Pilot study of a brief provider and EMR-based intervention for overweight teens with asthma.

INTRODUCTION: Asthma-related morbidity is increased in overweight patients, yet providers are given little guidance on how to discuss weight and asthma management with overweight teens. OBJECTIVE: We piloted an electronic medical record (EMR)-based tailored discussion guide (TDG) and a brief provider training, to address weight management in overweight teens with asthma. The primary outcome was intervention impact on patient-reported asthma outcomes (e.g., asthma control and morbidity). Secondary outcomes included change in BMI, patient-centeredness, and change in healthy behaviors. METHODS: Teens aged 13-18 years with persistent asthma and a body mass index ≥ 85th percentile for their age and sex were eligible. Parents of eligible teens were contacted before an upcoming appointment to allow teen enrollment during the clinic visit. Providers reviewed Motivational Interviewing (MI) concepts and were trained in the TDG for support of conversations around weight and asthma management. Measures included asthma outcomes retrieved from the EMR at 6- and 12-month post-baseline, teen impressions of patient-provider communication at 6-week post-enrollment, and teen report of healthy behaviors at 6- and 12-month post-baseline. RESULTS: Of 44 teens enrolled (77% African-American, 63% female), mean BMI for intervention (n=25) and control groups (n=19) at baseline were similar. Thirty participants (68%) completed a 6-week questionnaire. Compared to controls, at 6 months, intervention teens reported fewer days of limited activity and "uncontrolled asthma," but at 12 months, only restricted activity remained lower, and BMI was not reduced. Intervention teens reported clinic visits that were more patient-centered than controls, including discussion of asthma treatment options with provider, feeling ready to follow an asthma treatment routine, and receiving helpful tips about reaching a healthy weight. The healthy behavior "dinner with family" showed improvement for intervention teens at 6 and 12 months. The feasibility study also revealed a need to improve recruitment strategies and to streamline intervention delivery. CONCLUSION: Modest improvements in patient-reported asthma outcomes and health behaviors were observed. There was strong evidence that the TDG supports provider discussion of weight and asthma to create a more patient-centered conversation from the perspective of participating teens. Challenges to recruitment and clinic adaptation must be addressed before advancing to a full-scale trial. TRIAL REGISTRATION: NCT02575326 Teen Asthma Control Encouraging a Healthier Lifestyle, www.cllinicaltrials.gov.

Self-report of domestic violence and forced sex are related to sexual risk behaviors in a sample of juvenile detainees.

BACKGROUND: Justice-involved youth have higher rates of sexually transmitted infections (STIs), and a higher prevalence of the associated sexual risk behaviors. Sexual risk behaviors are also associated with alcohol and drug use. Research suggests that a history of trauma is an important predictor of alcohol and drug use in youth offenders, and therefore is a likely contributor to sexual risk behavior in this population. The objective of this analysis is to determine the association of trauma, specifically, domestic violence and forced sex, to six sexual risk behaviors and a history of chlamydia among detained youth. METHODS: The analysis uses data from a convenience sample of detainees assenting to HIV testing conducted December 2016 - August 2017 using the state-certified Voluntary Counseling Testing and Referral (VCTR) process. RESULTS: Of the 379 youth that received VCTR at the facility, 308 (81.3%) were used in this analysis. Report of domestic violence was significantly associated with sex under the influence of alcohol and was also significantly associated with sex under the influence of marijuana. Forced sex was associated with a sexual partner of unknown HIV status. CONCLUSIONS: Traumatic experiences were related to sexual risk behaviors in this analysis, and substance use was strongly implicated in the association. Trauma is known to be a catalyst to sexual risk behaviors, substance use, and delinquency in adolescence. Results support the findings of other investigators and re-iterate the need for trauma-informed interventions that can improve the life trajectories of detained youth.

Overweight adolescents and asthma: Revealing motivations and challenges with adolescent-provider communication.

