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1. Cultural and linguistic adaptation of a telephone-based cognitive-behavioral therapy (CBT) intervention to treat depression and anxiety in Hispanic cancer survivors.

Author

Danhauer, Suzanne C., Brenes, Gretchen A., Tooze, Janet A., Abubaker, Tebianne, Thomas, Alexandra, Howard, Dianna S., Puccinelli-Ortega, Nicole, Jimenez, Karolina, and Graves, Kristi D.

Subjects
ANXIETY treatment, RESEARCH funding, HISPANIC Americans, INTERVIEWING, TRANSLATIONS, CULTURE, DESCRIPTIVE statistics, LINGUISTICS, TELEPHONES, RESEARCH methodology, CANCER patient psychology, COGNITIVE therapy, STAKEHOLDER analysis, MENTAL depression, TRANSCULTURAL medical care
Abstract

The purpose of this study was to transcreate a manualized cognitive-behavioral therapy (CBT) intervention to address depression and anxiety among Hispanic cancer survivors. Stakeholders reviewed the CBT workbook for language, content, and cultural relevance. We designed semi-structured interview guides to elicit intervention feedback. Stakeholder participants were Hispanic cancer survivors (n = 4), bilingual mental health providers (n = 2), and oncology professionals (n = 4). Transcreation was conducted by initial translation of the workbook followed by incorporation of stakeholder feedback. A bilingual (Spanish and English) interviewer conducted stakeholder interviews. The study team discussed themes/suggestions before refining the workbook. Stakeholders reported enthusiasm for the intervention. We gathered significant feedback regarding wording, images, and resources for the workbook. Development of culturally appropriate mental health resources for Hispanic cancer survivors is critical. By broadening research on psychosocial care to the Hispanic population, we increase the reach of evidence-based psychological care. Future research should fully evaluate the adapted CBT intervention among Hispanic survivors. [ABSTRACT FROM AUTHOR]

Published
2024
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2. A qualitative study of stakeholders' experiences with and acceptability of a technology‐supported health coaching intervention (SHARE‐S) delivered in coordination with cancer survivorship care.

Author

Price, Sarah N., Houston, Thomas K., Sadasivam, Rajani S., Wentworth, Stacy, Chandler, Allison, Strahley, Ashley, Kittel, Carol, Balakrishnan, Kavitha, Weaver, Kathryn E., Dellinger, Rebecca, Puccinelli‐Ortega, Nicole, Kong, Jinhee, Cutrona, Sarah L., Foley, Kristie L., and Sohl, Stephanie J.

Subjects
HEALTH coaches, CANCER treatment, HEALTH care teams, HEALTH behavior, TEXT messages, MEDICAL care accountability
Abstract

Purpose: Healthy cancer survivorship involves patients' active engagement with preventative health behaviors and follow‐up care. While clinicians and patients have typically held dual responsibility for activating these behaviors, transitioning some clinician effort to technology and health coaches may enhance guideline implementation. This paper reports on the acceptability of the Shared Healthcare Actions & Reflections Electronic systems in survivorship (SHARE‐S) program, an entirely virtual multicomponent intervention incorporating e‐referrals, remotely‐delivered health coaching, and automated text messages to enhance patient self‐management and promote healthy survivorship. Methods: SHARE‐S was evaluated in single group hybrid implementation‐effectiveness pilot study. Patients were e‐referred from the clinical team to health coaches for three health self‐management coaching calls and received text messages to enhance coaching. Semi‐structured qualitative interviews were conducted with 21 patient participants, 2 referring clinicians, and 2 health coaches to determine intervention acceptability (attitudes, appropriateness, suitability, convenience, and perceived effectiveness) and to identify important elements of the program and potential mechanisms of action to guide future implementation. Results: SHARE‐S was described as impactful and convenient. The nondirective, patient‐centered health coaching and mindfulness exercises were deemed most acceptable; text messages were less acceptable. Stakeholders suggested increased flexibility in format, frequency, timing, and length of participation, and additional tailored educational materials. Patients reported tangible health behavior changes, improved mood, and increased accountability and self‐efficacy. Conclusions: SHARE‐S is overall an acceptable and potentially effective intervention that may enhance survivors' self‐management and well‐being. Alterations to tailored content, timing, and dose should be tested to determine impact on acceptability and outcomes. [ABSTRACT FROM AUTHOR]

Published
2024
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3. Cultural and linguistic adaptation of a telephone-based cognitive-behavioral therapy (CBT) intervention to treat depression and anxiety in Hispanic cancer survivors

Author

Danhauer, Suzanne C., primary, Brenes, Gretchen A., additional, Tooze, Janet A., additional, Abubaker, Tebianne, additional, Thomas, Alexandra, additional, Howard, Dianna S., additional, Puccinelli-Ortega, Nicole, additional, Jimenez, Karolina, additional, and Graves, Kristi D., additional

