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1.  Use of Social Media to Conduct a Cross-Sectional Epidemiologic and Quality of Life Survey of Patients with Neuroendocrine Carcinoma of the Cervix: A Feasibility Study 
Gynecologic oncology  2013;132(1):149-153.
Objective
To determine the feasibility of using social media to perform cross-sectional epidemiologic and quality-of-life research on patients with rare gynecologic tumors, we performed a survey of patients with neuroendocrine tumors of the cervix using Facebook.
Methods
After approval from our Institutional Review Board, a support group of patients with neuroendocrine tumors of the cervix was identified on Facebook. Group members were asked to complete an survey comprising 84 questions evaluating clinical presentation; treatment; recurrence; quality of life; and sexual function.
Results
The survey was posted for 30 days, during which 57 women responded from 8 countries across 4 continents treated at 51 centers. All respondents provided a detailed clinical and tumor history. The mean age was 38.5 years. The stage distribution was stage I, 36 patients (63%); II, 13 (23%); III, 2 (4%); and IV, 6 (11%). Forty-nine patients (86%) had small cell and 8 (14%) large cell tumors. Forty-five of the respondents (79%) had completed primary therapy, 53 (93%) had no evidence of disease, and 8 (14%) had recurrent disease. Forty-one patients (72%) reported symptoms at time of presentation. Thirty-seven patients (65%) received multimodality primary therapy. Quality of life instruments demonstrated high scores for anxiety and a negative impact of anxiety and cancer on functional and emotional well-being. Sexual function scores did not differ significantly between respondents and the PROMIS reference population.
Conclusions
Use of a social media network to perform epidemiologic and quality of life research on patients with rare gynecologic tumors is feasible and permits such research to be conducted efficiently and rapidly.
doi:10.1016/j.ygyno.2013.10.015
PMCID: PMC4265467  PMID: 24145111
cervix; neuroendocrine; small cell; large cell; social media; Facebook
2.  Impact of cardiovascular comorbidity on ovarian cancer mortality 
BACKGROUND
A retrospective cohort study utilizing prospectively collected data was conducted from August 2003 until March 2008 at M. D. Anderson Cancer Center. It is unknown whether cardiovascular comorbidity and chronic stress impact ovarian cancer outcome, which remains poor despite advances in therapy. The purpose of this study was to determine whether cardiovascular disease and markers that may be associated with stress are also associated with survival in ovarian cancer patients.
METHODS
Participants with newly diagnosed epithelial ovarian cancer were followed until time of death or truncation of study period (median follow-up = 4.2 years; n=271). Tumor characteristics (stage, tumor grade, histology, debulking status), demographic variables, and cardiovascular comorbidity were documented and compared to overall survival.
RESULTS
Of the 9 cardiovascular events tracked during follow-up, venous thrombo embolism (VTE; Hazard Ratio= 3.2; 95%CI =1.8–5.5) and pulmonary hypertension (Hazard Ratio=8.5; 95%CI=3.9– 18.7) were associated with shorter survival in multivariate analysis. In addition, high tumor grade, suboptimal cytoreduction, and baseline heart rate (Hazard Ratio=1.02; 95%CI= 1.01– 1.04) were related to decreased survival.
CONCLUSION
Careful management of certain cardiovascular comorbidities may extend survival in patients with ovarian cancer. Our findings suggest that increased baseline heart rate and the development of VTE and pulmonary hypertension after cancer diagnosis may be significant predictors of survival in women with ovarian cancer.
IMPACT
Our study emphasizes the importance of identifying and optimally treating tachycardia, VTE and pulmonary hypertension in conjunction with cancer therapy.
doi:10.1158/1055-9965.EPI-13-0625
PMCID: PMC3830519  PMID: 24045927
Ovarian cancer; tachycardia; VTE; survival
3.  Transitioning from Active Treatment: Colorectal Cancer Survivors’ Health Promotion Goals 
Palliative & supportive care  2012;11(2):101-109.
Objective
The purpose of this study is to describe the post-treatment goals of colorectal cancer (CRC) survivors. We sought to determine whether goals were a salient concept during the period immediately following treatment and whether a goal-setting intervention might be feasible and acceptable to these patients.
Methods
Semi-structured qualitative interviews were administered to a convenience sample of 41 CRC patients who were 0–24 months after treatment. Topics discussed included expectations and goals for future health, cancer prevention awareness, health-promoting behavior-change goals, and post-treatment cancer issues. Content analysis was used to explore emergent themes.
Results
Overall, participants’ health-related goals were being healthy, getting back to normal, and not having a cancer recurrence. Most of the CRC survivors reported being proactive with their health by maintaining healthy behaviors, making healthy behavior changes, or had goals to change their behavior. All respondents had plans to maintain follow-up care and regular screening appointments. Some patients were managing treatment side effects or non-cancer issues that limited their functional abilities. Many respondents were satisfied with the care they received and felt it was now their responsibility to take care of the rest.
