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6. In proportion: approaches for displaying patient-reported outcome research study results as percentages responding to treatment

Author

Tolbert, Elliott, Brundage, Michael, Bantug, Elissa, Blackford, Amanda L, Smith, Katherine, and Snyder, Claire

Subjects
Health Services and Systems, Health Sciences, Clinical Research, Cancer, Clinical Trials and Supportive Activities, 7.3 Management and decision making, Management of diseases and conditions, Adult, Aged, Communication, Decision Making, Female, Humans, Internet, Male, Middle Aged, Neoplasms, Patient Reported Outcome Measures, Quality of Life, Research Personnel, Surveys and Questionnaires, Survivors, Patient-reported outcomes, Decision-making, Educational materials, Decision aids, PRO Data Presentation Stakeholder Advisory Board, Public Health and Health Services, Psychology, Health Policy & Services, Health sciences, Human society
Abstract

PurposePatient-reported outcome (PRO) data from clinical trials can promote valuable patient-clinician communication and aid the decision-making process regarding treatment options. Despite these benefits, both patients and doctors face challenges in interpreting PRO scores. The purpose of this study was to identify best practices for presenting PRO results expressed as proportions of patients with changes from baseline (improved/stable/worsened) for use in patient educational materials and decision aids.MethodsWe electronically surveyed adult cancer patients/survivors, oncology clinicians, and PRO researchers, and conducted one-on-one cognitive interviews with patients/survivors and clinicians. Participants saw clinical trial data comparing two treatments as proportions changed using three different formats: pie charts, bar graphs, icon arrays. Interpretation accuracy, clarity, and format preference were analyzed quantitatively and online survey comments and interviews, qualitatively.ResultsThe internet sample included 629 patients, 139 clinicians, and 249 researchers; 10 patients and 5 clinicians completed interviews. Bar graphs were less accurately interpreted than pie charts (OR 0.39; p

Published
2019

10. Association of treatment-emergent symptoms identified by patient-reported outcomes with adjuvant endocrine therapy discontinuation

Author

Smith, Karen Lisa, Verma, Neha, Blackford, Amanda L., Lehman, Jennifer, Westbrook, Kelly, Lim, David, Fetting, John, Wolff, Antonio C., Jelovac, Daniela, Miller, Robert S., Connolly, Roisin, Armstrong, Deborah K., Nunes, Raquel, Visvanathan, Kala, Riley, Carol, Papathakis, Katie, Zafman, Nelli, Sheng, Jennifer Y., Snyder, Claire, and Stearns, Vered

Published
2022
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12. Phase 1 study of the histone deacetylase inhibitor entinostat plus clofarabine for poor-risk Philadelphia chromosome-negative (newly diagnosed older adults or adults with relapsed refractory disease) acute lymphoblastic leukemia or biphenotypic leukemia

Author

Carraway, Hetty E., Sawalha, Yazeed, Gojo, Ivana, Lee, Min-Jung, Lee, Sunmin, Tomita, Yusuke, Yuno, Akira, Greer, Jackie, Smith, B. Douglas, Pratz, Keith W., Levis, Mark J., Gore, Steven D., Ghosh, Nilanjan, Dezern, Amy, Blackford, Amanda L., Baer, Maria R., Gore, Lia, Piekarz, Richard, Trepel, Jane B., and Karp, Judith E.

Published
2021
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16. Housing assistance among patients with cancer: SEER-Medicare US Department of Housing and Urban Development data linkage.

Author

Pollack, Craig Evan, Garrison, Veronica, Johnson, Taylor, Blackford, Amanda L, Banks, Bob, Howe, William, Yabroff, K Robin, and Enewold, Lindsey

Subjects
HOUSING, MEDICARE Part A, MEDICARE Part B, INCOME, SOCIAL determinants of health
Abstract

