Body image disturbances in adolescent and young adult cancer patients confronting infertility risk and fertility preservation decisions.

PURPOSE: Body image is a major psychosocial concern for all cancer patients but can affect the adolescent and young adult (AYA) population in distinct ways. Similarly, the prospect of infertility and the fertility preservation process can create additional stress during cancer treatment. Discussions regarding infertility inherently implicate the body and its reproductive function, but downstream effects on self-perception have not been previously described. The aim of this study was to explore the experiences of AYAs as they considered their risk of infertility and options for fertility preservation (FP), specifically the ways in which this impacted body image and FP decision-making. METHODS: AYA cancer patients (n = 27) aged 12-25 years whose cancer and treatment conferred risk of infertility were recruited through electronic health record query at an NCI-Designated Comprehensive Cancer Center. Participants completed semi-structured interviews, which were recorded, transcribed, and deductively coded for themes related to information needs, knowledge of treatment effects on fertility, and reproductive concerns after cancer. Emergent, inductive themes related to body image were identified. RESULTS: Body image concerns, related to both physical appearance and body functioning emerged. Common concerns included anticipating change as it pertains to the body and its functions, physical discomfort, fear of judgment, and meeting expectations of the body. While these themes are broad in nature, they have been previously explored in relation to body image in general and their emergence in the oncofertility space provides guidance for further optimization of infertility and fertility preservation discussions. CONCLUSIONS: AYA cancer patients experience a multitude of body image related disturbances when faced with the possibility of infertility and fertility preservation. In identifying and exploring these themes, future opportunities for improving oncofertility practice and discussions among AYAs with a focus on body image positivity are called upon.

Integrative Oncology Scholars Program: A Model for Integrative Oncology Education.

OBJECTIVES: Oncology providers are often confronted by patients who use complementary or alternative therapies, but have limited knowledge or confidence on how to advise patients on appropriate use. Despite this, there are few opportunities for oncology providers to learn about complementary or alternative therapies, while at the same time there is a high demand for integrative oncology (IO) training. To address a gap in IO educational opportunities, and particularly for nonphysicians, we created the Integrative Oncology Scholars (IOS) Program. The program's goal is to train 100 IO leaders and facilitate partnerships between them and complementary practitioners. DESIGN: Four iterations of a year-long National Cancer Institute-funded educational program that combines in-person team-based learning and eLearning to teach the evidence, application, and philosophy supporting IO. SETTINGS: In-person sessions take place at the University of Michigan, and eLearning is implemented using a Canvas website (Instructure, Inc., Salt Lake City, UT). SUBJECTS: Nurses, social workers, physician assistants, psychologists, physicians, pharmacists, and physical/occupational therapists with active oncology practices. Educational intervention: Four cohorts of 25 oncology providers per year will learn the evidence base for complementary and alternative approaches to a wide number of oncology topics, including symptom control, dietary supplements commonly used by cancer patients, diet, and the utility of specific integrative approaches for common oncology side-effects such as fatigue. OUTCOME MEASURES: A mixed methods approach will be used to evaluate overall IOS Program progress and individual scholar's impact on IO research, education, and clinical endeavors. RESULTS: The first cohort of 25 IOS has been recruited and their education will begin in Summer 2018. Scholars come from 13 states and represent 23 different healthcare systems. CONCLUSIONS: The IOS Program has the potential to increase the number of trained IO providers, educators, and researchers in the United States.

Psychosocial distress screening implementation in cancer care: an analysis of adherence, responsiveness, and acceptability.

PURPOSE: The American College of Surgeons Commission on Cancer has mandated implementation of a systematic protocol for psychosocial distress screening and referral as a condition for cancer center accreditation beginning in 2015. Compliance with standards requires evidence that distress screening protocols are carried out as intended and result in appropriate referral and follow-up when indicated. The purpose of this study was to examine the fidelity of distress screening protocols at two tertiary cancer treatment centers. METHODS: A retrospective review and analysis of electronic medical records over a 12-week period examined clinic adherence to a prescribed distress screening protocol and responsiveness to patients whose scores on the National Comprehensive Cancer Network Distress Thermometer (DT) indicated clinically significant levels of distress requiring subsequent psychosocial contact. A weekly online survey assessed clinician perspectives on the acceptability of the protocol. RESULTS: Across clinics, rates of adherence to the distress screening protocol ranged from 47% to 73% of eligible patients. For patients indicating clinically significant distress (DT score ≥ 4), documentation of psychosocial contact or referral occurred, on average, 50% to 63% of the time, and was more likely to occur at one of two participating institutions when DT scores were high (DT score of 8 to 10). Clinician assessments of the protocol's utility in addressing patient concerns and responding to patient needs were generally positive. CONCLUSION: Systematic tracking of distress screening protocols is needed to demonstrate compliance with new standards of care and to demonstrate how well institutions are responding to their clinical obligation to address cancer patients' emotional and psychosocial needs.

ExCEL in Social Work: Excellence in Cancer Education & Leadership: An Oncology Social Work Response to the 2008 Institute of Medicine Report.

