors reporting low offline social support (interaction ß = - .35, p < .0001). CONCLUSIONS: Engagement in online survivor communities may increase support perceptions that promote well-being, but benefits may accrue more to survivors reporting low offline social support. IMPLICATIONS FOR CANCER SURVIVORS: Newly diagnosed cancer survivors, particularly those with unmet emotional/informational support needs, should be given the opportunity to communicate with other survivors through online survivor support networks.

Research Participants' Perspectives on Using an Electronic Portal for Engagement and Data Collection: Focus Group Results From a Large Epidemiologic Cohort.

BACKGROUND: Epidemiologic cohort studies have begun to leverage electronic research participant portals to facilitate data collection, integrate wearable technologies, lower costs, and engage participants. However, little is known about the acceptability of portal use by research participants. OBJECTIVE: The aim of this study is to conduct focus groups among a sample of Cancer Prevention Study-3 (CPS-3) participants to better understand their preferences and concerns about research portals. METHODS: CPS-3 participants were stratified based on sex, race and ethnicity, age, and cancer status, and randomly invited to participate. Focus groups used an exploratory case design with semistructured guides to prompt discussion. Using a constant comparison technique, transcripts were assigned codes to identify themes. RESULTS: Participants (31/59, 52% women; 52/59, 88% White/non-Latinx) were favorably disposed toward using a research participant portal to take surveys, communicate with the study staff, and upload data. Most participants indicated that a portal would be beneficial and convenient but expressed concerns over data safety. Participants stressed the importance of an easy-to-use and trustworthy portal that is compatible with mobile devices. CONCLUSIONS: In addition to being beneficial to researchers, portals may also benefit participants as long as the portals are secure and simple. Participants believe that portals can provide convenient ways to report data and remain connected to the study.

Concordance of cancer registry and self-reported race, ethnicity, and cancer type: a report from the American Cancer Society's studies of cancer survivors.

PURPOSE: To examine the concordance between cancer registry and self-reported data for race, Hispanic ethnicity, and cancer type in the American Cancer Society's Studies of Cancer Survivors (SCS) I and II. METHODS: We calculated sensitivity, specificity, positive predictive value, and Kappa statistics for SCS-I and II. The gold standard for cancer type was registry data and for race and ethnicity was self-reported questionnaire data. RESULTS: Among 6,306 survivors in SCS-I and 9,170 in SCS-II, overall agreement (Kappa) for cancer type was 0.98 and 0.99, respectively. Concordance was strongest for breast and prostate cancer (Sensitivity ≥ 0.98 in SCS-I and II). For race, Kappa was 0.85 (SCS-I) and 0.93 (SCS-II), with strong concordance for white (Sensitivity = 0.95 in SCS-I and 0.99 in SCS-II) and black survivors (Sensitivity = 0.94 in SCS-I and 0.99 in SCS-II), but weak concordance for American Indian/Alaska Native (Sensitivity = 0.23 in SCS-I and 0.19 in SCS-II) and Asian/Pacific Islander survivors (Sensitivity = 0.43 in SCS-I and 0.87 in SCS-II). Agreement was moderate for Hispanic ethnicity (Kappa = 0.73 and 0.71; Sensitivity = 0.74 and 0.76, in SCS-I and SCS-II, respectively). CONCLUSIONS: We observed strong concordance between cancer registry data and self-report for cancer type in this national sample. For race and ethnicity, however, concordance varied significantly, with the poorest concordances observed for American Indian/Alaska Native and Asian/Pacific Islander survivors. Ensuring accurate recording of race/ethnicity data in registries is crucial for monitoring cancer trends and addressing cancer disparities among cancer survivors.

Understanding Long-Term Cancer Survivors' Preferences for Ongoing Medical Care.

