Publications by authors named "Sarah E Connor"

29 Publications

  • Page 1 of 1

Improving Shared Decision Making in Latino Men With Prostate Cancer: A Thematic Analysis.

MDM Policy Pract 2021 Jan-Jun;6(1):23814683211014180. Epub 2021 May 27.

Department of Marketing, Shidler College of Business, University of Hawai'i, Honolulu, Hawai'i.

Multiple studies have shown that digitally mediated decision aids help prepare patients for medical decision making with their providers. However, few studies have investigated whether decision-support preferences differ between non-English-speaking and English-speaking Latino men with limited literacy. To identify and compare health information seeking patterns, preferences for information presentation, and interest in digital decision aids in a sample of Southern Californian underserved Latino men with newly diagnosed prostate cancer at a county hospital. We conducted semistructured, in-depth telephone interviews with 12 Spanish-speaking and 8 English-speaking Latino men using a purposive sampling technique. Following transcription of taped interviews, Spanish interviews were translated. Using a coding protocol developed by the team, two bilingual members jointly analyzed the transcripts for emerging themes. Coder agreement exceeded 80%. Differences were resolved through discussion. Thematic differences between groups with different preferred languages emerged. Most respondents engaged in online health information seeking using cellphones, perceived a paternalistic patient-provider relationship, and expressed willingness to use hypothetical digital decision aids if recommended by their provider. English speakers reported higher digital technology proficiency for health-related searches. They also more frequently indicated family involvement in digital search related to their condition and preferred self-guided, web-based decision aids. In comparison, Spanish speakers reported lower digital technology proficiency and preferred family-involved, coach-guided, paper and visual decision aids. English speakers reported substantially higher levels of formal education. Preferences regarding the use of digital technology to inform prostate cancer treatment decision making among underserved Latino men varied depending on preferred primary language. Effective preparation of underserved Latino men for shared decision making requires consideration of alternative approaches depending on level of education attainment and preferred primary language.
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http://dx.doi.org/10.1177/23814683211014180DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8165846PMC
May 2021

Establishing a global quality of care benchmark report.

Health Informatics J 2021 Apr-Jun;27(2):14604582211015704

Cancer Council Victoria, Australia.

Background: The Movember funded TrueNTH Global Registry (TNGR) aims to improve care by collecting and analysing a consistent dataset to identify variation in disease management, benchmark care delivery in accordance with best practice guidelines and provide this information to those in a position to enact change. We discuss considerations of designing and implementing a quality of care report for TNGR.

Methods: Eleven working group sessions were held prior to and as reports were being built with representation from clinicians, data managers and investigators contributing to TNGR. The aim of the meetings was to understand current data display approaches, share literature review findings and ideas for innovative approaches. Preferred displays were evaluated with two surveys (survey 1: 5 clinicians and 5 non-clinicians, 83% response rate; survey 2: 17 clinicians and 18 non-clinicians, 93% response rate).

Results: Consensus on dashboard design and three data-display preferences were achieved. The dashboard comprised two performance summary charts; one summarising site's relative quality indicator (QI) performance and another to summarise data quality. Binary outcome QIs were presented as funnel plots. Patient-reported outcome measures of function score and the extent to which men were bothered by their symptoms were presented in bubble plots. Time series graphs were seen as providing important information to supplement funnel and bubble plots. R Markdown was selected as the software program principally because of its excellent analytic and graph display capacity, open source licensing model and the large global community sharing program code enhancements.

Conclusions: International collaboration in creating and maintaining clinical quality registries has allowed benchmarking of process and outcome measures on a large scale. A registry report system was developed with stakeholder engagement to produce dynamic reports that provide user-specific feedback to 132 participating sites across 13 countries.
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http://dx.doi.org/10.1177/14604582211015704DOI Listing
June 2021

How Can We Help Alleviate the Financial Concerns of Non-Directed (Altruistic) Living Kidney Donors?

Prog Transplant 2021 03 9;31(1):19-26. Epub 2020 Dec 9.

Department of Urology, 12222David Geffen School of Medicine at UCLA, Los Angeles, CA, USA.

Introduction: The recent increase in non-directed donors (NDDs) in the United States (U.S.) may help reduce the overwhelming number of patients on the waitlist. However, non-directed donation may be limiting its full potential. Out-of-pocket donation costs upward of $8,000 may be a barrier to potential donors with altruistic tendencies, but inadequate financial support. This study aimed to describe the financial concerns of 31 U.S. NDDs.

Methods: We conducted qualitative interviews and administered quantitative demographic surveys between April 2013 and April 2015. Interview transcripts were analyzed using grounded theory techniques to describe and expand on themes relevant to the NDD experience.

Findings: We identified 4 sub-themes related to the theme of financial concerns: (1) direct costs related to transportation, lodging, and parking, (2) indirect costs of lost wages encountered from taking time off work to recover from surgery, (3) sources of financial support, and (4) suggestions for alleviating donor financial burden. Two thirds of participants (20) expressed concerns about direct and indirect donation costs. 11 NDDs reported the negative impact of direct costs,15 NDDs had concerns about indirect costs; only 7 donors received supplemental financial support from state mandates and transplant programs.

Discussion: Understanding the financial concerns of NDDs may guide improvements in the NDD donation experience that could support individuals who are interested in donating but lack the financial stability to donate. Removing financial disincentives may help increase nondirected donation rates, increase the living donor pool, and the number of kidneys available for transplantation.
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http://dx.doi.org/10.1177/1526924820978589DOI Listing
March 2021

Modifiable health behaviors among low-income, uninsured men with prostate cancer.

Urol Oncol 2020 09 2;38(9):735.e1-735.e8. Epub 2020 Jul 2.

