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Background: The rapid adoption of mobile technology by the public and increased emphasis on patient engagement yields an opportune time to leverage health information technology (IT). Yet, a knowledge deficit exists on the use of health IT tools for high-risk populations. Pediatric blood and marrow transplant (BMT) is a medically complex and intense intervention. We have previously shown that BMT patients and caregivers have significant information needs. As such, caregiver activation on behalf of the patient may play an important role in fostering an effective patient-caregiver-provider partnership, which is increasingly recognized as the optimal model for health care delivery. Anxiety over outcomes, compounded by information overload may limit successful activation. Health IT tools offer the potential to overcome constraints in health care delivery limited by provider time and complex health information. We hypothesized that a tablet-based tool displaying personalized health information, including real-time data from the electronic health record, could provide a platform to promote caregiver activation. The implementation and evaluation of our health IT tool (BMT Roadmap) was based on generation of user-centered needs and in collaboration with a trans-disciplinary team, including experts in BMT, health communications, psychology/health behavior, biostatistics, health informatics, and human-computer interaction research. BMT Roadmap included the following domains: 1) laboratory results; 2) medications; 3) clinical trial enrollment; 4) health care provider directory; 5) phases of transplant; and 6) interactive discharge checklist with professionally produced videos on central line care. Methods: Caregivers of pediatric BMT patients were recruited and enrolled on this IRB-approved study. They were instructed to use BMT Roadmap freely throughout the patient's admission. Data collection included mixed methods approaches. System log-use data were recorded, including number of log-ins, domains frequented, and duration of use. Quantitative survey measurements were obtained at baseline (admission), discharge, and day 100 after BMT. These validated surveys measured activation, mood, anxiety, satisfaction, quality of life, and caregiver distress. In depth qualitative interviews were performed at baseline, weekly during admission, at discharge, and at day 100. Both inductive and deductive analysis was used to identify themes for further study. Results: Ten caregivers participated in the study: 80% female, 90% white, median age 36 years (25-54 years). Transplants were 50% autologous and 50% allogeneic. Median time of use was 104.1 minutes (6.4-256.2 minutes) over 29.5 days (21-68 days). Minutes used and days used were strongly inter-correlated (r=.90, p=0.001) and correlated with inpatient days (r=.70, p=0.05; and r=.81, p=0.01 respectively). The most time spent was in the laboratory module, followed by health care provider directory, medication, and phases of care modules (Table 1). Quantitative survey results showed that trait anxiety (STAI-T) was decreased, caregiver quality of life (CQOL) was improved, and caregiver activation (C-PAM) was increased at discharge compared with baseline (Table 2). The highest level of self-rated activation, as assessed by the C-PAM survey increased from 40% (admission) to 50% (discharge), and reached 85.7% (day 100). Total C-PAM score showed a strong trend toward increased activation from admission to day 100 (p=0.08). Caregivers with higher engagement had less trait anxiety at day 100 (r=.82, p=0.02), but engagement was unrelated to minutes of iPad use, days of iPad use, inpatient days, and caregiver quality of life. Caregivers described the iPad as easy to use and all used it for some portion of their stay (Table 3). Conclusions: Our findings indicate that health IT tools adapted to specific clinical conditions have potential to increase caregiver activation. BMT Roadmap was highly useful and easy to use. Validated survey measurements indicated that trait anxiety was decreased, caregiver quality of life was improved, and caregiver activation was increased at discharge compared with baseline. Higher activation was associated with less anxiety at day 100, but unrelated to iPad use (time), inpatient days, caregiver depression, distress or quality of life. We are now expanding BMT Roadmap into the Adult BMT population. Download : Download high-res image (136KB) Download : Download full-size image Download : Download high-res image (191KB) Download : Download full-size image Download : Download high-res image (278KB) Download : Download full-size image Disclosures No relevant conflicts of interest to declare.

