Citations

187 Background: Patient-reported evaluations of interpersonal quality of care are essential elements of quality of cancer care assessment. At times, patients may be unable to report themselves on their care experience and systems may rely on proxy reports. The validity of this approach is dependent on the degree to which family caregiver assessments are concordant with patient assessments. Methods: A VA cohort of colorectal cancer (CRC) patients and their caregivers both completed a self-administered questionnaire on the quality of VA cancer care in 3 specific domains: surgery, chemotherapy overall and chemotherapy nursing care, all measured on a 5-point Likert scale. Because the kappa statistic penalizes skewed distributions which are commonly seen in patient satisfaction reports, agreement between patients and caregivers on perceptions of quality care were measured using Gwet’s AC2 statistic. Stratified analyses on caregiver burden, race, education, and age as well as patient’s stage of disease were used to assess variation in agreement. Results: 417 caregiver-patient dyads completed the survey (70% response rate), of whom 362 (86.8%) had surgery and 195 (46.8%) had chemotherapy. Overall agreement was high for the 3 quality of care domains: AC2 (95% CI): 0.870 (0.838, 0.903) for surgery, 0.835 (0.786, 0.884) for chemotherapy overall and 0.906 (0.868, 0.944) for chemotherapy nurses. Stratified analyses of agreement showed particular populations of higher or lower agreement; however the findings were inconsistent across the three domains and most were not statistically significant. Patients with lower stage (I-II) had higher agreement than higher stages (III-IV) (AC2: 0.967 and 0.879 respectively, P = 0.006) but only in the chemotherapy nurses domain. For the surgery domain, age was the only significant difference in agreement (0.816, 0.912, and 0.838 for < 50, 51-65, and > 65 respectively, P = 0.03). Conclusions: Family caregiver reports on the quality of CRC care were highly concordant with patient reports. Therefore, family caregivers may be able to provide reasonable proxy report on measures of quality of cancer care when patient reports are unavailable.

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.

35 Background: Studies suggest cancer patients frequently misunderstand information about cancer treatment. Doctors and nurses often give cancer patients written information such as internet-downloaded printouts about chemotherapy. We observed that cancer patients at Mayo Clinic often cannot recall cancer drug names and expected side effects, despite receiving written information. We investigated whether pocket cards [PC] could improve drug name and side effect recall compared to written information alone. Methods: We randomized 100 cancer patients starting chemotherapy to receive PC plus written information or written information alone. Each PC listed the drug name and 3-5 common drug side effects. Written information included a Mayo Clinic produced drug information sheet and printed information from the CareNotes System (Thomson Reuters), with each sheet listing a drug’s name and common side effects. Cancer patients were tested for drug names and side effects recalled at treatment start, again at 4-6 weeks, and again at 8-10 weeks. Results: Of 100 cancer patients randomized (50 to PC plus written information and 50 to written information alone), 66 completed the study. Demographics: median age 64 years (24-81 years); 41 male; 59 female. At 8-10 weeks, no significant difference between groups was observed for drug names recalled correctly (p = 0.79) or median side effects recalled (p = 0.34). Drug name recall declined at 8-10 weeks (29% named drug names correctly at treatment start versus 20% at 8-10 weeks). Median side effects recalled was unchanged at 8-10 weeks (p = 0.19). Conclusions: PC do not appear to improve cancer patients’ drug name recall better that written information alone, nor do PC increase recall of drug side effects. Patient recall of drug names decreases over time. Additional education provided several weeks after chemotherapy has begun may be warranted to reinforce patient knowledge of important treatment-related information.