Published
2023
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5. Pilot study of implementing the Shared Healthcare Actions & Reflections Electronic systems in Survivorship ( SHARE‐S ) program in coordination with clinical care

Author

Sohl, Stephanie J., primary, Sadasivam, Rajani S., additional, Kittel, Carol, additional, Dressler, Emily V., additional, Wentworth, Stacy, additional, Balakrishnan, Kavitha, additional, Weaver, Kathryn E., additional, Dellinger, Rebecca Ann, additional, Puccinelli‐Ortega, Nicole, additional, Cutrona, Sarah L., additional, Foley, Kristie L., additional, and Houston, Thomas, additional

Published
2023
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8. Facilitators and Barriers to Implementing a Digital Informed Decision Making Tool in Primary Care: A Qualitative Study

Author

Puccinelli-Ortega, Nicole, Cromo, Mark, Foley, Kristie L., Dignan, Mark B., Dharod, Ajay, Snavely, Anna C., and Miller, David P.

Subjects
Primary Health Care, Health Information Management, Decision Making, Humans, Mass Screening, Health Informatics, Focus Groups, Qualitative Research, Computer Science Applications
Abstract

Background Informed decision aids provide information in the context of the patient's values and improve informed decision making (IDM). To overcome barriers that interfere with IDM, our team developed an innovative iPad-based application (aka “app”) to help patients make informed decisions about colorectal cancer screening. The app assesses patients' eligibility for screening, educates them about their options, and empowers them to request a test via the interactive decision aid. Objective The aim of the study is to explore how informed decision aids can be implemented successfully in primary care clinics, including the facilitators and barriers to implementation; strategies for minimizing barriers; adequacy of draft training materials; and any additional support or training desired by clinics. Design This work deals with a multicenter qualitative study in rural and urban settings. Participants A total of 48 individuals participated including primary care practice managers, clinicians, nurses, and front desk staff. Approach Focus groups and semi-structured interviews, with data analysis were guided by thematic analysis. Key Results Salient emergent themes were time, workflow, patient age, literacy, and electronic health record (EHR) integration. Saving time was important to most participants. Patient flow was a concern for all clinic staff, and they expressed that any slowdown due to patients using the iPad module or perceived additional work to clinic staff would make staff less motivated to use the program. Participants voiced concern about older patients being unwilling or unable to utilize the iPad and patients with low literacy ability being able to read or comprehend the information. Conclusion Integrating new IDM apps into the current clinic workflow with minimal disruptions would increase the probability of long-term adoption and ultimate sustainability. NIH trial registry number R01CA218416-A1.

Published
2022

9. Engaging stakeholders to inform the adaptation of a personalized electronic care planning tool for cancer follow-up care (Preprint)

Author

Sohl, Stephanie Jean, primary, Duncan, Pamela W., additional, Thakur, Elyse, additional, Puccinelli-Ortega, Nicole, additional, Salsman, John M., additional, Russell, Greg, additional, Pasche, Boris C., additional, Wentworth, Stacy, additional, Miller Jr, David P., additional, Wagner, Lynne I., additional, and Topaloglu, Umit, additional

Published
2022
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10. Feasibility of Systems Support Mapping to guide patient-driven health self-management in colorectal cancer survivors.

Author

Sohl, Stephanie J., Befus, Deanna, Tooze, Janet A., Levine, Beverly, Golden, Shannon L., Puccinelli-Ortega, Nicole, Pasche, Boris C., Weaver, Kathryn E., and Lich, Kristen Hassmiller

Subjects
PILOT projects, RESEARCH, CLINICAL decision support systems, CONFIDENCE intervals, PATIENT autonomy, SELF-management (Psychology), FISHER exact test, COLORECTAL cancer, CANCER patients, QUALITATIVE research, T-test (Statistics), SELF-efficacy, RESEARCH funding, DESCRIPTIVE statistics, CHI-squared test, HEALTH behavior, CONTENT analysis, DATA analysis software
Abstract

To evaluate feasibility of System Support Mapping (MAP), a systems thinking activity that involves creating a diagram of existing self-management activities (e.g. symptom management, health behaviors) to facilitate autonomous engagement in optimal self-management. One-arm pilot study of MAP in colorectal cancer survivors (NCT03520283). Feasibility of recruitment and retention (primary outcome), acceptability, and outcome variability over time. We enrolled 24 of 66 cancer survivors approached (36%) and 20 completed follow-up (83%). Key reasons for declining participation included: not interested (n = 18), did not perceive a need (n = 9), and emotional distress/overwhelmed (n = 7). Most participants reported that MAP was acceptable (e.g. 80% liked MAP quite a bit/very much). Exploratory analyses revealed a −4.68 point reduction in fatigue from before to 2 weeks after MAP exceeding a minimally important difference (d = −0.68). There were also improvements in patient autonomy (d = 0.63), self-efficacy (for managing symptoms: d = 0.56, for managing chronic disease: d = 0.44), psychological stress (d = −0.45), anxiety (d = −0.34), sleep disturbance (d = −0.29) and pain (d = −0.32). Qualitative feedback enhanced interpretation of results. MAP feasibility in colorectal cancer survivors was mixed, predominantly because many patients did not perceive a need for this approach. MAP was acceptable among participants and showed promise for improving health outcomes. [ABSTRACT FROM AUTHOR]