Background Lack of stable, affordable housing is an important social determinant of health. Federal housing assistance may buffer against housing vulnerabilities among low-income households, but research examining the association of housing assistance and cancer care has been limited. We introduce a new linkage of Surveillance, Epidemiology, and End Results (SEER) program-Medicare and US Department of Housing and Urban Development (HUD) administrative data. Methods Individuals enrolled in HUD public and assisted housing programs between 2006 and 2021 were linked with cancer diagnoses between 2006 and 2019 identified in the SEER-Medicare data from 16 states using Match*Pro (National Institutes of Health, Bethesda, MD) probabilistic linkage software. HUD administrative data include timing and type of housing assistance as well as verified household income. Medicare administrative data are available through 2020. Results A total of 335 490 unique individuals who received housing assistance at any time point, including 156 794 who received housing assistance around the time of their diagnosis (at least 6 months before diagnosis until 6 months after diagnosis or death), were matched to SEER-Medicare data. A total of 63 251 individuals receiving housing assistance at the time of their diagnosis were aged 66 years and older and continuously enrolled in Medicare parts A and B fee for service; 12 035 had a diagnosis of lung cancer, 8866 of breast cancer, 7261 of colorectal cancer, and 4703 of prostate cancer. Conclusions This novel data linkage will be available through the National Cancer Institute and can be used to explore the ways in which housing assistance is associated with cancer diagnosis, care, and outcomes, including the role of housing assistance status in potentially reducing or contributing to inequities across racialized and ethnic groups. [ABSTRACT FROM AUTHOR]

Published
2024
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18. Pancreatic Cancer Surveillance and Survival of High-Risk Individuals.

Author

Blackford, Amanda L., Canto, Marcia Irene, Dbouk, Mohamad, Hruban, Ralph H., Katona, Bryson W., Chak, Amitabh, Brand, Randall E., Syngal, Sapna, Farrell, James, Kastrinos, Fay, Stoffel, Elena M., Rustgi, Anil, Klein, Alison P., Kamel, Ihab, Fishman, Elliot, He, Jin, Burkhart, Richard, Shin, Eun Ji, Lennon, Anne Marie, and Goggins, Michael

Published
2024
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20. A Randomized Trial of Long-Term Oxygen for COPD with Moderate Desaturation

Author

Albert, Richard K, Au, David H, Blackford, Amanda L, Casaburi, Richard, Cooper, J Allen, Criner, Gerard J, Diaz, Philip, Fuhlbrigge, Anne L, Gay, Steven E, Kanner, Richard E, MacIntyre, Neil, Martinez, Fernando J, Panos, Ralph J, Piantadosi, Steven, Sciurba, Frank, Shade, David, Stibolt, Thomas, Stoller, James K, Wise, Robert, Yusen, Roger D, Tonascia, James, Sternberg, Alice L, and Bailey, William

Subjects
Rehabilitation, Lung, Clinical Trials and Supportive Activities, Chronic Obstructive Pulmonary Disease, Clinical Research, 6.7 Physical, Evaluation of treatments and therapeutic interventions, Respiratory, Aged, Exercise, Exercise Tolerance, Female, Follow-Up Studies, Hospitalization, Humans, Kaplan-Meier Estimate, Male, Middle Aged, Oxygen, Oxygen Inhalation Therapy, Patient Compliance, Pulmonary Disease, Chronic Obstructive, Quality of Life, Time Factors, Treatment Failure, Long-Term Oxygen Treatment Trial Research Group, Medical and Health Sciences, General & Internal Medicine
Abstract

BackgroundLong-term treatment with supplemental oxygen has unknown efficacy in patients with stable chronic obstructive pulmonary disease (COPD) and resting or exercise-induced moderate desaturation.MethodsWe originally designed the trial to test whether long-term treatment with supplemental oxygen would result in a longer time to death than no use of supplemental oxygen among patients who had stable COPD with moderate resting desaturation (oxyhemoglobin saturation as measured by pulse oximetry [Spo2], 89 to 93%). After 7 months and the randomization of 34 patients, the trial was redesigned to also include patients who had stable COPD with moderate exercise-induced desaturation (during the 6-minute walk test, Spo2 ≥80% for ≥5 minutes and

Published
2016

22. Immunomodulation with pomalidomide at early lymphocyte recovery after induction chemotherapy in newly diagnosed AML and high-risk MDS

Author

Zeidner, Joshua F., Knaus, Hanna A., Zeidan, Amer M., Blackford, Amanda L., Montiel-Esparza, Raul, Hackl, Hubert, Prince, Gabrielle T., Gondek, Lukasz P., Ghiaur, Gabriel, Showel, Margaret M., DeZern, Amy E., Pratz, Keith W., Douglas Smith, B., Levis, Mark J., Gore, Steven, Coombs, Catherine C., Foster, Matthew C., Streicher, Howard, Karp, Judith E., Luznik, Leo, and Gojo, Ivana

