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.

Factors Associated With Health-Related Quality of Life Among Cancer Survivors in the United States.

Background: With increasing prevalence of cancer survivors in the United States, health-related quality of life (HRQOL) has become a major priority. We describe HRQOL in a nationally representative sample of cancer survivors and examine associations with key sociodemographic, clinical, and lifestyle characteristics. Methods: Cancer survivors, defined as individuals ever diagnosed with cancer (N = 877), were identified from the 2016 Medical Expenditure Panel Survey-Experiences with Cancer Survivorship Supplement, a nationally representative survey. Physical and mental health domains of HRQOL were measured by the Global Physical Health (GPH) and Global Mental Health (GMH) subscales of the Patient-Reported Outcomes Measurement Information System Global-10. Multivariable linear regression was used to examine associations of sociodemographic, clinical, and lifestyle factors with GPH and GMH scores. All statistical tests were 2-sided. Results: Cancer survivors' mean GPH (49.28, SD = 8.79) and mean GMH (51.67, SD = 8.38) were similar to general population means (50, SD = 10). Higher family income was associated with better GPH and GMH scores, whereas a greater number of comorbidities and lower physical activity were statistically significantly associated with worse GPH and GMH. Survivors last treated 5 years ago and longer had better GPH than those treated during the past year, and current smokers had worse GMH than nonsmokers (all ß > 3 and all P < .001). Conclusions: Cancer survivors in the United States have generally good HRQOL, with similar physical and mental health scores to the general US population. However, comorbidities, poor health behaviors, and recent treatment may be risk factors for worse HRQOL. Multimorbidity management and healthy behavior promotion may play a key role in maximizing HRQOL for cancer survivors.

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.

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.

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.

Medical conditions and physical function deficits among multiple primary cancer survivors.

PURPOSE: Survivors of multiple primary cancers make up a sizable proportion of all cancer survivors, yet little is known about the health of this population. We examined the prevalence of medical conditions and physical function deficits among multiple primary survivors compared with single primary survivors and individuals without a cancer history. METHODS: Participants were enrolled in the Cancer Prevention Study (CPS)-II Nutrition Cohort in 1992/1993. Prevalent medical conditions (diabetes, heart conditions, cerebrovascular conditions, emphysema/chronic bronchitis, osteoporosis, osteoarthritis), physical function limitations, use of a cane or walker, balance difficulties, and falls within the past year were assessed on a follow-up survey completed in 2011. We estimated age- and sex-adjusted prevalence ratios (PRs), comparing multiple primary survivors (N = 1003) to single primary survivors (N = 12,849) and participants without cancer (N = 63,578). RESULTS: The prevalence of medical conditions did not differ substantially between multiple primary survivors and either comparison group. However, multiple primary survivors were more likely to report severe limitations in physical function than the single primary (PR = 1.48 (95% CI, 1.28-1.71)) and no-cancer (PR = 1.64 (95% CI, 1.42-1.88)) groups. Using a cane or walker and balance difficulties were also significantly more common among multiple primary survivors. CONCLUSIONS: Despite a similar prevalence of comorbid medical conditions, severe functional limitations were significantly more common among multiple primary survivors than single primary survivors or individuals without cancer. IMPLICATIONS FOR CANCER SURVIVORS: Assessment of functional status and treatment of physical deficits may be an especially critical component of care for older patients with a history of multiple cancer diagnoses.

Cancer-related problems, sleep quality, and sleep disturbance among long-term cancer survivors at 9-years post diagnosis.

OBJECTIVE: To estimate the prevalence of sleep difficulties in a large cohort of long-term cancer survivors (>5 years) and examine associations with four domains of cancer-related problems. METHODS: This study analyzed a nationwide sample (N = 1903) of cancer survivors (31% Breast; 20% prostate) at nine years (m = 8.9 sd = 0.6) post-diagnosis with a mean age of 64.5 years. Sleep quality and sleep disturbance were assessed by the Pittsburgh Sleep Quality Index. Multivariable logistic regression models examined associations between cancer-related problems (physical distress, emotional distress, economic distress, and fear of recurrence) and sleep difficulty (poor vs. low sleep quality and high vs. low sleep disturbance). Odds ratios (OR) and 95% confidence intervals (CI) were estimated, adjusting for medico-demographics, behavioral factors, and sleep medication use. RESULTS: In sum, 20% percent of the sample reported poor sleep quality, 51% reported high sleep disturbance and 17% reported both. Sleep medication use was reported by 28% of the total sample. All four domains of cancer-related problems were significantly associated with poor sleep quality and high sleep disturbance. Above median cancer-related physical distress had the strongest association with both poor sleep quality (OR = 3.42; 95% CI = 2.44-4.79) and high sleep disturbance (OR = 4.06; 95% CI = 3.09-5.34). CONCLUSIONS: Among nine-year cancer survivors, multiple domains of cancer-related health problems were associated with sleep difficulties. Knowledge of the relationship between cancer-related problems and sleep may aid clinicians during the evaluation and treatment of sleep problems in long-term cancer survivors. Future research should utilize prospective data to better understand the causal nature of the associations.

