The primary care provider (PCP)-cancer specialist relationship: A systematic review and mixed-methods meta-synthesis.

Although they are critical to models of coordinated care, the relationship and communication between primary care providers (PCPs) and cancer specialists throughout the cancer continuum are poorly understood. By using predefined search terms, the authors conducted a systematic review of the literature in 3 databases to examine the relationship and communication between PCPs and cancer specialists. Among 301 articles identified, 35 met all inclusion criteria and were reviewed in-depth. Findings from qualitative, quantitative, and disaggregated mixed-methods studies were integrated using meta-synthesis. Six themes were identified and incorporated into a preliminary conceptual model of the PCP-cancer specialist relationship: 1) poor and delayed communication between PCPs and cancer specialists, 2) cancer specialists' endorsement of a specialist-based model of care, 3) PCPs' belief that they play an important role in the cancer continuum, 4) PCPs' willingness to participate in the cancer continuum, 5) cancer specialists' and PCPs' uncertainty regarding the PCP's oncology knowledge/experience, and 6) discrepancies between PCPs and cancer specialists regarding roles. These data indicate a pervasive need for improved communication, delineation, and coordination of responsibilities between PCPs and cancer specialists. Future interventions aimed at these deficiencies may improve patient and physician satisfaction and cancer care coordination. CA Cancer J Clin 2017;67:156-169. © 2016 American Cancer Society.

Exploring patient and provider perspectives on the intersection between fertility, genetics, and family building.

OBJECTIVE: Adolescent and young adult (AYA) cancer patients have distinct medical and psychosocial needs and fertility is a key concern. Early age of onset is a risk factor for hereditary cancer and AYAs are more likely to experience reduced fertility. This has implications for future family building decisions and fertility preservation (FP) and genetic testing/counseling (GT/GC) education. METHODS: Patients diagnosed with cancer between the ages of 18 and 39 and health care providers (HCPs) who treat AYA cancer patients were recruited from a single institution. Qualitative interviews explored AYA patients' and HCPs' concerns regarding their experiences discussing genetics and FP. RESULTS: The majority of patients (n = 17) were female (59%), and the majority of HCPs (n = 18) were male (67%). Overall, participants had differing perceptions of FP and GT/GC-related information provided during the clinical visit. Patients indicated initiating the conversation about FP and did not recall HCPs discussing GT/GC with them. HCPs indicated patients were often overwhelmed with too much information and comprehension of this discussion is limited. HCPs also felt patients' emotions/beliefs determined their information-seeking behavior specific to FP and GT/GC. Participants felt educational materials should be developed and delivered in a video format depicting a patient-provider interaction or patient testimonial. CONCLUSION: AYA patients are often overwhelmed by a cancer diagnosis; the complexity/volume of information regarding FP and GT/GC may hinder understanding and decision-making about family building. Educational materials that help patients understand what questions to ask HCPs about FP and GT/GC should be developed to improve knowledge, psychosocial well-being, and future family building decisions.

Provider perceptions' of a patient navigator for adolescents and young adults with cancer.

PURPOSE: Healthcare providers (HCPs) and other staff at a comprehensive Cancer Center were interviewed on how to best implement a patient navigator position when working with adolescents and young adults (AYA) with cancer. Research objectives included assessing staff perceptions of (a) barriers to optimal care for AYA, (b) roles and responsibilities for a patient navigator, and (c) training needed for future patient navigators. METHODS: Semi-structured interviews were conducted with 17 staff members providing care to AYA. Verbatim transcripts were hand-coded using inductive content analysis. RESULTS: Roles and responsibilities of a patient navigator were described as needing to coordinate services, be knowledgeable of resources inside and outside the Cancer Center, provide emotional support, advocate for AYA, assist with financial and insurance issues, and serving as the first point of contact. CONCLUSIONS: Staff serving AYA reported the desired roles and training they wished a patient navigator to possess. This study contributes to the literature by conducting stakeholder assessment of the goals and roles of an AYA patient navigator (PN). PN positions should be adapted to the workflow and ethos of the institution.

Addressing cancer patient and caregiver role transitions during home hospice nursing care.

OBJECTIVE: Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. METHOD: A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits. RESULT: Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance. SIGNIFICANCE OF RESULTS: Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.

Evaluation of Promotional Materials To Promote Low-Dose Computed Tomography (LDCT) Screening to High-Risk Consumers and Health Care Providers.

