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10. Identifying and describing cancer survivors: Implications for cancer survivorship research and clinical care

Author

Doose, Michelle, Mollica, Michelle A, Attai, Deanna J, Nasso, Shelley Fuld, Elena, Joanne W, Jacobsen, Paul B, Tonorezos, Emily S, and Nekhlyudov, Larissa

Subjects
Health Services and Systems, Nursing, Health Sciences, Cancer, Rehabilitation, 7.1 Individual care needs, Management of diseases and conditions, Cancer Survivors, Cross-Sectional Studies, Humans, Neoplasms, Surveys and Questionnaires, Survivors, United States, cancer survivors, cross-sectional studies, health surveys, surveys and questionnaires, Oncology and Carcinogenesis, Public Health and Health Services, Oncology & Carcinogenesis, Oncology and carcinogenesis, Public health
Abstract

BackgroundGathering information directly from cancer survivors has advanced our understanding of the cancer survivorship experience. However, it is unknown whether surveys can distinguish important subgroups of cancer survivors. This study aimed to describe the current landscape of survey questions used to identify and describe cancer survivors in national cross-sectional studies.MethodsUsing publicly available databases, the authors identified national cross-sectional surveys used in the United States within the past 15 years that included a question on self-reported history of cancer. After abstracting questions and response items used to identify cancer survivors, they conducted a descriptive analysis.ResultsThe authors identified 14 national cross-sectional surveys, with half administered to the general population and the other half administered to cancer survivors. The most common question used to identify cancer survivors was "Have you ever been told by a doctor or other health professional that you had cancer?" Most surveys had questions asking participants to identify a single cancer type (n = 11), multiple prior cancer diagnoses or types (n = 11), and the time from diagnosis (n = 12). Treatment questions varied from active treatment status to specific treatments received. Questions addressing cancer stage (n = 2), subtypes (n = 1), metastatic status (n = 3), and recurrence (n = 4) were less frequently included.ConclusionsThere is no standard method for assessing self-reported cancer history, and this limits the ability to distinguish among potentially important subgroups of survivors. Future cross-sectional surveys that capture nuanced data elements, such as cancer types, stages/subtypes, metastatic/recurrent status, and treatments received, can help to fill important gaps in cancer survivorship research and clinical care.

Published
2022

19. Advancing health equity in cancer survivorship research: National Institutes of Health 2017–2022 portfolio review.

Author

Doose, Michelle, Mollica, Michelle A, Acevedo, Amanda M, Tesauro, Gina, Gallicchio, Lisa, Reed, Crystal, Guida, Jennifer, Maher, Molly E, Srinivasan, Shobha, and Tonorezos, Emily

Subjects
*MENTAL health services, *HEALTH equity, *SEXUAL minorities, *EVIDENCE gaps, *MINORITIES
Abstract

Background Communities and researchers have called for a paradigm shift from describing health disparities to a health equity research agenda that addresses structural drivers. Therefore, we examined whether the cancer survivorship research portfolio has made this shift. Methods We identified grants focused on populations experiencing health disparities from the National Institutes of Health (NIH) Cancer Survivorship Research Portfolio (N  =   724), Fiscal Years 2017–2022. Grant characteristics were abstracted, drivers of health disparities were mapped onto the levels and domains of influence, and opportunities for future research were identified. Results A total of 147 survivorship grants focused on health disparities were identified, of which 73.5% of grants focused on survivors from racial and ethnic minoritized groups, 25.9% living in rural areas, 24.5% socioeconomically disadvantaged, and 2.7% sexual and gender minority groups. Study designs were 51.0% observational; 82.3% of grants measured or intervened on at least 1 individual-level of influence compared to higher levels of influence (32.7% interpersonal, 41.5% institutional and community, and 12.2% societal). Behavioral and health care system domains of influence were commonly represented, especially at the individual level (47.6% and 36.1%, respectively). Less frequently represented was the physical and built environment (12.2%). Conclusions NIH-funded cancer survivorship research on health disparities is still focused on individual level of influence. However, the proportion of grants examining structural and social drivers as well as the mechanisms that drive disparities in health care and health outcomes among cancer survivors have increased over time. Gaps in funded research on specific populations, cancer types, and focus areas of survivorship science were identified and warrant priority. [ABSTRACT FROM AUTHOR]