300 Background: The National Radiation Oncology Registry (NROR) is developing an IT infrastructure to support the efficient collection, aggregation, and analysis of data concerning cancer patients treated with radiotherapy across the United States. Methods: Detailed requirements were developed to emphasize the following distinguishing goals for the system: 1) streamline the process of data collection by minimizing manual data entry; 2) support the collection of patient-reported outcomes (PROs) and their linkage with clinician-observed outcomes; 3) facilitate data integration within the NROR and between the NROR and other registries; 4) allow for evolution of the system in response to new learning; and 5) promote sustainability and ongoing improvement through an open standard of interoperability. Results: An innovative technical architecture has been designed to meet the goals described. The system maximizes efficiency through automated extraction and electronic transfer of data from radiation oncology information systems. PROs are collected directly from patients via a web-based portal and linked to data submitted from participating institutions. A data dictionary has been developed based on national standards and controlled vocabularies to facilitate data integration. Contemporary forms-based database technology is used in combination with traditional relational technology to permit both flexible evolution of the system and efficient data analysis. A unique “gateway” architecture and open transmission standard makes it possible for commercial products to interoperate with the registry in the future. Conclusions: The NROR prototype system will be launched later this year to collect data for a pilot registry of prostate cancer patients. Its performance and usability will be important factors in the success of the pilot. If effective, the platform will support the expansion of the NROR to benefit patients, clinicians, researchers, payors, device manufacturers, and policy-makers by capturing reliable, population-based information on radiation treatment delivery and health outcomes.

284 Background: Frameless stereotactic radiosurgery (SRS) is single fraction radiation therapy delivered to an intracranial lesion. Rather than with a rigid head frame, frameless SRS uses a thermoplastic mask for immobilization. The benefit of this mask includes the ability to simulate and treat the patient at different times, ease of patient set-up and improved patient comfort. Clinically, frameless SRS is used for primary brain tumors and metastatic lesions. The length of the treatments may vary based on a number of factors, including total treatment dose, number of monitor units, number and arrangement of beams, and equipment manipulations. This is a single institution review of patients treated with SRS with positional checks made before, during and at the completion of treatment to evaluate intrafraction motion. Methods: Patients were treated with SRS at Mayo Clinic Florida between 2010 and 2011. All patients were immobilized with a thermoplastic mask and treated on a Varian IX Clinac. KV Cone beam CT was taken prior to the initiation of treatment to verify the treatment position. Cone beam CT’s were also performed at the midpoint and conclusion of treatment. The same physician analyzed all cone beam CT’s. Adjustments were recorded in each dimension and analyzed to determine intrafraction motion. Results: Intrafraction motion was evaluated during six separate SRS cases. The mean displacements at mid-treatment were 0.67±0.52 mm, 0.50±0.55 mm, 0.83±0.75 mm, and 1.35±0.78 mm in the medial/lateral, superior/inferior, anterior/posterior, and vectoral direction, respectively. The mean post-treatment displacements were 0.17±0.41 mm, 0.67±0.82 mm, 0.50±0.84 mm, and 1.11±0.96 mm in the medial/lateral, superior/inferior, anterior/posterior, and vectoral direction, respectively. Estimated overall margins to accommodate intrafraction motion in 90% of patients were 2.63 mm and 2.69 mm at mid-treatment and post-treatment, respectively. Conclusions: The majority of intrafraction motion occurred during the first portion of treatment. Intrafraction motion during the course of frameless SRS treatment is not negligible and approximately a 2.5 mm margin should be taken into account during the planning process.

184 Background: Patients with CLL are at higher risk of developing melanoma and other skin malignancies. The survival of patients with melanoma is worse, stage for stage, in patients with CLL than patients without. It is thought that early diagnosis of skin cancer is critical to improving survival in CLL patients. To promote early diagnosis and education on skin cancer prevention, the Mayo Clinic CLL group has recommended that CLL patients be referred for full body skin evaluation within 6 months of diagnosis. We sought to determine adherence to these guidelines by our group and identify prevalence of skin malignancies within 6 months of diagnosis. Methods: We identified patients who lived within 30 miles of Mayo Clinic who were diagnosed with CLL between 01/01/2004 and 01/01/2012 using the Mayo Clinic CLL database. Charts were reviewed for skin examinations, referrals to dermatology/primary care within 6 months of diagnosis of CLL, and diagnosis of a skin malignancy. Results: There were 107 patients newly diagnosed with CLL included in this study. Of the 79 patients who received their primary care at Mayo Clinic, 40 (51%) had a documented whole body skin exam by either a dermatologist or primary care provider within six months of diagnosis. Nine of these 40 patients (23% of examined patients; 8% overall cohort) had a skin malignancy: 2 patients had basal cell carcinomas, 6 patients had squamous cell carcinomas, and 1 patient had malignant melanoma. Prophylactic skin care recommendations could be documented for only 28 (26%) of patients. Conclusions: At least 8% of patients in this locally dwelling cohort with newly diagnosed CLL had a skin malignancy identified within six months of diagnosis (number needed to screen for 1 skin cancer: 13). Of patients referred to dermatology 23% had a skin malignancy (number needed to screen: 4.3). Referrals for screening skin examinations at diagnosis in patients with CLL could have an immediate impact for this at-risk population.

