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Abstract BACKGROUND The diagnosis of vestibular schwannomas (VS) is associated with reduced patient quality of life (QOL). Minimal clinically important difference (MCID) was introduced as the lowest improvement in a patient-reported outcome (PRO) score discerned as significant by the patient. We formerly presented an MCID for the Penn Acoustic Neuroma QOL (PANQOL) battery based on cross-sectional data from 2 tertiary referral centers. OBJECTIVE To validate the PANQOL MCID values using prospective data. METHODS A prospective registry capturing QOL was queried, comprising patients treated at the authors’ institution and Acoustic Neuroma Association members. Anchor- and distribution-based techniques were utilized to determine the MCID for domain and total scores. We only included anchors with Spearman's correlation coefficient larger than 0.3 in the MCID threshold calculations. Most domains had multiple anchors with which to estimate the MCID. RESULTS A total of 1254 patients (mean age: 57.4 yr, 65% females) were analyzed. Anchor-based methods produced a span of MCID values (median, 25th-75th percentile) for each PANQOL domain and the total score: hearing (13.1, 13-16 points), balance (14, 14-19 points), pain (21, 20-28 points), face (25, 16-36 points), energy (16, 15-18 points), anxiety (16 [1 estimate]), general (13 [1 estimate]), and total (12.5, 10-15 points). CONCLUSION Current findings corroborate our formerly shared experience using multi-institutional, cross-sectional information. These MCID thresholds can serve as a pertinent outcome when deciphering the clinical magnitude of VS QOL endpoints in cross-sectional and longitudinal studies.

Objective: The aim of this study was to conduct a prospective, multicenter survey of patients regarding postoperative opioid use to inform development of standardized, evidence-based, procedure-specific opioid prescribing guidelines. Summary of Background Data: Previous work has shown significant variation in the amount of opioids prescribed after elective procedures, calling for optimization of prescribing. Methods: Adults (n = 3412) undergoing 25 elective procedures were identified prospectively from 3 academic centers (March 2017 to January 2018) to complete a 29-question telephone interview survey 21 to 35 days post-discharge (n = 688 not contacted, n = 107 refused). Discharge opioids were converted into Morphine Milligram Equivalents (MMEs). Results: Of the 2486 patients who completed the survey, 91.2% received opioids at discharge [median 225 (interquartile range, IQR 125 to 381) MME]. A median of 43 (0 to 184) MMEs were consumed after discharge with 77.3% of patients having leftover opioids at the time of the survey. In total, 61.5% of prescribed opioids were unused; 31.4% of patients used no opioids, and 52.6% required <50 MME. Overall, 90.6% of patients were satisfied with their postdischarge pain control. While 28.3% reported being prescribed too many opioids, 9.0% felt they were not prescribed enough. Only 9.6% of patients disposed of remaining opioids. Of the 2068 opioid-naive respondents (83.2%), 33.6% consumed no opioids (range 5.2% to 80.0% by procedure) and 57.0% (65.7% nonorthopedic) consumed <50 MME. Utilization data and predictors of low/high opioid consumption informed development of postoperative prescribing guidelines. Conclusion: A large proportion of postoperative patients reported using no or few opioids following discharge. Guidelines were developed to minimize opioid prescribing and identify patients requiring low doses or additional multimodal pain control.

AbstractOur aim was to evaluate whether quality of life (QOL) scores at diagnosis predict survival among patients with aggressive lymphoma. Newly diagnosed lymphoma patients were prospectively enrolled within 9 months of diagnosis in the University of Iowa/Mayo Clinic SPORE and systematically followed for event‐free and overall survival (OS). QOL was measured with the Functional Assessment of Cancer Treatment‐General (FACT‐G), which measures 4 domains: physical, social/family, emotional, and functional well‐being (WB); a single item Linear Analogue Self‐Assessment (LASA) measuring overall QOL; and a spiritual WB LASA. From 9/2002 to 12/2009, 701 patients with aggressive lymphoma who completed baseline QOL questionnaires were enrolled. At a median follow‐up of 71 months (range 6‐128), 316 patients (45%) had an event and 228 patients (33%) died. All baseline QOL measures but emotional WB were significantly associated with OS (all P < 0.04); of which all but LASA spiritual remained significant after adjusting for IPI and NHL subtype. The strongest associations were with total FACT‐G (adjusted HR = 0.86, 95% CI: 0.79‐0.94, P = 0.00062) and functional WB (adjusted HR = 0.88, 95% CI: 0.83‐0.93, P < .0001). QOL LASA was associated with OS (adjusted HR = 0.92, 95% CI: 0.87‐0.97, P = 0.0041). Patients with clinically deficient QOL (overall QOL ≤50) had a median OS of 92 months compared with 121 months for patients with QOL >50 (P = 0.0004). In this large sample of patients with aggressive lymphoma, we found that baseline QOL is independently predictive of OS. QOL should be assessed as a prognostic factor in patients with aggressive lymphoma.

174 Background: Patient-reported outcomes (PROs), including physical function and quality of life (QOL), are important outcomes in cancer patients. Emoji are a near-universal, popular form of communication, understandable by diverse populations, including those with low health literacy. We aimed to explore whether emoji could be a valid, reliable scale for assessing PROs in cancer patients. Methods: To develop the emoji scale, 5 emoji faces were selected from the Apple emoji dictionary by study authors. 20 cancer patients participated in a card-sorting exercise to rank the emoji from negative to positive; 19 out of 20 selected the same order, which exceeded Coomb’s criteria for being a valid ordinal scale. Patients were recruited from Mayo Clinic practices. Eligibility included: adult patients with a diagnosis of lymphoma, multiple myeloma, brain, pancreatic, breast, and ovarian cancer within the past 5 years; life expectancy of > 6 months; and own an iPhone version ≥ 5.0. All patients were provided with an Apple Watch and downloaded the study app. Baseline PRO data was collected on the iPhone, including single-item linear analog self-assessments (LASA) and emoji scales for fatigue, physical function, emotional well-being, and overall QOL. Results: From 2/2017-8/2017, 294 eligible patients were recruited. 25% were male, and median age was 53 years (range 20-79). The median time since diagnosis was 8.4 months (range 0-60); 63% were on active therapy, 27% were in observation post-treatment, and 10% had not been treated. All patients were “extremely” confident filling out forms, 99% had used a computer in the past 12 months, and 27% had ever used a smart watch. Emoji responses were significantly associated with validated measures of PROs; the Spearman correlations between the ordinal emoji scales and LASAs were -0.83 for fatigue, 0.72 for physical well-being, 0.72 for emotional well-being, and 0.77 for overall QOL (all p < 0.0001). Of the 75 patients who have completed the study thus far, 92% reported they would use emoji scales again and 89% would recommend that others use emoji scales. Conclusions: A novel ordinal emoji scale is strongly associated with accepted measures of PROs in cancer patients and should be studied further.

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.