BACKGROUND: Due to risk for treatment-related late effects and concerns about cancer recurrence, long-term cancer survivors have unique medical needs. Survivors' preferences for care may influence adherence and care utilization. OBJECTIVE: To describe survivors' preferences for care and factors associated with preferred and actual care. DESIGN: Cross-sectional analysis of participants in a longitudinal study using mailed questionnaires. PARTICIPANTS: Survivors of ten common cancers (n = 2,107, mean years from diagnosis 8.9). MAIN MEASURES: (1) Survivors' preferences for primary care physician (PCP) and oncologist responsibilities across four types of care: cancer follow-up, cancer screening, preventive health, and comorbid conditions. (2) Survivor-reported visits to PCPs and oncologists. KEY RESULTS: The response rate was 42.1%. Most long-term survivors preferred PCPs and oncologists share care for cancer follow-up (63%) and subsequent screening (65%), while preferring PCP-led preventive health (77%) and comorbid condition (83%) care. Most survivors (88%) preferred oncologists involved in cancer follow-up care, but only 60% reported an oncologist visit in the previous 4 years, and 96% reported a PCP visit in the previous 4 years. In multivariable regressions, those with higher fear of cancer recurrence were less likely to prefer PCP-led cancer follow-up care (OR = 0.96, CI = 0.93-0.98), as did survivors with advanced cancer stage (OR = 0.56, CI = 0.39-0.79). Those with higher fear of recurrence (OR = 1.03, CI = 1.01-1.04) or who preferred oncologist-led cancer follow-up care (OR = 2.08, CI = 1.63-2.65) had greater odds of seeing an oncologist in the last 4 years. CONCLUSIONS: Most cancer survivors preferred PCPs and oncologists share care for cancer follow-up and screening, yet many had not seen an oncologist recently. Survivors preferred PCP-led care for other preventive services and management of comorbid conditions. These findings highlight the important role PCPs could play in survivor care, suggesting the need for PCP-oriented education and health system policies that support high-quality PCP-led survivor care.

Cancer treatment and survivorship statistics, 2012.

Although there has been considerable progress in reducing cancer incidence in the United States, the number of cancer survivors continues to increase due to the aging and growth of the population and improvements in survival rates. As a result, it is increasingly important to understand the unique medical and psychosocial needs of survivors and be aware of resources that can assist patients, caregivers, and health care providers in navigating the various phases of cancer survivorship. To highlight the challenges and opportunities to serve these survivors, the American Cancer Society and the National Cancer Institute estimated the prevalence of cancer survivors on January 1, 2012 and January 1, 2022, by cancer site. Data from Surveillance, Epidemiology, and End Results (SEER) registries were used to describe median age and stage at diagnosis and survival; data from the National Cancer Data Base and the SEER-Medicare Database were used to describe patterns of cancer treatment. An estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012, and by January 1, 2022, that number will increase to nearly 18 million. The 3 most prevalent cancers among males are prostate (43%), colorectal (9%), and melanoma of the skin (7%), and those among females are breast (41%), uterine corpus (8%), and colorectal (8%). This article summarizes common cancer treatments, survival rates, and posttreatment concerns and introduces the new National Cancer Survivorship Resource Center, which has engaged more than 100 volunteer survivorship experts nationwide to develop tools for cancer survivors, caregivers, health care professionals, advocates, and policy makers.

Exploring measurement invariance by gender in the profile of mood states depression subscale among cancer survivors.

PURPOSE: The Profile of Mood States-Short Form (POMS-SF) is a well-validated tool commonly used in medical/clinical research. Less attention has been paid to the measurement invariance of the POMS-the degree to which the structure and items behave similarly for different groups (e.g., women and men). This study investigated the measurement invariance of the POMS Depression subscale across gender groups in a sample of cancer survivors. METHODS: The POMS Depression subscale has 8 items (Unhappy, Sad, Blue, Hopeless, Discouraged, Miserable, Helpless, and Worthless). Invariance was measured using multigroup confirmatory factor analysis. This study used data from American Cancer Society Studies of Cancer Survivors-II, a population-based survey of adult cancer survivors (n = 9170). RESULTS: We found factor structures and factor loadings were invariant for gender groups, but moderate differential item functioning (DIF) in the question containing the word blue. CONCLUSION: With regard to cancer survivors' gender, we found the Depression subscale of the POMS-SF had configural invariance, and partial metric and scalar invariance. This suggests that results should be interpreted with caution, especially when gender is considered important. More broadly, our finding suggests that questions with the word blue may introduce DIF into other measures of depressive mood. More research is needed to replicate these findings in other samples and with other instruments.

The rationale for patient-reported outcomes surveillance in cancer and a reproducible method for achieving it.

Patient-reported outcomes (PROs) measure quality of life, symptoms, patient functioning, and patient perceptions of care; they are essential for gaining a full understanding of cancer care and the impact of cancer on people's lives. Repeatedly captured facility-level and/or population-level PROs (PRO surveillance) could play an important role in quality monitoring and improvement, benchmarking, advocacy, policy making, and research. This article describes the rationale for PRO surveillance and the methods of the Patient Reported Outcomes Symptoms and Side Effects Study (PROSSES), which is the first PRO study to use the American College of Surgeons Commission on Cancer's Rapid Quality Reporting System to identify patients and manage study data flow. The American Cancer Society, the National Cancer Institute, the Commission on Cancer, and RTI International collaborated on PROSSES. PROSSES was conducted at 17 cancer programs that participated in the National Cancer Institute Community Cancer Centers Program among patients diagnosed with locoregional breast or colon cancer. The methods piloted in PROSSES were successful as demonstrated by high eligibility (93%) and response (61%) rates. Differences in clinical and demographic characteristics between respondents and nonrespondents were mostly negligible, with the exception that non-white individuals were somewhat less likely to respond. These methods were consistent across cancer centers and reproducible over time. If repeated and expanded, they could provide PRO surveillance data from patients with cancer on a national scale.