Published
2023
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11. Kidney Disease, Hypertension Treatment, and Cerebral Perfusion and Structure

Author

Kurella Tamura, Manjula, primary, Gaussoin, Sarah, additional, Pajewski, Nicholas M., additional, Zaharchuk, Greg, additional, Freedman, Barry I., additional, Rapp, Stephen R., additional, Auchus, Alexander P., additional, Haley, William E., additional, Oparil, Suzanne, additional, Kendrick, Jessica, additional, Roumie, Christianne L., additional, Beddhu, Srinivasan, additional, Cheung, Alfred K., additional, Williamson, Jeff D., additional, Detre, John A., additional, Dolui, Sudipto, additional, Bryan, R. Nick, additional, Nasrallah, Ilya M., additional, Whelton, Paul, additional, Johnson, Karen C., additional, Snyder, Joni, additional, Bild, Diane, additional, Bonds, Denise, additional, Cook, Nakela, additional, Cutler, Jeffrey, additional, Fine, Lawrence, additional, Kaufmann, Peter, additional, Kimmel, Paul, additional, Launer, Lenore, additional, Moy, Claudia, additional, Riley, William, additional, Ryan, Laurie, additional, Tolunay, Eser, additional, Yang, Song, additional, Reboussin, David, additional, Williamson, Jeff, additional, Ambrosius, Walter T., additional, Applegate, William, additional, Evans, Greg, additional, Foy, Capri, additional, Kitzman, Dalane, additional, Lyles, Mary, additional, Pajewski, Nick, additional, Rapp, Steve, additional, Rushing, Scott, additional, Shah, Neel, additional, Sink, Kaycee M., additional, Vitolins, Mara, additional, Wagenknecht, Lynne, additional, Wilson, Valerie, additional, Perdue, Letitia, additional, Woolard, Nancy, additional, Craven, Tim, additional, Garcia, Katelyn, additional, Lovato, Laura, additional, Newman, Jill, additional, Lovato, James, additional, Lu, Lingyi, additional, McLouth, Chris, additional, Russell, Greg, additional, Amoroso, Bobby, additional, Davis, Patty, additional, Griffin, Jason, additional, Harris, Darrin, additional, King, Mark, additional, Lane, Kathy, additional, Roberson, Wes, additional, Steinberg, Debbie, additional, Ashford, Donna, additional, Babcock, Phyllis, additional, Chamberlain, Dana, additional, Christensen, Vickie, additional, Cloud, Loretta, additional, Collins, Christy, additional, Cook, Delilah, additional, Currie, Katherine, additional, Felton, Debbie, additional, Harpe, Stacy, additional, Howard, Marjorie, additional, Lewis, Michelle, additional, Nance, Pamela, additional, Puccinelli-Ortega, Nicole, additional, Russell, Laurie, additional, Walker, Jennifer, additional, Craven, Brenda, additional, Goode, Candace, additional, Troxler, Margie, additional, Davis, Janet, additional, Hutchens, Sarah, additional, Killeen, Anthony A., additional, Lukkari, Anna M., additional, Ringer, Robert, additional, Dillard, Brandi, additional, Archibeque, Norbert, additional, Warren, Stuart, additional, Sather, Mike, additional, Pontzer, James, additional, Taylor, Zach, additional, Soliman, Elsayed Z., additional, Zhang, Zhu-Ming, additional, Li, Yabing, additional, Campbell, Chuck, additional, Hensley, Susan, additional, Hu, Julie, additional, Keasler, Lisa, additional, Barr, Mary, additional, Taylor, Tonya, additional, Davatzikos, Christos, additional, Nasarallah, Ilya, additional, Desiderio, Lisa, additional, Elliott, Mark, additional, Borthakur, Ari, additional, Battapady, Harsha, additional, Erus, Guray, additional, Smith, Alex, additional, Wang, Ze, additional, Doshi, Jimit, additional, Wright, Jackson T., additional, Rahman, Mahboob, additional, Lerner, Alan J., additional, Still, Carolyn, additional, Wiggers, Alan, additional, Zamanian, Sara, additional, Bee, Alberta, additional, Dancie, Renee, additional, Thomas, George, additional, Schreiber, Martin, additional, Navaneethan, Sankar Dass, additional, Hickner, John, additional, Lioudis, Michael, additional, Lard, Michelle, additional, Marczewski, Susan, additional, Maraschky, Jennifer, additional, Colman, Martha, additional, Aaby, Andrea, additional, Payne, Stacey, additional, Ramos, Melanie, additional, Horner, Carol, additional, Drawz, Paul, additional, Raghavendra, Pratibha P., additional, Ober, Scott, additional, Mourad, Ronda, additional, Pallaki, Muralidhar, additional, Russo, Peter, additional, Raghavendra, Pratibha, additional, Fantauzzo, Pual, additional, Tucker, Lisa, additional, Schwing, Bill, additional, Sedor, John