ExCEL in Social Work: Excellence in Cancer Education & Leadership was a multi-year National Cancer Institute (NCI)-funded grant for the development and implementation of an innovative educational program for oncology social workers. The program's curriculum focused upon six core competencies of psychosocial-spiritual support necessary to meet the standard of care recommended by the 2008 Institute of Medicine (IOM) Report: Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. The curriculum was delivered through a collaborative partnership between the City of Hope National Medical Center and the two leading professional organizations devoted exclusively to representing oncology social workers--the Association of Oncology Social Work and the Association of Pediatric Oncology Social Workers. Initial findings support the feasibility and acceptability of this tailored leadership skills-building program for participating oncology social workers.

Expanding the NCCN guidelines for distress management: a model of barriers to the use of coping resources.

Cancer-related distress impacts quality of care, resource use, and patient outcomes. Patients are increasingly screened for distress, yet many do not receive coping resources and psychosocial support services that may help to reduce their distress. Distress screening must be paired with attention to the different phases of the distress and coping process, with emphasis on barriers and facilitators of cancer patients' use of coping resources. This paper offers a conceptual model illustrating key pathways and modifying factors of distress and use of coping resources among cancer patients, and potential roles for cancer care providers and institutions in facilitating effective coping and distress reduction. Building on a review of relevant empirical and theoretical literature, we developed a conceptual model that integrates concepts from Stress and Coping Theory into the National Comprehensive Cancer Network's guidelines for Distress Management. We found that barriers and facilitating factors that may inhibit receipt of coping resources and services to reduce cancer-related distress include health and cancer beliefs, accessibility and acceptability, the role of caregivers in cancer treatment, coordination of care, and the quality of patient-provider relationships. Herein, we highlight largely modifable factors that can infuence the successful uptake of coping resources and services to reduce distress among cancer patients. We conclude with recommendations for how cancer care providers and systems can better identify and address barriers to the use of distress reduction resources and support services.

The state of psychosocial services in cancer care in the United States.

OBJECTIVE: In 2009, the APOS commissioned a survey of its members and attendees of the annual meetings in 2008 and 2009. The goal of the survey was to assess the scope of psychosocial support services for cancer patients in the USA. METHODS: Two hundred thirty-three individuals (27% response rate) completed the survey, which included questions assessing the extent to which respondents' institutions provided informational and psychosocial support services and conducted screening for psychosocial distress. RESULTS: Respondents were primarily psychologists, although oncologists, nurses, social workers, and others were represented, as well. A broad array of informational and support services were endorsed as being provided to cancer patients, both at no charge or for a fee. Respondents identified social workers as the professionals most often providing psychosocial services to cancer patients. Respondents also indicated that most psychosocial services have not been tailored to fit a culturally diverse population. Furthermore, most of the organizations represented in the survey do not routinely screen cancer patients for psychosocial distress. CONCLUSIONS: A broad range of psychosocial services are provided in cancer treatment settings; however, despite National Comprehensive Cancer Network and Institute of Medicine recommendations, routine screening for distress is not offered in a majority of cancer care organizations. Despite the racial, ethnic, cultural, and linguistic diversity of the US population, most organizations have not adapted their educational materials nor their psychosocial services to meet the needs of a diverse patient population.

Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients.

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.

Now what? Toward an integrated research and practice agenda in distress screening.

Significant gains have been made in the detection and treatment of cancer, contributing to increased survival, but a cancer diagnosis and treatment may be accompanied by physical and psychosocial after-effects. Distress screening has been championed as a mechanism to identify patients with high levels of psychosocial morbidity for subsequent assessment and psychosocial care delivery. However, implementation of distress screening has been variable, in scope and in the consistency and quality of metrics and methods used. This capstone article identifies challenges in the measurement and implementation of distress screening and examines future opportunities for research and implementation.

Psychosocial care of adolescent and young adult patients with cancer and survivors.

The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group--the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support interventions for AYAs with cancer and other life-threatening or chronic diseases, particularly the positive effects of peer support, technology-based interventions, and skill-based interventions. The article concludes with recommendations for clinical care that are intended to promote the ability of AYAs to cope with cancer.

Information and service needs for young adult cancer survivors.

BACKGROUND: The intent of this study was to examine supportive care needs and preferences among young adult cancer survivors. METHOD: Eight hundred seventy-nine young adults aged 18-39 years at time of study and diagnosed with cancer between the ages of 15-35 completed an online survey. Questions assessed the extent to which subjects had utilized various information and supportive care services and/or expressed a desire to use those services either now or in the past. RESULTS: Upwards of 60% of respondents expressed a desire or need for age-appropriate cancer information, information about diet, exercise, nutrition, complementary and alternative health services, infertility information, mental health counseling, and camp or retreat programs for young adults. In most cases, more than 50% of respondents indicated that their needs for information and services have been unmet. In addition, unmet needs were more likely reported by respondents who were younger at age of diagnosis, of poor physical health status, and less likely to be advanced in work, school, or a committed/marital relationship. Other significant differences in unmet need were observed across sociodemographic and health status variables. CONCLUSION: Findings suggest a need to enhance the provision of supportive care services to adolescent and young adult cancer survivors along a continuum of care, from diagnosis through treatment and on to off-treatment survivorship.