Published
2024
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25. Examining colorectal cancer survivors’ surveillance patterns and experiences of care: a SEER-CAHPS study

Author

Mollica, Michelle A, Enewold, Lindsey R, Lines, Lisa M, Halpern, Michael T, Schumacher, Jessica R, Hays, Ron D, Gibson, James T, Schussler, Nicola, and Kent, Erin E

Subjects
Biomedical and Clinical Sciences, Health Services and Systems, Public Health, Clinical Sciences, Health Sciences, Health Services, Colo-Rectal Cancer, Clinical Research, Aging, Digestive Diseases, Prevention, Cancer, Patient Safety, 7.1 Individual care needs, Management of diseases and conditions, Good Health and Well Being, Aged, Cancer Survivors, Colonoscopy, Colorectal Neoplasms, Continuity of Patient Care, Female, Humans, Male, Medicare, Physician-Patient Relations, Registries, SEER Program, United States, Colon cancer, Rectal cancer, Surveillance, Guideline adherence, Patient experiences, Oncology and Carcinogenesis, Public Health and Health Services, Epidemiology, Oncology and carcinogenesis
Abstract

PurposeWe examined associations between experiences of care and adherence to surveillance guidelines among Medicare Fee-For-Service beneficiaries with colorectal cancer (CRC).MethodsUsing linked data from the National Cancer Institute's Surveillance, Epidemiology, and End results (SEER) cancer registry program and the Medicare Consumer Assessment of Healthcare Providers and Systems (CAHPS®) patient experience surveys (SEER-CAHPS), we identified local/regional CRC survivors diagnosed in 1999-2009 aged 65+, who underwent surgical resection and completed a CAHPS survey

Published
2017

35. Palliative Intent Treatment and Palliative Care Delivery for Individuals With Advanced Nonsmall Cell Lung Cancer and Melanoma: A Patterns of Care Study.

Author

Mollica, Michelle A., Gallicchio, Lisa, Stevens, Jennifer L., Tonorezos, Emily, Jacobsen, Paul B., Filipski, Kelly K., and Halpern, Michael T.

Subjects
*EVALUATION of medical care, *MELANOMA treatment, *MELANOMA diagnosis, *LUNG cancer, *CANCER patient psychology, *DATABASES, *STATISTICS, *MULTIVARIATE analysis, *MULTIPLE regression analysis, *MELANOMA, *TUMOR classification, *MENTAL depression, *DESCRIPTIVE statistics, *PALLIATIVE treatment, *PROPORTIONAL hazards models, *PSYCHOLOGICAL distress, *SYMPTOMS
Abstract

Introduction: This study aimed to describe the patterns of palliative intent treatment and/or palliative care (PC) delivery among a population-based sample of individuals diagnosed with advanced nonsmall cell lung cancer (NSCLC) or advanced melanoma. Methods: Data from 655 advanced-stage melanoma patients and 2688 advanced-stage NSCLC patients included in the National Cancer Institute's 2017/2018 Patterns of Care study were analyzed. Bivariate and multivariate logistic regression analyses examined factors associated with (1) receipt of PC (including palliative surgery, radiation, and/or systemic therapy after cancer diagnosis, and PC consultations); and (2) timing from diagnosis to receipt of PC. Proportional hazards models also examined factors associated with timing of receipt of PC after diagnosis. Results: A total of 23.5% of those with melanoma and 52.6% of those with NSCLC received some type of PC. For melanoma, stage 4 (vs. stage 3) was associated with higher receipt of PC and receipt within three months of diagnosis. For NSCLC, stage 4 (vs. stage 3) and a diagnosis of depression or psychosocial distress within three months of diagnosis were significantly associated with receipt of PC and receipt within three months of diagnosis. Conclusion: Study findings indicate that those with advanced-stage cancer or who report distress are more likely to receive palliative intent treatment and/or PC. Given that individuals with advanced cancers are living longer and often experience long-lasting symptoms, it is critical to identify and overcome barriers for broadly delivering comprehensive palliative and supportive care. [ABSTRACT FROM AUTHOR]