Background: A cancer diagnosis results in a multitude of health care decisions that require adequate patient understanding to navigate the health care system. Understanding the type and degree of information needs of cancer patients is imperative to instructing effective and pertinent patient education. This study sought to evaluate the impact of a patient centered cancer symposium on knowledge level, knowledge needs and symptom burden in a cancer patient population. Methods: Surveys were distributed to attendees of the Mayo Clinic "Living with and Surviving Cancer" patient symposium in January 2016. A follow up survey was sent to participants 3 months after the symposium. Surveys included demographic data, questionnaire evaluating disease comprehension and information assessment, symptom burden, desired information and quality of life assessment. Responses were compared between patients with hematologic and solid tumor malignancies by chi-square test. Pre and post comparisons were done in patients completing both surveys by McNemar test. Results: Demographics: 150 patients completed the pre-intervention survey. Average age of participants 67.5 years. Some patients reported more than 1 malignancy. Disease types represented included hematologic malignancies (N=60), specifically multiple myeloma (N=23), lymphoma (N=26), leukemia (N=8) and MPNs (N=3) as well as solid tumor malignancies (N=90). Most patients were diagnosed with cancer at least 1 year prior to the intervention (N=137). Patients with hematologic malignancies were more likely to be on active treatment at the time of the convention (N=35, 58%) compared to solid tumor malignancies (N=37,41%). Baseline Knowledge: Most patients reported an adequate level of knowledge defined as the proportion of participants reporting "quite a bit" or "very much understanding" on the topic of disease understanding (76%). Lowest levels of knowledge were legal issues (18%), pain management (31%), disease relapse symptoms(46%), fatigue management (48%), end of life decision making (50%) and financial management (50%). Patients with hematologic malignancies were more likely to report understanding of fatigue management (N=36, 60%) but less like to report understanding disease risk factors (N=20, 33%), or increased nutritional interest following diagnosis (N=32, 53%) compared to solid tumor malignancy (N=33,37%) (N=55,61%)(N=70,78%), respectively (all p The EORTC-INFO25 at baseline revealed hematologic patients had received less information on sexual side effects of treatments (N=7, 14%) compared to solid tumor patients (N=30, 35%; p=0.004), and reported a lower score of treatment information (50 vs 59; p=0.04). Pre and Post Analysis: Of the 150 initial participants, 81 completed the pre and post-convention surveys (54%). Post-symposium, significant improvement defined as the proportion of participants reporting "quite a bit" or "very much" understanding was noted of disease (pre 75% vs post 89%), stress management (pre 56% vs post 69%), maintain relationships (pre 60% vs post 75%) and pain management (pre 33% vs post 51%)(p-value The desire for increased information decreased post-symposium regarding all 9 topics, with significant decreases noted in disease, treatment options and side effects, legal issues and stress management. The EORTC INFO25 analysis revealed a decrease in the reported desire for more information (mean; pre 70 vs post 53, p-value Discussion: Cancer patients have a variety of information needs. A patient centered educational conference was able to produce significant improvement in understanding in 4 of 17 topics (24%), including general disease, stress and pain management, and relationship maintenance that was durable at 3 months. At least some improvement in understanding was noted in 10 of 17(59%) additional topics. Knowledge deficit improved in all 9 topics assessed, significantly in five. Cancer patient knowledge needs are varied, and likely evolve over time as a patient progress through stages of disease and treatment. Education should re-evaluate and redistribute information to cancer patients over the course of treatment and survivorship. Disclosures Mikhael: Abbvie: Research Funding; Celgene: Research Funding; Sanofi: Research Funding; Onyx: Research Funding. Dueck:Bayer: Honoraria. Mesa:Novartis: Consultancy; Ariad: Consultancy; Promedior: Research Funding; Galena: Consultancy; Incyte: Research Funding; Celgene: Research Funding; CTI Biopharma: Research Funding; Gilead: Research Funding.

