Patient-related barriers have hindered cancer patients’ abilities to participate in the decision-making processes to participate in clinical trials. However, little is known about patients’ emotional barrier of fear and how physicians influence this barrier. We conducted 48 in-depth interviews with cancer patients to determine their knowledge and attitudes about participating in clinical trials, transcribed interviews verbatim, and qualitatively analyzed the transcripts using content analysis. For the purpose of this manuscript, we focused on findings related to the role of the emotional barrier of fear in cancer patients’ perceptions of participating in clinical trials. The majority of cancer patients (n=40, 83.3%) discussed fears surrounding clinical trials, particularly as it related to cancer diagnosis, clinical trial participation, and fear of the unknown. In conclusion, providers might consider addressing the role of fear in patients’ considering participating in a clinical trial.
Cancer clinical trials; Fear; Decision making; Patient–provider communication
Peer Connect matches cancer survivors and caregivers (guides) with those currently experiencing cancer-related issues seeking support (partners). Motivational interviewing (MI)-based communication skills are taught to provide patient-centered support. There is little guidance about MI-based applications with cancer survivors who may have multiple coping needs. This paper addresses the results and lessons learned from implementing Peer Connect. Thirteen cancer survivors and two caregivers received a 2-dayMI, DVD-based training along with six supplemental sessions. Nineteen partners were matched with guides and received telephone support. Evaluation included guide skill assessment (Motivational Interviewing Treatment Integrity Code) and 6-month follow-up surveys with guides and partners. Guides demonstrated MI proficiency and perceived their training as effective. Guides provided on average of five calls to each partner. Conversation topics included cancer fears, family support needs, coping and care issues, and cancer-related decisions. Partners reported that guides provided a listening ear, were supportive, and nonjudgmental. Limited time availability of some guides was a challenge. MI can provide support for cancer survivors and caregivers without specific behavioral concerns (e.g., weight and smoking). An MI support model was both feasible and effective and can provide additional support outside of the medical system.
Peer support; Cancer survivors; Telephone counseling; Motivational interviewing
Understanding women’s psychological barriers to getting Papanicolaou (Pap) screening has potential to impact cancer disparities. This study examined pain perceptions of Pap testing among Black, Latina and Arab women and goal setting to receive Pap tests.
Data on 420 women, a longitudinal study, were analyzed using Chi-square tests of differences and generalized linear mixed models.
At baseline, 30.3% of Black and 35.5% of Latina women perceived Pap tests to be very painful compared to 24.2% of Arab women. Perceptions of pain influenced goal settings, such as scheduling a first ever Pap test (Odds ratio = 0.58, 95% Confidence interval: 0.14-0.94). Immediately following the intervention, women’s perception that Pap tests are very painful significantly declined (P-value<0.001) with Arab and Black women registering the greatest improvements (20.3 and 17.3 percent reduction, respectively compared to 8.4 percent for Latina).
Having the perception that the Pap test is very painful significantly reduces the likelihood of Black, Latina and Arab women setting the goal to schedule their first ever Pap test. Latina women are the least likely to improve their perception that the Pap test is very painful, though national statistics show they have the highest rates of morbidity and mortality from cervical cancer. These findings are instructive for designing tailored interventions to break down psychological barriers to Pap screening among underserved women.
cervical cancer screening; Pap test; perceptions of pain; cancer disparities; race; ethnicity
Native Hawaiians and Filipinos are disproportionately impacted by cancer, and are less likely to participate in cancer screening than whites. Limited information exists about health information pathways and health communication challenges as they relate to cancer screening in these groups. Six focus groups (n=77) of Native Hawaiian and Filipino women age 40+ years were conducted to investigate these research gaps. Participants noted many health information challenges. Challenges were both practical and interpersonal and included both written and oral health communication. Practical challenges included “big” words, complexity of terms, and lack of plain English. Interpersonal issues included doctors rushing, doctors not assessing comprehension, and doctors treating respondents as patients not people. Women noted that they would often not ask questions even when they knew they did not understand because they did not want the provider to think negatively of them. Overarching themes to improve cancer communication gaps included: (1) the importance of family and community in health information dissemination; (2) the key role women play in interpreting health information for others; (3) the importance of personal experience and relationships to the salience of health information; and (4) the desire for local cultural relevance in health communication. Findings are discussed in light of the 2010 National Action Plan for Health Literacy.