Published
2024
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36. Contributors

Author

Abbruzzese, James L., primary, Abdel-Wahab, Omar, additional, Abou-Alfa, Ghassan K., additional, Abrahm, Janet L., additional, Abrams, Jeffrey S., additional, Abramson, Jeremy S., additional, Aisner, Dara L., additional, Alonso-Basanta, Michelle, additional, Anampa, Jesus, additional, Anderson, Megan E., additional, Antonarakis, Emmanuel S., additional, Aplenc, Richard, additional, Appelbaum, Frederick R., additional, Araujo, Luiz H., additional, Asban, Ammar, additional, Ashwood, Edward, additional, Awan, Farrukh T., additional, Aylward, Juliet L., additional, Balar, Arjun V., additional, Balentine, Courtney J., additional, Barta, Stefan K., additional, Bartlett, Nancy, additional, Basen-Engquist, Karen, additional, Beaupin, Lynda Kwon, additional, Berkowitz, Ross S., additional, Berry, Donald A., additional, Bevers, Therese, additional, Boggess, John F., additional, Brahmer, Julie R., additional, Brown, Janet, additional, Brown, Karen, additional, Brown, Powel, additional, Browner, Ilene, additional, Bunn, Paul A., additional, Burns, William R., additional, Byrd, John C., additional, Cadoo, Karen, additional, Carbone, David P., additional, Carter, H. Ballentine, additional, Castillo, Jorge J., additional, Chang, Alfred E., additional, Chang, Eric, additional, Chanock, Stephen J., additional, Chapuy, Claudia I., additional, Chauhan, Vikash P., additional, Chen, Herbert, additional, Chen, Ronald C., additional, Cheung, Nai-Kong V., additional, Choe, Jennifer H., additional, Christian, Michaele C., additional, Cinciripini, Paul M., additional, Clarke, Michael F., additional, Coleman, Robert E., additional, Coleman, Robert L., additional, Coletta, Adriana M., additional, Collins, Jerry M., additional, Connors, Jean M., additional, Cools, Michael, additional, Coombes, Kevin R., additional, Cortes, Jorge, additional, Costa, Mauro W., additional, Covey, Anne, additional, Cowan, Kenneth H., additional, Crane, Christopher H., additional, Crawford, Jeffrey, additional, Crooks, Kristy, additional, Culkin, Daniel J., additional, Czito, Brian G., additional, Dalerba, Piero, additional, Dalmau, Josep, additional, Dang, Mai, additional, D'Angelica, Michael, additional, Davies, Kurtis D., additional, Davis, Myrtle, additional, Dea, Nicolas, additional, De Jesus-Acosta, Ana, additional, DeMarzo, Angelo M., additional, DeWeese, Theodore L., additional, Diehn, Maximilian, additional, Digumarthy, Subba R., additional, Dispenzieri, Angela, additional, Do, Khanh T., additional, Dobrenkov, Konstantin, additional, Dome, Jeffrey S., additional, Doroshow, James H., additional, Dorsey, Jay F., additional, Dubard-Gault, Marianne, additional, DuBois, Steven G., additional, Duda, Dan G., additional, Dunlop, Malcolm, additional, Duska, Linda R., additional, Duvic, Madeleine, additional, El Dika, Imane, additional, El-Serag, Hashem, additional, Engelmann, Jeffrey M., additional, Ettinger, David S., additional, Fashoyin-Aje, Lola A., additional, Fearon, Eric R., additional, Ford, James M., additional, Franklin, Wilbur A., additional, Freer, Phoebe E., additional, Freidlin, Boris, additional, Freifeld, Alison G., additional, Friedlander, Terence W., additional, Friedman, Debra L., additional, Fuller, Arian F., additional, Galluzzi, Lorenzo, additional, Gebhardt, Mark C., additional, George, Daniel J., additional, Geyer, Mark