Health Care Provider Perceptions of Caring for Individuals with Inherited Pancreatic Cancer Risk.

Recent national guidelines recommend genetic risk assessment for all patients diagnosed with pancreatic cancer, yet individuals with pancreatic cancer obtain genetic testing at suboptimal rates. Both patient and provider factors play a role in adherence to genetic testing recommendations. The purpose of this study was to understand health care provider perspectives of caring for patients with inherited pancreatic cancer risk. The study was a cross-sectional mixed method study utilizing a qualitative interview and a survey. The study sample included health care providers who provide care for patients with pancreatic cancer or inherited risk. Qualitative data were analyzed using content analysis, while quantitative data were summarized using descriptive statistics. Thirty participants had complete interview data and 29 completed a survey. The sample was comprised of physicians (n = 17), genetic counselors (n = 6), nurses (n = 3), and social workers (n = 3). Respondents were less confident in their ability to identify patients with inherited pancreatic cancer risk compared with other hereditary cancer syndromes. Several challenges were identified including the pancreatic cancer illness trajectory; lack of evidence-based practice guidelines; difficulty interpreting genetic test results; and difficulty following up on referrals. Participants perceived a lack of educational resources for patients with inherited pancreatic cancer risk. Health care providers who care for individuals with inherited pancreatic cancer risk face challenges that are distinct from those encountered during the care of individuals for other hereditary cancers. There is a need for additional resources at the patient-, provider-, and system-level.

Correction to: Health Care Provider Perceptions of Caring for Individuals with Inherited Pancreatic Cancer Risk.

The original version of this article unfortunately contained a mistake. The name of "Matthew Yurgelun" is now corrected in the author group of this article.

A state-wide initiative to promote genetic testing in an underserved population.

Genetic testing for cancer susceptibility has been widely studied and utilized clinically. Access to genetic services in research and practice is largely limited to well-insured, Caucasian individuals. In 2009, the Cancer Resource Foundation (CRF) implemented the Genetic Information for Treatment Surveillance and Support (GIFTSS) program to cover the out-of-pocket expenses associated with cancer genetic testing, targeting high-risk individuals with limited financial means and limited health insurance coverage. Here, we (i) describe the characteristics of participants in the Massachusetts (MA) GIFTSS program and (ii) evaluate mutations found in this diverse sample. A secondary retrospective data analysis was performed using de-identified demographic data obtained from laboratory requisition forms and cancer genetic testing result information from the laboratory source. Eligible participants were those who utilized the MA GIFFTS program from 2009 through December of 2014. Data were summarized using descriptive measures of central tendency. Participants were residents of Massachusetts who had health insurance and had a reported income within 250-400% of the federal poverty level. Genetic testing results were categorized following clinical guidelines. Overall, 123 (13%) of participants tested positive for a mutation in a cancer susceptibility gene. For those with a cancer diagnosis, 65 (12%) were found to have a positive result and 20 (7%) had a variant of uncertain significance (VUS). For those unaffected patients, 58 (15%) had a positive result and 10 (3%) were found to have a VUS. The results from this study are useful in describing genetic testing outcomes in this high-risk underserved community. Repeatedly, the literature reports that individuals from diverse or limited resource settings are less likely to access genetic testing. Continued research efforts should be devoted to promoting the access of genetic testing in the high-risk, underserved community.

Perceptions of Cancer Risk, Cause, and Needs in Participants from Low Socioeconomic Background at Risk for Hereditary Cancer.

The purpose of this study was to describe perceptions of cancer risk, cause, and needs in participants from a low socioeconomic background at risk for hereditary cancer. We surveyed 307 individuals with the Cancer Awareness and Needs survey and received 128 responses (41.6% response rate). Family history, genetics, and tobacco use were selected most frequently as a cause of cancer; 36% (n = 46) selected fate and/or God's will. A total of 87.5% (n = 112) understood that having a close family member with breast cancer could increase personal risk; however responses were varied when asked if this was related to risk for other cancers. Most participants had undergone cancer screening, half reported undergoing breast magnetic resonance imaging, which was associated with personal (p < 0.01) and family cancer history (p = 0.03). An additional 76.6% (n = 98) felt informed about cancer screening and most received information from health care providers and family or friends. Ensuring that patients and clinicians are educated about hereditary cancer risk, detection, and prevention should be priorities for future research.

Feasibility and Acceptability of a Web Site to Promote Survivorship Care in Survivors of Hodgkin Disease.

