scholarly journals Sharing research results with Latina breast cancer survivors who participated in a community-engaged behavioral RCT study: a descriptive cross-sectional survey study

Trials ◽  
2022 ◽  
Vol 23 (1) ◽  
Author(s):  
Jackie Bonilla ◽  
Alia Alhomsi ◽  
Jasmine Santoyo-Olsson ◽  
Anita L. Stewart ◽  
Carmen Ortiz ◽  
...  

Abstract Background An often heard and justifiable concern of ethnic minorities is related to researchers’ lack of attention to sharing the results of a study with participants after the study has concluded. Few studies have examined the effects of returning overall study results on participants’ attitudes, especially among populations underrepresented in research. Among Latina research participants, providing a summary of study results could enhance participation in research. We assess Latina breast cancer survivors’ reactions to receiving study results and their attitudes about participating in future studies. Methods For this cross-sectional survey study, all women who had participated in two behavioral randomized controlled trials (RCTs) were mailed a letter summarizing the study results (using written and graphic formats) and a questionnaire assessing problems and understanding the results, importance of sharing results, willingness to participate in future studies, and format preferences for receiving the results. A postage-paid envelope for returning the completed questionnaire was included. Logistic regression examined the associations of age, education, and rural/urban residence on format preferences and willingness to participate. The survey sample consisted of 304 low-income, predominantly Spanish-speaking Latina breast cancer survivors (151 from urban and 153 from rural communities) who had participated in two RCTs testing a stress management program designed for Latina breast cancer survivors. Results Ninety-two women returned the questionnaires (30.3%). Most of the women (91.1%) indicated that they had no trouble understanding the results of the study, and 97% agreed that it is very/extremely important for researchers to share the study result with the participants. The majority (60.2%) reported that receiving the results increased their willingness to participate in future studies. About half (51.7%) did not have a format preference, 37.4% preferred written summaries, and 10.9% preferred graphs. Conclusions This study is an important first step to understanding the impact of returning study results among a population that is underrepresented in research. Returning the results of studies and understanding the impact of doing so is consistent with maintaining community involvement in all phases of research. The findings suggest that sharing aggregate research results in simple language yields few problems in participants’ understanding of the results and is viewed as important by participants. Trial registration ClinicalTrials.govNCT02931552 Date registered: October 13, 2016 and NCT01383174 Date registered: June 28, 2011.

2020 ◽  
Vol 28 (12) ◽  
pp. 5833-5838 ◽  
Author(s):  
Jacqueline Zayas ◽  
Kathryn J. Ruddy ◽  
Janet E. Olson ◽  
Fergus J. Couch ◽  
Brent A. Bauer ◽  
...  

2021 ◽  
Author(s):  
Jacqueline H. Becker ◽  
Charlotte Ezratty ◽  
Nusrat Jahan ◽  
Mita Goel ◽  
Yael Tobi Harris ◽  
...  

2015 ◽  
Vol 33 (10) ◽  
pp. 1104-1111 ◽  
Author(s):  
Melinda L. Irwin ◽  
Brenda Cartmel ◽  
Cary P. Gross ◽  
Elizabeth Ercolano ◽  
Fangyong Li ◽  
...  

Purpose Arthralgia occurs in up to 50% of breast cancer survivors treated with aromatase inhibitors (AIs) and is the most common reason for poor AI adherence. We conducted, in 121 breast cancer survivors receiving an AI and reporting arthralgia, a yearlong randomized trial of the impact of exercise versus usual care on arthralgia severity. Patients and Methods Eligibility criteria included receiving an AI for at least 6 months, reporting ≥ 3 of 10 for worst joint pain on the Brief Pain Inventory (BPI), and reporting < 90 minutes per week of aerobic exercise and no strength training. Participants were randomly assigned to exercise (150 minutes per week of aerobic exercise and supervised strength training twice per week) or usual care. The BPI, Western Ontario and McMaster Universities Osteoarthritis (WOMAC) index, and Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire were completed at baseline and at 3, 6, 9, and 12 months. Intervention effects were evaluated using mixed-model repeated measures analysis, with change at 12 months as the primary end point. Results Over 12 months, women randomly assigned to exercise (n = 61) attended 70% (± standard deviation [SD], 28%) of resistance training sessions and increased their exercise by 159 (± SD, 136) minutes per week. Worst joint pain scores decreased by 1.6 points (29%) at 12 months among women randomly assigned to exercise versus a 0.2-point increase (3%) among those receiving usual care (n = 60; P < .001). Pain severity and interference, as well as DASH and WOMAC pain scores, also decreased significantly at 12 months in women randomly assigned to exercise, compared with increases for those receiving usual care (all P < .001). Conclusion Exercise led to improvement in AI-induced arthralgia in previously inactive breast cancer survivors.