Background: A diagnosis of cancer leads to significant information requirements to facilitate health care decision making, understand management options, and health care system navigation. Many patients demonstrate a knowledge deficit that can lead to decreased quality of life and poor health care compliance. This study sought to evaluate the impact of a patient centered cancer symposium on knowledge level, symptom burden, and desired information in a broad population of cancer patients. Methods: Surveys were distributed to attendees of the Mayo Clinic "Living with and Surviving Cancer" patient symposium in January 2015. A follow up survey was sent to participants 3 months after the symposium. Surveys included demographic data, questionnaire evaluating disease comprehension, symptom burden, desired information and quality of life. Results: Demographics: 113 patients completed the pre-intervention survey. Average age of participants was 64.7 years. Disease types represented included hematologic malignancies (N=50), specifically multiple myeloma (N=24), lymphoma (N=17), leukemia (N=6), MPN/MDS (n=3), as well as solid tumor malignancies (N=77). Highest knowledge topics were disease (80%), screening tests (74%), and monitoring tools (72%). Lowest knowledge topics were financial management (13%), legal issues (13%), and pain management (35%). Pre and Post Analysis: Of the 113 initial participants, 79 patients completed the pre- and post-symposium surveys. In the post-symposium setting significant improvement was noted in understanding of disease (pre 80% vs post 92%), treatment options (pre 60% vs post 76%), nutrition (pre 68% vs post 84%) and legal issues (pre 15% vs post 32%). Non-significant knowledge improvement was noted in areas of risk factors and symptoms, screening/monitoring tools, disease side effects, managing stress/fatigue, end of life decision making and health care navigation. Most patients desired increased understanding regarding disease, screening tests, nutrition, and stress and fatigue management. The level of patient reported desire for information of these topics decreased in the post-symposium setting, statistically significant decrease noted in 4 of 5 topics assessed. In hematology patients who completed pre and post surveys (N=36), a higher level of baseline knowledge was reported regarding disease understanding (89%), tools monitoring response (83%) and recurrence (75%), symptoms (83%), relapse symptoms (64%) and treatment options (72%). In this group the decrease in desire for information was less prominent in the post-symposium setting. Discussion: This data demonstrates improved patient reported understanding on a variety of topics with durable response at 3 months. A majority of patients reported adequate baseline knowledge of many topics prior to the symposium but also a desire of increased cancer specific information. Knowledge deficit in cancer care includes disease specific topics, social stressors and health care navigation. The percentage of participants reporting a high desire for more information remained high but did decrease, suggesting decreased knowledge deficit in the post-symposium setting. Patient education should strive to be accessible, all-inclusive and reactive to patient needs. Table 1.Reported "quite a bit" or "very much" understanding and desired information regarding cancer carePrePostP-valueN=79(%)N=79(%)I understand…How to manage financial considerations of my disease/treatment39(51)41(53)0.85How to manage my pain24(34)23(32)0.81Risk factors that can lead to my disease37 (49)42 (56)0.56How to navigate the health care system43(55)47(60)0.56How to manage fatigue38(50)43(56)0.54Process of making end of life decisions33(47)41(53)0.52Screening tests60 (76)63 (81)0.5Symptoms associated with relapse35(45)42(54)0.27Disease symptoms54(70)60(76)0.2Tools monitoring recurrence49(62)56 (72)0.19Tools monitoring response56(71)63(81)0.15How to manage stress46(60)56(71)0.12Legal issues of my disease11(15)24(32) Disclosures Tibes: TetraLogic Pharmaceuticals: Research Funding. Mesa:Novartis. Research- incyte, Gilead, cti, Genentech, promedior, NS Pharma: Consultancy.

Background: Patients diagnosed with cancer experience a significant influx of health care information while continuing to demonstrate understanding deficit regarding their disease and health. This knowledge deficit can negatively impact a patient’s acute and long term health care experience. By identifying patient information deficits and needs, health care providers may be better able to provide targeted education to patients and families. Aims: The aim of this study is to evaluate the impact of a patient centered cancer symposium on knowledge level, reported symptom burden, and desired information from a broad population of cancer patients. Methods: Surveys were distributed to the attendees of the third annual Mayo Clinic “Living with Cancer” patient symposium in January 2014. While 700 individuals registered for the event, only individuals with a past or present cancer diagnosis were asked to participate. Surveys included demographic data in addition to a questionnaire evaluating disease comprehension, symptom burden, desired information and desired role in the health care decision making process. Results: 75 patients completed the pre-intervention and post-intervention survey. There were slightly more female participants (60.2%). Disease types included 40% hematologic malignancies, 27% breast cancer, 20% prostate cancer and 13% other. The majority of patients were greater than 3 years from cancer diagnosis (62%). Baseline Patient Understanding: Most respondents reported understanding their disease quite a bit (54%) or very much (30%). Respondents reported the majority of their knowledge regarding their disease came from their oncologist (56%), oncology nurse (24%), previous symposiums (22%), or the internet (15%). Most respondents reported “quite a bit” or greater comprehension of screening tests (75%), monitoring disease response to treatment (70%), monitoring disease recurrence (70%), treatment options (67%) and treatment side effects (73%). There was no consensus among participants regarding understanding or limiting risk factors, symptoms associated with disease relapse, fatigue and pain management, navigating the health care system, financial considerations, or confidence in their primary care physician’s involvement in their cancer or post-cancer care. A large proportion of attendees reported “quite a bit” or greater desire for increased information/understanding regarding their disease (83%), risk factors (83%), nutrition (80%), screening tests (69%), and management of fatigue (69%) and stress (68%). Knowledge Improvement Durable at 3 months: There was improvement in 18 of 20 areas of self-reported knowledge. This was noted in increased percentage of respondents reporting “quite a bit” or greater comprehension, especially in areas of disease risk factors(55%pre vs 63%post), disease side effects(55%pre vs 63%post), and health care navigation(53%pre vs 69%post). The reported desire for “quite a bit” or more increased understanding on various topics did decrease post symposium regarding their disease(87.9% pre vs 68.9%post), disease risk factors(86.3%pre vs 64.0%post), screening tests(74.7%pre vs 63.3%post), and nutrition(78.4%pre vs 64.9%post)(all p Summary: Demonstrated in this study, individuals choosing to attend a patient-centered cancer symposium, seek to improve an already solid knowledge base. Study participants indicate a significant desire for increased information on all topics, even those with sufficient level of knowledge reported. This indicates that some cancer patients’ thirst for knowledge is difficult to quench, and may benefit from recurrent education opportunities. The improvement in almost all topics assessed indicates a patient centered symposium is an effective method to provide information to patients regarding the spectrum of cancer health management. Disclosures No relevant conflicts of interest to declare.