PURPOSE: Evaluate rates of enrollment, completion, and patient-reported acceptability of an educational survivorship-care Web site for survivors of Hodgkin disease (HD). PATIENTS AND METHODS: The study was a mixed-method evaluation design. Eligible participants were adults who had completed treatment of a primary diagnosis of HD ≥ 2 years before enrollment. Patients were recruited through postal mail and telephone and were asked to review a Web site, complete an adapted version of the Acceptability E-scale (total score of 24 or greater indicates acceptability), and respond to a structured telephone or e-mail interview to discuss experiences with the Web site. RESULTS: Of 259 potentially eligible participants identified by medical record review, 124 survivors had confirmed contact with study staff and were invited to participate; 63 people (50.8%; 90% CI, 43% to 59%) enrolled; 37 participants (58.7%) were men. The median age at time of enrollment was 51.0 years (range, 29.3 to 80.0 years), and the median time since completion of treatment of HD was 14.9 years (range, 3 to 38.75 years). Overall, 82.5% of those enrolled viewed all Web site content. Forty-eight participants completed the acceptability survey, which resulted in a mean acceptability score of 26.5 (standard deviation, 3.5). The majority of enrollees (67%) completed a follow-up interview. CONCLUSION: Overall, HD survivor participants viewed the content and reviewed it favorably. A Web-based intervention is a promising way to provide survivors of HD with information about how to manage the long-term and late effects from cancer and treatment, and provide trusted survivorship resources.

Disparities in Cancer Genetic Risk Assessment and Testing.

Scientific and technologic advances in genomics have revolutionized genetic counseling and testing, targeted therapy, and cancer screening and prevention. Among younger women, African American and Hispanic women have a higher rate of cancers that are associated with hereditary cancer risk, such as triple-negative breast cancer, which is linked to poorer outcomes. Therefore, genetic testing is particularly important in diverse populations. Unfortunately, all races and ethnic groups are not well represented in current genetic testing practices, leading to disparities in cancer prevention and early detection.

Advances in Hereditary Colorectal and Pancreatic Cancers.

PURPOSE: Innovations in genetic medicine have led to improvements in the early detection, prevention, and treatment of cancer for patients with inherited risks of gastrointestinal cancer, particularly hereditary colorectal cancer and hereditary pancreatic cancer. METHODS: This review provides an update on recent data and key advances that have improved the identification, understanding, and management of patients with hereditary colorectal cancer and hereditary pancreatic cancer. FINDINGS: This review details recent and emerging data that highlight the developing landscape of genetics in hereditary colorectal and pancreatic cancer risk. A summary is provided of the current state-of-the-art practices for identifying, evaluating, and managing patients with suspected hereditary colorectal cancer and pancreatic cancer risk. The impact of next-generation sequencing technologies in the clinical diagnosis of hereditary gastrointestinal cancer and also in discovery efforts of new genes linked to familial cancer risk are discussed. Emerging targeted therapies that may play a particularly important role in the treatment of patients with hereditary forms of colorectal cancer and pancreatic cancer are also reviewed. Current approaches for pancreatic cancer screening and the psychosocial impact of such procedures are also detailed. IMPLICATIONS: Given the availability of new diagnostic, risk-reducing, and therapeutic strategies that exist for patients with hereditary risk of colorectal or pancreatic cancer, it is imperative that clinicians be vigilant about evaluating patients for hereditary cancer syndromes. Continuing to advance genetics research in hereditary gastrointestinal cancers will allow for more progress to be made in personalized medicine and prevention.

A nurse-led evidence-based practice project to monitor and improve the management of chemotherapy-induced nausea and vomiting.

Chemotherapy-induced nausea and vomiting (CINV) is a common and severe symptom experienced by patients undergoing cancer treatment during the acute or delayed period. Individual characteristics can compound risk for CINV. Identification of risk factors for CINV and structured, nurse-led telephone follow-up are effective, evidence-based methods to support patients undergoing cancer treatment. The authors successfully implemented a structured, nurse-led CINV intervention to improve assessment, follow-up, and support for 30 patients undergoing chemotherapy within an adult ambulatory oncology clinic.

When study site contributes to outcomes in a multi-center randomized trial: a secondary analysis of decisional conflict in men with localized prostate cancer.

