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.

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.

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.

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.

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.

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.

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.

Quality of life of couples dealing with cancer: dyadic and individual adjustment among breast and prostate cancer survivors and their spousal caregivers.

BACKGROUND AND PURPOSE: Although evidence suggests that survivors and spousal caregivers tend to experience somewhat similar levels of distress and that the survivor's distress affects his/her own quality of life, the degree to which each person's distress has an independent effect on their partner's quality of life is unknown. Thus, this study aimed to examine the dyadic effects of psychological distress on the quality of life of couples dealing with cancer. METHODS: A total of 168 married survivor-caregiver dyads participating in the American Cancer Society's Study of Cancer Survivors-I and Quality of Life Survey for Caregivers provided complete data for study variables. Participating survivors were diagnosed with either breast or prostate cancer approximately 2 years prior to participating in the study. RESULTS: Using the Actor Partner Interdependence Model, results revealed that although each person's psychological distress is the strongest predictor of their own quality of life, partner's distress and (dis)similarity in distress of the couple also play significant roles in one's quality of life. In addition, the adverse effect of having a partner who is less emotionally resourceful was especially pronounced on men's physical health. CONCLUSIONS: Our systematic investigation provided valuable evidence for identifying the subgroup of cancer survivors and their spouses who are vulnerable to poor quality of life due to their mutual psychological distress. These findings suggest that couples may benefit from interventions that enhance their ability to manage psychological distress, particularly the wife's, which may improve the mental and physical health of both partners when they are dealing with cancer.

Health status and life satisfaction among breast cancer survivor peer support volunteers.

Two measures of health-related quality of life (HRQOL), the Medical Outcomes Survey Short Form 36 (SF-36) and the Satisfaction with Life Domains Scale for Cancer (SLDS-C), were compared to examine the relationship between health status and life satisfaction among breast cancer survivors (BCSs). A total of 586 BCSs, all of whom were volunteers in peer support programs, met inclusion criteria and completed the self-report measures. Significant correlation coefficients were shown between life satisfaction and measures of health status. SF-36 scores were significantly higher for physical functioning, emotional well-being, and vitality subscales compared to population norms. BCSs expressed greatest dissatisfaction with their sexual ability, physical strength, and bodies in general. Small age differences were found. Results suggest that incorporating multiple measures of HRQOL contribute to the understanding and measurement of the effects of cancer on perceived health status and life satisfaction.