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.

The development and acceptability of symptom management quality improvement reports based on patient-reported data: an overview of methods used in PROSSES.

PURPOSE: Patient experiences with symptom care need to be assessed and documented to ensure successful management of cancer-related symptoms. This paper details one method for creating symptom management quality improvement (SMQI) reports, including case-mix adjustment of patient-reported measures. Qualitative data regarding the acceptability of these reports at participating cancer centers (CCs) are also provided. METHODS: Data were collected from 2226 patients treated at 16 CCs via mailed/Web questionnaires. Twelve items assessing patient perceptions of symptom management-pain, fatigue, emotional distress-served as key quality indicators. Medico-demographic variables suitable for case-mix adjustment were selected using an index score combining predictive power and heterogeneity across CCs. SMQI reports were designed with staff feedback and produced for each CC, providing crude and adjusted CC-specific rates, along with study-wide rates for comparison purposes. RESULTS: Cancer type and participant educational level were selected for case-mix adjustment based upon high index scores. The Kendall rank correlation coefficient showed that case-mix adjustments changed the ranking of CCs on the key quality indicators (% Δ rank range: 5-22 %). The key quality indicators varied across CCs (all p < 0.02). SMQI reports were well received by CC staff, who described plans to share them with key personnel (e.g., cancer committee, navigator). CONCLUSIONS: This paper provides one method for creating hospital-level SMQI reports, including case-mix adjustment. Variation between CCs on key quality indicators, even after adjustment, suggested room for improvement. SMQI reports based on patient-reported data can inform and motivate efforts to improve care through professional/patient education and applying standards of care.

The relation between cancer patient treatment decision-making roles and quality of life.

BACKGROUND: The objective of this study was to explore relations between patient role preferences during the cancer treatment decision-making process and quality of life (QOL). METHODS: One-year cancer survivors completed a survey in 2000 as part of a larger survey conducted by the American Cancer Society. The current report was based on survey respondents from Minnesota (response rate, 37.4%). Standardized measures included the Profile of Mood States (scores were converted to have a range, from 0 to 100, with 100 indicating the best mood), the Medical Outcomes Survey 36-item short-form health survey (SF-36) (standardized scores), and the Control Preferences Scale. Patients' actual and preferred role preference distributions and concordance between roles were compared with QOL scores using 2-sample t test methodology. RESULTS: The actual role of survivors (n = 594) in cancer care was 33% active, 50% collaborative, and 17% passive. Their preferred role was 35% active, 53% collaborative, and 13% passive. Overall, 88% of survivors had concordant preferred and actual roles. Survivors who had concordant roles had higher SF-36 Physical Component Scale (PCS) scores (P < .01), higher vitality (P = .01), less fatigue (P < .01), less confusion (P = .01), less anger (P = .046), and better overall mood (P = .01). These results were similar among both women and younger individuals (aged <60 years). Survivors who had active actual roles had higher PCS scores (P < .01), less tension (P = .04), and higher vitality (P = .04) than survivors who were either collaborative or passive. No differences existed in QOL scores according to preferred role. CONCLUSIONS: Survivors who experienced discordance between their actual role and their preferred role reported substantial QOL deficits in both physical and emotional domains. These results indicate the need to support patient preferences.

Population-based cancer registries for quality-of-life research: a work-in-progress resource for survivorship studies?

BACKGROUND: With the increasing number and diversity of cancer survivors, studies of survivors' physical, emotional, and social health and well being are of growing importance. Population-based cancer registries, which collect data on incident cases, can play an important role in quality-of-life (QoL) studies. In this review, the authors provide an overview of QoL studies that have used cancer registry data in this emerging area of research. METHODS: Publication databases were searched for relevant peer-reviewed original articles published between 2001 and mid-2011. Inclusion criteria were articles published in English that used cancer registries as the sampling frame and/or that used registry data in analyses with QoL data. All included articles were assessed on the quality of information provided, cancer registry procedures, and study design. RESULTS: In total, 173 articles from 13 countries were reviewed, and a large proportion were from the United States (n = 72) and Europe (n = 70). Fourteen different malignancies were studied, and the most frequent were breast cancer. Most studies focused on adult survivors, and only 4 focused on the elderly (aged >70 years). Of the reviewed articles, 110 (64%) provided a good amount of information on the cancer registry. Information less frequently reported included mainly follow-up of vital status and characteristics of respondents/nonrespondents. CONCLUSIONS: QoL studies increasingly use population-based registries, which provide important clinical variables and an excellent sampling frame for identifying subgroups. Until now, most studies have tended to focus on more prevalent cancers, and surprisingly few studies have focused on QoL of elderly survivors, who remain understudied in clinical trials.