PURPOSE: Evaluate baseline factors that may explain the influence of study site on decisional conflict (DC) in men from the Personal Patient Profile: Prostate (P3P) randomized trial. MATERIALS AND METHODS: 476 cases from 5 P3P sites were included. Participants completed baseline demographic assessments, 4 subscales of the DC scale at baseline (uncertainty, informed, values clarity, and support), the Expanded Prostate Cancer Index Composite (short form) and the State-Trait Anxiety Inventory. Site data regarding typical practices were collected. Linear regressions were used to model the relation between baseline DC scores and study site adjusting for the list of variables. RESULTS: Baseline decisional uncertainly (p = 0.001) and informed (p = 0.03) subscales were significantly different across sites. Participant demographic and baseline measures were significantly different (p < 0.05) between sites except for trait anxiety. We identified participant level factors that explained study site differences at baseline for the decisional uncertainty and values clarity subscales: a preferred treatment choice at study entry, whether the study program was accessed at home vs. in clinic, number of doctors consulted pre-study, working status, state anxiety, information from the media or a health care provider, and perceived knowledge level. State anxiety was associated with higher DC across all subscales. CONCLUSIONS: Individual characteristics of men seeking consultation for LPC were associated with DC at baseline, not the site alone; anxiety contributed to higher conflict. These findings will inform future development and implementation of the P3P and other decision support interventions. TRIAL REGISTRATION: NCT00692653.

Communication about symptoms and quality of life issues in patients with cancer: provider perceptions.

This study used qualitative data collection and analysis methods to describe provider perceptions of addressing patient-initiated communication about common or sensitive symptom and quality of life issues (SQIs) in oncology. Eligible participants were health care providers who had participated in a larger trial testing a patient-centered technology to assess cancer SQIs and support self-care. Audio-recorded vignettes were simulated based on recorded clinic visits from the larger trial and presented during semi-structured cognitive interviews with each participant. Transcripts of the interviews were content analyzed. Twelve providers participated. Participants' responses included four themes: the institutional and clinical context, the complexity of addressing SQIs, strategies used to understand SQIs, and creating a plan to address SQIs. Participants felt that approaching SQIs inside and outside of the clinic required ongoing communication within a multidisciplinary team both to gather information and manage the SQI. Forming a relationship with the patient was one strategy to facilitate assessing SQIs. Most participants expressed a need for guidance about effective SQI communication. Providers perceived approaching SQIs as a routine part of interdisciplinary clinical care. The specific symptom and the complexity of its management influenced the process of assessing and managing SQIs. Findings have implications for institutional processes, training, evaluation, and program development.

Seeking balance: decision support needs of women without cancer and a deleterious BRCA1 or BRCA2 mutation.

Recommendations for women with a deleterious BRCA1 or BRCA2 gene mutation include complex medical approaches related to cancer risk reduction and detection. Current science has not yet fully elucidated decision support needs that women face when living with medical consequences associated with known hereditary cancer risk. The purpose of this study was to describe health communication and decision support needs in healthy women with BRCA1/2 gene mutations. The original researchers completed an interpretive secondary qualitative data analysis of 23 phenomenological narratives collected between 2008 and 2010. The Ottawa Decision Support and Patient Centered Communication frameworks guided the study design and analysis. Women described a pattern wherein breast and ovarian cancer risk, health related recommendations and decisions, and personal values were prioritized over time based on life contexts. Knowing versus acting on cancer risk was not a static process but an ongoing balancing act of considering current and future personal and medical values, further compounded by the complexity of recommendations. Women shared stories of anticipatory, physical and psychosocial consequences of the decision making experience. The findings have potential to generate future research questions and guide intervention development. Importantly, findings indicate a need for ongoing, long-term, support from genetics professionals and decision support interventions, which challenges the current practice paradigm.

Evaluation outcomes of a dedicated education unit in a baccalaureate nursing program.

Quality clinical learning environments (CLE) are crucial to student education and clinical learning and are influenced by both academic and nursing service factors. The University at Buffalo School of Nursing implemented an innovative academic-service partnership model for clinical education of students called a Dedicated Education Unit (DEU). The aims of this study were to (a) investigate students' perceived outcomes of the DEU model on the CLE and (b) explore staff nurses' and faculty's perceived outcomes of the DEU. Qualitative and quantitative methodologies were used. Descriptive statistics and thematic analysis of focus groups are reported. Students and DEU nurses reported high scores for satisfaction. Focus group themes for students, faculty, and DEU nurse revealed appreciation for the benefits of the DEU model. The DEU is a worthwhile approach to clinical education that can enhance student's ability to receive diverse clinical experiences and access to clinical experts. Such programs can strengthen academic/service relationships.

Symptom management excellence initiative: promoting evidence-based oncology nursing practice.

Accessing and using the best evidence for cancer symptom interventions are prerequisites for nursing excellence. To incorporate evidence into direct care practice, staff at the Dana-Farber Cancer Institute implemented the Symptom Management Excellence initiative to compare patients' and nurses' reports of their most frequent and highest priority cancer symptoms. Interdisciplinary teams then convened to design and test the feasibility of bringing symptom management evidence into clinical practice. This article describes how the initiative has successfully used patient-reported data, direct-care nurse input, research evidence, and expert opinion to systematically improve cancer symptom management.

