Implementing patient navigation programs: Considerations and lessons learned from the Alliance to Advance Patient-Centered Cancer Care.

BACKGROUND: Six multidisciplinary cancer centers were selected and funded by the Merck Foundation (2017-2021) to collaborate in the Alliance to Advance Patient-Centered Cancer Care ("Alliance"), an initiative to improve patient access, minimize health disparities, and enhance the quality of patient-centered cancer care. These sites share their insights on implementation and expansion of their patient navigation efforts. METHODS: Patient navigation represents an evidence-based health care intervention designed to enhance patient-centered care and care coordination. Investigators at 6 National Cancer Institute-designated cancer centers outline their approaches to reducing health care disparities and synthesize their efforts to ensure sustainability and successful transferability in the management of patients with cancer and their families in real-world health care settings. RESULTS: Insights are outlined within the context of patient navigation program effectiveness and supported by examples from Alliance cancer center sites: 1) understand the patient populations, particularly underserved and high-risk patients; 2) capitalize on the existing infrastructure and institutional commitment to support and sustain patient navigation; and 3) build capacity by mobilizing community support outside of the cancer center. CONCLUSIONS: This process-level article reflects the importance of collaboration and the usefulness of partnering with other cancer centers to share interdisciplinary insights while undergoing intervention development, implementation, and expansion. These collective insights may be useful to staff at other cancer centers that look to implement, enhance, or evaluate the effectiveness of their patient navigation interventions.

Perceived Institutional Barriers Among Clinical and Research Professionals: Minority Participation in Oncology Clinical Trials.

PURPOSE: In general, participation rates in cancer clinical trials are very low. However, participation rates are especially low among the socially disadvantaged and racial and ethnic minority groups. These groups have been historically under-represented in cancer clinical trials. Although many patient-related barriers have been studied, institutional factors that are essential for building clinical research infrastructure around the clinical trial enterprise in academic medical centers have been underexplored. MATERIALS AND METHODS: We assessed perspectives of cancer center professional stakeholders on the institutional factors that can potentially influence racial and ethnic minority recruitment for cancer clinical trials. Ninety-one qualitative interviews were conducted at five US cancer centers among four stakeholder groups: cancer center leaders, principal investigators, referring clinicians, and research staff. Qualitative analyses examined response data focused on institutional factors related to minority recruitment for cancer clinical trials. RESULTS: Four prominent themes emerged regarding institutional barriers among clinical and research professionals. (1) There are no existing programs currently being used to recruit or retain minorities to clinical trials. (2) Institutional efforts are needed to increase trial participation and are not specific to potential minority participants. (3) Access to cancer clinical trials and navigation within an Academic Medical Center need to be simplified to better facilitate recruitment of minority patients. (4) Community outreach by cancer centers will increase clinical research awareness in the community. CONCLUSION: Our research highlights the need to address institutional barriers to improve the success of minority recruitment. To increase participation among minority populations, medical centers must address mutable institutional barriers such as setting specific minority recruitment goals for cancer clinical trials, ensuring that cancer clinical trials are accessible, especially to minority patients, and supporting sustained community outreach programs to increase clinical research awareness.

"Reclaiming Control" Patient Acceptance and Adherence to HIV Post-Exposure Prophylaxis Following Sexual Assault.

Sexual assault is an irrefutable trauma; an insult to the autonomy of the person forced into sexual acts. Sexual assault sequelae range from physical injury and acute traumatic stress, to pregnancy and sexually transmitted infections, including human immunodeficiency virus (HIV). HIV post-exposure prophylaxis (HIV PEP) following sexual assault may decrease the likelihood of HIV transmission. Many patients seeking healthcare post-sexual assault either do not initiate HIV PEP or do not complete the 28-day medication regimen. In this qualitative interpretive description, we interviewed sexual assault patients (N=11) about HIV PEP discussions/reactions, attitudes and understanding related to HIV and PEP, and barriers and facilitators of HIV PEP acceptance and adherence. Participants described a process of losing and reclaiming control throughout post-assault care and follow-up; and how this affected HIV PEP-related decision-making. Most HIV PEP decisions were described as a process of reclaiming control over one outcome while simultaneously losing control of another.