OBJECTIVE: Among teens with asthma, challenges of disease management may be greater in those with a body mass index (BMI) >85th percentile compared to youth within the parameters for normal weight-for-age. This mixed-methods study assessed teens' awareness of the link between weight and asthma management, and perspectives on how medical providers might open a discussion about managing weight. METHOD: Teens aged 13-18, having BMI >85 percentile and chronic asthma, identified using health system databases and a staff email message board, were invited to complete a semi-structured, in-depth phone interview. Interviews were audio taped, transcribed, and qualitatively analyzed, using the Framework Method. Responses were summarized and themes identified. Descriptive summaries were generated for a 16-item survey of weight conversation starters. RESULTS: Of 35 teens interviewed, 24 (69%) were girls, 11 (31%) boys, 20 (63%) African-American. All teens reported having "the weight conversation" with their doctors, and preferred that parents be present. Half knew from their doctor about the link between being overweight and asthma, others knew from personal experience. Nearly all expressed the importance of providers initiating a weight management conversation. Most preferred conversation starters that recognized challenges and included parents' participation in weight management; least liked referred to "carrying around too much weight." CONCLUSIONS: Most teens responded favorably to initiating weight loss if it impacted asthma management, valued their provider addressing weight and family participation in weight management efforts. Adolescents' views enhance program development fostering more effective communication targeting weight improvement within the overall asthma management plan.

Knowledge about genomic recurrence risk testing among breast cancer survivors.

Genomic expression profiling of tumors is used to individualize early-stage breast cancer treatment. However, very little is known about patients' understanding of and desired information about these tests, such as Oncotype DX. We addressed these issues via a survey mailed to 130 early-stage breast cancer patients who received an Oncotype DX test result. The survey assessed understanding (14 items), information desired about genomic expression profiling tests, and if and where they sought information about Oncotype DX. Sixty-four surveys were returned. Overall, 54% of the knowledge items were answered correctly. Patients wanted education about genomic tests in many areas. Overall, 62% sought information about the test, primarily from the Internet (48%) and doctor or health care provider (31%). In sum, patients' misunderstanding of genomic tests abound, necessitating better educational efforts on behalf of health care systems to meet their needs for varied information through different communication channels.

Knowledge about hereditary colorectal cancer among colorectal cancer survivors.

AIM: Little is known about colorectal cancer (CRC) patients' knowledge regarding hereditary CRC (HCRC). The primary aim of this study was to evaluate CRC survivors' level of knowledge about HCRC and determine if this knowledge varies by demographic or clinical characteristics. METHODS: Data were obtained using a cross-sectional survey of CRC patients at low, moderate, and high risk for HCRC seen at a comprehensive cancer center over a 5-year period (n = 93). Seven items (with potential responses of yes/no/don't know) assessed patients' knowledge. A t-test was conducted to compare composite knowledge among individuals at increased risk for CRC to those who were not at increased risk. RESULTS: For all but one of seven questions, most individuals reported that they did not know the answer to the question. Knowledge among participants at increased risk for HCRC (mean = 2.46, standard deviation = 1.93) was greater than those who were not at increased risk (mean = 1.51, standard deviation = 1.84). There was a statistically significant difference in knowledge between the groups, t(90) = 2.40, p = 0.018. CONCLUSIONS: Results suggest an overall deficit of knowledge among CRC patients. More efforts should focus on increasing knowledge about HCRC prevention among patients and family members. With a better understanding of knowledge gaps, researchers and health-care providers can reevaluate how to better inform CRC patients about HCRC risks.

High risk men's perceptions of pre-implantation genetic diagnosis for hereditary breast and ovarian cancer.