178 Background: Soft tissue sarcoma is a rare disease requiring multidisciplinary care for effective treatment. The National Comprehensive Cancer Network has developed guidelines for surgical resection and adjuvant therapy based on best available evidence. We sought to examine variance from these guidelines in treatment across the United States. Methods: The Surveillance, Epidemiology and End Results cancer registry was queried to identify patients undergoing surgery for extra-abdominal soft tissue sarcoma from 2004-2009. Coded variables signifying radical excision (RE) and the use of radiation therapy (RT) were correlated with stage of the primary tumor. Patients with metastatic disease, unknown size and unknown grade were excluded. Results: A total of 5,600 patients were identified with a median age of 61. Median tumor size was 8cm and most tumors were high grade (57% G3). Stage specific breakdown was as follows; Stage I 24%, Stage II 37% and Stage III 39%. Overall, 54% of patients underwent RE and 50% received RT, mostly in the post-operative setting (83%). The amputation rate was 4%. Although routine radiation therapy is not recommended for Stage IA and IB patients, 24% still underwent RT, whereas only 49% of Stage I patients were noted to have undergone a RE. Even though routine RT is recommended for Stage II and III tumors, 42% of patients did not undergo any RT, and only 58% underwent RE. On multivariate analysis predictors of RE were age <50 (OR 1.3, 95% CI 1.1-1.6), lower extremity tumor (OR 2.2, 95% CI 1.6- 2.8), Stage III, (OR 2.1, 95% CI 1.7- 2.6), and white race (OR 1.4, 95% CI 1.2- 1.8). Variance from guidelines was seen in 64% of patients. Conclusions: Significant heterogeneity and variation in the contemporary treatment for soft tissue sarcoma in the United States exists. Although low rates of RE may be related to coding discrepancies, rates as low as 54% are still a cause for concern. Overuse, and more importantly, underuse of RT is seen for a significant proportion of patients. If these trends are confirmed by further study, more effort will have to be directed towards compliance with appropriate treatment recommendations, perhaps by regionalizing sarcoma care.

158 Background: Esophageal cancer patients (pts) require multidisciplinary management involving thoracic and general surgeons, medical and radiation oncologists, gastroenterologists and psychiatrists. Pts navigate complex medical discussions and endure challenges to nutrition, body image, swallowing mechanics, energy level and weight, mood, and performance status. Coordination of care is complicated by multiple sites of pt entry, complex scheduling requirements, and incomplete information at multidisciplinary consultation. A nurse navigator to coordinate the patient experience may optimize treatment and improve outcomes, quality of life and patient satisfaction. Methods: The nurse navigator evaluates all pt records prior to initial appointment and coordinates scheduling, records acquisition, testing and specialty appointments. The nurse navigator serves as a liaison with pts throughout the course of care and provides a patient navigation book (PNB) as a central source for patient-directed information and record keeping. Benchmarks compared before and after creation of the nurse navigator position include: (1) time from appointment request to multidisciplinary evaluation and start of treatment; (2) completeness of medical records and data (scans, pathology slides); (3) patient awareness of support services for themselves and caregivers; (4) utilization of the PNB; (5) number and frequency of interim hospitalizations and emergency room visits; (6) patient, caregiver, and physician satisfaction. Results: From January to July 2012, 27 gastroesophageal cancer pts have been followed by the nurse navigator. Most of these patients remain on active treatment, hence benchmark analysis is ongoing. Metrics thus far suggest improvement in time to treatment start and awareness of patient resources, use of the PNB and patient satisfaction. Conclusions: Esophageal cancer pts undergo complex and toxic multimodality therapy with curative intent. A dedicated nurse navigator may improve the patient experience, optimize adherence to guideline based therapy and appropriate timeframes and provide continuity to pts undergoing multidisciplinary treatment.

