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.

Surveillance for cancer recurrence in long-term young breast cancer survivors randomly selected from a statewide cancer registry.

PURPOSE: This study examined clinical breast exam (CBE) and mammography surveillance in long-term young breast cancer survivors (YBCS) and identified barriers and facilitators to cancer surveillance practices. METHODS: Data collected with a self-administered survey from a statewide, randomly selected sample of YBCS diagnosed with invasive breast cancer or ductal carcinoma in situ younger than 45 years old, stratified by race (Black vs. White/Other). Multivariate logistic regression models identified predictors of annual CBEs and mammograms. RESULTS: Among 859 YBCS (n = 340 Black; n = 519 White/Other; mean age = 51.0 ± 5.9; diagnosed 11.0 ± 4.0 years ago), the majority (> 85%) reported an annual CBE and a mammogram. Black YBCS in the study were more likely to report lower rates of annual mammography and more barriers accessing care compared to White/Other YBCS. Having a routine source of care, confidence to use healthcare services, perceived expectations from family members and healthcare providers to engage in cancer surveillance, and motivation to comply with these expectations were significant predictors of having annual CBEs and annual mammograms. Cost-related lack of access to care was a significant barrier to annual mammograms. CONCLUSIONS: Routine source of post-treatment care facilitated breast cancer surveillance above national average rates. Persistent disparities regarding access to mammography surveillance were identified for Black YBCS, primarily due to lack of access to routine source of care and high out-of-pocket costs. IMPLICATIONS: Public health action targeting cancer surveillance in YBCS should ensure routine source of post-treatment care and address cost-related barriers. Clinical Trials Registration Number: NCT01612338.

Relationship between individual and family characteristics and psychosocial factors in persons with familial pancreatic cancer.

OBJECTIVE: Describe relationships between self-reported personal demographics or familial characteristics and psychosocial outcomes (Patient Reported Outcome Measurement Information System Global Health, Impact of Event Scale-Revised [pancreatic cancer risk-related distress], cancer risk perception, and cancer worry) in participants with inherited or familial pancreatic cancer risk. METHODS: A multisite cross sectional survey of adults with elevated pancreatic cancer risk based on family history. All variables were summarized with descriptive statistics. To assess univariate associations, t test and chi-square/Fisher's exact test were used, and backward model selection was used in multivariable analysis. RESULTS: Respondents (N = 132) reported moderate to high frequency of cancer worry and 59.3% perceived a 50% or more perceived lifetime risk for pancreatic cancer, which far exceeds objective risk estimates. Cancer worry was associated with female gender (P = .03) and pancreatic cancer risk specific distress (P = .05). Higher-risk perception was associated with having a high school education or less (P = .001), higher distress (P = .02), and cancer worry (P = .008) and family cancer death experience (P = .02). Higher distress was associated with experience as a caregiver to a seriously ill family member in the past 5 years (P = .006). CONCLUSIONS: Individuals with inherited or familial pancreatic cancer risk experience cancer worry, distress, and have increased risk perception, particularly in the period following caring for a loved one with cancer. Routine evaluation of distress in this setting, as well as the development of supportive care resources, will help support patients living with risk for pancreatic cancer.

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.

Patient experiences living with pancreatic cancer risk.

BACKGROUND: Pancreatic cancer (PancCa) is recognized as a component of many well-described hereditary cancer syndromes. Minimal research has focused on patient needs and experiences living with this risk. PURPOSE: To understand the meaning and experience of living with familial PancCa risk and to explore experiences related to screening and prevention of PancCa. METHODS: Participants underwent semi-structured, in-depth interviews. Adults without PancCa and who met familial or hereditary risk criteria were eligible. Thematic analysis was completed on the transcripts in order to identify patterns, consistencies, and differences. Narrative review of existing literature related to women living with hereditary breast and ovarian cancer (HBOC) risk was completed to explore similarities and differences between published findings and our current findings. RESULTS: Nineteen individuals (9 male, 10 female) participated. Major themes addressed participants' family experiences with PancCa and PancCa death and the associated grief from the experiences. Family experiences impacted how participants interpreted and approached their own cancer risk and participated in the cancer screening program. Participants wanted to control their cancer risk and sought information and resources to prevent PancCa or PancCa related death. Distress related to risk was not described as constant but occurred around salient time points. CONCLUSION & FUTURE IMPLICATIONS: Study results begin to describe the lived experience of individuals with PancCa risk. Through this research we have uncovered important variables to further understand, measure, and intervene upon in future research. Distress related to risk was not described as ongoing, but occurred around specific and salient time points that brought risk to the forefront. Individuals with familial PancCa risk may have a unique experience compared to other hereditary cancer syndromes due to the high mortality of the disease and uncertainty related to prevention and early detection outcomes.

