Yost, Kathleen J.

Objective Using surveys to collect self-reported information on health and disease is commonly used in clinical practice and epidemiological research. However, the inconsistency of self-reported information collected longitudinally in repeated surveys is not well investigated. We aimed to investigate whether a socioeconomic status based on current housing characteristics, HOUsing-based SocioEconomic Status (HOUSES) index linking current address information to real estate property data, is associated with inconsistent self-reporting. Study setting and participants We performed a prospective cohort study using the Mayo Clinic Biobank (MCB) participants who resided in Olmsted County, Minnesota, USA, at the time of enrolment between 2009 and 2013, and were invited for a 4-year follow-up survey (n=11 717). Primary and secondary outcome measures Using repeated survey data collected at the baseline and 4 years later, the primary outcome was the inconsistency in survey results when reporting prevalent diseases, defined by reporting to have ‘ever’ been diagnosed with a given disease in the baseline survey but reported ‘never’ in the follow-up survey. Secondary outcome was the response rate for the 4-year follow-up survey. Results Among the MCB participants invited for the 4-year follow-up survey, 8508/11 717 (73%) responded to the survey. Forty-three per cent had at least one inconsistent self-reported disease. Lower HOUSES was associated with higher inconsistency rates, and the association remained significant after pertinent characteristics such as age and perceived general health (OR=1.46; 95% CI 1.17 to 1.84 for the lowest compared with the highest HOUSES decile). HOUSES was also associated with lower response rate for the follow-up survey (56% vs 77% for the lowest vs the highest HOUSES decile). Conclusion This study demonstrates the importance of using the HOUSES index that reflects current SES when using self-reporting through repeated surveys, as the HOUSES index at baseline survey was inversely associated with inconsistent self-report and the response rate for the follow-up survey.

Purpose: Several studies have demonstrated that patients have a poor understanding of prognosis, survival, and effectiveness of chemotherapy, particularly in the setting of advanced cancer. This study examines oncology patients’ understanding of their illness based on accurate reporting of stage at diagnosis and knowledge of cancer status (ie, free of cancer or in remission v active disease). Materials and Methods: Two hundred eight patients with cancer previously treated at our large community-based cancer institute participated in the Consumer-Based Cancer Care Value Index field survey. Electronic medical record documentation of stage at diagnosis and cancer status was compared with patients’ self-reported responses. Concordance of responses and variables influencing discordance were evaluated. Results: In 51.0% of patients, self-reported cancer stage matched the abstracted stage, with the highest concordance in patients with advanced cancer (72%) versus patients with stage I to III disease (36.4% to 61.5%). Unexpectedly, discordance was lower among patients with advanced cancer compared with patients with stage I to III cancer ( P = .0528). Patients who were concordant for cancer stage at diagnosis were significantly more likely to be female ( P = .001), be younger than age 65 years ( P = .01), have an income > $60,000 ( P = .03), and have more education ( P = .02). In 64.4% of patients, self-reported cancer status (ie, free of cancer or in remission v active disease) matched the abstracted status. Nearly 30% of patients were not sure about their status, even when they were free of cancer or in remission. Conclusion: Our findings confirm that more than one quarter of patients with advanced cancer have poor illness understanding and highlight that an even greater number of patients with early stage I to III cancer have poor illness understanding. These observations highlight the need to improve illness understanding for patients across the entire cancer continuum.

227 Background: The objective of this work was to develop a reliable and valid survey measuring aspects of cancer care important to patients to be used in both inpatient and outpatient settings, and that allows comparisons of patient experiences across treatment centers and treatment modalities (medical oncology, radiation, surgery). Other objectives included testing various modes of data collection and developing a standardized sampling methodology based on ICD diagnosis and procedure codes. Methods: We conducted focus groups with patients who had received cancer treatment and with family members of cancer patients. We convened a panel of experts representing quality improvement, oncology, shared decision-making, patient safety, and patient advocacy to obtain feedback on the development of the survey. We interviewed stakeholder groups representing oncology associations to obtain feedback on focal provider, attribution and sampling. We then conducted a field test of the survey among six cancer centers around the country, conducted psychometric analyses, revised the survey, conducted a second field test among four community oncology practices in CA, re-analyzed the data, and finalized the survey. Results: Final survey content was determined using results of the formative research, psychometric analyses, and input from the CAHPS Consortium. The core survey includes 56 questions, 23 of which map to eight composites: Provider Communication, Enabling Patient Self-management, Team Available to Provide Information, Access to Care, Care Coordination, and Office Staff. Supplemental item sets include seven items assessing Shared Decision Making, four items measuring Keeping Patients Informed, and two additional Access to Care items. Mail-only, mail-telephone mixed-mode, and web-mail mixed-mode are recommended methods of data collection. The survey and all recruiting materials are available in English and Spanish. Conclusions: The CAHPS Cancer Care Survey is a rigorously developed, well-tested, reliable and valid survey of patient experiences with their cancer care. The survey and supporting materials are available free of charge on the CAHPS website (www.ahrq.gov/cahps).