Low-dose computed tomography (LDCT) screening is a promising screening modality for increasing the detection rate of early stage lung cancers among high-risk individuals. Despite being recommended by the US Preventative Services Task Force, uptake of LDCT remains low. The objective of the current study was to gather feedback from high-risk consumers and health care providers on LDCT promotional materials. Focus group discussions were conducted with high-risk individuals (8 focus groups; N = 38) and primary care providers (9 focus groups; N = 23). Participants reviewed existing LDCT promotional materials to assess their perceptions of media materials created to publicize LDCT. Data were analyzed using the constant comparative method. Several key themes emerged from focus groups that can be used to inform development of future LDCT promotional materials. High-risk (HR) participants expressed greater receptivity for promotional materials that did not further stigmatize lung cancer and/or smoking and expressed preferences for materials that clearly outlined the risks/benefits of screening. Primary care providers (PCPs) offered suggestions to facilitate the referral process such as diagnostic codes and requested a design that clearly outlined eligibility criteria. A clear and thorough explanation of LDCT eligibility, cost, harms, and benefits was of chief importance for both PCP and HR audiences. Given that PCPs and HR audiences are not well informed on the specifics of LDCT screening eligibility and insurance coverage, creating provider and patient education opportunities will aid in shared decision-making opportunities. Promotional materials that meet the needs of the target audience are needed to facilitate discussions of risks/benefits of screening with HR individuals.

Sexual and Gender Minority Issues Across NCCN Guidelines: Results From a National Survey.

Background: The lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ) population is at higher risk for multiple types of cancers compared with the heterosexual population. Expert NCCN panels lead the nation in establishing clinical practice guidelines addressing cancer prevention, early detection, and treatment of cancer sites and populations. Given the emergence of new data identifying cancer disparities in the LGBTQ population, this study examined the inclusion of medical and/or psychosocial criteria unique to LGBTQ within NCCN Guidelines. Methods: Data were collected for 32 of the 50 NCCN Guidelines. Results: NCCN panel members reported that neither sexual orientation (84%) nor gender identity (94%) were relevant to the focus of their guidelines; 77% responded that their panels currently do not address LGBTQ issues, with no plans to address them in the future. Conclusions: Greater consideration should be given to the needs of LGBTQ patients across the cancer care continuum. Given that research concerning LGBTQ and cancer is in its infancy, additional empirical and evidence-based data are needed to bolster further integration of LGBTQ-specific criteria into clinical care guidelines.

Barriers to cancer screening among Orthodox Jewish women.

The increased risk of genetic cancer mutations for Ashkenazi Jews is well known. However, little is known about the cancer-related health behaviors of a subset of Ashkenazi Jews, Orthodox Jews, who are a very religious and insular group. This study partnered with Rabbinical leadership and community members in an Orthodox Jewish community to investigate barriers to cancer screening in this community. Orthodox Jewish women were recruited to participate in focus groups designed to elicit their perspectives on barriers to cancer screening. A total of five focus groups were conducted, consisting of 3-5 members per group, stratified by age and family history of cancer. Focus groups were audio recorded and transcribed. Transcripts were coded using conventional content analysis. The resulting themes identified as barriers to cancer screening were: preservation of hidden miracles, fate, cost, competing priorities, lack of culturally relevant programming, lack of information, and fear. These results provide a unique perspective on barriers to cancer screening in a high risk but understudied population. Findings from this study may serve to inform culturally appropriate cancer education programs to overcome barriers to screening in this and other similar communities.

Development of a question prompt list as a communication intervention to reduce racial disparities in cancer treatment.

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 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.

Older Adults' Experiences in a Web-Based Intervention for Loneliness.

Background: Older adults may be vulnerable to loneliness due to natural and age-related transitions. Lonely older adults are at an increased risk of adverse health outcomes due to their loneliness, including cognitive decline, cardiovascular disease, and mortality. Objective: The purpose of this study was to explore the experiences of vulnerable older adults in a web-based loneliness intervention. Methods: Older adult participants in a web-based loneliness intervention (n = 24) participated in semi-structured interviews eliciting feedback about their experience in the program and perceived outcomes. Participants' responses were analyzed using qualitative content analysis. Results: Participants reported fewer negative perceptions of their social skills and future social interactions, gaining new social skills, improved relationships, and increased confidence to initiate and maintain social contact. Conclusions: Findings suggest the efficacy of combining a web-based loneliness intervention with cognitive behavioral therapy, and provide implications for future web-based interventions for older adult populations.