Bias and stereotyping among research and clinical professionals: Perspectives on minority recruitment for oncology clinical trials.

BACKGROUND: In recent years, extensive attention has been paid to the possibility that bias among health care professionals contributes to health disparities. In its 2003 report, the Institute of Medicine concluded that bias against racial minorities may affect communication or care offered. However, to the authors' knowledge, the role of bias within the context of recruitment of racial and ethnic minorities to cancer clinical trials has not been explored to date. Therefore, the authors assessed the experiences of clinical and research personnel related to factors influencing the recruitment of racial and ethnic minorities for cancer clinical trials. METHODS: A total of 91 qualitative interviews were conducted at 5 US cancer centers among 4 stakeholder groups: 1) cancer center leaders; 2) principal investigators; 3) referring clinicians; and 4) research staff. Data analysis was conducted using a content analysis approach to generate themes from the transcribed interviews. RESULTS: Five prominent themes emerged: 1) recruitment interactions with potential minority participants were perceived to be challenging; 2) potential minority participants were not perceived to be ideal study candidates; 3) a combination of clinic-level barriers and negative perceptions of minority study participants led to providers withholding clinical trial opportunities from potential minority participants; 4) when clinical trial recruitment practices were tailored to minority patients, addressing research misconceptions to build trust was a common strategy; 5) for some respondents, race was perceived as irrelevant when screening and recruiting potential minority participants for clinical trials. CONCLUSIONS: Not only did some respondents view racial and ethnic minorities as less promising participants, some respondents reported withholding trial opportunities from minorities based on these perceptions. Some providers endorsed using tailored recruitment strategies whereas others eschewed race as a factor in trial recruitment. The presence of bias and stereotyping among clinical and research professionals recruiting for cancer clinical trials should be considered when designing interventions to increase minority enrollment.

Racial/ethnic differences in correlates of psychological distress among five Asian-American subgroups and non-Hispanic Whites.

Objective: Despite their vastly different historical backgrounds, unique languages and variable pre- and post-immigration experiences, Asian-Americans are considered to share stressors surrounding immigration, but there is a gap in describing manifestations of possible mental distress. Thus, the purpose of this study was to explore and compare differences in factors associated with psychological distress among Asian subgroups including Chinese, Filipino, Vietnamese, Korean, Japanese, and non-Hispanic Whites. Design: Using a cross-sectional study design, California Health Interview Survey (CHIS) 2011/2012 data were analyzed. The sample consisted of 29,142 participants: 25,645 non-Hispanic Whites, 3497 non-Hispanic Asian-Americans, 1156 Chinese, 471 Filipinos, 864 Vietnamese, 704 Koreans, and 302 Japanese. Sociodemographic characteristics included gender, age group, marital status, education, poverty level, working status, health insurance, level of acculturation, social cohesion, neighborhood safety, and civic engagement. Physical health status included disability and chronic illness. Psychological distress was evaluated using the Kessler 6 (K6) scale. Results: Results showed that psychological distress levels ranged between 1.96 and 4.52 (p < .05) out of 24 and associated factors were significantly different among the five Asian subgroups and non-Hispanic Whites. Conclusions: The current study highlights the differences in characteristics of psychological distress among Asian subgroups. It underscores the significance of understanding individualized cultural and historical background in each Asian subgroup and subsequently developing and applying appropriate interventions for those groups. In addition, different influencing factors should be applied to assess and prioritize the needs of Asian subgroups to improve psychological distress. The study also warrants further investigation and careful description of each Asian subgroups.

The decision partner in healthcare decision-making: A concept analysis.