Published
2020
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23. Risk of Marrow Neoplasms After Adjuvant Breast Cancer Therapy: The National Comprehensive Cancer Network Experience

Author

Wolff, Antonio C, Blackford, Amanda L, Visvanathan, Kala, Rugo, Hope S, Moy, Beverly, Goldstein, Lori J, Stockerl-Goldstein, Keith, Neumayer, Leigh, Langbaum, Terry S, Theriault, Richard L, Hughes, Melissa E, Weeks, Jane C, and Karp, Judith E

Subjects
Clinical Research, Prevention, Hematology, Breast Cancer, Cancer, Patient Safety, Evaluation of treatments and therapeutic interventions, 6.1 Pharmaceuticals, Adolescent, Adult, Aged, Aged, 80 and over, Antineoplastic Combined Chemotherapy Protocols, Bone Marrow Neoplasms, Breast Neoplasms, Cohort Studies, Databases, Factual, Female, Follow-Up Studies, Humans, Incidence, Mastectomy, Middle Aged, Neoplasm Staging, Outcome Assessment, Health Care, Radiotherapy, Risk Factors, SEER Program, Survival Analysis, United States, Young Adult, Clinical Sciences, Oncology and Carcinogenesis, Oncology & Carcinogenesis
Abstract

PurposeOutcomes for early-stage breast cancer have improved. First-generation adjuvant chemotherapy trials reported a 0.27% 8-year cumulative incidence of myelodysplastic syndrome/acute myelogenous leukemia. Incomplete ascertainment and follow-up may have underestimated subsequent risk of treatment-associated marrow neoplasm (MN).Patients and methodsWe examined the MN frequency in 20,063 patients with stage I to III breast cancer treated at US academic centers between 1998 and 2007. Time-to-event analyses were censored at first date of new cancer event, last contact date, or death and considered competing risks. Cumulative incidence, hazard ratios (HRs), and comparisons with Surveillance, Epidemiology, and End Results estimates were obtained. Marrow cytogenetics data were reviewed.ResultsFifty patients developed MN (myeloid, n = 42; lymphoid, n = 8) after breast cancer (median follow-up, 5.1 years). Patients who developed MN had similar breast cancer stage distribution, race, and chemotherapy exposure but were older compared with patients who did not develop MN (median age, 59.1 v 53.9 years, respectively; P = .03). Two thirds of patients had complex MN cytogenetics. Risk of MN was significantly increased after surgery plus chemotherapy (HR, 6.8; 95% CI, 1.3 to 36.1) or after all modalities (surgery, chemotherapy, and radiation; HR, 7.6; 95% CI, 1.6 to 35.8), compared with no treatment with chemotherapy. MN rates per 1,000 person-years were 0.16 (surgery), 0.43 (plus radiation), 0.46 (plus chemotherapy), and 0.54 (all three modalities). Cumulative incidence of MN doubled between years 5 and 10 (0.24% to 0.48%); 9% of patients were alive at 10 years.ConclusionIn this large early-stage breast cancer cohort, MN risk after radiation and/or adjuvant chemotherapy was low but higher than previously described. Risk continued to increase beyond 5 years. Individual risk of MN must be balanced against the absolute survival benefit of adjuvant chemotherapy.

Published
2015

33. Supplementary Data Tables S1-S5 from Diagnostic Performance of a Tumor Marker Gene Test to Personalize Serum CA19–9 Reference Ranges

Author

Dbouk, Mohamad, primary, Abe, Toshiya, primary, Koi, Chiho, primary, Ando, Yohei, primary, Saba, Helena, primary, Abou Diwan, Elizabeth, primary, MacGregor-Das, Anne, primary, Blackford, Amanda L., primary, Mocci, Evelina, primary, Beierl, Katie, primary, Dbouk, Ali, primary, He, Jin, primary, Burkhart, Richard, primary, Lennon, Anne Marie, primary, Sokoll, Lori, primary, Canto, Marcia Irene, primary, Eshleman, James R., primary, and Goggins, Michael, primary

Published
2023
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34. Supplementary Data 2 from Diagnostic Performance of a Tumor Marker Gene Test to Personalize Serum CA19–9 Reference Ranges