Robotic Pet Use Among Community-Dwelling Older Adults.

OBJECTIVE: The primary purpose of this study was to explore the efficacy of robotic pets in alleviating loneliness for older adults. METHOD: Self-reported lonely individuals with AARP Medicare Supplement plans insured by UnitedHealthcare who participated in a program with a robotic pet (n = 20) were recruited to participate in semi-structured interviews. Participants were asked to provide feedback about their experiences interacting with a robotic pet, their perceptions about the potential impact on loneliness, and recommendations for improving the program. Interviews were audio-recorded and transcribed verbatim. Participants' responses were analyzed using qualitative content analysis. Constant comparison and consensus-gaining processes were used to develop categories that later formed representative themes. RESULTS: Seven themes emerged from analysis: Openness to Adoption of Robotic Pet, Reactions to Pet and its Attributes, Integration of Pet in Daily Life, Strategic Utilization and Forging New Connections, Deriving Comfort and Camaraderie, Advice for Future Users, and Recommendations for Enhancing Ownership Experience. Participants living alone, with fewer social connections and less active lifestyles, derived the most benefit from interacting with their pets. Common responses to pets included cuddling, petting, grooming, and sleeping with them. Some shared or loaned their pets, while others refused to loan their pets to interested peers. Most reported showing their pets to others, which helped some facilitate communication and social connections. CONCLUSION: Robotic pets may be an effective solution for alleviating loneliness in older adults, especially among those who live alone, have fewer social connections, and live less active lifestyles.

Older Adult Caregivers' Experiences in an Online, Interactive Mindfulness Intervention.

BACKGROUND: While today's older adults experience longevity, they often manage several chronic conditions and increasingly serve as informal caregivers for aging parents, children with life-long disabilities, and spouses. Older adult caregivers managing personal chronic illness often experience significant psychosocial hardships. OBJECTIVE: The primary purpose of this study was to explore the experiences of older adult caregivers in an online, interactive mindfulness intervention. METHODS: Self-reported older caregivers who participated in an online-based mindfulness program (n = 20) were recruited for semi-structured interviews. Participants were asked to provide feedback about any previous experience with mindfulness and/or meditation, hopes or goals held prior to the start of the program, desired expectations, motivation for joining, impressions of sessions, most beneficial topics, potential application of content, and any perceived effects. Participants' responses were analyzed using qualitative content analysis. RESULTS: Five themes emerged from the analysis: Managing the Comprehensive Effects of Caregiving, Openness to Meditation and Mindfulness, Course Engagement and Incremental Growth, Building Rapport through Shared Experiences, and Ongoing Application and Opportunities for Refinement. Participants reported both short-term post-exercise benefits such as increased calm, relaxation, and stress relief, as well as long-term positive outcomes. Notably, participants found the program's unique interactive feature to be particularly beneficial as a form of perceived social support. CONCLUSIONS: Caregivers for older adults may derive benefit and potentially experience reduced subjective caregiver burden as a result of participating in a Mindfulness-Based Stress Reduction (MBSR) program, particularly when the program is augmented with a self-compassion approach and perceived social support.

Clinical communication preferences in cystic fibrosis and strategies to optimize care.

BACKGROUND: The importance of optimizing communication between clinicians and individuals and families living with cystic fibrosis (CF) about daily care, adherence, and related psychosocial concerns is well documented. The purpose of this study was to gain an understanding of interpersonal communication experiences and preferences among individuals and families living with CF as they engage with the clinical team. The study also aimed to reveal opportunities for enhancing future interpersonal communication practices. METHODS: Five U.S. CF care centers participated in the following activities: (a) On-site observation of clinic interactions during outpatient visits; (b) On-site 1:1 interviews with individuals living with CF, their family members, and CF clinicians; (d) Focus groups conducted in person with CF care team members; (d) Focus groups conducted virtually with adults and family members with CF. Content analysis of transcripts and constant comparative methods were used to identify emergent themes. RESULTS: Four themes related to participants' needs and preferences for clinic interactions emerged during analysis: (a) eliciting psychosocial concerns, (b) addressing childhood development and transitions, (c) negotiating agendas and sharing decisions, and (d) educating to enhance CF conversations. CONCLUSION: CF clinicians and individuals and families living with CF expressed the need for resources and training to engage in better conversations with each other. Participants identified areas of high priority, including working together around social, psychological, and economic challenges, preparation for transition to adulthood, and sustaining daily care. Findings point to the value of developing advanced communication skills that foster trust-building, negotiating agendas, active listening, and collaborative goal-setting.