Department of Urology, David Geffen School of Medicine at University of California, Los Angeles (UCLA), Los Angeles, CA; Department of Health Policy & Management, UCLA Fielding School of Public Health; and UCLA School of Nursing, Los Angeles, CA. Electronic address:

Background: As life expectancy of men with prostate cancer (CaP)improves, the risks of chronic diseases and comorbid conditions become more relevant. Improving modifiable health behaviors now serves as a focus of guidelines to reduce all-cause morbidity and mortality from chronic disease among CaP survivors. Few studies have reported on these health behaviors in low-income, uninsured men with CaP METHODS: In addition to baseline demographic data, we collected four health behaviors in low-income men with CaP via telephone survey: physical activity, dietary intake of fruits and vegetables, weight management, and alcohol consumption. These behaviors were assessed for adherence to the American Cancer Society Prostate Cancer Survivorship Care Guidelines for health promotion.

Results: Of 236 participants, most self-identified as racial/ethnic minority (61% Hispanic, 16% Black). Most men demonstrated low (21%) or moderate (66%) adherence to guidelines, almost all of whom had poor adherence with recommendations for physical activity and fruit and vegetable intake. Multivariate analysis showed that non-white men were more likely to demonstrate low or moderate adherence.

Conclusions: Most men in this cohort of low-income, uninsured CaP survivors did not engage the healthy behaviors promulgated by the American Cancer Society. Future interventions in this population should focus on encouraging and facilitating healthier lifestyle choices in physical activity, diet, and weight management.
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http://dx.doi.org/10.1016/j.urolonc.2020.06.005DOI Listing
September 2020

Development of Technologic Solutions to Address Complex Local Requirements of an International Prostate Cancer Clinical Quality Registry.

JCO Clin Cancer Inform 2019 03;3:1-11

Monash University, Melbourne, Victoria, Australia.

Purpose: To detail the process for importing a defined data set into a centralized global registry via a secure file transfer platform and to understand the barriers to the establishment of a centralized global registry.

Results: A bespoke solution was developed to allow transmission of data from international local data centers to a centralized repository. Data elements included in the import template were drawn from existing International Consortium for Health Outcome Measurement variables and refined to ensure accurate benchmarking as well as feasibility in data completeness. The data set was organized in accordance with the prostate cancer care trajectory. Key considerations in developing the data transfer platform included import file format, process of input validation, and technical provisions. Given the diversity in the legislation and ethical requirements with respect to consent, data handling, and cross-border data transfer across geographic locations, we encouraged each local data center to consult with its legal advisors and research ethics committee early on in the process.

Discussion: A global collaboration, although highly valuable, posed many challenges because of inconsistent methods of data collection. User acceptance of a system is paramount to the success of establishing a metaregistry. Local information technology support and regular regression testing ensures quality and maintenance of the database.

Conclusion: We developed a Web-based system to facilitate the collection and secure storage of common data, which is scalable and secure. It is anticipated that through systematic recording of data, global standards of clinical practice and outcomes of care will see vast improvements.
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http://dx.doi.org/10.1200/CCI.18.00114DOI Listing
March 2019

Spirituality and religiosity of non-directed (altruistic) living kidney donors.

J Clin Nurs 2018 Apr 5;27(7-8):1662-1672. Epub 2018 Mar 5.

Department of Urology, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA.

Aims And Objectives: To describe the spirituality and religiosity of 30 non-directed (altruistic) living kidney donors in the USA and explore how they may have affected their motivations to donate and donation process experiences.

Background: The rise in non-directed donors and their ability to initiate kidney chains offer a novel approach to help alleviate the overextended kidney transplant wait list in the USA. However, little is known about the non-directed donors' motivations, characteristics and experiences.

Design: We conducted a qualitative-dominant study and used a grounded theory approach to analyse data.

Methods: Thirty participants completed in-depth interviews between April 2013-April 2015. Three analysts independently read and coded interview transcripts. Grounded theory techniques were used to develop descriptive categories and identify topics related to the non-directed donors donation experience.

Results: Sixteen of the 30 non-directed donorss discussed the topic of spirituality and religiosity when describing their donation experiences, regardless of whether they were actively practising a religion at the time of donation. Specifically, three themes were identified within spirituality and religiosity: motivation to donate, support in the process, and justification of their donation decisions postdonation.

Conclusions: Findings from this study are the first to describe how spirituality and religiosity influenced the experiences of U.S. non-directed donorss and may help improve non-directed donors educational resources for future spiritual or religious non-directed donors, and the overall non-directed donors donation experience in efforts to increase the living donor pool.

Relevance To Clinical Practice: Spirituality and religiosity are often overlooked yet potentially influential factors in Western medicine, as demonstrated through the experiences of Jehovah's Witnesses and their religious restrictions while undergoing surgery and the beliefs of Christian Scientists against taking medications and receiving medical procedures. Understanding needs of non-directed donors specifically with spirituality and religiosity can better position kidney transplant centres and teams to improve predonation screening of non-directed donor candidates and provide support services during the donation process.
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http://dx.doi.org/10.1111/jocn.14223DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6686899PMC
April 2018

The Role of Media in Non-Directed (Altruistic) Living Kidney Donation.

Health Commun 2019 02 30;34(2):259-267. Epub 2017 Nov 30.

a Department of Urology , David Geffen School of Medicine at UCLA.