Author

Dbouk, Mohamad, primary, Abe, Toshiya, primary, Koi, Chiho, primary, Ando, Yohei, primary, Saba, Helena, primary, Abou Diwan, Elizabeth, primary, MacGregor-Das, Anne, primary, Blackford, Amanda L., primary, Mocci, Evelina, primary, Beierl, Katie, primary, Dbouk, Ali, primary, He, Jin, primary, Burkhart, Richard, primary, Lennon, Anne Marie, primary, Sokoll, Lori, primary, Canto, Marcia Irene, primary, Eshleman, James R., primary, and Goggins, Michael, primary

Published
2023
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35. Data from Diagnostic Performance of a Tumor Marker Gene Test to Personalize Serum CA19–9 Reference Ranges

Author

Dbouk, Mohamad, primary, Abe, Toshiya, primary, Koi, Chiho, primary, Ando, Yohei, primary, Saba, Helena, primary, Abou Diwan, Elizabeth, primary, MacGregor-Das, Anne, primary, Blackford, Amanda L., primary, Mocci, Evelina, primary, Beierl, Katie, primary, Dbouk, Ali, primary, He, Jin, primary, Burkhart, Richard, primary, Lennon, Anne Marie, primary, Sokoll, Lori, primary, Canto, Marcia Irene, primary, Eshleman, James R., primary, and Goggins, Michael, primary

Published
2023
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36. Supplementary Data 1 from Diagnostic Performance of a Tumor Marker Gene Test to Personalize Serum CA19–9 Reference Ranges

Author

Dbouk, Mohamad, primary, Abe, Toshiya, primary, Koi, Chiho, primary, Ando, Yohei, primary, Saba, Helena, primary, Abou Diwan, Elizabeth, primary, MacGregor-Das, Anne, primary, Blackford, Amanda L., primary, Mocci, Evelina, primary, Beierl, Katie, primary, Dbouk, Ali, primary, He, Jin, primary, Burkhart, Richard, primary, Lennon, Anne Marie, primary, Sokoll, Lori, primary, Canto, Marcia Irene, primary, Eshleman, James R., primary, and Goggins, Michael, primary

Published
2023
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37. Diagnostic Performance of a Tumor Marker Gene Test to Personalize Serum CA19–9 Reference Ranges

Author

Dbouk, Mohamad, primary, Abe, Toshiya, additional, Koi, Chiho, additional, Ando, Yohei, additional, Saba, Helena, additional, Abou Diwan, Elizabeth, additional, MacGregor-Das, Anne, additional, Blackford, Amanda L., additional, Mocci, Evelina, additional, Beierl, Katie, additional, Dbouk, Ali, additional, He, Jin, additional, Burkhart, Richard, additional, Lennon, Anne Marie, additional, Sokoll, Lori, additional, Canto, Marcia Irene, additional, Eshleman, James R., additional, and Goggins, Michael, additional

Published
2023
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38. Major Histocompatibility Mismatch and Donor Choice for Second Allogeneic Bone Marrow Transplantation

Author

Imus, Philip H., Blackford, Amanda L., Bettinotti, Maria, Iglehart, Brian, Dietrich, August, Tucker, Noah, Symons, Heather, Cooke, Kenneth R., Luznik, Leo, Fuchs, Ephraim J., Brodsky, Robert A., Matsui, William H., Huff, Carol Ann, Gladstone, Douglas, Ambinder, Richard F., Borrello, Ivan M., Swinnen, Lode J., Jones, Richard J., and Bolaños-Meade, Javier

Published
2017
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43. T cell immune deficiency rather than chromosome instability predisposes patients with short telomere syndromes to squamous cancers

Author

Schratz, Kristen E., primary, Flasch, Diane A., additional, Atik, Christine C., additional, Cosner, Zoe L., additional, Blackford, Amanda L., additional, Yang, Wentao, additional, Gable, Dustin L., additional, Vellanki, Paz J., additional, Xiang, Zhimin, additional, Gaysinskaya, Valeriya, additional, Vonderheide, Robert H., additional, Rooper, Lisa M., additional, Zhang, Jinghui, additional, and Armanios, Mary, additional

Published
2023
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44. Data from The Effects of a Remote-based Weight Loss Program on Adipocytokines, Metabolic Markers, and Telomere Length in Breast Cancer Survivors: the POWER-Remote Trial