Conclusions
CRC survivors talk about goals and many of them are either making or have an interest in making health behavior changes. Self-management support could be an appropriate strategy to assist patients with achieving their health goals post-treatment. Patients may need help addressing lingering treatment side effects or non-cancer issues. Healthcare providers should consider assessing patients’ goals to help patients resolve post-treatment issues and promote healthy behaviors.
doi:10.1017/S1478951512000788
PMCID: PMC3615141  PMID: 23089464
colorectal cancer; survivorship; health promotion; goals; post-treatment
4.  A Pilot Study on Using Eye Tracking to Understand Assessment of Surgical Outcomes from Clinical Photography 
Journal of Digital Imaging  2010;24(5):778-786.
Appearance changes resulting from breast cancer treatment impact the quality of life of breast cancer survivors, but current approaches to evaluating breast characteristics are very limited. It is challenging, even for experienced plastic surgeons, to describe how different aspects of breast morphology impact overall assessment of esthetics. Moreover, it is difficult to describe what they are looking for in a manner that facilitates quantification. The goal of this study is to assess the potential of using eye-tracking technology to understand how plastic surgeons assess breast morphology by recording their gaze path while they rate physical characteristics of the breasts, e.g., symmetry, based on clinical photographs. In this study, dwell time, transition frequency, dwell sequence conditional probabilities, and dwell sequence joint probabilities were analyzed across photographic poses and three observers. Dwell-time analysis showed that all three surgeons spent the majority of their time on the anterior–posterior (AP) views. Similarly, transition frequency analysis between regions showed that there were substantially more transitions between the breast regions in the AP view, relative to the number of transitions between other views. The results of both the conditional and joint probability analyses between the breast regions showed that the highest probabilities of transitions were observed between the breast regions in the AP view (APRB, APLB) followed by the oblique views and the lateral views to complete evaluation of breast surgical outcomes.
doi:10.1007/s10278-010-9338-x
PMCID: PMC3180533  PMID: 20852914
Breast neoplasm; Eye movements; Biomedical image analysis; Decision support; Evaluation research
5.  Exercise Intervention for Cancer Survivors with Heart Failure: Two Case Reports 
Rationale
Cardiotoxicity is a troubling long-term side effect of chemotherapy cancer treatment, affecting therapy and quality of life (QOL). Exercise is beneficial in heart failure (HF) patients and in cancer survivors without HF, but has not been tested in cancer survivors with treatment induced HF.
Methods
We present case studies for two survivors: a 56-year old female Hodgkin’s lymphoma survivor (Pt 1) and a 44-year old male leukemia survivor (Pt 2). We conducted a 16-week exercise program with the goal of 30 minutes of exercise performed 3 times per week at a minimum intensity of 50% heart rate reserve (HRR) or ‘12’ rating of perceived exertion (RPE).
Results
Pt 1 improved from 11.5 minutes of exercise split over two bouts at an RPE of 14 to a 30 minute bout at an RPE of 15. Pt 2 improved from 11 minutes of exercise split over two bouts at an RPE of 12 to an 18 minute bout at an RPE of 12. Both improved in VO2 peak (Pt 1: 13.9 to 14.3 mlO2/kg/min; Pt 2: 12.5 to 18.7 mlO2/kg/min). Ejection fraction increased for Pt 2 (25–30% to 35–40%) but not for Pt 1 (35–40%). QOL as assessed by the SF-36 Physical Component Scale (PCS) improved from 17.79 to 25.31 for Pt 1 and the Mental Component Scale (MCS) improved from 43.84 to 56.65 for Pt 1 and from 34.79 to 44.45 for Pt 2.
Conclusions
Properly designed exercise interventions can improve physical functioning and quality of life for this growing group of survivors.
PMCID: PMC3121107  PMID: 21709755
cancer survivorship; cardiotoxicity; exercise; quality of life
6.  Testis Cancer Survivors' Health Behaviors: Comparison With Age-Matched Relative and Demographically Matched Population Controls 
Journal of Clinical Oncology  2010;28(13):2274-2279.
Purpose
To determine the prevalence rate of health behaviors in testis cancer survivors and to determine whether the rate of health behaviors in survivors was significantly different than those of their age-matched relative controls and a population-based control group matched for age, sex, education, and income.
Patients and Methods
The health behaviors of 162 testis cancer survivors were compared with their age-matched relative controls (n = 74) and an age-, sex-, education-, and income-matched population-based control group (n ranged from 1,123 to 9,775). Health behaviors were assessed with the telephone-administered Behavioral Risk Factor and Surveillance Survey.