This study seeks to characterize how non-directed living kidney donors use media and informational resources over the course of their kidney donation journey. We conducted semi-structured interviews with non-directed donors (NDDs) who initiated kidney transplant chains. Interview transcripts were reviewed and references to media or informational resources were classified by type and pattern of use. More than half (57%) of NDDs reported that an identifiable media or informational resource resulted in their initial interest in donation. Two-thirds (67%) of NDDs cited the influence of stories and personal narratives on their decision to donate. After transplant, media and informational resources were used to promote organ donation, connect with other donors or recipients, and reflect on donation. From the study's findings, we conclude that media and informational resources play an important role in the process of donation for NDDs, including inspiring interest in donation through personal narratives. Media sources provide emotionally and intellectually compelling discussions that motivate potential donors. The results of this study may facilitate the development of more targeted outreach to potential donors through use of personal narratives in articles and television programming about donation.
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http://dx.doi.org/10.1080/10410236.2017.1405480DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6109610PMC
February 2019

Cohort profile: the TrueNTH Global Registry - an international registry to monitor and improve localised prostate cancer health outcomes.

BMJ Open 2017 Nov 28;7(11):e017006. Epub 2017 Nov 28.

Department of Urology, David Geffen School of Medicine, University of California, Los Angeles, USA.

Purpose: Globally, prostate cancer treatment and outcomes for men vary according to where they live, their race and the care they receive. The TrueNTH Global Registry project was established as an international registry monitoring care provided to men with localised prostate cancer (CaP).

Participants: Sites with existing CaP databases in Movember fundraising countries were invited to participate in the international registry. In total, 25 Local Data Centres (LDCs) representing 113 participating sites across 13 countries have nominated to contribute to the project. It will collect a dataset based on the International Consortium for Health Outcome Measures (ICHOM) standardised dataset for localised CaP.

Findings To Date: A governance strategy has been developed to oversee registry operation, including transmission of reversibly anonymised data. LDCs are represented on the Project Steering Committee, reporting to an Executive Committee. A Project Coordination Centre and Data Coordination Centre (DCC) have been established. A project was undertaken to compare existing datasets, understand capacity at project commencement (baseline) to collect the ICHOM dataset and assist in determining the final data dictionary. 21/25 LDCs provided data dictionaries for review. Some ICHOM data fields were well collected (diagnosis, treatment start dates) and others poorly collected (complications, comorbidities). 17/94 (18%) ICHOM data fields were relegated to non-mandatory fields due to poor capture by most existing registries. Participating sites will transmit data through a web interface biannually to the DCC.

Future Plans: Recruitment to the TrueNTH Global Registry-PCOR project will commence in late 2017 with sites progressively contributing reversibly anonymised data following ethical review in local regions. Researchers will have capacity to source deidentified data after the establishment phase. Quality indicators are to be established through a modified Delphi approach in later 2017, and it is anticipated that reports on performance against quality indicators will be provided to LDCs.
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http://dx.doi.org/10.1136/bmjopen-2017-017006DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5719323PMC
November 2017

Low self-efficacy is associated with decreased emergency department use in underserved men with prostate cancer.

Urol Oncol 2016 Jan 26;34(1):3.e15-21. Epub 2015 Sep 26.

Department of Urology, David Geffen School of Medicine at the University of California, Los Angeles, CA; Department of Health Policy and Management, Fielding School of Public Health, University of California, Los Angeles, CA.

Background: Self-efficacy has been strongly associated with health behavior and health maintenance. We examined the relationship between patient-provider self-efficacy and emergency department usage in low-income, underinsured, or uninsured patients with prostate cancer.

Methods: We prospectively analyzed quality of life, behavior, and self-efficacy data from men enrolled in a state-funded program providing free prostate cancer care. We summarized patient characteristics stratified by self-efficacy scores (high, mid, and low) and by emergency department visit (any vs. none). We conducted a multivariate repeated measures regression analysis with negative binomial distribution to calculate predicted counts of emergency department visits over time across the self-efficacy strata.

Results: Our cohort included 469 men with a maximum follow-up time of 84 months. Of these men, 70 had visited the emergency department during their enrollment for a total of 118 unique visits. The regression analysis demonstrated a decreasing number of emergency department visits over time for the low (P = 0.0633) and mid (P = 0.0450) self-efficacy groups but not for the high self-efficacy group (P = 0.1155). Pain (22.9%), urinary retention (18.6%), and fever (5.9%) were the most common reasons for emergency department visits.

Conclusions: Patients with low and mid self-efficacy had a decreasing number of emergency department usage over time. Those with high self-efficacy did not follow these trends. Interventions to improve communication between patients and primary treatment teams could prove beneficial in avoiding excess emergency department use.
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http://dx.doi.org/10.1016/j.urolonc.2015.08.017DOI Listing
January 2016

Outcomes of shipped live donor kidney transplants compared with traditional living donor kidney transplants.

Transpl Int 2014 Nov 22;27(11):1175-82. Epub 2014 Sep 22.

Department of Urology, David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CA, USA.

The disparity between kidney transplant candidates and donors necessitates innovations to increase organ availability. Transporting kidneys allows for living donors and recipients to undergo surgery with a familiar transplant team, city, friends, and family. The effect of shipping kidneys and prolonged cold ischemia time (CIT) with living donor transplantation outcomes is not clearly known. This retrospective matched (age, gender, race, and year of procedure) cohort study compared allograft outcomes for shipped live donor kidney transplants and nonshipped living donor kidney transplants. Fifty-seven shipped live donor kidneys were transplanted from 31 institutions in 26 cities. The mean shipping distance was 1634 miles (range 123-2811) with mean CIT of 12.1 ± 2.8 h. The incidence of delayed graft function in the shipped cohort was 1.8% (1/57) compared to 0% (0/57) in the nonshipped cohort. The 1-year allograft survival was 98% in both cohorts. There were no significant differences between the mean serum creatinine values or the rates of serum creatinine decline in the immediate postoperative period even after adjusted for gender and differences in recipient and donor BMI. Despite prolonged CITs, outcomes for shipped live donor kidney transplants were similar when compared to matched nonshipped living donor kidney transplants.
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http://dx.doi.org/10.1111/tri.12405DOI Listing
November 2014

Decisional conflict in economically disadvantaged men with newly diagnosed prostate cancer: baseline results from a shared decision-making trial.