B., additional, Giaccia, Amato J., additional, Gilbert, Mark R., additional, Goldner, Whitney, additional, Goldstein, Donald P., additional, Goodman, Annekathryn, additional, Goodman, Karyn A., additional, Gordon, Kathleen, additional, Graeff-Armas, Laura, additional, Greenstein, Alexander J., additional, Grossman, Stuart A., additional, Grupp, Stephan, additional, Gupta, Arjun, additional, Haider, Irfanullah, additional, Haigentz, Missak, additional, Hainsworth, John D., additional, Haithcock, Benjamin E., additional, Hallemeier, Christopher L., additional, Hanash, Samir, additional, Hanrahan, Aphrothiti J., additional, Harding, James, additional, Harrison, Michael R., additional, Hasham, Muneer G., additional, Hawk, Ernest, additional, Hayman, Jonathan, additional, Heinlen, Jonathan E., additional, Henry, N. Lynn, additional, Herman, Joseph, additional, Hobbs, Brian P., additional, Holen, Ingunn, additional, Horn, Leora, additional, Horowitz, Neil S., additional, Horwitz, Steven M., additional, Houghton, Odette, additional, Howard, Scott C., additional, Hudis, Clifford A., additional, Hunger, Stephen P., additional, Hurria, Arti, additional, Ilson, David H., additional, Im, Annie, additional, Iyer, Gopa, additional, Jaffee, Elizabeth M., additional, Jagsi, Reshma, additional, Jain, Rakesh K., additional, Jarnagin, William, additional, Jatoi, Aminah, additional, Jhingran, Anuja, additional, Johnson, David H., additional, Johnston, Brian, additional, Johnston, Patrick G., additional, Judy, Kevin D., additional, Kachnic, Lisa A., additional, Kaidar-Person, Orit, additional, Kalva, Sanjeeva, additional, Kamin, Deborah Y., additional, Kantarjian, Hagop, additional, Karakousis, Giorgos, additional, Karam-Hage, Maher, additional, Kaskas, Nadine M., additional, Kastan, Michael B., additional, Katabi, Nora, additional, Kaul, Daniel R., additional, Kelley, Scott R., additional, Kemeny, Nancy, additional, Kent, Erin E., additional, Kepp, Oliver, additional, Khagi, Simon, additional, Kilgore, Joshua E., additional, Kim, D. Nathan, additional, Kleinschmidt-DeMasters, Bette K., additional, Korn, Edward L., additional, Kroemer, Guido, additional, Ku, Geoffrey Y., additional, Kummar, Shivaani, additional, Ky, Bonnie, additional, Laheru, Daniel A., additional, Lambert, Paul F., additional, Lawler, Mark, additional, Le-Rademacher, Jennifer G., additional, Lee, John Y.K., additional, Lee, Nancy Y., additional, Lee, Susanna L., additional, Leeman, Jonathan E., additional, Linkermann, Andreas, additional, Liu, Jinsong, additional, Lo, Simon, additional, Locasale, Jason W., additional, Loprinzi, Charles L., additional, Lowery, Maeve, additional, Ludwig, Emmy, additional, Lunning, Matthew A., additional, Lustig, Robert A., additional, Machtay, Mitchell, additional, Mackall, Crystal, additional, Mahvi, David A., additional, Mahvi, David M., additional, Maity, Amit, additional, Majithia, Neil, additional, Malumbres, Marcos, additional, Maresso, Karen Colbert, additional, Martin, John D., additional, Matsuo, Koji, additional, Matthews, Natalie H., additional, Mauro, Lauren, additional, Mayer, R. Samuel, additional, McCaskill-Stevens, Worta, additional, McNamara, Megan A., additional, Mehta-Shah, Neha, additional, Merritt, Robert E., additional, Milowsky, Matthew I., additional, Minasian, Lori M., additional, Mitchell, Tara