R., additional, Horwitz, Edward J., additional, Schellling, Jeffrey R., additional, O’Toole, John F., additional, Humbert, Lisa, additional, Tutolo, Wendy, additional, White, Suzanne, additional, Gay, Alishea, additional, Clark, Walter, additional, Hughes, Robin, additional, Dobre, Mirela, additional, Still, Carolyn H., additional, Williams, Monique, additional, Bhatt, Udayan, additional, Hebert, Lee, additional, Agarwal, Anil, additional, Murphy, Melissa Brown, additional, Ford, Nicole, additional, Stratton, Cynthia, additional, Baxter, Jody, additional, Lykins, Alicia A., additional, McKinley Neal Leena Hirmath, Alison, additional, Kwame, Osei, additional, Soe, Kyaw, additional, Miser, William F., additional, Sagrilla, Colleen, additional, Johnston, Jan, additional, Anaya, Amber, additional, Mintos, Ashley, additional, Howell, Angel A., additional, Rogers, Kelly, additional, Taylor, Sara, additional, Ebersbacher, Donald, additional, Long, Lucy, additional, Bednarchik, Beth, additional, Schnall, Adrian, additional, Smith, Jonathan, additional, Peysha, Lori, additional, Leach, Lisa, additional, Tribout, Megan, additional, Harwell, Carla, additional, Ellington, Pinkie, additional, Banerji, Mary Ann, additional, Ghody, Pranav, additional, Rambaud, Melissa Vahídeh, additional, Townsend, Raymond, additional, Cohen, Debbie, additional, Huan, Yonghong, additional, Duckworth, Mark, additional, Ford, Virginia, additional, Leshner, Juliet, additional, Davison, Ann, additional, Veen, Sarah Vander, additional, Gadegbeku, Crystal A., additional, Gillespie, Avi, additional, Paranjape, Anuradha, additional, Amoroso, Sandra, additional, Pfeffer, Zoe, additional, Quinn, Sally B., additional, He, Jiang, additional, Chen, Jing, additional, Lustigova, Eva, additional, Malone, Erin, additional, Krousel-Wood, Marie, additional, Deichmann, Richard, additional, Ronney, Patricia, additional, Muery, Susan, additional, Trapani, Donnalee, additional, Rocco, Michael, additional, Goff, David, additional, Rodriguez, Carlos, additional, Coker, Laura, additional, Hawfield, Amret, additional, Yeboah, Joseph, additional, Crago, Lenore, additional, Summerson, John, additional, Hege, Anita, additional, Diamond, Matt, additional, Mulloy, Laura, additional, Hodges, Marcela, additional, Collins, Michelle, additional, Weathers, Charlene, additional, Anderson, Heather, additional, Stone, Emily, additional, Walker, Walida, additional, McWilliams, Andrew, additional, Dulin, Michael, additional, Kuhn, Lindsay, additional, Standridge, Susan, additional, Lowe, Lindsay, additional, Everett, Kelly, additional, Preston, Kelry, additional, Norton, Susan, additional, Gaines, Silena, additional, Rizvi, Ali A., additional, Sides, Andrew W., additional, Herbert, Diamond, additional, Hix, Matthew M., additional, Whitmire, Melanie, additional, Arnold, Brittany, additional, Hutchinson, Philip, additional, Espiritu, Joseph, additional, Feinglos, Mark, additional, Kovalik, Eugene, additional, Gedon-Lipscomb, Georgianne, additional, Evans, Kathryn, additional, Thacker, Connie, additional, Zimmer, Ronna, additional, Furst, Mary, additional, Mason, MaryAnn, additional, Powell, James, additional, Bolin, Paul, additional, Zhang, Junhong, additional, Pinion, Mary, additional, Davis, Gail, additional, Bryant, Winifred, additional, Phelps, Presley, additional, Garris-Sutton, Connie, additional, Atkinson, Beatrice, additional, Contreras, Gabriele, additional, Suarez, Maritza, additional, Schulman, Ivonne, additional, Koggan, Don, additional, Vassallo, Jackie, additional, Peruyera, Gloria, additional, Whittington, Sheri, additional, Bethea, Cassandra, additional, Gilliam, Laura, additional, Pedley, Carolyn, additional, Zurek, Geraldine, additional, Baird, Miriam, additional, Herring, Charles, additional, Smoak, Mary