Racial disparities have been found in the use of chemotherapy as cancer treatment. These disparities may be, in part, due to well-documented differences in the quality of communication during clinical interactions with oncologists and Black versus White patients. In this study using a Community-Based Participatory Research (CBPR) approach, academic researchers, community members, and oncologists formed a partnership to develop a communication intervention to address racial disparities in cancer care. Partners developed a Question Prompt List (QPL), a simple tool that can be used to improve communication, and thus treatment, during clinical interactions in which oncologists and Black patients discuss chemotherapy. Partners endorsed the use of a QPL, provided specific suggestions for content and format, conducted and analyzed qualitative interviews with Black patients receiving chemotherapy, and approved the final version. The feasibility and effectiveness of the QPL that resulted from this research process are currently under evaluation in a separate study.
Survivorship care plans (SCPs) are intended to educate survivors and providers about survivors’ transition from cancer treatment to follow-up care. Using a survey of 23 cancer programs in the South Atlantic United States, we (1) describe the prevalence and barriers to SCP use and (2) assess relationships between SCP use and (a) barriers and (b) cancer program characteristics. Most cancer programs (86%) reported some SCP use; however, less than a quarter of cancer programs’ providers had ever used an SCP. The majority (61%) began using SCPs because of professional societies’ recommendations. Key barriers to SCP use were insufficient organizational resources (75%) and systems for SCP use. We found patterns in SCP use across location, program type and professional society membership. Most cancer programs have adopted SCPs, but use remains inconsistent. Efforts to promote SCP use should address barriers, particularly in cancer programs that are susceptible to barriers to SCP use.
Survivorship care plan; survey; prevalence; barriers
This study sought to characterize the need for information about personal psychosocial care, providing direct care, and managing care among cancer caregivers, and explore preferred resources for caregiving information.
Data comes from cross-sectional telephone interviews of 1,247 family caregivers, which included 104 cancer caregivers.
A majority of cancer caregivers expressed one or more information need for each of the three content categories. Four out of ten caregivers expressed needing information about managing physical and emotional stress. A significantly higher percentage of male caregivers reported needing more information pertinent to providing direct care than females. Heightened objective burden was significantly associated with caregivers preferring to receive information from health professionals than informal sources (e.g., Internet), while the opposite was found among caregivers with lower objective burden.
These findings suggest that specific types of information and resources may be most relevant to specific subgroups of cancer caregivers.
Caregiving; information needs; information resources; Internet
Changing healthcare policy will undoubtedly affect the healthcare environment in which providers function. The current Fee for Service reimbursement model will be replaced by Value-Based Purchasing, where higher quality and more efficient care will be emphasized. Because of this, large healthcare organizations and individual providers must adapt to incorporate performance outcomes into patient care. Here, we present a Continuing Medical Education (CME)-based initiative at the City of Hope National Cancer Center that we believe can serve as a model for using CME as a value added component to achieving such a goal.
Continuing medical education; Cancer care; Oncology; Practice gaps; Performance improvement
Findings are inconsistent regarding physician gender differences in general prevention practices and cancer-specific attitudes and practices.
We analyzed cross-sectional data from randomly selected physicians (N = 722) to test associations of gender with prevention practices and attitudes.
Chi-square analyses (P < .05) showed gender differences for 14% (7/49) of the general and cancer-specific practices and attitudes tested. Multivariate analyses revealed that gender significantly (P < .05) predicted general prevention practices and cancer-specific attitudes in 4 models. Female gender predicted discussion of physical activity, violence, and use of substances. Male gender predicted belief in effectiveness of prostate-specific antigen screening.
Overall, male and female physicians showed more similarities than differences, but physician gender was associated with a number of important general and cancer-specific prevention services. Female physicians were more likely to discuss general health prevention activities than male physicians, especially issues considered sensitive. We discuss implications for research and education.
Cancer prevention is a broad field that crosses many disciplines; therefore, educational efforts to enhance cancer prevention research focused on interdisciplinary approaches to the field are greatly needed. In order to hasten progress in cancer prevention research, the Cancer Prevention Internship Program (CPIP) at Purdue University was designed to develop and test an interdisciplinary curriculum for undergraduate and graduate students. The hypothesis was that course curriculum specific to introducing interdisciplinary concepts in cancer prevention would increase student interest in and ability to pursue advanced educational opportunities (e.g., graduate school, medical school). Preliminary results from the evaluation of the first year which included 10 undergraduate and 5 graduate students suggested that participation in CPIP is a positive professional development experience, leading to a significant increase in understanding of interdisciplinary research in cancer prevention. In its first year, the CPIP project has created a successful model for interdisciplinary education in cancer prevention research.