222 Background: Current approaches to measuring the quality of cancer care may not produce sufficient information to enable providers to structure care that aligns closely with their patients’ preferences. To close this gap, we developed the Consumer-based Cancer Care Value Index (CCCVI) survey, which assesses the aspects of cancer care that patients value the most and how their values align with their experience in receiving cancer care. Methods: The CCCVI field test included 721 adults who received cancer care in the last 12 months from 4 geographically diverse cancer care centers, including patients with varying stages of cancer, types of cancer, types of treatment (e.g., surgery, radiation, medical oncology), and demographic characteristics. The survey included items that asked patients to directly rate the “importance” of 24 aspects of cancer care, along with 24 corresponding items that measured the “frequency” with which they received each aspect of care. We evaluated the reliability and validity of the survey items, and developed “value grids” plots which visually depicted the “importance” scores against the “frequency” scores. We conducted subgroup analysis to examine income and racial/ethnic disparities in the extent of misalignment between patients’ values and experiences. Results: The survey demonstrated good internal consistency reliability (Cronbach’s alpha = 0.91) and acceptable-to-good construct and criterion validity. Value grids identified potential areas of improvement in the areas of how doctors communicate and how quickly patients get care. The subgroup analysis showed the most misalignments between patients’ values and experiences in the aspects of doctor communication for lower-income patients and in the aspects of getting care quickly for patients from racial/ethnic minority groups. Conclusions: The CCCVI survey is a reliable and valid tool for cancer care providers to identify top priority areas (i.e., high-importance but low-frequency areas) to facilitate their quality improvement efforts. It also recognizes subgroup variations in the misalignment between patients’ values and care experiences.

193 Background: National standards recommend distress screening as part of cancer care. While many patients report improved quality of life after cancer treatment concludes there remains a population who experience ongoing anxiety and depressive symptoms. We sought to describe psychosocial distress in lymphoma survivors and frequency of visits to mental health providers (MHP). Methods: Lymphoma patients were prospectively enrolled within 9 months of diagnosis in the University of Iowa/Mayo Clinic SPORE Molecular Epidemiology Resource and systematically followed. Brief Profile of Mood States (POMS) and State Trait Anxiety Inventory (STAI) were administered 3 yrs after diagnosis. Lower scores on POMS indicated more distress. A higher score on STAI indicated more anxiety, and a score ≥ 40 was considered clinically significant. Pts were asked if they ever saw a MHP due to their lymphoma. Results: Between 2002-2012, 2465 lymphoma pts age 18-91 (10% 18-40, 54% 41-65, and 36% > 65) were enrolled, met survivor definition, and completed 3-yr POMS and STAI questionnaires. 57% were male. 40% had aggressive and 60% had indolent lymphoma. The median score on STAI 1 (state) was 32 (range 20-76) and on STAI 2 (trait) was 31 (range 20-77). Median POMS total mood disturbance (TMD) score was 88 (range 1-100). 8% of pts reported seeing a MHP. 609 pts (25%) had clinically significant anxiety by STAI 1, 73 (12%) of whom saw a MHP. Those who reported clinically significant anxiety on STAI were more likely to be younger, unemployed, unmarried, and less likely to have seen a MHP. Anxiety levels were similar between those with aggressive lymphoma and indolent lymphoma regardless of treatment. Higher distress levels, measured by TMD, were more often reported by those who were unemployed or over age 65 while there was no association with lymphoma subtype, marital status, or choice of therapy. Conclusions: Clinically significant anxiety was reported in 25% of 3-yr survivors of lymphoma and was associated with younger age, unmarried status, and unemployment. Higher distress levels were associated with older age, and unemployment. However, only 8% of our cohort was seen by a MHP. Identifying distress and appropriately referring to a MHP is important for the optimal care of lymphoma survivors.