Martha, additional, Williams, Julie, additional, Rogers, Samantha, additional, Gordon, Lindsay, additional, Kennedy, Erin, additional, Belle, Beverly, additional, McCorkle-Doomy, Jessica, additional, Adams, Jonathan, additional, Lopez, Ramon, additional, Janavs, Juris, additional, Rahbari-Oskoui, Frederic, additional, Chapman, Arlene, additional, Dollar, Allen, additional, Williams, Olubunmi, additional, Han, Yoosun, additional, Haley, William, additional, Fitzpatrick, Peter, additional, Blackshear, Joseph, additional, Shapiro, Brian, additional, Harrell, Anna, additional, Palaj, Arta, additional, Henderson, Katelyn, additional, Johnson, Ashley, additional, Gonzalez, Heath, additional, Robinson, Jermaine, additional, Tamariz, Leonardo, additional, Denizard, Jennifer, additional, Barakat, Rody, additional, Krishnamoorthy, Dhurga, additional, Greenway, Frank, additional, Monce, Ron, additional, Church, Timothy, additional, Hendrick, Chelsea, additional, Yoches, Aimee, additional, Sones, Leighanne, additional, Baltazar, Markee, additional, Pemu, Priscilla, additional, Jones, Connie, additional, Akpalu, Derrick, additional, Chelune, Gordon, additional, Childs, Jeffrey, additional, Gren, Lisa, additional, Randall, Anne, additional, Dember, Laura, additional, Soares, Denise, additional, Yee, Jerry, additional, Umanath, Kausik, additional, Ogletree, Naima, additional, Thaxton, Schawana, additional, Campana, Karen, additional, Sheldon, Dayna, additional, MacArthur, Krista, additional, Muhlestein, J. Brent, additional, Allred, Nathan, additional, Clements, Brian, additional, Dhar, Ritesh, additional, Meredith, Kent, additional, Le, Viet, additional, Miner, Edward, additional, Orford, James, additional, Riessen, Erik R., additional, Ballantyne, Becca, additional, Chisum, Ben, additional, Johnson, Kevin, additional, Peeler, Dixie, additional, Chertow, Glenn, additional, Tamura, Manju, additional, Chang, Tara, additional, Erickson, Kevin, additional, Shen, Jenny, additional, Stafford, Randall S., additional, Zaharchuk, Gregory, additional, Del Cid, Margareth, additional, Dentinger, Michelle, additional, Sabino, Jennifer, additional, Sahay, Rukmani, additional, Telminova, Ekaterina, additional, Weiner, Daniel E., additional, Sarnak, Mark, additional, Chan, Lily, additional, Civiletto, Amanda, additional, Heath, Alyson, additional, Kantor, Amy, additional, Jain, Priyanka, additional, Kirkpatrick, Bethany, additional, Well, Andrew, additional, Yuen, Barry, additional, Chonchol, Michel, additional, Farmer, Beverly, additional, Farmer, Heather, additional, Greenwald, Carol, additional, Malaczewski, Mikaela, additional, Lash, James, additional, Porter, Anna, additional, Ricardo, Ana, additional, Rosman, Robert T., additional, Cohan, Janet, additional, Barrera, Nieves Lopez, additional, Meslar, Daniel, additional, Meslar, Patricia, additional, Conroy, Margaret, additional, Unruh, Mark, additional, Hess, Rachel, additional, Jhamb, Manisha, additional, Thomas, Holly, additional, Fazio, Pam, additional, Klixbull, Elle, additional, Komlos-Weimer, Melissa, additional, Mandich, LeeAnne, additional, Vita, Tina, additional, Toto, Robert, additional, Van Buren, Peter, additional, Inrig, Julia, additional, Cruz, Martha, additional, Lightfoot, Tammy, additional, Wang, Nancy, additional, Webster, Lori, additional, Raphael, Kalani, additional, Stults, Barry, additional, Zaman, Tahir, additional, Simmons, Debra, additional, Lavasani, Tooran, additional, Filipowicz, Rebecca, additional, Wei, Guo, additional, Miller, Gracie Mary, additional, Harerra, Jenice, additional, Christensen, Jeff, additional, Giri, Ajay, additional, Chen, Xiaorui, additional, Anderton, Natalie, additional, Jensen, Arianna, additional, Lewis, Julia, additional, Burgner, Anna, additional, Dwyer, Jamie P., additional, Schulman, Gerald, additional, Herrud, Terri, additional, Leavell, Ewanda, additional, McCray, Tiffany, additional, McNeil-Simaan, Edwina, additional, Poudel, Munmun, additional, Reed, Malia, additional, Sika, Mohammed, additional, Woods, Delia, additional, Zirkenbach, Janice L., additional, Raj, Dominic S., additional, Cohen, Scott, additional, Patel, Samir, additional, Velasquez, Manuel, additional, Bastian, Roshni S., additional, Wing, Maria, additional, Roy-Chaudhury, Akshay, additional, Depner, Thomas, additional, Dalyrymple, Lorien, additional, Kaysen, George, additional, Anderson, Susan, additional, Nord, John, additional, Ix, Joachim H., additional, Goldenstein, Leonard, additional, Miracle, Cynthia