Performance Measures Based on How Adults With Cancer Feel and Function: Stakeholder Recommendations and Feasibility Testing in Six Cancer Centers.

PURPOSE: Patient-reported outcome measures (PROMs) that assess how patients feel and function have potential for evaluating quality of care. Stakeholder recommendations for PRO-based performance measures (PMs) were elicited, and feasibility testing was conducted at six cancer centers. METHODS: Interviews were conducted with 124 stakeholders to determine priority symptoms and risk adjustment variables for PRO-PMs and perceived acceptability. Stakeholders included patients and advocates, caregivers, clinicians, administrators, and thought leaders. Feasibility testing was conducted in six cancer centers. Patients completed PROMs at home 5-15 days into a chemotherapy cycle. Feasibility was operationalized as ≥ 75% completed PROMs and ≥ 75% patient acceptability. RESULTS: Stakeholder priority PRO-PMs for systemic therapy were GI symptoms (diarrhea, constipation, nausea, vomiting), depression/anxiety, pain, insomnia, fatigue, dyspnea, physical function, and neuropathy. Recommended risk adjusters included demographics, insurance type, cancer type, comorbidities, emetic risk, and difficulty paying bills. In feasibility testing, 653 patients enrolled (approximately 110 per site), and 607 (93%) completed PROMs, which indicated high feasibility for home collection. The majority of patients (470 of 607; 77%) completed PROMs without a reminder call, and 137 (23%) of 607 completed them after a reminder call. Most patients (72%) completed PROMs through web, 17% paper, or 2% interactive voice response (automated call that verbally asked patient questions). For acceptability, > 95% of patients found PROM items to be easy to understand and complete. CONCLUSION: Clinicians, patients, and other stakeholders agree that PMs that are based on how patients feel and function would be an important addition to quality measurement. This study also shows that PRO-PMs can be feasibly captured at home during systemic therapy and are acceptable to patients. PRO-PMs may add value to the portfolio of PMs as oncology transitions from fee-for-service payment models to performance-based care that emphasizes outcome measures.

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.

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.

Seekers, Providers, Welcomers, and Storytellers: Modeling Social Roles in Online Health Communities.

Participants in online communities often enact different roles when participating in their communities. For example, some in cancer support communities specialize in providing disease-related information or socializing new members. This work clusters the behavioral patterns of users of a cancer support community into specific functional roles. Based on a series of quantitative and qualitative evaluations, this research identified eleven roles that members occupy, such as welcomer and story sharer. We investigated role dynamics, including how roles change over members' lifecycles, and how roles predict long-term participation in the community. We found that members frequently change roles over their history, from ones that seek resources to ones offering help, while the distribution of roles is stable over the community's history. Adopting certain roles early on predicts members' continued participation in the community. Our methodology will be useful for facilitating better use of members' skills and interests in support of community-building efforts.

Has the Quality of Patient-Provider Communication About Survivorship Care Improved?

PURPOSE: The aim of the current study was to assess whether the quality of patient-provider communication on key elements of cancer survivorship care changed between 2011 and 2016. METHODS: Participating survivors completed the 2011 or 2016 Medical Expenditure Panel Survey Experiences with Cancer Surveys (N = 2,266). Participants reported whether any clinician ever discussed different aspects of survivorship care. Responses ranged from "Did not discuss at all" to "Discussed it with me in detail". Distributions of responses were compared among all respondents and only among those who had received cancer-directed treatment within 3 years of the survey. RESULTS: In 2011, the percentage of survivors who did not receive detailed instructions on follow-up care, late or long-term adverse effects, lifestyle recommendations, and emotional or social needs were 35.1% (95% CI, 31.9% to 38.4%), 54.2% (95% CI, 50.7% to 57.6%), 58.9% (95% CI, 55.3% to 62.5%), and 69.2% (95% CI, 65.9% to 72.3%), respectively, and the corresponding proportions for 2016 were 35.4% (95% CI, 31.9% to 37.8%), 55.5% (95% CI, 51.7% to 59.3%), 57.8% (95% CI, 54.2% to 61.2%), and 68.2% (95% CI, 64.3% to 71.8%), respectively. Findings were similar among recently treated respondents. Only 24% in 2011 and 22% in 2016 reported having detailed discussions about all four topics. In 2016, 47.6% of patients (95% CI, 43.8% to 51.4%) reported not having detailed discussions with their providers about a summary of their cancer treatments. CONCLUSION: Clear gaps in the quality of communication between survivors of cancer and providers persist. Our results highlight the need for continued efforts to improve communication between survivors of cancer and providers, including targeted interventions in key survivorship care areas.