274 Background: The objectives of the formative research were to identify key themes of patient-centered cancer care and determine the best method to collect data to develop the CAHPS Survey for Cancer Care Prototype. This survey seeks to measure aspects of care most important to patients and allow comparisons of those aspects across treatment centers and treatment modalities. Methods: We developed a library of 1,781 items from CAHPS and cancer care surveys. We conducted 14 focus groups with patients (including 2 conducted in Spanish) who had received cancer care in the past 12 months, and 2 focus groups involving family members of cancer patients. We met with 10 experts representing patients and survivors, or who had expertise in quality improvement, oncology, shared decision-making and patient safety to obtain feedback on the development of the survey, potential markets for the instrument, and to assist with overall strategy. Finally, we conducted separate interviews with 5 stakeholder groups representing oncology associations to obtain feedback on focal provider, attribution and sampling. Results: While the focus group results validated findings from the item library, new concepts also emerged, such as the need for having a plan of care. Patients most readily identified with a team of providers, rather than a single provider. The two most important domains to patients were (1) how well the cancer care team communicates with patients and (2) whether the cancer care team keeps patients informed about cancer treatment. Patients were also interested in care coordination, access to information, providers who are up-to-date, and shared decision-making. Stakeholder interviews noted that survey results would be most valuable if presented by treatment modality: medical, radiation, and surgical oncology. Conclusions: These findings suggest that cancer care is best for the patient when providers are knowledgeable and straightforward with medical information, yet can demonstrate empathy and compassion.

134 Background: The CAHPS Survey for Cancer Care Prototype (application for CAHPS trademark in process) represents a significant advancement towards helping cancer care providers understand patients’ experiences of care. Although a number of standard commercial surveys are in use, currently none are available that both (1) capture the aspects of care most important to patients and (2) allow comparisons of those aspects of care across treatment centers and modalities. Methods: We developed a survey instrument that incorporated patient, clinician, and other stakeholder input throughout the development process. The survey measures patients’ perceptions of observable provider behaviors that are indicative of high quality care. Field test data were collected from 1,367 of 2,826 eligible patients (48% response rate) treated with surgery, radiation, or medical oncology from 6 accredited cancer treatment centers across the US. Classical psychometric methods were used to evaluate the measurement properties of composite scales per standard CAHPS methodology. Results: Based on a priori conceptualization, patient and stakeholder input, and empirical analyses, we identified 5 composites measuring shared decision-making, exchanging information about treatment, affective communication, access to care, and patient self-management. A confirmatory factor analysis using structural equation modeling showed an excellent fit (CFI > 0.96; RMSEA < 0.05) between the observed data and the structure for these five composites. Cronbach’s alpha for these composites ranged from 0.71-0.88, discriminant validity was good for all scales, and correlations with overall ratings of cancer care providers were moderate (0.31) to high (0.69). Evaluation of the precision with which the composites distinguish among cancer centers indicated that the measures were reliable; however, a second field test with a greater number and variety of centers will be needed to establish a standard sampling approach and confirm these results. Conclusions: We anticipate wide-spread adoption of this measure by cancer care providers to direct quality improvement efforts due to great interest and involvement in this project on the part of stakeholders.

54 Background: After diagnosis and treatment, lung cancer survivors do not return to a health-related quality of life (QOL) and function comparable to pre-diagnosis levels as observed in other adult cancer survivors. We hypothesize that inadequate attention has been paid to addressing and improving QOL and function among lung cancer survivors. Our primary goal is to evaluate existing symptoms and QOL deficits among lung cancer survivors. Methods: We are evaluating patterns of QOL deficits (scored 5 or less on the scale from 0 [worst] to 10 [best]) in relation to time of lung cancer diagnosis, treatments, progression and/or recurrence, and health-related conditions. We are collecting and analyzing relevant health care utilization for selected QOL deficits, and identifying availability, accessibility, and effectiveness of evidence-based interventions. The expected outcomes will be new knowledge on patterns of QOL deficits, quality-adjusted life years in relation to the availability, accessibility, and adequacy of needed care and the effectiveness of interventions targeting improvement in QOL and symptoms. Results: In our initial analysis, among 3,707 lung cancer survivors who were diagnosed in 1999 to 2010, post-cancer treatment, and followed through 2011, 39% (1,442) reported deficits in overall QOL, 71% fatigue, 60% dyspnea, 41% being sedentary, 17% low spiritual well-being (SWB), and 10% currently smoking cigarettes. Among the 1,442 lung cancer survivors with a deficit in overall QOL, 97.5% reported severe fatigue or dyspnea, being sedentary or smoking, or having low SWB. In the remaining 36 of the 1,442, 24 had pain, cough, poor appetite, or other symptoms; only 12 (<1%) did not report deficit in any of the measured QOL domains. Analyses are ongoing. Conclusions: Based on evidence gained to date, we are developing and testing interventions targeting symptoms and QOL deficits. We expect to gain strong evidence for recommendations in redefining and delivering care and support that are necessary for improving the health and QOL of lung cancer survivors.