Cancer 2014 Sep 9;120(17):2721-7. Epub 2014 May 9.

Department of Urology, David Geffen School of Medicine at University of California Los Angeles (UCLA), Los Angeles, California.

Background: Decisional conflict is a source of anxiety and stress for men diagnosed with prostate cancer given uncertainty surrounding myriad treatment options. Few data exist to help clinicians identify which patients are at risk for decisional conflict. The purpose of this study was to examine factors associated with decisional conflict in economically disadvantaged men diagnosed with prostate cancer before any treatment choices were made.

Methods: A total of 70 men were surveyed at a Veterans Administration clinic with newly diagnosed localized prostate cancer enrolled in a randomized trial testing a novel shared decision-making tool. Baseline demographic, clinical, and functional data were collected. Independent variables included age, race, education, comorbidity, relationship status, urinary/sexual dysfunction, and prostate cancer knowledge. Tested outcomes were Decisional Conflict Scale, Uncertainty Subscale, and Perceived Effectiveness Subscale. Multiple linear regression modeling was used to identify factors associated with decisional conflict.

Results: Mean age was 63 years, 49% were African American, and 70% reported an income less than $30,000. Poor prostate cancer knowledge was associated with increased decisional conflict and higher uncertainty (P < .001 and P = 0.001, respectively). Poor knowledge was also associated with lower perceived effectiveness (P = 0.003) whereas being in a relationship was associated with higher decisional conflict (P = 0.03).

Conclusions: Decreased patient knowledge about prostate cancer is associated with increased decisional conflict and lower perceived effective decision-making. Interventions to increase comprehension of prostate cancer and its treatments may reduce decisional conflict. Further work is needed to better characterize this relationship and identify effective targeted interventions.
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http://dx.doi.org/10.1002/cncr.28755DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4552329PMC
September 2014

Purposeful normalization when caring for husbands recovering from prostate cancer.

Qual Health Res 2014 Mar 3;24(3):306-16. Epub 2014 Mar 3.

1The Ohio State University, Columbus, Ohio, USA.

Despite a growing awareness that prostate cancer is a "couple's disease," the coping strategies, subjective distress, and emotional needs of partners are not adequately addressed. To better understand wives' experiences and processes they enact, we recruited 28 low-income Latinas caring for husbands recovering from prostatectomies to participate in interviews at three time points. Their narratives destabilize a common focus on physical side effects and an implicit bias toward men's reactions. We critically examine an overarching process of normalization, with underlying themes working both toward and against normality. We identified dissonance between detailed accounts of major lifestyle changes and professed normalization. We detail the women's purposeful methods to counteract negative impacts on their lives while seeking support externally. A better understanding of women's strategies and coping is critical to design interventions and education to both capitalize on partners' role in recovery while also addressing hidden causes of increased subjective distress.
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http://dx.doi.org/10.1177/1049732314523842DOI Listing
March 2014

Development of quality indicators for women with urinary incontinence.

Neurourol Urodyn 2013 Nov 16;32(8):1058-63. Epub 2013 Sep 16.

Department of Surgery, Division of Urology, Cedars-Sinai Medical Center, Los Angeles, California; Department of Urology, David Geffen School of Medicine, University of California, Los Angeles, California.

Aims: To develop a means to measure the quality of care provided to women treated for urinary incontinence (UI) through the development of quality-of-care indicators (QIs).

Methods: We performed an extensive literature review to develop a set of potential quality indicators for the management of UI. QIs were modeled after those previously described in the Assessing the Care of Vulnerable Elders (ACOVE) project. Nine experts ranked the indicators on a nine-point scale for both validity and feasibility. We analyzed preliminary rankings of each indicator using the RAND Appropriateness Method. A forum was then held in which each indicator was thoroughly discussed by the panelists as a group, after which the indicators were rated a second time individually using the same nine-point scale.

Results: QIs were developed that addressed screening, diagnosis, work-up, and both non-surgical and surgical management. Areas of controversy included whether routine screening for incontinence should be performed, whether urodynamics should be performed before non-surgical management is initiated, and whether cystoscopy should be part of the pre-operative work-up of uncomplicated stress incontinence. Following the expert panel discussion, 27 of 40 potential indicators were determined to be valid for UI with a median score of at least seven on a nine-point scale.

Conclusions: We identified 27 quality indicators for the care of women with UI. Once these QIs are pilot-tested for feasibility, they will be applied on a larger scale to measure the quality of care provided to women with UI in the United States.
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http://dx.doi.org/10.1002/nau.22353DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3857939PMC
November 2013

Quality-of-care indicators for pelvic organ prolapse: development of an infrastructure for quality assessment.

Int Urogynecol J 2013 Dec 4;24(12):2039-47. Epub 2013 May 4.

Department of Surgery, Division of Urology, Cedars-Sinai Medical Center, Los Angeles, CA, USA,

Introduction And Hypothesis: A paucity of data exists addressing the quality of care provided to women with pelvic organ prolapse (POP). We sought to develop a means of measuring this quality through the development of quality-of-care indicators (QIs).

Methods: QIs were modeled after those previously described in the Assessing the Care of Vulnerable Elders (ACOVE) project. The indicators were then presented to a panel of nine experts. Using the RAND Appropriateness Method, we analyzed each indicator's preliminary rankings. A forum was then held in which each indicator was thoroughly discussed by the panelists as a group, after which panelists individually re-rated the indicators. QIs with median scores of at least 7 were considered valid.