BACKGROUND: The decision partner concept emerged to describe someone who contributes to healthcare decision-making with a patient. There is a need for greater precision and consensus surrounding its conceptual definition and use in broader populations. OBJECTIVE: To define and describe the decision partner concept within the context of healthcare decision-making. DESIGN: A concept analysis. DATA SOURCES: We searched the following databases for articles published between 1990-2017: PsychINFO, PubMed, Embase, and CINAHL. We included qualitative, quantitative, or mixed methods studies that used the term decision partner in the context of healthcare decision-making. METHODS: We applied the Walker and Avant method to identify the antecedents, attributes, related concepts, consequences, and empirical referents of the concept, with major themes identified. RESULTS: From the 112 articles included in this concept analysis, 6 defining attributes of decision partner were identified: (1) has a relationship with the patient, (2) demonstrates a willingness to participate in decision-making, (3) articulates a clear understanding of both the patient's health condition and the decisions that must be made, (4) demonstrates decision-making self-efficacy; (5) exemplifies an emotional capacity to participate in decision-making, and (6) willing to fulfill several supportive roles including patient advocate and the "hub of information". CONCLUSIONS: A unifying definition and discussion of the decision partner concept has been developed. Our findings: (1) offer insights into refining the concept across various diseases and healthcare encounters, (2) contribute to developing theoretical models and empirical research to refine antecedents, attributes, consequences, (3) serve as a foundation to develop instruments to measure the concept and (4) highlight the need to design interventions that include and support decision partners in healthcare decision-making.

Training Needs of Clinical and Research Professionals to Optimize Minority Recruitment and Retention in Cancer Clinical Trials.

The study of disparities in minority recruitment to cancer clinical trials has focused primarily on inquiries among minority patient populations. However, clinical trial recruitment is complex and requires a broader appreciation of the multiple factors that influence minority participation. One area that has received little attention is minority recruitment training for professionals who assume various roles in the clinical trial recruitment process. Therefore, we assessed the perspectives of cancer center clinical and research personnel on their training and education needs toward minority recruitment for cancer clinical trials. Ninety-one qualitative interviews were conducted at five U.S. cancer centers among four stakeholder groups: cancer center leaders, principal investigators, referring clinicians, and research staff. Interviews were recorded and transcribed. Qualitative analyses focused on response data related to training for minority recruitment for cancer clinical trials. Four prominent themes were identified: (1) Research personnel are not currently being trained to focus on recruitment and retention of minority populations; (2) Training for minority recruitment and retention provides for a specific focus on factors influencing minority research participation; (3) Training on cultural awareness may help to bridge cultural gaps between potential minority participants and research professionals; (4) Views differ regarding the importance of research personnel training designed to focus on recruitment of minority populations. There is a lack of systematic training for minority recruitment. Many stakeholders acknowledged the benefits of minority recruitment training and welcomed training that focuses on increasing cultural awareness to increase the participation of minorities in cancer clinical trials.

Racial and Ethnic Differences in Mental Health among Asian Americans and Non-Hispanic Whites: Based on California Health Interview Survey.

While Asians are becoming the largest ethnic group in the United States, studies have focused on Asians as a single population. The purpose of this study was to explore the racial and ethnic mental health differences between non-Hispanic Whites and Asians, with an emphasis on understudied subgroups, from the California Health Interview Survey 2011/2012. In this dataset Asians had significantly lower adjusted odds ratios for both mental distress and serious mental illness. However, when Asians were divided into subgroups and compared to Whites, Vietnamese and Japanese subgroups were significantly lower than Whites for mental distress while Koreans were significantly higher. Vietnamese and Chinese were found to have significantly less serious mental illness than Whites in the subgroup analyses. Our results underscore the importance of recognizing that Asian subgroups should not be overlooked, and all Asians should not automatically be treated as a homogenous group.

The Patient-Centered Care and Receipt of Preventive Services Among Older Adults With Chronic Diseases: A Nationwide Cross-sectional Study.

This article investigates the associations between the patient-centered care (PCC) and receipt of preventive services among older adults with chronic diseases. Data were derived from the nationally representative Medical Expenditure Panel Survey. The full-year consolidated data files from 2009 to 2013 were pooled to yield a final analytic sample (N = 16 654). Study outcomes included the receipt of 7 types of preventive screenings and 2 types of health education services. Patients' PCC groups were categorized as PCC, partial PCC, and non-PCC, based on 9 questions classified under the 3 distinctive attributes of PCC-whole-person care, patient engagement, and enhanced access to care. Prevalence rates for each outcome variable were calculated. We estimated odds ratios from multiple logistic regressions, comparing the likelihood of outcome variables across 3 groups of patients. Adjusting for covariates, the PCC group was more likely than the non-PCC group to receive 8 types of preventive services. The partial PCC group had a greater likelihood than the non-PCC group of receiving 7 types of preventive services. Our study reveals significant associations between PCC and receipt of preventive services. PCC has demonstrated the potential to improve preventive care for older adults with chronic diseases.