Results
Nearly one in five testis cancer survivors reported current smoking and one third reported problem drinking. Only 11% reported having at least five servings of fruits and vegetables per day. Compared with their relative controls, the survivors were more likely to engage in regular exercise. For those participants who drank, survivors were twice as likely to engage in problem drinking and averaged a higher number of drinks compared to their Centers for Disease Control (CDC) controls. Survivors were also half as likely to have at least five servings of fruits and vegetables per day compared with the CDC controls.
Conclusion
The overall picture regarding testis cancer survivors' health behaviors was mixed compared with the relative and CDC control groups. Our results suggest that reduced alcohol use and increased fruit and vegetable consumption may be important targets for future disease prevention in testis cancer survivors.
doi:10.1200/JCO.2009.23.9608
PMCID: PMC2860440  PMID: 20368572
7.  CYberinfrastructure for COmparative effectiveness REsearch (CYCORE): improving data from cancer clinical trials 
ABSTRACT
Improved approaches and methodologies are needed to conduct comparative effectiveness research (CER) in oncology. While cancer therapies continue to emerge at a rapid pace, the review, synthesis, and dissemination of evidence-based interventions across clinical trials lag in comparison. Rigorous and systematic testing of competing therapies has been clouded by age-old problems: poor patient adherence, inability to objectively measure the environmental influences on health, lack of knowledge about patients’ lifestyle behaviors that may affect cancer’s progression and recurrence, and limited ability to compile and interpret the wide range of variables that must be considered in the cancer treatment. This lack of data integration limits the potential for patients and clinicians to engage in fully informed decision-making regarding cancer prevention, treatment, and survivorship care, and the translation of research results into mainstream medical care. Particularly important, as noted in a 2009 report on CER to the President and Congress, the limited focus on health behavior-change interventions was a major hindrance in this research landscape (DHHS 2009). This paper describes an initiative to improve CER for cancer by addressing several of these limitations. The Cyberinfrastructure for Comparative Effectiveness Research (CYCORE) project, informed by the National Science Foundation’s 2007 report “Cyberinfrastructure Vision for 21st Century Discovery” has, as its central aim, the creation of a prototype for a user-friendly, open-source cyberinfrastructure (CI) that supports acquisition, storage, visualization, analysis, and sharing of data important for cancer-related CER. Although still under development, the process of gathering requirements for CYCORE has revealed new ways in which CI design can significantly improve the collection and analysis of a wide variety of data types, and has resulted in new and important partnerships among cancer researchers engaged in advancing health-related CI.
doi:10.1007/s13142-010-0005-z
PMCID: PMC3065645  PMID: 21516142
Comparative effectiveness research (CER); Information technology (IT); Neoplasms; Health behavior; Clinical trials; Environmental monitoring; Home-monitoring
8.  CYberinfrastructure for COmparative effectiveness REsearch (CYCORE): improving data from cancer clinical trials 
ABSTRACT
Improved approaches and methodologies are needed to conduct comparative effectiveness research (CER) in oncology. While cancer therapies continue to emerge at a rapid pace, the review, synthesis, and dissemination of evidence-based interventions across clinical trials lag in comparison. Rigorous and systematic testing of competing therapies has been clouded by age-old problems: poor patient adherence, inability to objectively measure the environmental influences on health, lack of knowledge about patients’ lifestyle behaviors that may affect cancer’s progression and recurrence, and limited ability to compile and interpret the wide range of variables that must be considered in the cancer treatment. This lack of data integration limits the potential for patients and clinicians to engage in fully informed decision-making regarding cancer prevention, treatment, and survivorship care, and the translation of research results into mainstream medical care. Particularly important, as noted in a 2009 report on CER to the President and Congress, the limited focus on health behavior-change interventions was a major hindrance in this research landscape (DHHS 2009). This paper describes an initiative to improve CER for cancer by addressing several of these limitations. The Cyberinfrastructure for Comparative Effectiveness Research (CYCORE) project, informed by the National Science Foundation’s 2007 report “Cyberinfrastructure Vision for 21st Century Discovery” has, as its central aim, the creation of a prototype for a user-friendly, open-source cyberinfrastructure (CI) that supports acquisition, storage, visualization, analysis, and sharing of data important for cancer-related CER. Although still under development, the process of gathering requirements for CYCORE has revealed new ways in which CI design can significantly improve the collection and analysis of a wide variety of data types, and has resulted in new and important partnerships among cancer researchers engaged in advancing health-related CI.
doi:10.1007/s13142-010-0005-z
PMCID: PMC3065645  PMID: 21516142
Comparative effectiveness research (CER); Information technology (IT); Neoplasms; Health behavior; Clinical trials; Environmental monitoring; Home-monitoring

Results 1-8 (8)