Author

Santa-Maria, Cesar A., primary, Coughlin, Janelle W., primary, Sharma, Dipali, primary, Armanios, Mary, primary, Blackford, Amanda L., primary, Schreyer, Colleen, primary, Dalcin, Arlene, primary, Carpenter, Ashley, primary, Jerome, Gerald J., primary, Armstrong, Deborah K., primary, Chaudhry, Madhu, primary, Cohen, Gary I., primary, Connolly, Roisin M., primary, Fetting, John, primary, Miller, Robert S., primary, Smith, Karen L., primary, Snyder, Claire, primary, Wolfe, Andrew, primary, Wolff, Antonio C., primary, Huang, Chiung-Yu, primary, Appel, Lawrence J., primary, and Stearns, Vered, primary

Published
2023
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47. Supplemental Figure 2 from The Effects of a Remote-based Weight Loss Program on Adipocytokines, Metabolic Markers, and Telomere Length in Breast Cancer Survivors: the POWER-Remote Trial

Author

Santa-Maria, Cesar A., primary, Coughlin, Janelle W., primary, Sharma, Dipali, primary, Armanios, Mary, primary, Blackford, Amanda L., primary, Schreyer, Colleen, primary, Dalcin, Arlene, primary, Carpenter, Ashley, primary, Jerome, Gerald J., primary, Armstrong, Deborah K., primary, Chaudhry, Madhu, primary, Cohen, Gary I., primary, Connolly, Roisin M., primary, Fetting, John, primary, Miller, Robert S., primary, Smith, Karen L., primary, Snyder, Claire, primary, Wolfe, Andrew, primary, Wolff, Antonio C., primary, Huang, Chiung-Yu, primary, Appel, Lawrence J., primary, and Stearns, Vered, primary

Published
2023
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48. Supplementary table 8 from Smoking Modifies Pancreatic Cancer Risk Loci on 2q21.3

Author

Mocci, Evelina, primary, Kundu, Prosenjit, primary, Wheeler, William, primary, Arslan, Alan A., primary, Beane-Freeman, Laura E., primary, Bracci, Paige M., primary, Brennan, Paul, primary, Canzian, Federico, primary, Du, Mengmeng, primary, Gallinger, Steven, primary, Giles, Graham G., primary, Goodman, Phyllis J., primary, Kooperberg, Charles, primary, Le Marchand, Loic, primary, Neale, Rachel E., primary, Shu, Xiao-Ou, primary, Visvanathan, Kala, primary, White, Emily, primary, Zheng, Wei, primary, Albanes, Demetrius, primary, Andreotti, Gabriella, primary, Babic, Ana, primary, Bamlet, William R., primary, Berndt, Sonja I., primary, Blackford, Amanda L., primary, Bueno-de-Mesquita, Bas, primary, Buring, Julie E., primary, Campa, Daniele, primary, Chanock, Stephen J., primary, Childs, Erica J., primary, Duell, Eric J., primary, Fuchs, Charles S., primary, Gaziano, J. Michael, primary, Giovannucci, Edward L., primary, Goggins, Michael G., primary, Hartge, Patricia, primary, Hassan, Manal M., primary, Holly, Elizabeth A., primary, Hoover, Robert N., primary, Hung, Rayjean J., primary, Kurtz, Robert C., primary, Lee, I-Min, primary, Malats, Núria, primary, Milne, Roger L., primary, Ng, Kimmie, primary, Oberg, Ann L., primary, Panico, Salvatore, primary, Peters, Ulrike, primary, Porta, Miquel, primary, Rabe, Kari G., primary, Riboli, Elio, primary, Rothman, Nathaniel, primary, Scelo, Ghislaine, primary, Sesso, Howard D., primary, Silverman, Debra T., primary, Stevens, Victoria L., primary, Strobel, Oliver, primary, Thompson, Ian M., primary, Tjonneland, Anne, primary, Trichopoulou, Antonia, primary, Van Den Eeden, Stephen K., primary, Wactawski-Wende, Jean, primary, Wentzensen, Nicolas, primary, Wilkens, Lynne R., primary, Yu, Herbert, primary, Yuan, Fangcheng, primary, Zeleniuch-Jacquotte, Anne, primary, Amundadottir, Laufey T., primary, Li, Donghui, primary, Jacobs, Eric J., primary, Petersen, Gloria M., primary, Wolpin, Brian M., primary, Risch, Harvey A., primary, Kraft, Peter, primary, Chatterjee, Nilanjan, primary, Klein, Alison P., primary, and Stolzenberg-Solomon, Rachael, primary

Published
2023
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