Results: QIs were developed that addressed screening, diagnosis, work-up, and both nonsurgical and surgical management. Areas of controversy included whether screening should be performed to identify prolapse, whether pessary users should undergo a vaginal examination by a health professional every 6 months versus annually, and whether a colpocleisis should be offered to older women planning to undergo surgery for POP. Fourteen out of 21 potential indicators were rated as valid for pelvic organ prolapse (median score ≥7).

Conclusion: We developed and rated 14 potential quality indicators for the care of women with POP. Once these QIs are tested for feasibility they can be used on a larger scale to measure and compare the care provided to women with prolapse in different clinical settings.
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http://dx.doi.org/10.1007/s00192-013-2105-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3890317PMC
December 2013

Barriers to prostate cancer care: affordable care is not enough.

Qual Health Res 2013 Mar 30;23(3):375-84. Epub 2012 Nov 30.

University of California-Los Angeles, Los Angeles, California, USA.

Low-income, uninsured Latino men face a myriad of barriers when accessing health care to detect, diagnose, treat, and manage their prostate cancer. In this study, we utilized grounded theory techniques to analyze transcripts of semistructured interviews with 60 Latino men enrolled in a state-funded public assistance program. We developed a descriptive framework to understand barriers to health care access among these men. Findings demonstrate that societal, systemic, and individual barriers function independently and together to bar access to prostate cancer care for Latino men. Participant perceptions illustrate the individual, interpersonal, and macro-level structures that impede access, stressing the need for expanded medical coverage coupled with measures to improve quality care. The health care system needs a multifaceted approach, including alleviation of financial burdens for underserved prostate cancer patients, empowerment of patients with navigational skills, access to culturally competent providers, and consistent monitoring of access to quality health care.
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http://dx.doi.org/10.1177/1049732312467852DOI Listing
March 2013

Purposeful interaction: ways Latino men communicate about prostate cancer.

Oncol Nurs Forum 2012 Nov;39(6):603-8

School of Nursing, University of California, Los Angeles, CA, USA.

Purpose/objectives: To develop a descriptive framework of the communication processes used by Latinos with prostate cancer to communicate about their diagnosis.

Research Approach: A constructivist grounded theory approach was used to analyze and build a descriptive framework from semistructured interviews.

Setting: A university-affiliated urban hospital in southern California.

Participants: 30 Latinos treated for prostate cancer, who had at least one first-degree male relative (FDMR), and who lived near the medical center.

Methodologic Approach: Semistructured interviews with bilingual Latinos were conducted in participants' homes in the language they preferred. Individual and collaborative analyses of translated transcripts were guided by constructivist grounded theory.

Findings: Analysis uncovered an overarching process of purposeful interacting. Components of the process included occasionally overlapping spheres of communication, which were connected to purposes and content. Balanced in and influenced by the spheres were cross-cutting processes of respectful silence and selective disclosure.

Conclusions: Men communicated different content about their prostate cancer to people representing different reference groups. Respectful silence and selective disclosure could be viewed as men's enactment of social interaction-using and choosing words based on the symbolic meaning the men perceived would have their intended meaning for the people in each of the spheres.

Interpretation: Culturally sensitive educational interventions should be targeted at Latinos with prostate cancer to understand risk and encourage disclosure to FDMRs.
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http://dx.doi.org/10.1188/12.ONF.603-608DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3686632PMC
November 2012

Prostate cancer survivorship: lessons from caring for the uninsured.

Urol Oncol 2012 Jan-Feb;30(1):102-8. Epub 2011 Nov 27.

Department of Urology, Health Services Research Group, David Geffen School of Medicine at UCLA, Los Angeles, CA 90024, USA.

Unlabelled: Since 2001, UCLA has operated

Impact: Improving Access, Counseling, and Treatment for Californians with Prostate Cancer (CaP). Funded by the California Department of Public Health, with a cumulative budget of over $80 million, the program provides comprehensive care for low-income, uninsured Californian men with biopsy-proven CaP. Health services research conducted with program enrollees, through the UCLA Men's Health Study, yields an opportunity to perform qualitative and quantitative assessments of patient-reported outcomes in these men, all members of historically underserved, primarily minority populations. This review summarizes data from several studies in which validated instruments were administered longitudinally in 727 participants, prospectively measuring health-related quality of life (HRQOL), self-efficacy in interactions with physician interactions, social and emotional health, symptom distress, satisfaction with care, and other patient-reported outcomes.
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http://dx.doi.org/10.1016/j.urolonc.2011.09.001DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3259185PMC
May 2012

Access to health care and quality of life for underserved men with prostate cancer.

Semin Oncol Nurs 2011 Nov;27(4):267-77

UCLA School of Nursing, Jonsson Comprehensive Cancer Center, Los Angeles, CA, USA.

Objectives: To explore links between access to care and quality of life for underserved men with prostate cancer through a literature review.

Data Sources: Articles published from 2000 to present based on a PubMed search using the key words access, quality of life, health care access, underserved, low-income, health literacy, and prostate cancer.

Conclusion: There is not one reason that adequately explains factors affecting access, health-related quality of life (HRQOL), or the potential relationships between the two for underserved men with prostate cancer. Socioeconomic factors contribute to accessibility and HRQOL, but not consistently, suggesting that there is still much work to be done in identifying factors and relationships that connect access to care and HRQOL for underserved men with prostate cancer.

Implications For Nursing Practice: Particularly important is to develop intervention strategies to address the disparities in access to care and prostate cancer treatment outcomes (including HRQOL) for this vulnerable population. Based on findings from studies, nurses need to be actively involved in the development and implementation of programs that address multiple barriers including socioeconomic status, minority status, health literacy, insurance, and language.
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http://dx.doi.org/10.1016/j.soncn.2011.07.005DOI Listing
November 2011

The role of self-efficacy in quality of life for disadvantaged men with prostate cancer.