C., additional, Mitsis, Demytra, additional, Mollica, Michelle, additional, Mooney, Margaret, additional, Moustafa, Farah, additional, Nabati, Lida, additional, Naidoo, Jarushka, additional, Narang, Amol, additional, Nelson, Heidi, additional, Nelson, William G., additional, Nesbit, Suzanne, additional, Niglas, Mark, additional, O'Connor, Tracey, additional, Offit, Kenneth, additional, Onciu, Mihaela, additional, O’Reilly, Eileen M., additional, Ostrander, Elaine A., additional, Pappas-Taffer, Lisa, additional, Pardoll, Drew, additional, Park, Jae H., additional, Patel, Anery, additional, Patel, Anish J., additional, Patierno, Steven R., additional, Pavletic, Steven Z., additional, Phillips, Peter C., additional, Post, Miriam D., additional, Pruitt, Amy A., additional, Querfeld, Christiane, additional, Rabius, Vance A., additional, Rajkumar, S. Vincent, additional, Ramadan, Mohammad O., additional, Rankin, Erinn B., additional, Reddy, Sushanth, additional, Reid, Michael A., additional, Reznik, Scott, additional, Rizack, Tina, additional, Robinson, Jason D., additional, Robinson-Bostom, Leslie, additional, Rodriguez-Galindo, Carlos, additional, Romesser, Paul B., additional, Rosen, Steven T., additional, Rosenfeld, Myrna R., additional, Rosenthal, Nadia, additional, Ross, Meredith, additional, Rowland, Julia H., additional, Russell, Anthony H., additional, Sabel, Michael S., additional, Sahgal, Arjun, additional, Salinas, Ryan D., additional, Salo-Mullen, Erin E., additional, Salto-Tellez, Manuel, additional, Sanderson, Sydney M., additional, Sandlund, John T., additional, Santana, Victor M., additional, Savage, Michelle, additional, Schreiber, Eric C., additional, Schuchter, Lynn, additional, Schultz, Liora, additional, Seiden, Michael V., additional, Sellers, Morgan M., additional, Shah, Payal D., additional, Shia, Jinru, additional, Shilo, Konstantin, additional, Small, Eric, additional, Smith, Angela B., additional, Snow, Stephen N., additional, Solit, David B., additional, Sood, Anil K., additional, Soto-Perez-de-Celis, Enrique, additional, Sparano, Joseph A., additional, Spiegelman, Vladimir S., additional, Spunt, Sheri L., additional, Stadler, Zsofia K., additional, Steensma, David P., additional, Stone, Richard M., additional, Stranne, Steven Kent, additional, Stratton, Kelly, additional, Sugden, Bill, additional, Swanson, Andrew M., additional, Tallman, Martin S., additional, Talmadge, James E., additional, Teachey, David T., additional, Teba, Catalina V., additional, Tefferi, Ayalew, additional, Teh, Bin Tean, additional, Teng, Joyce M.C., additional, Tepper, Joel E., additional, Thaker, Premal H., additional, Thrift, Aaron P., additional, Tran, Arthur-Quan, additional, Triska, Grace, additional, Trump, Donald, additional, Tsai, Kenneth, additional, Tseng, Chia-Lin, additional, Tseng, Diane, additional, Van Schaeybroeck, Sandra, additional, Van Tine, Brian A., additional, Vanness, Erin R., additional, Varadhachary, Gauri, additional, Varella-Garcia, Marileila, additional, Wahl, Richard L., additional, Walsh, Michael F., additional, Wang, Thomas, additional, Weiss, Jared, additional, Weissman, Irving L., additional, Westin, Shannon N., additional, White, Jeffrey D., additional, Wilson, Richard, additional, Wong, Richard J., additional, Wood, Gary S., additional, Xu, Yaohui G., additional, Xu-Welliver, Meng, additional, Yust-Katz, Shlomit, additional, Zagar, Timothy, additional, Zeman, Elaine M., additional, Zhang, Tian, additional, and Zwiebel, James A., additional