M., additional, Forbang, Nketi, additional, Mircic, Maja, additional, Thomas, Brenda, additional, Tran, Tiffany, additional, Rastogi, Anjay, additional, Kim, Mihae, additional, Rashid, Mohamad, additional, Lizarraga, Bianca, additional, Hocza, Amy, additional, Sarmosyan, Kristine, additional, Norris, Jason, additional, Sharma, Tushar, additional, Chioy, Amanda, additional, Bernard, Eric, additional, Cabrera, Eleanore, additional, Lopez, Christina, additional, Nunez, Susana, additional, Riad, Joseph, additional, Schweitzer, Suzanne, additional, Sirop, Siran, additional, Thomas, Sarah, additional, Wada, Lauren, additional, Kramer, Holly, additional, Bansal, Vinod, additional, Taylor, Corliss E., additional, Segal, Mark S., additional, Hall, Karen L., additional, Kazory, Amir, additional, Gilbert, Lesa, additional, Owens, Linda, additional, Poulton, Danielle, additional, Whidden, Elaine, additional, Wiggins, Jocelyn, additional, Blaum, Caroline, additional, Nyquist, Linda, additional, Min, Lillian, additional, Gure, Tanya, additional, Lewis, Ruth, additional, Mawby, Jennifer, additional, Robinson, Eileen, additional, Lewis, Cora E., additional, Bradley, Virginia, additional, Calhoun, David, additional, Glasser, Stephen, additional, Jenkins, Kim, additional, Ramsey, Tom, additional, Qureshi, Nauman, additional, Ferguson, Karen, additional, Haider, Sumrah, additional, James, Mandy, additional, Jones, Christy, additional, Renfroe, Kim, additional, Seay, April, additional, Weigart, Carrie, additional, Thornley-Brown, Denyse, additional, Rizik, Dana, additional, Cotton, Bari, additional, Fitz-Gerald, Meredith, additional, Grimes, Tiffany, additional, Johnson, Carolyn, additional, Kennedy, Sara, additional, Mason, Chanel, additional, Rosato-Burson, Lesa, additional, Willingham, Robin, additional, Judd, Eric, additional, Breaux-Shropshire, Tonya, additional, Cook, Felice, additional, Medina, Julia, additional, Ghazi, Lama, additional, Bhatt, Hemal, additional, Lewis, James, additional, Brantley, Roman, additional, Brouilette, John, additional, Glaze, Jeffrey, additional, Hall, Stephanie, additional, Hiott, Nancy, additional, Tharpe, David, additional, Boddy, Spencer, additional, Mack, Catherine, additional, Womack, Catherine, additional, Asao, Keiko, additional, Griffin, Beate, additional, Hendrix, Carol, additional, Johnson, Karen, additional, Jones, Lisa, additional, Towers, Chelsea, additional, Punzi, Henry, additional, Cassidy, Kathy, additional, Schumacher, Kristin, additional, Irizarry, Carmen, additional, Colon, Ilma, additional, Colon-Ortiz, Pedro, additional, Colón-Hernández, Pedro J., additional, Carrasquillo-Navarro, Orlando J., additional, Carrasquillo, Merari, additional, Vazquez, Nivea, additional, Sosa-Padilla, Miguel, additional, Cintron-Pinero, Alex, additional, Ayala, Mayra, additional, Pacheco, Olga, additional, Rivera, Catalina, additional, Sotomayor-Gonzalez, Irma, additional, Claudio, Jamie, additional, Lazaro, Jose, additional, Arce, Migdalia, additional, Heres, Lourdes, additional, Perez, Alba, additional, Tavarez-Valle, Jose, additional, Arocho, Ferlinda, additional, Torres, Mercedes, additional, Vazquez, Melvaliz, additional, Aurigemma, Gerard P., additional, Takis-Smith, Rebecca, additional, Andrieni, Julia, additional, Bodkin, Noelle, additional, Chaudhary, Kiran, additional, Hu, Paula, additional, Kostis, John, additional, Cosgrove, Nora, additional, Bankowski, Denise, additional, Boleyn, Monica, additional, Casazza, Laurie, additional, Giresi, Victoria, additional, Patel, Tosha, additional, Squindo, Erin, additional, Wu, Yan, additional, Henson, Zeb, additional, Wofford, Marion, additional, Lowery, Jessica, additional, Minor, Deborah, additional, Harkins, Kimberley, additional, Auchus, Alexander, additional, Flessner, Michael, additional, Adair, Cathy, additional, Asher, Jordan, additional, Loope, Debbie, additional, Cobb, Rita, additional, Venegas, Reiner, additional, Bigger, Thomas, additional, Bello, Natalie, additional, Homma, Shunichi, additional, Donovan, Daniel, additional, Lopez-Jimenez, Carlos, additional, Tirado, Amilcar, additional, Getaneh, Asqual, additional, Tang, Rocky, additional, Durant, Sabrina, additional, Maurer, Mathew, additional, Teruya, Sergio, additional, Helmke, Stephen, additional, Alvarez, Julissa, additional, Campbell, Ruth, additional, Pisoni, Roberto, additional, Sturdivant, Rachel, additional, Brooks, Deborah, additional, Counts, Caroline, additional, Hunt, Vickie, additional, Spillers, Lori, additional, Brautigam, Donald, additional, Kitchen, Timothy, additional, Gorman, Timothy, additional, Sayers, Jessica, additional, Button, Sarah, additional, Chiarot, June, additional, Fischer, Rosemary, additional, Lyon, Melissa, additional, Resnick, Maria, additional, Hodges, Nicole, additional, Ferreira, Jennifer, additional, Cushman, William, additional, Wall, Barry, additional, Nichols, Linda, additional, Burns, Robert, additional, Martindale-Adams, Jennifer, additional, Berlowitz, Dan, additional, Clark, Elizabeth, additional, Walsh, Sandy, additional, Geraci, Terry, additional, Huff, Carol, additional, Shaw, Linda, additional, Servilla, Karen, additional, Vigil, Darlene, additional, Barrett, Terry, additional, Sweeney, Mary Ellen, additional, Johnson, Rebecca, additional, McConnell, Susan, additional, Salles, Khadijeh Shahid, additional, Watson, Francoise, additional, Schenk, Cheryl, additional, Whittington, Laura, additional, Maher, Maxine, additional, Williams, Jonathan, additional, Swartz, Stephen, additional, Conlin, Paul, additional, Alexis, George, additional, Lamkin, Rebecca, additional, Underwood, Patti, additional, Gomes, Helen, additional, Rosendorff, Clive, additional, Atlas, Stephen, additional, Khan, Saadat, additional, Gonzalez, Waddy, additional, Barcham, Samih, additional, Kwon, Lawrence, additional, Matar, Matar, additional, Adhami, Anwar, additional, Basile, Jan, additional, John, Joseph, additional, Ham, Deborah, additional, Baig, Hadi, additional, Saklayen, Mohammed, additional, Yap, Jason, additional, Neff, Helen, additional, Miller, Carol, additional, Zheng-Phelan, Ling, additional, Gappy, Saib, additional, Rau, Shiva, additional, Raman, Arathi, additional, Berchou, Vicki, additional, Jones, Elizabeth, additional, Olgren, Erin, additional, Marbury, Cynthia, additional, Yudd, Michael, additional, Sastrasinh, Sithiporn, additional, Michaud, Jennine, additional, Fiore, Jessica, additional, Kutza, Marianne, additional, Shorr, Ronald, additional, Mount, Rattana, additional, Dunn, Helen, additional, Stinson, Susan, additional, Hunter, Jessica, additional, Taylor, Addison, additional, Bates, Jeffery, additional, Anderson, Catherine, additional, Kirchner, Kent, additional, Stubbs, Jodi, additional, Hinton, Ardell, additional, Spencer, Anita, additional, Sharma, Santosh, additional, Wiegmann, Thomas, additional, Mehta, Smita, additional, Krause, Michelle, additional, Dishongh, Kate, additional, Childress, Richard, additional, Gyamlani, Geeta, additional, Niakan, Atossa, additional, Thompson, Cathy, additional, Moody, Janelle, additional, Gresham, Carolyn, additional, Whittle, Jeffrey, additional, Barnas, Gary, additional, Wolfgram, Dawn, additional, Cortese, Heidi, additional, Johnson, Jonette, additional, Roumie, Christianne, additional, Hung, Adriana, additional, Wharton, Jennifer, additional, Niesner, Kurt, additional, Katz, Lois, additional, Richardson, Elizabeth, additional, Brock, George, additional, Holland, Joanne, additional, Dixon, Troy, additional, Zias, Athena, additional, Spiller, Christine, additional, Baker, Penelope, additional, Felicetta, James, additional, Rehman, Shakaib, additional, Bingham, Kelli, additional, Watnick, Suzanne, additional, Cohen, David, additional, Weiss, Jessica, additional, Johnston, Tera, additional, Giddings, Stephen, additional, Yamout, Hala, additional, Klein, Andrew, additional, Rowe, Caroline, additional, Vargo, Kristin, additional, Waidmann, Kristi, additional, Papademetriou, Vasilios, additional, Elkhoury, Jean Pierre, additional, Gregory, Barbara, additional, Amodeo, Susan, additional, Bloom, Mary, additional, Goldfarb-Waysman, Dalia, additional, Treger, Richard, additional, Kashefi, Mehran, additional, Huang, Christina, additional, Knibloe, Karen, additional, Ishani, Areef, additional, Slinin, Yelena, additional, Olney, Christine, additional, Rust, Jacqueline, additional, Fanti, Paolo, additional, Dyer, Christopher, additional, Bansal, Shweta, additional, Dunnam, Monica, additional, Hu, Lih-Lan, additional, and Zarate-Abbott, Perla, additional