Cancer Prevention; Curriculum; Interdisciplinary; undergraduate; graduate
The new health care buzz words include “personalized or individualized medicine.” Populations such as American Indians and Alaska Natives potentially have much to gain from this new science to overcome the known health disparities in these populations. This will require participation and acceptance of diverse populations. This article reviews the promise and challenges of individualizing cancer care using principles of community-based participatory research.
American Indian; CBPR; Genotype; Cancer health disparities
This paper describes the development and initial evaluation of a didactic curriculum to prepare research support staff with the core knowledge and skills required to collect patient-reported outcomes (PROs) via interviews. Research support staff members (N = 77) were recruited for eight separate workshops, each consisting of a didactic presentation followed by role-play scenarios with trained actors depicting common scenarios they may encounter as part of patient interaction. Trainees were observed and received feedback on their performance from trained facilitators and peers. In comparison to their pre-training assessment, trainees showed significant improvement in their confidence to conduct a research interview, handle a distressed participant, manage a wandering interview, ask participants sensitive questions, and handle irritated patients. Training research support staff in the effective collection of PROs via patient interviews can improve the confidence of these individuals in interacting with patients, which can ultimately lead to increased accuracy of data collection.
Outcome Assessment (Health Care); Training; Data Collection; Hospital Medical Staff
The Mayo Clinic Cancer Center and Diné College received funding for a 4-year collaborative P20 planning grant from the National Cancer Institute in 2006. The goal of the partnership was to increase Navajo undergraduates’ interest in and commitment to biomedical coursework and careers, especially in cancer research. This paper describes the development, pilot testing and evaluation of Native CREST (Cancer Research Experience & Student Training), a 10-week cancer research training program providing mentorship in a Mayo Clinic basic science or behavioral cancer research lab for Navajo undergraduate students. Seven Native American undergraduate students (5 females, 2 males) were enrolled during the summers of 2008 - 2011. Students reported the program influenced their career goals and was valuable to their education and development. These efforts may increase the number of Native American career scientists developing and implementing cancer research, which will ultimately benefit the health of Native American people.
Each year a percentage of the 1.2 million men and women in the United States with a new diagnosis of colorectal cancer join the 700,000 people who have an ostomy. Education targeting the long term, chronic care of this population is lacking. This report describes the development of a Chronic Care Ostomy Self Management Program, which was informed by (1) evidence on published quality of life changes for cancer patients with ostomies, (2) educational suggestions from patients with ostomies, and (3) examination of the usual care of new ostomates to illustrate areas for continued educational emphases and areas for needed education and support. Using these materials, the Chronic Care Ostomy Self Management Program was developed by a team of multi-disciplinary researchers accompanied by experienced ostomy nurses. Testing of the program is in process. Pilot study participants reported high satisfaction with the program syllabus, ostomy nurse leaders, and ostomate peer buddies.
Encouraging cancer survivors to discuss clinical trials with their physicians may increase enrollment in clinical trials. Health messages offer one method for encouraging such discussions. We hypothesized that matching messages to an individual’s preference for detailed or non-detailed information (i.e., monitoring style) would result in more discussions. Participants (N = 538) were cancer survivors, who phoned the National Cancer Institute’s Cancer Information Service (CIS). Participants were classified as higher or lower monitors and then randomized to receive detailed or non-detailed messages in the mail one and four weeks following their baseline CIS call. At 12-weeks there was a significant interaction between monitoring style and message detail. Follow-up analyses were non-significant but suggested a theoretically consistent pattern in which non-detailed messages were more effective among lower-monitors. These findings imply that providing extremely detailed information may be excessive, even to individuals engaged in information seeking behavior.
clinical trials; cancer survivor; health messages; monitoring style
In 2008, approximately 69,200 AYAs were diagnosed with cancer, second only to heart disease for males in this age group. Despite recent guidelines from professional organizations and clinical research that AYA oncology patients want information about reproductive health topics and physician support for nurses to address these issues with patients, existing research finds few oncology nurses discuss this topic with patients due to barriers such as lack of training. This article describes an innovative eLearning training program, entitled Educating Nurses about Reproductive Issues in Cancer Healthcare (ENRICH). The threefold purpose of this article is to: (1) highlight major reproductive health concerns relevant to cancer patients, (2) describe the current status of reproductive health and oncology communication and the target audience for the training, and (3) present a systematic approach to curriculum development, including the content analysis and design stages as well as the utilization of feedback from a panel of experts. The resulting 10-week curriculum contains a broad-based approach to reproductive health communication aimed at creating individual- and practice-level change.