Evidence-based practice beliefs and implementation before and after an initiative to promote evidence-based nursing in an ambulatory oncology setting.

BACKGROUND: The purpose of evidence-based practice (EBP) in nursing is to improve patient outcomes, providing the best and most up-to-date care practices. In 2011, a nurse-led committee convened to develop an institute-wide initiative to promote EBP with oncology nurses at the Dana-Farber Cancer Institute. AIMS: Compare and describe oncology nurse beliefs and perceived implementation of EBP and explore beliefs and implementation before and after implementing an institutional EBP initiative. METHODS: Based on the Advancing Research and Clinical practice through close Collaboration (ARCC) Model, the Evidence-Based Practice Beliefs (EBP-B) and Implementation (EBP-I) scales were distributed to all Dana-Farber Cancer Institute registered and advanced practice nurses through an online survey in 2011 (T1) and again in 2013 (T2) after the implementation of an institute-wide nursing EBP initiative (orientation, poster presentations, education). Descriptive and correlation statistics were completed on total scores and demographics. Differences in beliefs and implementation scores based on demographics were analyzed with Mann-Whitney U tests. Open-ended item responses at each time point (T) were summarized for EBP barriers and promoters. FINDINGS: Thirty-two percent (n = 112 at T1; n = 113 at T2) of 350 nurses began the survey. A history of formal EBP education and nurse role were associated with higher EBP-B and EBP-I scores (p < .05). Highest level of education was significantly correlated with both EBP-B (r = .25; p = .03) and EBP-I (r = .32; p = .01). Narrative responses to open-ended questions described perceived personal and environmental barriers to engaging in EBP. LINKING EVIDENCE TO ACTION: Although no significant differences were noted in beliefs and implementation after the EBP initiative, nurses reported valuing EBP. Respondents acknowledged a lack of full preparation in the EBP process to engage in and implement EBP consistently. Nurse role, formal EBP education, and highest level of education were associated with perceptions of EBP beliefs and implementation. Nurses should be provided the mentorship and support to obtain continuing education about how to engage in EBP and about implementing EBP change.

Recommendations for the implementation of distress screening programs in cancer centers: report from the American Psychosocial Oncology Society (APOS), Association of Oncology Social Work (AOSW), and Oncology Nursing Society (ONS) joint task force.

In 2015, the American College of Surgeons (ACoS) Commission on Cancer will require cancer centers to implement screening programs for psychosocial distress as a new criterion for accreditation. A joint task force from the American Psychosocial Oncology Society, the Association of Oncology Social Work, and the Oncology Nursing Society developed consensus-based recommendations to guide the implementation of this requirement. In this review, the authors provide recommendations regarding each of the 6 components necessary to meet the ACoS standard: 1) inclusion of psychosocial representation on the cancer committee, 2) timing of screening, 3) method/mode of screening, 4) tools for screening, 5) assessment and referral, and 6) documentation.

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.

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.

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.

Science and practice aligned within nursing: structure and process for evidence-based practice.

Science and Practice Aligned Within Nursing (SPAWN) is an innovative method developed to guide the implementation of evidence-based practice (EBP) by oncology nurses in direct patient care settings. Science and Practice Aligned Within Nursing actualizes and addresses the important and essential practice component of EBP in oncology nursing. This article describes the development of SPAWN infrastructure, phases of the process, implementation, outcome evaluation, key insights, and lessons learned.

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.

Surviving the wait: defining support while awaiting breast cancer surgery.