Do additional recontacts to increase response rate improve physician survey data quality?

BACKGROUND: Although response rates for physician surveys have been decreasing, it is not clear whether this trend is associated with an increase in survey nonresponse bias. One means for assessing potential bias is to conduct a level-of-effort analysis that compares data estimates for respondents interviewed during the first recruitment contact to respondents interviewed at later recontact cycles. METHODS: We compared early and later responders within the Survey of Physician Attitudes Regarding the Care of Cancer Survivors with respect to both demographic characteristics and aggregate survey responses to items on survivor care knowledge, attitudes, and practices. RESULTS: Accumulating additional completions across each of 4 respondent contact attempts improved weighted response rates (35.0%, 46.9%, 52.3%, and 57.6%, respectively). However, the majority of estimates for analyzed variables remained relatively unchanged over additional cycles of recontact. CONCLUSIONS: We conclude that additional respondent recontact attempts, especially beyond a single recontact, had little influence on key data distributions, suggesting that these were ineffective in reducing nonresponse bias. Further, the conduct of additional recruitment recontacts was an inefficient means for increasing statistical power. For the conduct of physician surveys, a practice that may in some cases be cost-effective, while also controlling total survey error, is to establish a larger initial sample; to either eliminate nonresponse follow-up or to limit this to one recontact; and to accept a somewhat lower final overall survey response rate.

Social support provided by and strain experienced by African-American cancer caregivers.

BACKGROUND: Cancer is the second most common condition among people over 50, behind only dementia, associated with caregiving. As treatments improve, the number of cancer caregivers will increase. However, there is limited research about African-American cancer caregivers (AACCs). PURPOSE: The purpose of this mixed methods study is to describe (1) the types of social support provided by and (2) the levels of strain reported by AACCs. METHODS: Cancer patients from a regional safety net hospital nominated family caregivers who helped them after their cancer diagnosis. Consented caregivers were interviewed in the waiting room while the patient received treatment or later by phone using the Modified Caregiver Strain Index (MCSI), five structured interview questions, and demographic questions-20 min. Responses to the interview questions were processed using Miles and Huberman's content analysis guide. Descriptive statistics for demographics and the MCSI were performed using SPSS. RESULTS: Of the 45 AACCs, 64 % had medical conditions. Caregivers reported patients' pain (31 %), stress (9 %), and nausea (7 %) as the most common symptoms. AACCs most commonly provided instrumental (67 %) or emotional (42 %) support; spiritual (20 %) and informational (20 %) support were less common. CONCLUSION: Emphasis is needed in providing care assistance information to the AACCs to ensure effective support for their loved ones. This study highlights areas of support where assistance can be useful among AACCs.

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.

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.

Differences between primary care physicians' and oncologists' knowledge, attitudes and practices regarding the care of cancer survivors.

BACKGROUND: The growing number of cancer survivors combined with a looming shortage of oncology specialists will require greater coordination of post-treatment care responsibilities between oncologists and primary care physicians (PCPs). However, data are limited regarding these physicians' views of cancer survivors' care. OBJECTIVE: To compare PCPs and oncologists with regard to their knowledge, attitudes, and practices for follow-up care of breast and colon cancer survivors. DESIGN AND SUBJECTS: Mailed questionnaires were completed by a nationally representative sample of 1,072 PCPs and 1,130 medical oncologists in 2009 (cooperation rate = 65%). Sampling and non-response weights were used to calculate estimates to reflect practicing US PCPs and oncologists. MAIN MEASURES: PCPs and oncologists reported their 1) preferred model for delivering cancer survivors' care; 2) assessment of PCPs' ability to perform follow-up care tasks; 3) confidence in their knowledge; and 4) cancer surveillance practices. KEY RESULTS: Compared with PCPs, oncologists were less likely to believe PCPs had the skills to conduct appropriate testing for breast cancer recurrence (59% vs. 23%, P < 0.001) or to care for late effects of breast cancer (75% vs. 38%, P < 0.001). Only 40% of PCPs were very confident of their own knowledge of testing for recurrence. PCPs were more likely than oncologists to endorse routine use of non-recommended blood and imaging tests for detecting cancer recurrence, with both groups departing substantially from guideline recommendations. CONCLUSION: There are significant differences in PCPs' and oncologists' knowledge, attitudes, and practices with respect to care of cancer survivors. Improving cancer survivors' care may require more effective communication between these two groups to increase PCPs' confidence in their knowledge, and must also address oncologists' attitudes regarding PCPs' ability to care for cancer survivors.