BACKGROUND: Pre-implantation genetic diagnosis (PGD) is an assisted reproductive technology procedure which provides parents with the option of conducting genetic analyses to determine if a mutation is present in an embryo. Though studies have discussed perceptions of PGD from a general population, couples or high-risk women, no studies to date have specifically examined PGD usage among men. This study sought to explore perceptions and attitudes towards PGD among males who either carry a BRCA mutation or have a partner or first degree relative with a BRCA mutation. METHODS: A cross-sectional survey was conducted among 228 men visiting the Facing Our Risk of Cancer Empowered or Craigslist website. Eligibility criteria included men who self-reported they had been tested for a BRCA mutation or had a partner or first degree relative tested for a BRCA mutation. A 41-item survey assessed socio-demographic, clinical characteristics, PGD knowledge and attitudinal factors and consideration of the use of PGD. Differences in proportions of subgroups were tested using the Monte Carlo exact test for categorical data. A multiple logistic regression model was then built through a backward elimination procedure. RESULTS: Although 80% of men reported being previously unfamiliar with PGD, after learning the definition of PGD, 34% of the 228 respondents then said they would 'ever consider the use of PGD'. Respondents who thought of PGD only in terms of 'health and safety' were almost three times more likely (OR = 2.82; 95% 1.19-6.71) to 'ever consider the use of PGD' compared with respondents who thought of PGD in terms of both 'health and safety', and 'religion and morality'. CONCLUSIONS: As with other anonymous web-based surveys, we cannot verify clinical characteristics that may impact consideration of PGD use. Our findings indicate high-risk men need more information about PGD and may benefit from educational materials to assist them in reproductive decision-making.

BRCA carriers' thoughts on risk management in relation to preimplantation genetic diagnosis and childbearing: when too many choices are just as difficult as none.

Women with a BRCA mutation have unique concerns about childbearing and future fertility. In a focus group conducted among unaffected carriers, the majority of women held positive attitudes toward preimplantation genetic diagnosis to reduce transmission to future offspring and further identified unmet needs for education and support for decision making.

Impact of physicians' personal discomfort and patient prognosis on discussion of fertility preservation with young cancer patients.

OBJECTIVE: This study sought to determine if physician's personal discomfort with the topic of FP and a patient's prognosis would have an impact on the likelihood of discussing FP with cancer patients. METHODS: Data from larger studies of qualitative semi-structured interviews with pediatric and adult oncologists were analyzed using grounded theory and crystallizing immersion method to examine the themes of "personal comfort" and "patient prognosis" in relation to discussion. RESULTS: Results showed that, across both physician types, the majority of respondents' personal comfort with the topic of FP was related to the likelihood of discussion. Personal discomfort manifested as: (a) lack of knowledge; (b) language/cultural barriers; (c) perception that subject of FP adds more stress to situation; (d) general uncertainty about success of FP methods. Data also indicate physicians do not feel discussions are appropriate for patients with poor prognosis. CONCLUSION: Despite the ASCO guidelines suggesting physicians should discuss FP with all patients, the majority of physicians are not following these guidelines. PRACTICE IMPLICATIONS: Improved training on recognition of such biases and communication strategies may improve the quality and frequency of such discussions. Involving the entire healthcare team in discussions may alleviate the need for physicians to have sole responsibility.

Conflict between values and technology: perceptions of preimplantation genetic diagnosis among women at increased risk for hereditary breast and ovarian cancer.

Members of families affected by hereditary cancer are often concerned about passing on risk to offspring. Preimplantation genetic diagnosis is a procedure performed to identify embryos that inherit mutations placing them at risk for hereditary conditions. Little is known about attitudes toward the use of this technology among individuals at risk for hereditary breast and ovarian cancer. We sought to determine high risk women's attitudes. This study is a qualitative examination of comments from women who participated in an online survey regarding knowledge and attitudes of preimplantation genetic diagnosis among individuals affected by hereditary breast and ovarian cancer. More than half the respondents held less favorable attitudes about the use of preimplantation genetic diagnosis for hereditary breast and ovarian cancer for both themselves and others. However, among the women who felt favorable about its usage, the majority said it became a new option for them to pursue parenthood whereas previously they had opted to not have a biological child. The high percentage of respondents who have never heard of preimplantation genetic diagnosis and who were in favor of this technology for hereditary breast and ovarian cancer indicates the need for educational campaigns to increase awareness and provide information about the procedure, access and affordability. Further research is needed to determine how this population would like this information presented to them and how best to instruct health care professionals to present this topic to women who do not know to ask about it.