Published
2022
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15. A conceptual model of fertility concerns among adolescents and young adults with cancer.

Author

Canzona, Mollie R., Victorson, David E., Murphy, Karly, Clayman, Marla L., Patel, Bonnie, Puccinelli‐Ortega, Nicole, McLean, Thomas W., Harry, Onengiya, Little‐Greene, Denisha, Salsman, John M., Puccinelli-Ortega, Nicole, Little-Greene, Denisha, Canzona, Mollie Rose, and Ortega, Nicole Puccinelli

Subjects
TEENAGERS, YOUNG adults, CONCEPTUAL models, CANCER patients, MEDICAL personnel
Abstract

Objective: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development.Methods: Concept elicitation interviews were conducted with a purposive sample of stakeholders: 36 AYAs (10 adolescents, 12 emerging adults, and 14 young adults), 36 AYA oncology health care providers, and 12 content experts in cancer-related infertility. The constant comparative method was used to identify themes and properties that illustrate AYAs' conceptualization and/or experience of FC.Results: Thirteen themes characterized FC among AYAs with cancer, varying by stakeholder group and domain affiliations. Themes were grouped by four domains (e.g., affective, information, coping, and logistical), which organized the conceptual model. Affective experiences were further determined to be an important component within the other three domains. AYAs' fertility and fertility preservation experiences were shaped by communication factors and timing factors including placement along the lifespan/cancer continuum.Conclusions: AYA FC are characterized by uncertainty and confusion that may contribute to future decisional regret or magnify feelings of loss. Results add to previous research by examining individual, relational, and health care factors that fluctuate to inform fertility preservation perceptions and decision-making across the AYA age spectrum. Findings will be used to develop and test new self-report measures of FC among AYAs with cancer and survivors using classic and modern measurement theory approaches. [ABSTRACT FROM AUTHOR]

Published
2021
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17. Stakeholder‐informed conceptual framework for financial burden among adolescents and young adults with cancer.

Author

Danhauer, Suzanne C., Canzona, Mollie, Tucker‐Seeley, Reginald D., Reeve, Bryce B., Nightingale, Chandylen L., Howard, Dianna S., Puccinelli‐Ortega, Nicole, Little‐Greene, Denisha, and Salsman, John M.

Subjects
YOUNG adults, CANCER patients, TEENAGERS, MEDICAL personnel, PSYCHO-oncology, CANCER survivors
Abstract

Background: Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. Methods: In‐depth concept elicitation interviews were conducted with a purposive‐selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. Results: Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long‐lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. Conclusions: Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient‐reported measure of financial burden among AYA cancer survivors. [ABSTRACT FROM AUTHOR]

Published
2022
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18. A qualitative assessment of body image in adolescents and young adults (AYAs) with cancer.

Author

Moore, Justin B., Canzona, Mollie R., Puccinelli‐Ortega, Nicole, Little‐Greene, Denisha, Duckworth, Katie E., Fingeret, Michelle C., Ip, Edward H., Sanford, Stacy D., and Salsman, John M.

Subjects
BODY image, YOUNG adults, PATIENTS' attitudes, MEDICAL personnel, TEENAGERS
Abstract

Context: Among adolescents and young adults (AYAs), cancer and its treatment can disturb body image in distinct ways compared to younger or older individuals. Objective: Since AYA body image is not well understood, this study was designed to develop a conceptual framework for body image in AYAs with cancer. Methods: Concept elicitation interviews were conducted with 36 AYA patients [10 adolescents (15–17 years), 12 emerging adults (18–25 years), 14 young adults (26–39 years)] and health care providers (n = 36). The constant comparative method was used to analyze for themes and properties, with themes considered saturated if they were present and salient across participant sets. Results: Twenty themes emerged from participant data. Three themes illustrate a shared understanding of patients' experience of body image: (1) physical changes produce shifts in identity and experience of self; (2) precancer body image shapes how the AYA experiences cancer‐related physical changes, and (3) changes to the body are upsetting. Nine themes were unique to patients while eight themes were unique to providers. Patient body image experiences were found to evolve over time, largely affected by concerns about how others view them. Providers appeared attuned to AYA patient body image but recognized that it is not systematically addressed with patients. Conclusion: More striking than differences between patient groups is the consistency of themes that emerged. The conceptual framework of body image developed from these data offers an important step toward addressing body image concerns for AYA patients. [ABSTRACT FROM AUTHOR]

Published
2021
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