J Urol 2011 Nov 25;186(5):1855-61. Epub 2011 Sep 25.

Department of Urology, David Geffen School of Medicine, University of California-Los Angeles, Los Angeles, California 90095-1772, USA.

Purpose: Self-efficacy is associated with increased participation in treatment decision making and improved health related quality of life. We examined the influence of perceived efficacy in patient-physician interactions on health related quality of life among low income, uninsured men with prostate cancer during a 2-year period.

Materials And Methods: We analyzed data derived on participants enrolled in a state funded program providing free prostate cancer treatment and care to indigent men. We used validated instruments to measure patient self-efficacy (confidence in interacting with physicians), and the general and prostate specific health related quality of life outcomes of urinary, sexual and bowel bother, symptom distress, psychological well-being and vitality. We performed repeated measures analysis with general linear mixed modeling to estimate the association of sociodemographic and clinical covariates with health related quality of life.

Results: Our cohort included a total of 472 observations in 99 men. Self-efficacy had a measurable effect on subjective measurements of general and disease specific health related quality of life. Men with the lowest self-efficacy had inferior mean health related quality of life scores across all outcomes. Low self-efficacy was significantly associated with worse bowel bother and general symptom distress during the 2-year study period. Similar health related quality of life outcomes trajectories were observed across self-efficacy categories.

Conclusions: Of disadvantaged men with clinically localized prostate cancer those with the lowest self-efficacy in physician interactions fared worst across all measured domains of health related quality of life. Interventions to improve patient-physician communication in this population may provide physicians with a supplemental method by which to address health perceptions, mitigate symptom experience and improve health outcomes.
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http://dx.doi.org/10.1016/j.juro.2011.06.059DOI Listing
November 2011

The impact of social networks and partnership status on treatment choice in men with localized prostate cancer.

BJU Int 2012 Apr 2;109(7):1006-12. Epub 2011 Sep 2.

Department of Urology, David Geffen School of Medicine, UCLA, Los Angeles, CA 90024, USA.

Objectives: To determine whether martial status and social support impact treatment choice. The decision to pursue radical prostatectomy for prostate cancer is often influenced by factors outside the realm of tumour risk, such as a man's support system at home.

Patients And Methods: We performed a retrospective cohort study of 418 low-income men who were diagnosed with non-metastatic prostate cancer and underwent definitive treatment with either radical prostatectomy or radiotherapy. We performed univariate and multivariate mixed-effects logistic regression analysis, with the dependent variable being treatment type. Confidence intervals (CIs) for the predicted probabilities and relative risks were derived using bias-corrected bootstrapping with 1000 repetitions.

Results: Men with two or more members in their support system were more likely to be older, Hispanic, have less than a high school education, earn more than US $1500 monthly, have high-risk disease and be in a significant relationship. In multivariate analysis, partnered men with fewer than two social support members (relative risk, RR, 1.23; 95% CI, 1.02-1.63) were more likely to undergo surgery, whereas men who were morbidly obese (RR, 0.46; 95% CI, 0.09-0.88), high school graduates (RR, 0.80; 95% CI, 0.64-0.99) or had high-risk disease (RR, 0.58; 95% CI, 0.44-0.85) were less likely to undergo surgery than their respective referent groups. Partnered men with two or more social support members were no more likely to undergo surgery than unpartnered men who lacked any social support.

Conclusions: In the present study cohort, married men with fewer than two members in their social network were more likely to have undergone surgery. Although marital status is often used as a proxy for social support, we find that the quality of support and partner may impact treatment type more than the extent of the social matrix.
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http://dx.doi.org/10.1111/j.1464-410X.2011.10515.xDOI Listing
April 2012

Alliance of support for low-income Latino men with prostate cancer: God, doctor, and self.

J Relig Health 2012 Sep;51(3):752-62

School of Nursing, University of California, Los Angeles (UCLA), 2-256 Factor Bldg, BOX 956918, Los Angeles, CA 90095-6918, USA.

Utilizing qualitative methods, this study describes the perceptions of and reliance on spirituality among indigent Latino men with prostate cancer. Sixty men were interviewed in Spanish. Transcripts were transcribed verbatim, translated, and analyzed using grounded theory techniques. Common across all men was a process involving the formation of an alliance of support that included God, doctors, and self. From this alliance, men drew strength to manage their disease, maintained hope for the future, and found new existential meaning. By recognizing the potential value of this alliance, health care professionals may tap into a beneficial empowering resource for some Latino men.
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http://dx.doi.org/10.1007/s10943-010-9369-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3444699PMC
September 2012

Faith among low-income, African American/black men treated for prostate cancer.

Cancer Nurs 2010 Nov-Dec;33(6):470-8

UCLA School of Nursing, David Geffen School of Medicine at UCLA, University of California-Los Angeles, CA 90095, USA.

Background: Understanding how low-income, uninsured African American/black men use faith to cope with prostate cancer provides a foundation for the design of culturally appropriate interventions to assist underserved men cope with the disease and its treatment. Previous studies have shown spirituality to be a factor related to health and quality of life, but the process by which faith, as a promoter of action, supports coping merits exploration.

Objective: Our purpose was to describe the use of faith by low-income, uninsured African American/black men in coping with prostate cancer and its treatment and adverse effects.

Methods: We analyzed data from a qualitative study that used in-depth individual interviews involving 18 African American men ranging in ages from 53 to 81 years. Our analysis used grounded theory techniques.

Results: Faith was used by African American men to overcome fear and shock engendered by their initial perceptions of cancer. Faith was placed in God, health care providers, self, and family. Men came to see their prostate cancer experience a new beginning that was achieved through purposeful acceptance or resignation.