AIM: This paper is a report of a descriptive study of the common meanings, shared experiences and practices of social support of women within the days between breast cancer diagnosis and treatment initiation. BACKGROUND: Support needs, types of social support and support outcomes during and after breast cancer treatment have been explored worldwide. However, to promote women's psychological wellbeing it is essential to understand how women define support in the highly stressful period initially following diagnosis. METHODS: Secondary analysis of narrative texts using interpretive phenomenology from 18 women in the Midwestern United States newly diagnosed with breast cancer who were interviewed in 2005 for a study of women's pretreatment thought processes. FINDINGS: 'Surviving the wait for surgery by balancing support needs to maintain a hopeful outlook' was the overarching pattern linking six other related themes: (1) controlling access to information for self and to others, (2) knowing which supportive network members to access, (3) controlling anxiety through distraction to maintain hope while waiting, (4) being in good hands and comfortable with decision (provider support), (5) protecting others through concealment and being strong to maintain hope and (6) accepting care from others vs. maintaining a nurturing role. CONCLUSION: Implications for nurses working with women in the days following breast cancer diagnosis include assessing women's definitions and availability of support; respecting varied needs for informational support; providing a supportive clinical environment; educating clinicians, family and friends regarding unsupportive responses within the cultural context and validating women's control and balancing of support needs.

Measures assessing spirituality as more than religiosity: a methodological review of nursing and health-related literature.

AIMS: This paper is a report of a methodological review conducted to analyse, evaluate and synthesize the rigour of measures found in nursing and health-related literature used to assess and evaluate patient spirituality as more than religiosity. BACKGROUND: Holistic healthcare practitioners recognize important distinctions exist about what constitutes spiritual care needs and preferences and what constitutes religious care needs and preferences in patient care practice. DATA SOURCES: Databases searched, limited to the years 1982 and 2009, included AMED, Alt Health Watch, CINAHL Plus with Full Text, EBSCO Host, EBSCO Host Religion and Philosophy, ERIC, Google Scholar, HAPI, HUBNET, IngentaConnect, Mental Measurements Yearbook Online, Ovid MEDLINE, Social Work Abstracts and Hill and Hood's Measures of Religiosity text. REVIEW METHODS: A methodological review was carried out. Measures assessing spirituality as more than religiosity were critically reviewed including quality appraisal, relevant data extraction and a narrative synthesis of findings. RESULTS: Ten measures fitting inclusion criteria were included in the review. Despite agreement among nursing and health-related disciplines that spirituality and religiosity are distinct and diverse concepts, the concept of spirituality was often used interchangeably with the concept religion to assess and evaluate patient spirituality. The term spiritual or spirituality was used in a preponderance of items to assess or evaluate spirituality. CONCLUSIONS: Measures differentiating spirituality from religiosity are grossly lacking in nursing and health-related literature.

Evaluating Clinical Implementation Approaches for Prostate Cancer Decision Support.

INTRODUCTION: Shared decision making is widely promoted for counseling men with localized prostate cancer. Results of randomized trials suggest decision aid efficacy. However, few practices or institutions have implemented decision support as standard practice. In this study we evaluated various implementation strategies for the decision aid P3P (Personal Patient Profile-Prostate) and analyzed feedback from clinical site staff and providers. METHODS: A hybrid type 1 effectiveness-implementation trial was conducted. Primary data were collected in 6 urology clinics of 3 geographically distinct health networks. During the implementation phase site specific strategies were codesigned with site leaders. Referral and access metrics for men with localized prostate cancer were monitored for up to 7 months. Clinical staff reports of barriers and facilitators of implementation were evaluated in professionally facilitated focus groups. RESULTS: Of 495 men with localized prostate cancer seen in the clinics 252 (51%, 95% CI 46-55) were informed of the program and of those men 107 (43%, 95% CI 36-49) accessed it. The highest access rates were observed with patient care coordinator e-mail and telephone contact (82%) or verbal physician instruction followed by e-mail and telephone invitations (87%). During focus groups physicians appraised the summaries as useful. Staff identified barriers included creating new workflows within heavy workloads and staff misunderstanding of context and resources. Promoters of successful implementation included an identified clinical lead and physician engagement. CONCLUSIONS: Implementation success was realized when physicians engaged and staff provided followup contact. New practice changes to implement interventions require multimodal strategies for early success.

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.

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.