A Qualitative Study of Motivations for Minority Recruitment in Cancer Clinical Trials Across Five NCI-Designated Cancer Centers.

BACKGROUND: Minority enrollment in cancer clinical trials is traditionally low. In light of this fact, numerous studies have investigated barriers to recruitment and retention within minority populations. However, very little research has investigated the importance of clinicians' and researchers' motivations for minority recruitment in cancer clinical trials. Therefore, we sought to examine motivations for minority recruitment across four professional stakeholder groups (principal investigators, clinicians, research staff, and Cancer Center leaders) at five National Cancer Institute (NCI)-designated Comprehensive Cancer Centers. METHODS: This study is based on the data from 91 qualitative interviews conducted across the five NCI-designated Comprehensive Cancer Centers to investigate stakeholders' motivations for minority recruitment in cancer clinical trials. RESULTS: Emergent themes include (a) minority recruitment increases generalizability of cancer clinical trials, (b) minority recruitment is motivated by social justice, (c) some institutions promote minority recruitment through the use of supplemental financial support, (d) federal funding requirements for minority inclusion in clinical research motivate investigators to focus on minority recruitment, and (e) some stakeholders favor a more race-neutral approach to participant recruitment rather than an emphasis on targeted minority recruitment. CONCLUSION: The perspectives of clinical and research stakeholders potentially inform the assessment of existing strategies and the development of new strategies to increase motivation for minority recruitment in cancer clinical trials.

A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients.

BACKGROUND: Clinical trials are critical to advancing cancer treatment. Minority populations are underrepresented among trial participants, and there is limited understanding of their decision-making process and key determinants of decision outcomes regarding trial participation. METHODS: To understand research decision-making among clinical trial-eligible African-American cancer patients at Johns Hopkins, we conducted seven focus groups (n=32) with trial-offered patients ≥ 18 years diagnosed with lung, breast, prostate, or colorectal cancer ≤ 5 years. Three "acceptor" and four "decliner" focus groups were conducted. Questions addressed: attitudes towards clinical trials, reasons for accepting or declining participation, and recommendations to improve minority recruitment and enrollment. Data were transcribed and analyzed using traditional approaches to content and thematic analysis in NVivo 9.0. Data coding resulted in themes that supported model construction. RESULTS: Participant experiences revealed the following themes when describing the decision-making process: Information gathering, Intrapersonal perspectives, and Interpersonal influences. Decision outcomes included the presence or absence of decision regret and satisfaction. From these themes, we generated a Model of Cancer Clinical Trial Decision-making. CONCLUSION: Our model should be tested in hypothesis-driven research to elucidate factors and processes influencing decision balance and outcomes of trial-related decision-making. The model should also be tested in other disparities populations and for diagnoses other than cancer.

Perspectives on barriers and facilitators to minority recruitment for clinical trials among cancer center leaders, investigators, research staff, and referring clinicians: enhancing minority participation in clinical trials (EMPaCT).

BACKGROUND: The study of disparities in minority recruitment to cancer clinical trials has focused primarily on inquiries among minority populations. Yet very little is known about the perceptions of individuals actively involved in minority recruitment to clinical trials within cancer centers. Therefore, the authors assessed the perspectives of cancer center clinical and research personnel on barriers and facilitators to minority recruitment. METHODS: In total, 91 qualitative interviews were conducted at 5 US cancer centers among 4 stakeholder groups: cancer center leaders, principal investigators, research staff, and referring clinicians. All interviews were recorded and transcribed. Qualitative analyses of response data was focused on identifying prominent themes related to barriers and facilitators to minority recruitment. RESULTS: The perspectives of the 4 stakeholder groups were largely overlapping with some variations based on their unique roles in minority recruitment. Four prominent themes were identified: 1) racial and ethnic minorities are influenced by varying degrees of skepticism related to trial participation, 2) potential minority participants often face multilevel barriers that preclude them from being offered an opportunity to participate in a clinical trial, 3) facilitators at both the institutional and participant level potentially encourage minority recruitment, and 4) variation between internal and external trial referral procedures may limit clinical trial opportunities for racial and ethnic minorities. CONCLUSIONS: Multilevel approaches are needed to address barriers and optimize facilitators within cancer centers to enhance minority recruitment for cancer clinical trials.