46 Background: Accountable Care Organizations (ACO), as proposed by the Affordable Care Act, will change the delivery of health care in the United States. ACO serve as a network of providers with primary care providers (PCP) set up as gate-keepers for referrals to specialists. Within the next several years, many trends will emerge and drive progress of change, requiring oncologist to take a lead role to adapt to the evolving landscape of health care. Methods: Literature search of internet-based and academic sources for oncology and the Affordable Care, with a focus on ACO formation. Results: Four main expected trends and strategies to adapt to changes were formulated. Trend 1: Changes in referral patterns towards oncologists. Referral will be based on outcome data and ACO membership. Strategy: Increase communication and education to PCP and other providers. Endorse multidisciplinary clinics, which have shown to improve guideline compliance, coordination, and communication. Trend 2: Formation of large scale oncology provider groups collaborating with PCP/ACO. Physicians will be able to provide around the clock care to patients with the goal of reducing hospital visits. Strategy: Establish oncology homes with goal of reducing inpatient and ED visits by providing telephone symptom management, daily questionnaires and opportunities for end of life discussions. Trend 3: Reimbursement reform to oncologists based on quality measures. ACO can bill fee for service basis and eligibility for bonus payments based on outcomes. Strategy:Adherence to evidence based guidelines chosen by evaluating efficacy, toxicity and cost have been proven to increase quality of patient care. Trend 4: Development to pathway driven medicine.ACO structure lends to a centralized governance committee responsible in choosing guidelines for treatment within an ACO. Strategy: Oncologists should provide a voice for the field and patients when different guidelines are chosen. Conclusions: In the context of the Affordable Care Act, oncology specialists are encouraged to participate in the new organization model to ensure best outcomes for both physicians and patients. Awareness of future trends and ways to contribute will be the first step in adapting to implementation of the Affordable Care Act.

311 Background: Previous population-based studies have shown variations in disease incidence and overall survival (OS) among multiple myeloma (MM) patients (pts) from different ethnic and racial backgrounds. However, the impact of race and ethnicity on early mortality (EM) or death in the first year after the diagnosis of MM is less well known. Methods: Pts with MM diagnosed from 2000-2011 were identified in the NCDB. We obtained data associated with socio-demographics, type and location of care facility, as well as the use of autologous stem cell transplant (ASCT) as an initial treatment option. Two cohorts were created based on the use of ASCT: 1) The group who received an upfront ASCT and 2) Pts who were 75 years or older who are unlikely to have ever received an ASCT. The rate of early mortality (EM) was estimated using the 1-year OS and assessed for all pts based on racial/ethnic background and the use of ASCT in their therapy. Results: There were a total of 108,352 pts who were included in this analysis. The median age of this cohort was 65 years (Range: 20 – 90). Of these 58,223 (54%) were male. The racial distributions of these cohorts were as follows: 78,589 (73%) White non-Hispanic (WNH), 21,292 (20%) Black non-Hispanic (BNH), 1,943 (2%) Asian Pacific-Islander (API), 293 (< 1%) Native-American (NA) and 6,235 (5%) Hispanics-any race (HIS). The estimated 1-yr OS (95% CI) was 71% (71 – 72) for WNH, 74% (73 – 74) for BNH, 77% (75 – 79) for API, 73% (68 – 78) for NA and 75% (74 – 76) for HIS. Amongst patients who received an upfront ASCT, the estimated 1-yr OS (95% CI) was 97% (97 – 98) for WNH (Reference), 98% (97 – 98) for BNH (P = 0.99), 99% (99 – 100) for API (P = 0.96) and 98% (97 – 99) for HIS (P = 0.99). Whereas amongst pts who likely never received an ASCT (75 years or older), the estimated 1-yr OS (95% CI) was 55% (54 – 56) WNH (Reference), 57% (56 – 59) for BNH (P = 0.03), 62% (58 – 67) for API (P = 0.02), 55% (43 – 72) for NA (P = 0.99) and 55% (52 – 58) for HIS (P = 0.99). Conclusions: In general, WNHs have a worse 1-yr OS compared to BNH and API. However, this disparity appears significant only among pts unlikely to get an ASCT. Further studies are required to identify explanations for such disparate outcomes based on race and use of ASCT.