Conclusions: Faith was a motivator of and source for action. Faith empowered men to be active participants in their treatment and incorporate treatment outcomes into their lives meaningfully.

Implication: By understanding faith as a source of empowerment for active participation in care, oncology nurses can use men's faith to facilitate reframing of cancer perceptions and to acknowledge the role of men's higher being as part of the team. Studies are needed to determine if this model is relevant across various beliefs and cultures.
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http://dx.doi.org/10.1097/NCC.0b013e3181e1f7ffDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3923421PMC
February 2011

Prostate cancer treatment for economically disadvantaged men: a comparison of county hospitals and private providers.

Cancer 2010 Mar;116(5):1378-84

Moores Comprehensive Cancer Center, University of California, La Jolla, CA, USA.

Background: The authors compared the types of treatments prostate cancer patients received from county hospitals and private providers as part of a statewide public assistance program.

Methods: This was a cohort study of 559 men enrolled in a state-funded program for low-income patients known as Improving Access, Counseling, and Treatment for Californians With Prostate Cancer (IMPACT). Multinomial regression was used to compare types of treatments patients received from different providers.

Results: Between 2001 and 2006, 315 (56%) participants received treatment from county hospitals and 244 (44%) from private providers. There were no significant between-group differences with respect to age (P = .22), enrollment year (P = .49), Charlson comorbidity index (P = .47), Gleason sum (P = .33), clinical T stage (P = .36), prostate-specific antigen (P = .39), or D'Amico risk criteria (P = .45). Participants treated by private providers were more likely than those treated in county hospitals to be white (35% vs 10%, P < .01) and less likely to undergo surgery (29% vs 54%, P < .01). Multinomial regression analyses showed that participants treated by private providers were nearly 2(1/2) times more likely than those treated by public providers to receive radiotherapy (odds ratio [OR], 2.36; 95% confidence interval [CI], 1.37-4.07) and >4(1/2) times more likely to receive primary androgen deprivation (OR, 4.71; 95% CI, 2.15-10.36) than surgery.

Conclusions: In this economically disadvantaged cohort, prostate cancer treatments differed significantly between county hospitals and private providers. These data reveal substantial variations in treatment patterns between different types of healthcare institutions that-given the implications for health policy and quality of care-merit further scrutiny.
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http://dx.doi.org/10.1002/cncr.24856DOI Listing
March 2010

Hospice and emergency room use by disadvantaged men dying of prostate cancer.

J Urol 2009 May 14;181(5):2084-9. Epub 2009 Mar 14.

Department of Urology, University of California-Los Angeles, Los Angeles, California 90095-1738, USA.

Purpose: Hospice care has been found to improve symptom management, quality of death and quality of life at the end of life. We describe hospice use by a cohort of low income, uninsured men with prostate cancer enrolled in a public assistance program. We ascertained whether hospice enrollment was associated with a decrease in the number of prostate cancer related emergency room visits made before death.

Materials And Methods: We studied all 57 low income, uninsured men in a public assistance program who had died since its inception in 2001. The association between sociodemographic and clinical data, and hospice enrollment data were evaluated.

Results: The overall rate of hospice use was 28% (16 of 57 patients). The mean +/- SD duration of hospice enrollment before death was 44 +/- 43 days (median 34, range 2 to 143). Two patients (12%) were enrolled fewer than 7 days and none were enrolled more than 180 days. Prostate cancer related emergency room visits, adjuvant chemotherapy treatment, evidence of metastasis at initial presentation and death from prostate cancer were significantly associated with hospice use (p <0.05). We noted a trend toward fewer mean emergency room visits made by men enrolled in hospice care than by those not enrolled (0.7 +/- 1.3 vs 1.1 +/- 0.9, p = 0.15).

Conclusions: Hospice use and the duration of enrollment by low income, uninsured men dying of prostate cancer was comparable to previously reported hospice use by insured individuals. Hospice enrollment was associated with fewer prostate cancer related emergency room visits.
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http://dx.doi.org/10.1016/j.juro.2009.01.030DOI Listing
May 2009

Prostate cancer severity among low income, uninsured men.

J Urol 2009 Feb 18;181(2):579-83; discussion 583-4. Epub 2008 Dec 18.

Department of Urology, University of California, Los Angeles, California, USA.

Purpose: The proportion of American men with organ confined, low risk prostate cancer has increased significantly during the last 2 decades. Whether this trend also applies to men at the extremes of socioeconomic disadvantage remains unknown. Therefore, we evaluated trends in prostate cancer severity in an ethnically diverse cohort of low income, uninsured men served by a state funded public health program in California.

Materials And Methods: We performed a retrospective cohort study of 570 disadvantaged men enrolled in the California program from 2001 through 2006. Using routinely collected clinical variables we defined 2 measures of cancer severity as 1) the proportion of enrollees with metastases at diagnosis and 2) the proportions of men with nonmetastatic tumors whose cancers had low, intermediate or high risk features at diagnosis. We performed bivariate analyses to assess time trends in cancer severity.

Results: Prostate specific antigen levels at diagnosis exceeded 10 ng/ml for 51% of enrollees, 50% had a Gleason score 7 or greater and 43% had clinical T stage T2 or greater. Of disadvantaged men 19% had metastatic cancer at diagnosis and this proportion remained stable over time (p = 0.66). Among men with nonmetastatic cancers 24% had tumors with low risk features and the proportion of low risk cancers did not increase over time (p = 0.34).

Conclusions: Unlike the broader United States population the proportion of disadvantaged men with organ confined, low risk prostate cancer has not been increasing. Thus, while much attention focuses on potential overdiagnosis and overtreatment of men with screen detected prostate cancer, our findings suggest that for low income, uninsured men, underdetection and undertreatment remain significant concerns.
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http://dx.doi.org/10.1016/j.juro.2008.10.010DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2683346PMC
February 2009

Translation barriers in conducting qualitative research with Spanish speakers.