To identify recent studies in the scientific literature that evaluated structured postgraduate public health and biomedical training programs and reported career outcomes among individual trainees. A comprehensive search of several databases was conducted to identify published studies in English between January 1995–January 2012 that evaluated career outcomes for trainees completing full-time public health or biomedical training programs of at least 12 months duration, with structured training offered on-site. Of the over 600 articles identified, only 13 met the inclusion criteria. Six studies evaluated U.S. federal agency programs and six were of university-based programs. Seven programs were solely or predominantly of physicians, with only one consisting mainly of PhDs. Most studies used a cohort or cross-sectional design. The studies were mainly descriptive, with only four containing statistical data. Type of employment was the most common outcome measure (n=12) and number of scientific publications (n=6) was second. The lack of outcomes evaluation data from postgraduate public health and biomedical training programs in the published literature is a lost opportunity for understanding the career paths of trainees and the potential impact of training programs. Suggestions for increasing interest in conducting and reporting evaluation studies of these structured postgraduate training programs are provided.
Short-term cancer research programs for health professions students typically state goals of encouraging and fostering interest in pursuing cancer research-based careers. Evaluating career choices and professional achievements of these trainees has been problematic. Well-designed program evaluation is a key element in determining successful training experiences, and program-specific outcome measures are typically used to assess the effectiveness of each short-term cancer research experience. We describe evaluation approaches for longitudinal tracking of participants of our National Cancer Institute-sponsored Cancer Research Experiences for Students (CaRES) program at the University of Alabama at Birmingham, emphasizing those approaches that demonstrated greatest effectiveness. We also evaluate the various methods we used in terms of cost, efficiency, and effectiveness. Recommendations are provided to assist comparable training programs facing the challenges of longitudinal tracking and program evaluation.
This paper describes a community-based participatory research program with Alaska Native people addressing a community need to reduce tobacco use among pregnant women and children. Tobacco use during pregnancy among Alaska Native women is described along with development of a community partnership, findings from a pilot tobacco cessation intervention, current work, and future directions. Among Alaska Native women residing in the Yukon Kuskokwim Delta region of western Alaska, the prevalence of tobacco use (cigarette smoking and/or use of smokeless tobacco) during pregnancy is 79%. Results from a pilot intervention study targeting pregnant women indicated low rates of participation and less than optimal tobacco abstinence outcomes. Developing alternative strategies to reach pregnant women and to enhance the efficacy of interventions is a community priority, and future directions are offered.
Nicotine; Tobacco; Intervention; Pregnancy; Alaska native
The paper describes a challenging clinical encounter with an adolescent undergoing treatment for cancer. Undeniably, oncologists have a very challenging job. It requires more than simply diagnosing and treating cancer by giving chemotherapy and checking blood counts. The challenges they face are increased when caring for a teenager with cancer. Providing opportunities for these young patients to be involved in their own treatment and motivating them in tough times are crucial. Communication is the foremost way to keep all doors open in this unique physician–patient relationship. One such approach is “movie therapy” using characters and actions as metaphors for describing cancer and cancer treatment.
Physician-patient communication; Movie therapy; Adolescent oncology; Cancer; Chemotherapy
Compared to other racial/ethnic groups, Korean, Filipino, and Vietnamese American women experience high incidence rates of cervical cancer but low rates of cervical cancer screenings. This study examines the behaviors and attitudes towards screening in young Korean, Filipino, and Vietnamese American women (n=304) in the San Francisco Bay Area. Results indicated Vietnamese American (OR=2.51) and Filipino American (OR=2.31) women had greater odds of ever having a Pap test than Korean American women. Those older (OR=1.55), born in the USA (OR=2.64), and those comfortable with the test (OR=3.41) also had greater odds of ever having a Pap test. Correct knowledge of cervical cancer and the human papillomavirus did not significantly affect the odds of having a Pap test. Interventions to increase Pap testing in these populations should focus on increasing levels of comfort and should target those younger and foreign born.
Cervical cancer screening; Pap testing; Young Asian American women; Korean; Vietnamese; Filipino; San Francisco