Background Patients with cancer may face a significant knowledge deficit as they battle their illness. We developed a first of its kind comprehensive patient symposia (Living with Cancer (LWC): A Mayo Clinic Symposia for Patients and Loved Ones) with 8 hours of general sessions (covering nutrition, exercise, cancer inheritance, financial and legal challenges, communication, survivorship, and cancer therapy) and a 4-hour disease specific breakout (myeloid diseases, myeloma, lymphoma, chronic lymphocytic leukemia, breast cancer, lung cancer, cutaneous malignancy, colorectal cancer, and prostate cancer). Through voluntary questionnaires, we studied the impact of this cancer symposium on quality of life, cancer specific knowledge, and symptom management among cancer patients. Methods LWC meeting attendees were provided surveys prior to and 3 months following the convention. Surveys included 1) EORTC-QLQ-C30; 2) new disease understanding tool developed specifically for this conference; 3) distress thermometer and problems checklist; 4) validated disease-specific questionnaires. Changes over time were assessed using McNemar’s tests and paired t-tests for categorical and continuous variables, respectively. Results Patients:158 attendees completed the pre-convention survey. The median age was 67.5 (range 30-86), 49% males, 76% over 1 year from diagnosis. Cancer type included 37% hematologic malignancies, 23% breast cancer, 23% prostate cancer, and 17% other. The hematologic malignancies were comprised of 34% leukemia, 31% CLL/lymphoma, 25% amyloid/multiple myeloma, and 9.3% myeloproliferative neoplasms. Baseline Disease Understanding, Symptoms, QOL: Most attendees endorsed understanding their disease quite a bit (54%) or very much (29%). Most respondents reported at least “quite a bit” of understanding regarding treatment options (84%), screening modalities (83%), symptomatology (74%), and cancer-related side effects (71%). Attendees endorsed the least understanding of disease-related stress (49%), risk factors (49%), management of disease related fatigue (41%), and legal issues related to disease/treatment (27%) Mean QLQ-C30 scores were 84.4 for physical functioning, 83 for role functioning, 80.7 for social functioning, and 72.7 for global health status. The symptoms with highest mean scores were insomnia, fatigue, and pain. Knowledge Improvement Durable at 3 Months: 115 (73%) patients completed the post-symposium survey. There was improvement in 12 of 14 areas of self-reported knowledge (Table 1) especially in areas of nutrition, and management of disease related stress and fatigue (all p Symptomatic Changes at 3 Months: There was no significant change in QLQ-C30 physical/role/emotional functioning, fatigue, pain, or insomnia. Conclusions This first evaluation of a patient centered cancer symposium as an education intervention suggests patients selecting to participate in such an event seek to improve an already solid knowledge base regarding their malignant disease. Participating in the event improved disease specific knowledge in numerous areas. However, as a single intervention, function and symptoms tended not to improve with participation. Future efforts on 1) improving participation with disease knowledge “naïve” patients and 2) targeted efforts aimed at specific symptom management (i.e. insomnia, stress) are planned. This study serves as an avenue to empower patients and inform physicians to improve the experience of living with cancer. Disclosures: No relevant conflicts of interest to declare.