Disclosure of diagnosis to at-risk relatives by individuals diagnosed with hypertrophic cardiomyopathy (HCM).

Hypertrophic cardiomyopathy (HCM) affects 1 in 200 people and is the most common cause of sudden cardiac death in the young. Given that HCM usually is inherited in an autosomal dominant pattern, an HCM diagnosis has implications for biologically related family members. The purpose of this study was to explore probands' disclosure of an HCM diagnosis with these biologically related, at-risk family members. An online survey was posted on the website of the Hypertrophic Cardiomyopathy Association (HCMA), an advocacy and support group for HCM patients and their families. Descriptive statistics were used to summarize responses to closed-ended questions and demographics. Using an iterative content analysis with the constant comparison approach, we analyzed the responses to open-ended questions inquiring about the nature and role of disclosure communication with at-risk relatives. A total of 315 individuals with a self-reported diagnosis of HCM completed the survey. Most participants (98%) disclosed their diagnosis to at-risk family members. Sixty-four percent disclosed to family members less than 1 year after diagnosis. Participants also disclosed potential treatment options (74.6%) and the emotional impact of the diagnosis (39%). HCM specialists were ranked by participants as being the most helping in explaining the benefit of genetic counseling, while genetic counselor were ranked as least helpful. Emerging themes address the need to encourage screening and genetic testing among family members and to identify external educational resources for use during the disclosure process. Importantly, our study found that the process of disclosure varies based on individuals' experiences and family communication dynamics. However, almost all participants expressed the importance of disclosing the diagnosis of HCM as well as the importance of being screened and expressed needs for additional support during the disclosure process.

Fertility Counseling for Transgender AYAs.

Transgender adolescents and young adults may wish to use cross-sex hormones as means to achieve identity goals. However, these hormones may impair future reproductive functioning. This case explores the complexities related to clinical decision-making concerning fertility and the use of cross-sex hormones in adolescent and young adult transgender populations.

Culturally Competent Care for Sexual and Gender Minority Patients at National Cancer Institute-Designated Comprehensive Cancer Centers.

PURPOSE: This study sought to identify the policies and guidelines regarding culturally competent care of sexual and gender minority (SGM) cancer patients and survivors at National Cancer Institute (NCI)-Designated Comprehensive Cancer Centers. METHODS: This study used an in-depth interview qualitative approach. Semistructured interviews were conducted via telephone with representatives from 21 of the 45 NCI-Designated Comprehensive Cancer Centers in 2015. Verbatim transcripts were created from the audiotapes for content analysis. RESULTS: Two main themes were identified as follows: (1) patient-focused experiences and support and (2) organization-focused development activities. Most of the cancer centers in this study had an advisory committee to assist with SGM policies and guidelines. Despite the existence of these committees, the majority of centers did not have explicit policies, guidelines, or routine practices addressing the following issues: the collection and integration of sexual orientation and gender identity information in the medical record, gender-neutral language on patient forms, patient educational materials with SGM-specific health concerns, SGM-specific support for cancer survivors, or required SGM-specific cultural competency trainings for medical and nonmedical staff. CONCLUSION: In general, the cancer centers in this study lacked institutional policies, guidelines, and practices focused on patient-centered cancer care for SGM populations. Coordinated efforts are needed to systemically improve patient-centered cancer care for these populations.

Childbearing across borders: Fertility and parenthood attitudes and decisions among breast cancer survivors in USA and Portugal.