Published
2020
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37. Survivorship

Author

Rowland, Julia H., primary, Mollica, Michelle, additional, and Kent, Erin E., additional

Published
2020
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49. Childhood Cancer Information-Seeking: Findings from the National Cancer Institute's Cancer Information Service.

Author

Vanderpool, Robin C., Huang, Grace, Wilson, Ashley, Gordon, Rebecca, Mollica, Michelle A., and Maynard, Candace Deaton

Abstract

The benefits of cancer information-seeking may be particularly salient to individuals impacted by childhood cancer, including patients, caregivers, health professionals, and advocates. The purpose of this study was to explore information-seeking patterns for childhood cancer through the National Cancer Institute's Cancer Information Service (CIS), a multi-channel, bilingual resource for cancer information. The study team conducted descriptive analyses on secondary data characterizing 1820 caregivers, health professionals, organizations, and members of the general public who contacted the CIS about childhood cancer between September 2018 and June 2022. Almost 80% of inquiries about childhood cancer were initiated by caregivers, followed by the public, health professionals, and organizations. Although English was the primary language used by individuals to reach the CIS when discussing childhood cancer, there were variations in points of access (i.e., telephone, instant messaging, email, social media) across the four user groups. Most childhood cancer inquiries were about staging and treatment, and the primary cancer sites discussed by CIS users were neurologic or brain, hematologic, and musculoskeletal cancers. Discussion topics included managing and coping with cancer, clinical trials, and treatment side effects. Just over half (54%) of CIS contacts about childhood cancer resulted in a health professional referral. Findings provide direction for the CIS and other public health organizations to deliver, prioritize, and tailor their services to support the information needs of childhood cancer survivors and their families-as well as those who care and advocate for them-who may have a significant need for credible cancer information. [ABSTRACT FROM AUTHOR]

Published
2023
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50. Spirituality is associated with better prostate cancer treatment decision making experiences

Author

Mollica, Michelle A., Underwood, Willie, Homish, Gregory G., Homish, D. Lynn, and Orom, Heather

Subjects
Medical care -- Research -- United States, Prostate cancer -- Research -- Care and treatment -- Development and progression, Psychology and mental health
Abstract

This study examined whether spiritual beliefs are associated with greater decision-making satisfaction, lower decisional conflict and decision-making difficulty with the decision-making process in newly diagnosed men with prostate cancer. Participants were 1114 men diagnosed with localized prostate cancer who had recently made their treatment decision, but had not yet been treated. We used multivariable linear regression to analyze relationships between spirituality and decision-making satisfaction, decisional conflict, and decision-making difficulty, controlling for optimism and resilience, and clinical and sociodemographic factors. Results indicated that greater spirituality was associated with greater decision-making satisfaction (B = 0.02; p < 0.001), less decisional conflict (B = -0.42; p < 0.001), and less decision-making difficulty (B = -0.08; p < 0.001). These results confirm that spiritual beliefs may be a coping resource during the treatment decision-making process. Providing opportunities for patients to integrate their spiritual beliefs and their perceptions of their cancer diagnosis and trajectory could help reduce patient uncertainty and stress during this important phase of cancer care continuum., Author(s): Michelle A. Mollica[sup.1] [sup.2] , Willie Underwood[sup.3] , Gregory G. Homish[sup.1] , D. Lynn Homish[sup.1] , Heather Orom[sup.1] Author Affiliations: (1) Department of Community Health and Health Behavior, School [...]

Published
2016
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