270 Background: At the 2013 ASCO Quality Symposium, we presented the formative development work and results of the 1st field test of the Cancer CAHPS survey. At that time, we noted next steps in the development and validation of the survey. In this poster/presentation, we will provide updates on these activities. Methods: The Spanish translation was completed in 2013. We conducted interviews with 9 cancer patients in 2014 to identify composite labels that resonated with consumers. We collaborated with diverse cancer care providers (health maintenance organizations, medical foundations, small oncology practices, and comprehensive cancer centers) to identify an approach to sampling patients that could be standardized across settings. With the input of stakeholders, we added additional Shared Decision Making (SDM) and Access to Care questions. Data on the revised survey were collected in a 2nd field test from May 2015 – November 2015. We will analyze these data to assess the feasibility of the sampling approach and confirm the psychometric properties of the survey. We embedded several secondary experiments in the 2nd field test including assessing the effect of language (Spanish vs. English) and mode of administration (mail only vs. web-mail mixed mode) on survey responses. Results: The Spanish-language survey is currently being fielded. Consumers identified “user friendly” composite labels, abbreviated here as Communicates well, SDM, Explains treatment, Supports self-management, Access, Delays, and Claims. We developed a comprehensive sampling approach that relies on billing data to identify cancer patient eligible to receive the survey. Preliminary findings indicate that the standardized sampling approach is feasible. The survey was administered to 3,581 patients across 4 cancer centers (i.e. reporting units) in the 2nd field test. Results of the psychometric analyses and embedded experiments will be completed in December 2015 and available for dissemination in January 2016. Conclusions: The cumulative findings from the 1st and 2nd field tests and other development activities conducted to date will be used to support an application for the CAHPS trademark.

64 Background: The goals of our Lymphoma Survivorship Clinic (SC) are to coordinate care, educate patients, and create a survivorship care plan (SCP). The aim of this study was to determine if patient-centered outcomes are improved after a SC visit. Methods: From 11/13-5/15, surveys were mailed to recently-treated lymphoma patients who were within 4 weeks of their last visit and in remission. Quality of life (QOL) was measured with PROMIS and distress was measured with the Impact of Events scale. Responses between those who attended SC and those who were eligible but did not attend were analyzed. Results: There were 96 surveys sent to the SC group; 59 were returned (61% response rate). Of the non-SC group, 140 surveys were sent and 84 were returned (60% response rate). Mean age was 57 years (range 23-77) in the SC group and 59 years (23-88) in the non-SC group. There were more females in the SC group (52% vs 30%) but no differences in race, marital status, education, or health literacy. Those who attended the SC were more likely to recall receiving a summary of cancer treatment and recommendations for follow-up care (90% SC vs. 75% non-SC, p = 0.03). Furthermore, SC attendees were more likely to “definitely” recall discussion on improving health or preventing illness (89% vs. 53%), getting help in making changes in habits/lifestyle (76% vs. 50%), diet (80% vs. 31%), and exercise (82% vs. 51%), all p < 0.001. There were no differences in discussions regarding smoking, follow-up testing, and symptom monitoring. The SC group was less likely to need more information regarding sexuality (6% vs 20%, p = 0.045). There were no differences in need for information regarding anxiety, fitness, familial cancer risk, fertility, complementary therapies, and social issues. The SC group was slightly more confident that they could get information or advice related to cancer (completely confident 76% vs. 61%, p = 0.07). There were no differences in QOL or distress. Conclusions: A Lymphoma SC visit increased receipt of SCP and provided more information on survivorship issues, particularly health behaviors, but did not improve QOL or distress. Further study is needed to determine if this leads to long-term health benefits.