Five National Cancer Institute-designated cancer centers' data collection on racial/ethnic minority participation in therapeutic trials: a current view and opportunities for improvement.

BACKGROUND: To ensure that National Institutes of Health-funded research is relevant to the population's needs, specific emphasis on proportional representation of minority/sex groups into National Cancer Institute (NCI) cancer centers' clinical research programs is reported to the NCI. METHODS: EMPaCT investigators at 5 regionally diverse comprehensive cancer centers compared data reported to the NCI for their most recent Cancer Center Support Grant competitive renewal to assess and compare the centers' catchment area designations, data definitions, data elements, collection processes, reporting, and performance regarding proportional representation of race/ethnicity and sex subsets. RESULTS: Cancer centers' catchment area definitions differed widely in terms of their cancer patient versus general population specificity, levels of specificity, and geographic coverage. Racial/ethnic categories were similar, yet were defined differently, across institutions. Patients' socioeconomic status and insurance status were inconsistently captured across the 5 centers. CONCLUSIONS: Catchment area definitions and the collection of patient-level demographic factors varied widely across the 5 comprehensive cancer centers. This challenged the assessment of success by cancer centers in accruing representative populations into the cancer research enterprise. Accrual of minorities was less than desired for at least 1 racial/ethnic subcategory at 4 of the 5 centers. Institutions should clearly and consistently declare their primary catchment area and the rationale and should report how race/ethnicity and sex are defined, determined, collected, and reported. More standardized, frequent, consistent collection, reporting, and review of these data are recommended, as is a commitment to collecting socioeconomic data, given that socioeconomic status is a primary driver of cancer disparities in the United States.

State-of-the-science of patient navigation as a strategy for enhancing minority clinical trial accrual.

BACKGROUND: Patient navigation programs are emerging that aim to address disparities in clinical trial participation among medically underserved populations, including racial/ethnic minorities. However, there is a lack of consensus on the role of patient navigators within the clinical trial process as well as outcome measures to evaluate program effectiveness. METHODS: A review of the literature was conducted of PubMed, Medline, CINHAL, and other sources to identify qualitative and quantitative studies on patient navigation in clinical trials. The search yielded 212 studies, of which only 12 were eligible for this review. RESULTS: The eligible studies reported on the development of programs for patient navigation in cancer clinical trials, including training and implementation among African Americans, American Indians, and Native Hawaiians. A low rate of clinical trial refusal (range, 4%-6%) was reported among patients enrolled in patient navigation programs. However, few studies reported on the efficacy of patient navigation in increasing clinical treatment trial enrollment. CONCLUSIONS: Outcome measures are proposed to assist in developing and evaluating the efficacy and/or effectiveness of patient navigation programs that aim to increase participation in cancer clinical trials. Future research is needed to evaluate the efficacy of patient navigators in addressing barriers to clinical trial participation and increasing enrollment among medically underserved cancer patients.

Impact of a home-based walking intervention on outcomes of sleep quality, emotional distress, and fatigue in patients undergoing treatment for solid tumors.

Exercise use among patients with cancer has been shown to have many benefits and few notable risks. The purpose of this study was to evaluate the impact of a home-based walking intervention during cancer treatment on sleep quality, emotional distress, and fatigue. Methods. A total of 138 patients with prostate (55.6%), breast (32.5%), and other solid tumors (11.9%) were randomized to a home-based walking intervention or usual care. Exercise dose was assessed using a five-item subscale of the Cooper Aerobics Center Longitudinal Study Physical Activity Questionnaire. Primary outcomes of sleep quality, distress, and fatigue were compared between the two study arms. Results. The exercise group (n = 68) reported more vigor (p = .03) than control group participants (n = 58). In dose response models, greater participation in aerobic exercise was associated with 11% less fatigue (p < .001), 7.5% more vigor (p = .001), and 3% less emotional distress (p = .03), after controlling for intervention group assignment, age, and baseline exercise and fatigue levels. Conclusion. Patients who exercised during cancer treatment experienced less emotional distress than those who were less active. Increasing exercise was also associated with less fatigue and more vigor. Home-based walking is a simple, sustainable strategy that may be helpful in improving a number of symptoms encountered by patients undergoing active treatment for cancer.