Qual Health Res 2008 Dec;18(12):1729-37

University of California-Los Angeles, Los Angeles, California, USA.

Cross-cultural qualitative research is rare and challenging because of difficulties of collecting reliable and valid information when conducting research in a language other than the researcher's primary language. Although standards of rigor exist for the data collection, analysis, interpretation, and reporting of qualitative data, no such standards exist for translation of translinguistic qualitative research. Therefore, a new methodology modeled after Brislin's translation principles was utilized with 60 Latino participants experiencing side effects as a result of prostate cancer treatment. Interviews were conducted in Spanish, transcribed verbatim, and then translated by research staff. By adapting Brislin's process, a new methodology was developed that more accurately conveys the true meaning of the participant's experience, is more appropriate and meaningful, and opens doors to researchers interested in conducting research in a language other than their own, while at the same time ensuring the reliability and validity of study data.
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http://dx.doi.org/10.1177/1049732308325857DOI Listing
December 2008

Prostate cancer knowledge among low income minority men.

J Urol 2007 May;177(5):1851-5

Department of Urology, David Geffen School of Medicine, University of California-Los Angeles, Los Angeles, California 90095, USA.

Purpose: We identified sociodemographic characteristics that predict poor disease understanding in low income, uninsured men with prostate cancer.

Materials And Methods: A total of 399 low income, uninsured men with prostate cancer participating in the Men's Health Survey done by researchers at University of California-Los Angeles Jonsson Comprehensive Cancer Center completed questionnaires assessing their knowledge of prostate cancer. Logistic regression was used to identify sociodemographic factors, eg age, education level, language preference, ethnicity and relationship status, associated with poor prostate cancer knowledge.

Results: Most subjects were Latino (54% or 213 of 399), spoke English (53% or 213 of 399) and had a high school education or less (86% or 344 of 399). In the multivariate model increasing age (p<0.014) and less than a high school education (p<0.012) were associated with lower knowledge of disease, while Latino ethnicity and relationship status were not.

Conclusions: Among low income men with prostate cancer increasing age and less formal education were associated with lower knowledge of disease. Further study is needed to determine the roles of language preference and ethnicity in the understanding of the disease in patients with prostate cancer.
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http://dx.doi.org/10.1016/j.juro.2007.01.062DOI Listing
May 2007

Outcomes in men denied access to a California public assistance program for prostate cancer.

Public Health Rep 2007 Mar-Apr;122(2):217-23

Department of Urology, David Geffen School of Medicine and School of Public Health, Los Angeles, CA, USA.

Objectives: To improve access to prostate cancer treatment for low income uninsured men, California initiated a program called

Impact: Improving Access, Counseling and Treatment for Californians with Prostate Cancer. The program administered free treatment, case management, counseling, and educational materials to all eligible men until budget cuts led to a state-mandated suspension of enrollment and the establishment of a temporary waitlist in February 2005. To assess the effect of suspension of enrollment on patient outcomes, the authors compared health-related quality of life (HRQOL) in waitlisted and enrolled men.

Methods: Eighty-three men in each group were matched on disease stage, age, and race. HRQOL was captured with the UCLA Prostate Cancer Index short form (PCI-SF), the Medical Outcomes Study Short Form-12 (SF-12), and McCorkle and Young's Symptoms and Degrees of Distress in Patients with Cancer Scale (SDS). Self-efficacy was measured with the Perceived Efficacy in Patient-Physician Interactions (PEPPI) Questionnaire.

Results: At intake, waitlisted men demonstrated significantly more symptom-related distress (2.9; p=0.04) and less perceived self-efficacy (2.5; p=0.005) compared to enrollees. Waitlisted men were significantly less likely to have access to a doctor or nurse case manager, treatment medications, nutrition information, or counseling services (p<0.0001).

Conclusions: Men denied enrollment into the IMPACT program exhibited significantly worse symptom distress and self-efficacy compared to enrolled men at initial assessment. The multivariate model suggests that HRQOL in the waitlisted men may be related to their lack of access to medical services. This data illustrates the importance of ongoing public assistance for low income men with prostate cancer.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1820425PMC
http://dx.doi.org/10.1177/003335490712200211DOI Listing
April 2007

Health-related quality-of-life in low-income, uninsured men with prostate cancer.

J Health Care Poor Underserved 2005 May;16(2):375-90

David Geffen School of Medicine, University of California-Los Angeles, Los Angeles, CA, USA.

The objective was to describe health-related quality-of-life (HRQOL) in low-income men with prostate cancer. Subjects were drawn from a statewide public assistance prostate cancer program. Telephone and mail surveys included the RAND 12-item Health Survey and UCLA Prostate Cancer Index Short Form and were compared with normative age-matched men without cancer from the general population reported on in the literature. Of 286 eligible men, 233 (81%) agreed to participate and completed the necessary items. The sample consisted of 51% Hispanics, 23% non-Hispanic whites, and 17% African Americans. The low-income men had worse scores in every domain of prostate-specific and general HRQOL than had the age-matched general population controls. The degree of disparity indicated substantial clinical differences in almost every domain of physical and emotional functioning between the sample group and the control group. Linear regression modeling determined that among the low-income men, Hispanic race, and income level were predictive of worse physical functioning, whereas only comorbidities predicted mental health. Low-income patients with prostate cancer appear to have quality-of-life profiles that are meaningfully worse than age-matched men from the general population without cancer reported on in the literature.
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http://dx.doi.org/10.1353/hpu.2005.0037DOI Listing
May 2005
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