Perceptions of Patients With Breast and Colon Cancer of the Management of Cancer-Related Pain, Fatigue, and Emotional Distress in Community Oncology.

PURPOSE: Pain, fatigue, and distress are common among patients with cancer but are often underassessed and undertreated. We examine the prevalence of pain, fatigue, and emotional distress among patients with cancer, as well as patient perceptions of the symptom care they received. PATIENTS AND METHODS: Seventeen Commission on Cancer-accredited cancer centers across the United States sampled patients with local/regional breast (82%) or colon (18%) cancer. We received 2,487 completed surveys (61% response rate). RESULTS: Of patients, 76%, 78%, and 59% reported talking to a clinician about pain, fatigue, and distress, respectively, and 70%, 61%, and 54% reported receiving advice. Sixty-one percent of patients experienced pain, 74% fatigue, and 46% distress. Among those patients experiencing each symptom, 58% reported getting the help they wanted for pain, 40% for fatigue, and 45% for distress. Multilevel logistic regression models revealed that patients experiencing symptoms were significantly more likely to have talked about and received advice on coping with these symptoms. In addition, patients who were receiving or recently completed curative treatment reported more symptoms and better symptom care than did those who were further in time from curative treatment. CONCLUSION: In our sample, 30% to 50% of patients with cancer in community cancer centers did not report discussing, getting advice, or receiving desired help for pain, fatigue, or emotional distress. This finding suggests that there is room for improvement in the management of these three common cancer-related symptoms. Higher proportions of talk and advice among those experiencing symptoms imply that many discussions may be patient initiated. Lower rates of talk and advice among those who are further in time from treatment suggest the need for more assessment among longer-term survivors, many of whom continue to experience these symptoms. These findings seem to be especially important given the high prevalence of these symptoms in our sample.

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.

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.

Comparison of Pharmaceutical, Psychological, and Exercise Treatments for Cancer-Related Fatigue: A Meta-analysis.

IMPORTANCE: Cancer-related fatigue (CRF) remains one of the most prevalent and troublesome adverse events experienced by patients with cancer during and after therapy. OBJECTIVE: To perform a meta-analysis to establish and compare the mean weighted effect sizes (WESs) of the 4 most commonly recommended treatments for CRF-exercise, psychological, combined exercise and psychological, and pharmaceutical-and to identify independent variables associated with treatment effectiveness. DATA SOURCES: PubMed, PsycINFO, CINAHL, EMBASE, and the Cochrane Library were searched from the inception of each database to May 31, 2016. STUDY SELECTION: Randomized clinical trials in adults with cancer were selected. Inclusion criteria consisted of CRF severity as an outcome and testing of exercise, psychological, exercise plus psychological, or pharmaceutical interventions. DATA EXTRACTION AND SYNTHESIS: Studies were independently reviewed by 12 raters in 3 groups using a systematic and blinded process for reconciling disagreement. Effect sizes (Cohen d) were calculated and inversely weighted by SE. MAIN OUTCOMES AND MEASURES: Severity of CRF was the primary outcome. Study quality was assessed using a modified 12-item version of the Physiotherapy Evidence-Based Database scale (range, 0-12, with 12 indicating best quality). RESULTS: From 17 033 references, 113 unique studies articles (11 525 unique participants; 78% female; mean age, 54 [range, 35-72] years) published from January 1, 1999, through May 31, 2016, had sufficient data. Studies were of good quality (mean Physiotherapy Evidence-Based Database scale score, 8.2; range, 5-12) with no evidence of publication bias. Exercise (WES, 0.30; 95% CI, 0.25-0.36; P < .001), psychological (WES, 0.27; 95% CI, 0.21-0.33; P < .001), and exercise plus psychological interventions (WES, 0.26; 95% CI, 0.13-0.38; P < .001) improved CRF during and after primary treatment, whereas pharmaceutical interventions did not (WES, 0.09; 95% CI, 0.00-0.19; P = .05). Results also suggest that CRF treatment effectiveness was associated with cancer stage, baseline treatment status, experimental treatment format, experimental treatment delivery mode, psychological mode, type of control condition, use of intention-to-treat analysis, and fatigue measures (WES range, -0.91 to 0.99). Results suggest that the effectiveness of behavioral interventions, specifically exercise and psychological interventions, is not attributable to time, attention, and education, and specific intervention modes may be more effective for treating CRF at different points in the cancer treatment trajectory (WES range, 0.09-0.22). CONCLUSIONS AND RELEVANCE: Exercise and psychological interventions are effective for reducing CRF during and after cancer treatment, and they are significantly better than the available pharmaceutical options. Clinicians should prescribe exercise or psychological interventions as first-line treatments for CRF.

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.

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 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.