2015 ◽  
Vol 112 (4) ◽  
pp. 636-643 ◽  
Author(s):  
E J Bantema-Joppe ◽  
G H de Bock ◽  
M Woltman-van Iersel ◽  
D M Busz ◽  
A V Ranchor ◽  
...  

2021 ◽  
pp. 1-6
Author(s):  
Danbee Kang ◽  
Nayeon Kim ◽  
Gayeon Han ◽  
Sooyeon Kim ◽  
Hoyoung Kim ◽  
...  

Abstract Objective This study aims to identify factors associated with divorce following breast cancer diagnosis and measures the impact of divorce on the quality of life (QoL) of patients. Methods We used cross-sectional survey data collected at breast cancer outpatient clinics in South Korea from November 2018 to April 2019. Adult breast cancer survivors who completed active treatment without any cancer recurrence at the time of the survey (N = 4,366) were included. The participants were classified into two groups: “maintaining marriage” and “being divorced,” between at the survey and at the cancer diagnosis. We performed logistic regression and linear regression to identify the factors associated with divorce after cancer diagnosis and to compare the QoL of divorced and nondivorced survivors. Results Approximately 11.1/1,000 of married breast cancer survivors experienced divorce after cancer diagnosis. Younger age, lower education, and being employed at diagnosis were associated with divorce. Being divorced survivors had significantly lower QoL (Coefficient [Coef] = −7.50; 95% CI = −13.63, −1.36), social functioning (Coef = −9.47; 95% CI = −16.36, −2.57), and body image (Coef = −8.34; 95% CI = −6.29, −0.39) than survivors who remained married. They also experienced more symptoms including pain, insomnia, financial difficulties, and distress due to hair loss. Conclusion Identifying risk factors of divorce will ultimately help ascertain the resources necessary for early intervention.


2011 ◽  
Vol 5 ◽  
pp. BCBCR.S6957 ◽  
Author(s):  
Michelle Ayala-Feliciano ◽  
Jaime J. Pons-Valerio ◽  
José Pons-Madera ◽  
Summer F. Acevedo

Background In the US there are over 2.5 million breast cancer survivors (BCSs), most of whom have required some type of intensive treatment. How individuals cope with the treatment process may relate to why neurocognitive problems arise. Method We explored the impact of treatment for breast cancer (BC) on performance of the Memory Island task, both on working memory and on the general index of cognitive performance in relation to coping strategies of BCSs compared to age-matched controls. Results The evidence obtained suggests a reduced performance in visuospatial memory in BCSs. Those who used emotional coping strategies displayed reduced performance in visuospatial learning and immediate memory. Those women who used problem-focused coping strategies performed better in those tasks measuring psychomotor speed, general intelligence, and delayed visuospatial memory. Conclusions It is concluded that further investigation of the relationship between coping strategies and performance on visuospatial tasks may provide useful information on residual levels of neurocognitive deficits and psychosocial adaptation in BCSs.


EXPLORE ◽  
2012 ◽  
Vol 8 (1) ◽  
pp. 40-47 ◽  
Author(s):  
Mary Lou Galantino ◽  
Laurie Greene ◽  
Benjamin Archetto ◽  
Melissa Baumgartner ◽  
Paula Hassall ◽  
...  

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