Recall of and reactions to a surgeon referral letter for BRCA genetic counseling among high-risk breast cancer patients.

BACKGROUND: The oncology care setting represents an important opportunity to identify and refer women at increased risk for hereditary breast and ovarian cancer. However, little is known about the effectiveness of provider approaches to inform patients of hereditary cancer risk or patient uptake of genetic counseling (GC). This qualitative study examined the impact of a surgeon referral letter on recently diagnosed breast cancer patients' uptake of BRCA GC. METHODS: Qualitative open-ended, in-depth interviews were conducted with 26 high-risk breast cancer patients sent a referral letter for BRCA GC by their surgeon. Data were analyzed by a grounded theory approach. RESULTS: Most women (approximately 80%) recalled receiving the letter, and 62% of all (n = 16) women pursued GC. Recall of the letter did not seem to be associated with uptake of GC (P = .49, Fisher's exact test). The results highlight key areas for improvement that may help increase the impact of the letter. Half of the women in this sample believed that the letter was sent to all breast cancer patients, rather than those with specific risk factors. Few women mentioned any implications for the information obtained during GC or testing regarding their current breast cancer diagnosis or treatment. Of the women who did not attend, many perceived that dealing with the GC and testing process in the midst of a cancer diagnosis and treatment was overwhelming. Among the women who had chosen not to attend GC, most stated they would reconsider after completing their treatment. CONCLUSIONS: Patient recall of a surgeon referral letter does not seem to increase the number of high-risk women who attend GC after a breast cancer diagnosis. The letter approach in its current format does not seem to be a wholly effective means of communicating with some patients who may be overwhelmed by their cancer diagnosis or unaware that GC and testing may have implications for their current treatment decisions, possibly resulting in a missed opportunity to engage in informed decision making.

Experiences of genetic counseling for BRCA1/2 among recently diagnosed breast cancer patients: a qualitative inquiry.

For newly diagnosed breast cancer patients, BRCA1/2 genetic counseling (GC) and/or testing has the greatest potential to affect treatment choices if it occurs prior to definitive surgery. This qualitative study sought to examine recently diagnosed breast cancer patients' experiences with pretest GC (n = 9). Study results show the primary reason most women attended GC was due to a family history of cancer. Most women expressed high levels of satisfaction with timing of GC regardless of whether they were referred prior to or after definitive surgical treatment. In this study, newly diagnosed breast cancer patients, particularly those who have already completed definitive surgery, may not be fully informed about the purpose and implications of BRCA1/2 GC and/or testing for treatment decisions had they been referred prior to definitive surgery for their breast cancer diagnosis. Thus, many women felt the information provided during GC had little utility with respect to their current breast cancer diagnosis.

Oncology social workers' perceptions of barriers to discussing fertility preservation with cancer patients.

Infertility is a common result of cancer treatment; however, opportunities exist that allow patients to preserve their fertility prior to treatment. Evidence suggests health care providers, including social workers, do not consistently discuss this topic with patients. This study used a qualitative, cross-sectional design using a focus group and in-depth interviews to explore knowledge, attitudes, barriers, and behaviors related to social workers' discussion of fertility preservation with cancer patients. Factors that influence the discussion of fertility preservation among social workers include: (1) Knowledge (e.g., Fertility Preservation Resources); (2) Attitudes (e.g., Cost, Perceived Role, Comfort Level, Fertility Preservation Discussion Difficulty/Priority); (3) Barriers (e.g., Cost, Urgency to start Treatment/Time, Patient Factors, Physician Attitudes/Beliefs); (4) Behaviors; and (5) Suggestions. Results show social workers are not typically discussing fertility preservation methods with patients; however, they may be in an ideal position to facilitate the conversation between the physician and the patient. There is a strong need to develop educational interventions aimed at oncology social workers, to help facilitate discussions with patients.

Oncology nurses' perceptions of barriers to discussion of fertility preservation with patients with cancer.