Experience of social role strain in Korean women with type 2 diabetes.

AIM: To expand our understanding of the experience of social role strain in the context of diabetes care among middle-aged married Korean women with type 2 diabetes. BACKGROUND: Diabetes remains an international concern. There are special challenges experienced by middle-aged married women who may not prioritize self-care and disease management. These challenges may be heightened in certain cultures due to traditional female and family roles along with other social norms and values. DESIGN: Descriptive qualitative study. METHODS: This qualitative descriptive study involves in-depth interviews conducted between January-February 2007 with ten middle-aged married Korean women purposively selected to represent both higher and lower levels of role strain as measured by the measure of role gratification and strain instrument from the companion study, which was conducted simultaneously. FINDINGS: Korean women in this study reported 'resentment regarding previous role strain'. This psychosocial burden was heightened by a noted pattern of 'sacrificing self in favour of others', which complicated both their personal lives and their ability to take care of themselves physically. Added to this were feelings of guilt related to their diabetes and the requirements of day-to-day management expressed as, 'my diabetes makes me a liability'. CONCLUSION: The women's role-strain experience related to their diabetes was intertwined with their past and current daily life. Further explication and interventions to address and manage role strain could potentially improve women's disease management and overall quality of life.

Person-environment interactions contributing to nursing home resident falls.

Although approximately 50% of nursing home residents fall annually, the surrounding circumstances remain inadequately understood. This study explored nursing staff perspectives of person, environment, and interactive circumstances surrounding nursing home falls. Focus groups were conducted at two nursing homes in the mid-Atlantic region with the highest and lowest fall rates among corporate facilities. Two focus groups were conducted per facility: one with licensed nurses and one with geriatric nursing assistants. Thematic and content analysis revealed three themes and 11 categories. Three categories under the Person theme were Change in Residents' Health Status, Decline in Residents' Abilities, and Residents' Behaviors and Personality Characteristics. There were five Nursing Home Environment categories: Design Safety, Limited Space, Obstacles, Equipment Misuse and Malfunction, and Staff and Organization of Care. Three Interactions Leading to Falls categories were identified: Reasons for Falls, Time of Falls, and High-Risk Activities. Findings highlight interactions between person and environment factors as significant contributors to resident falls.

Adolescents with asthma: learning needs and internet use assessment.

OBJECTIVE: To identify particular learning needs among adolescents with asthma and explore the potential utility of the Internet in addressing adolescents' expressed learning needs. METHODS: In 2004 and 2005, 6 gender-specific and age-specific focus groups were conducted among adolescents, ages 12-18 years, with mild intermittent to severe persistent asthma. Thematic analysis of participants' statements from transcribed group sessions were conducted by the research team, who compared field notes, reviewed focus group transcripts, and validated emerging and final themes. RESULTS: The majority of participants denied previous experience with formal asthma education. Participants reported their limited knowledge of asthma and its management. Health-care providers were recognized as the most credible source of asthma information. Compared to the older adolescents, the younger adolescents expressed stronger motivation to learn about asthma. The participants identified asthma learning needs for others, including peers, teachers, and parents. The importance of socialization, support, and information-sharing with other adolescents with asthma was perceived by participants in all age and gender groups. Participants discussed their Internet use and articulated suggestions regarding potential uses of the Internet to assist in adolescent asthma management. CONCLUSIONS: This study underscores the necessity of an early intervention to take advantage of younger adolescents' greater interest in learning about asthma, and highlights the importance of incorporating peer dynamics in designing interventions for adolescents. Our findings also illustrate the variety of ways that the Internet may be useful in developing a technology-driven intervention for adolescents.