Living my family's story: identifying the lived experience in healthy women at risk for hereditary breast cancer.

BACKGROUND: Based on known or suggested genetic risk factors, a growing number of women now live with knowledge of a potential cancer diagnosis that may never occur. Given this, it is important to understand the meaning of living with high risk for hereditary breast cancer. OBJECTIVE: The objective of the study was to explore how women at high risk for hereditary breast cancer (1) form self-identity, (2) apply self-care strategies toward risk, and (3) describe the meaning of care through a high-risk breast program. METHODS: Interpretive hermeneutic phenomenology guided the qualitative research method. Women at high risk for hereditary breast cancer were recruited from a high-risk breast program. Open-ended interview questions focused on experiences living as women managing high risk for breast cancer. Consistent with hermeneutic methodology, the principal investigator led a team to analyze the interview transcripts. RESULTS: Twenty women participated in in-depth interviews. Analysis revealed that women describe their own identity based on their family story and grieve over actual and potential familial loss. This experience influences self-care strategies, including seeking care from hereditary breast cancer risk experts for early detection and prevention, as well as maintaining a connection for early treatment "when" diagnosis occurs. CONCLUSIONS: Healthy women living with high risk for hereditary breast cancer are living within the context of their family cancer story, which influences how they define themselves and engage in self-care. IMPLICATIONS FOR PRACTICE: Findings present important practical, research, and policy information regarding health promotion, psychosocial assessment, and support for women living with hereditary breast cancer risk.

Transition to breast cancer survivorship: a longitudinal qualitative follow-up study of two-year survivors.

This article reports on a qualitative, longitudinal follow-up of a cohort of breast cancer survivors through which their pretreatment psychological adjustment thought processes and behaviors were compared with those 2 years following diagnosis. Analysis revealed five interrelated themes reflecting changing thought processes and behaviors over time. Quantitative measures of psychological adjustment at 2 years were consistent with the qualitative findings in some respects; however, the concepts measured by these tools were inconsistent with themes identified through qualitative analysis. Findings support a need to study ways to assess women's psychosocial needs and intervene to support adjustment among 2-year breast cancer survivors.

The association of perceived provider-patient communication and relationship quality with colorectal cancer screening.

BACKGROUND: Two-thirds of adults aged 50 years and older are adherent to recommendations for colorectal cancer screening. Provider-patient communication and characteristics of the patient-provider relationship may relate to screening behavior. METHODS: The association of provider communication quality, relationship, and colorectal cancer screening was examined within data from the 2007 Health Information National Trends Survey. RESULTS: Perceived provider communication and relationship quality were associated with both adherence to colonoscopy and with ever having been screened. Predictive margins analyses indicated that increasing perceptions from lowest to highest levels of communication and relationship quality would be associated with increases in screening rates approaching 16 percentage points. CONCLUSION: Improving provider-patient communication and relationship quality could potentially improve colorectal cancer screening behaviors among adults aged 50 years and older. Future research and clinical practice should focus on understanding the role of these factors in screening behavior and enhance the provider-patient interaction.

Engaging in medical vigilance: understanding the personal meaning of breast surveillance.

PURPOSE/OBJECTIVES: To explore how women with a hereditary risk of breast cancer experience living with and managing that risk through surveillance. RESEARCH APPROACH: Hermeneutic phenomenology guided the qualitative research design. SETTING: The Facing Our Risk of Cancer Empowered online organization. PARTICIPANTS: 9 women undergoing breast surveillance for hereditary breast cancer risk recruited through purposive sampling. METHODOLOGIC APPROACH: Data were collected through semistructured interviews lasting about an hour. A team approach guided data analysis of transcribed interview text based on a modified Diekelman, Allen, and Tanner method. MAIN RESEARCH VARIABLES: Lived experience and personal meaning of hereditary breast cancer risk and surveillance. FINDINGS: Hereditary risk of breast cancer involves a change in one's view of life and necessitates engaging in medical vigilance, often making these women feel ill when they are otherwise healthy. Most have personal family experiences of cancer and value surveillance, although they live with the "what if" of a cancer diagnosis when waiting for surveillance results. All women discussed a need for accurate information, support, and guidance from healthcare providers. CONCLUSIONS: Women became their own experts at living with and managing hereditary breast cancer risk. Experiences and interactions within the healthcare system influenced the meaning of breast surveillance. INTERPRETATION: Nurses should be aware of the high level of knowledge among women living with hereditary risk and respect their knowledge by providing accurate and informed care. That can occur only through proper education of nurses and all healthcare professionals working with women at risk for hereditary breast cancer so that they understand current standards of care and how hereditary breast cancer risk is defined and managed.