Infertility is a common result of cancer treatment; however, opportunities exist for patients to preserve fertility prior to treatment. Recent evidence suggests that healthcare providers, including nurses, do not consistently discuss fertility preservation (FP) with patients. This qualitative, cross-sectional pilot study used a focus group and in-depth interviews to explore knowledge, attitudes, and practice behaviors related to nurses' discussion of FP with patients with cancer. Results indicate that only half of the nurses discuss FP methods with patients, even though most believe that having discussions with patients about fertility is part of their role. Factors associated with the discussion of FP among nurses included (a) knowledge (FP procedures, fertility institutes and clinics, resources for patients, and practice guidelines), (b) attitudes (difficulty finding facilities, time constraints, role, comfort level, ethical issues, financial considerations, and patient characteristics), and (c) behaviors (patient initiation, physician behaviors, patient characteristics, and timing). Discussion should be stimulated among nurses about the role of nurses in the FP discussion, and educational interventions and practice guidelines should be developed that are aimed at oncology nurses to help facilitate discussions with patients.

Trends in clinical practice and nurses' attitudes about fertility preservation for pediatric patients with cancer.

PURPOSE/OBJECTIVES: To examine trends in fertility preservation attitudes and behaviors of pediatric oncology nurses and evaluate their awareness of fertility preservation guidelines published in June 2006 by the American Society of Clinical Oncology (ASCO). DESIGN: Cross-sectional surveys conducted in 2005 and 2006. SETTING: Annual meetings of the Florida Association of Pediatric Tumor Programs. SAMPLE: 115 pediatric oncology nurses in 2005 and 95 nurses in 2006. METHODS: A 45-item survey was distributed to conference attendees. MAIN RESEARCH VARIABLES: Knowledge, current fertility preservation practices, and awareness of fertility preservation guidelines. FINDINGS: Nurses' attitudes about fertility preservation discussions with patients did not change during the survey period; however, the number of nurses believing that one of their duties was to discuss fertility preservation with patients decreased from 91% in 2005 to 81% in 2006. Nurses' likelihood to discuss fertility preservation with patients with specific characteristics significantly changed over time. Fertility preservation discussions were just as likely for single patients as they were for those married or recently engaged, although nurses were more likely to discuss fertility preservation with patients who had at least one child or who had a poor prognosis. Nurses' awareness of ASCO guidelines was less than 5%. CONCLUSIONS: A majority of nurses perceive that fertility preservation options should be offered to patients. However, practice and patient family barriers exist that may impede discussion. Attitudes and behaviors will be monitored with the 2006 ASCO guidelines. IMPLICATIONS FOR NURSING: Nurses play a key role in survivorship discussions for pediatric patients with cancer and their families. Increased knowledge of fertility preservation guidelines may help promote the fertility preservation concept and lead to improved dissemination and implementation of training programs that focus on current ASCO fertility preservation guidelines and address the psychosocial needs of children aged 12-16 years.

Psychosocial and behavioral impact of genetic counseling and testing.

Over a decade has passed since the clinical availability of BRCA1/2 mutation testing for Hereditary Breast and Ovarian Cancer (HBOC). The purpose of this article is to review key areas of psychosocial and behavioral research related to genetic counseling and testing for BRCA1/2 mutations. Special attention will be given to understudied issues within each of these key areas. Where appropriate, the article will also highlight the clinical and research experiences of the authors. The first area that will be reviewed is the impact of genetic testing on psychological well-being. This will be followed by a brief discussion of a practical assessment strategy for psychosocial distress in clinical settings. Next, published data on the uptake of risk management options based on genetic testing results as well as the psychosocial impact of these behaviors will be reviewed. Thirdly, research focused on understanding the decision making at various points in the genetic counseling and testing process will also be examined. Finally, the available research on genetic counseling and testing in minority communities will be presented. By recognizing and addressing the psychosocial and behavioral issues faced by patients undergoing BRCA1/2 genetic counseling and testing, researchers and providers have the potential to maximize opportunities for prevention, early detection, and healthy coping.