OBJECTIVE: To compare fertility and childbearing attitudes and decisions of Portuguese and American female reproductive aged breast cancer survivors. METHODS: This was a cross-sectional study of 102 young breast cancer survivors (59 from Portugal and 43 from USA). Demographic, clinical and reproductive information were collected. Fertility and parenthood attitudes and decisions were assessed through a self-report questionnaire devised specifically for the study. RESULTS: Fertility issues became very important after the diagnosis for most of the women (51%). Few differences existed between USA and Portuguese participants. USA participants were more likely to undergo FP (23% USA vs Portugal 5%, p = 0.01). Portuguese women were more dissatisfied with their physician's explanations about fertility (Portugal: 23% vs USA: 3%; p = 0.01). Overall, women relied on their oncologist for fertility information (70%); only Portuguese women discussed fertility with their family medicine physician (11%). Overall, women showed positive attitudes towards motherhood. Portuguese women were more likely to report their partners placed more value on the family after their illness (Portuguese agree: 55% vs USA agree: 14%; p < 0.001). CONCLUSIONS: Fertility and childbearing after breast cancer are important issues regardless of culture, background or country's heath care system. Overall, few differences across the USA and Portuguese samples were found on fertility and childbearing attitudes and decisions.

New Promising Strategies in Oncofertility.

INTRODUCTION: Approximately 70,000 adolescent and young adults (AYA) are diagnosed with cancer each year. While advancements in treatment have led to improved prognosis and survival for patients, these same treatments can adversely affect AYA reproductive capacity. Localized treatments such as surgery and radiation therapy may affect fertility by removing or damaging reproductive organs, and systemic therapies such as chemotherapy can be toxic to gonads, (ovaries and testicles), thus affecting fertility and/or endocrine function. This can be traumatic for AYA with cancer as survivors often express desire to have genetic children and report feelings of regret or depression as a result of infertility caused by cancer treatments. AREAS COVERED: Emerging technologies in the field of assisted reproductive technology offer new promise for preserving the reproductive capacity of AYA cancer patients prior to treatment as well as providing alternatives for survivors. The following review revisits contemporary approaches to fertility preservation as well newly developing technologies. EXPERT COMMENTARY: There are several advances in ART that hold promise for patients and survivors. However there are challenges that inhibit uptake including poor communication between providers and patients about risks and fertility preservation options; high costs; and lack of insurance coverage for fertility preservation services.

Adolescent and Young Adult Patients with Cancer: Perceptions of Care.

BACKGROUND: Adolescent and young adults with cancer (AYACs) face unique medical, psychosocial, and supportive care needs. The purpose of this study was to identify AYACs perceptions and expectations of cancer care services on and off treatment. METHODS: Semistructured interviews were conducted with 23 AYACs aged 19-38 years (13 on and 10 off treatment), who were receiving care at a comprehensive cancer center. Verbatim transcripts were created from audiotaped interviews and hand coded using inductive content analysis methodology. RESULTS: Perceptions of optimal care were reported by AYACs through two main themes as follows: perceived barriers and facilitators during treatment. Within each main theme were three subthemes, including perceived facilitators reported as the provision of social support, the website and patient portal, and the educational information provided by the cancer center. Younger female AYACs (age 19-31) on active treatment reported perceived barriers to optimal care related to the management of physical and mental health symptoms, while older patients (age 32 and up) on active treatment endorsed a fear of cancer returning. The third perceived barrier equally endorsed by patients both on and off treatment and across age ranges included limited assistance with financial issues. CONCLUSIONS: AYACs reported perceived barriers and facilitators to optimal care. Implications for these findings are discussed in the context of the importance of adding a patient navigator to the AYACs care team.

Proceedings of the Working Group Session on Fertility Preservation for Individuals with Gender and Sex Diversity.

Children and adolescents with gender and sex diversity include (1) gender-nonconforming and transgender individuals for whom gender identity or expression are incongruent with birth-assigned sex (heretofore, transgender) and (2) individuals who have differences in sex development (DSD). Although these are largely disparate groups, there is overlap in the medical expertise necessary to care for individuals with both gender and sex diversity. In addition, both groups face potential infertility or sterility as a result of desired medical and surgical therapies. The Ann & Robert H. Lurie Children's Hospital of Chicago (Lurie Children's) gender and sex development program (GSDP) provides specialized multidisciplinary care for both transgender and DSD patients. In response to patient concerns that recommended medical treatments have the potential to affect fertility, the Lurie Children's GSDP team partnered with experts from the Oncofertility Consortium at Northwestern University to expand fertility preservation options to gender and sex diverse youth. This article summarizes the results of a meeting of experts across this field at the annual Oncofertility Consortium conference with thoughts on next steps toward a unified protocol for this patient group.