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These NCCN Guidelines for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. All patients experience some level of distress associated with a cancer diagnosis and the effects of the disease and its treatment regardless of the stage of disease. Clinically significant levels of distress occur in a subset of patients, and identification and treatment of distress are of utmost importance. The NCCN Distress Management Panel meets at least annually to review comments from reviewers within their institutions, examine relevant new data from publications and abstracts, and reevaluate and update their recommendations. These NCCN Guidelines Insights describe updates to the NCCN Distress Thermometer (DT) and Problem List, and to the treatment algorithms for patients with trauma- and stressor-related disorders.

Mobile health interventions can improve patient care. We developed the Digital Supportive Care Awareness and Navigation (D-SCAN) application (app) to facilitate symptom monitoring and use/awareness of cancer supportive care resources. This study tested feasibility, usability/satisfaction, and preliminary efficacy of D-SCAN.We randomized 50 patients with advanced cancer to receive the D-SCAN intervention or usual care; 10 caregivers also received D-SCAN. The primary feasibility outcome was determined by weekly symptom survey completion and end of study procedures. We assessed secondary outcomes including usability/satisfaction, awareness/use of supportive care resources, patient activation, and quality of life via various questionnaires including the Net Promoter Score (NPS), Patient Activation Measure (PAM-13), Functional Assessment of Cancer Therapy-General (FACT-G), and Caregiver Oncology Quality of Life (CarGOQOL) questionnaire.Seventy-six percent of intervention patients met feasibility criteria, exceeding our pre-determined threshold of 75%. Usability/satisfaction by NPS was high, at 14.3% and 12.5% for patients and caregivers, respectively. Intervention patient and caregiver resource awareness increased by a mean of 3.7 (p = 0.27) and 4.1 items, respectively. Supportive care resource utilization increased by a mean of 0.8 items for intervention patients (p = 0.70) and 0.6 for caregivers. PAM-13 increased by a mean of 1.6 for intervention patients (p = 0.65). FACT-G increased by a mean of 1.1 for intervention patients (p = 0.91), and CarGOQoL increased by a mean of 2.2 (p = 0.41).D-SCAN is a feasible, usable, and satisfactory intervention for augmenting patient and caregiver supportive care. Further testing is necessary to formally assess D-SCAN's efficacy and impact on patients and caregivers.NCT03628794. Registered on August 14th, 2018.

BACKGROUND: Infertility is a common late effect for cancer survivors. Whereas assisted reproductive technology has made it possible for survivors to take steps to preserve fertility before starting treatment, only a minority of patients proceed with preservation. Patient-, provider-, health system-, and societal-level barriers to fertility preservation (FP) exist. Oncofertility patient navigation is a valuable resource for addressing FP barriers. OBJECTIVES: To highlight the critical role of oncofertility patient navigation in addressing barriers to FP within an academic oncofertility program. METHODS: The role of the oncofertility patient navigator in reducing FP barriers, promoting informed decision-making, and ensuring program sustainability is described. Program metrics illustrating the impact of oncofertility patient navigation on referrals for FP counseling and access to FP in the last year also are provided. DISCUSSION: The oncofertility program at our academic adult and pediatric medical centers aims to facilitate rapid referral to fertility counseling and preservation services for postpubertal cancer patients. The patient navigator is integral to the success of the program. The navigator ensures that patients are: (1) well-informed about the potential impact of cancer on fertility and FP options, (2) aware of available resources (eg, financial) for pursuing FP, (3) able to access FP services if desired, and (4) well supported in making an informed FP decision. The inclusion of the patient navigator has led to an almost 2-fold increase in referrals for FP counseling in the past year over the historic annual average. CONCLUSIONS: Our institution’s oncofertility program, with patient navigation at the core, provides a potential model for increasing patient access to oncofertility care and promoting program sustainability. Oncofertility patient navigation is a valuable resource for providing patients and families with education and support regarding FP decision-making, as well as addressing the multilevel barriers to FP.

This Longitudinal patient navigation Matrix Model was developed to overcome barriers across the cancer care continuum by offering prepatients, patients, and their families with support services. The extraordinary heterogeneity of patient needs during cancer screening, risk assessment, treatment, and survivorship as well as the vast heterogeneity of oncology care settings make it nearly impossible to follow a static navigation model. Our model of patient cancer navigation is unique as it enhances the traditional model by being highly adaptable based on both patient and family needs and scalable based on institutional needs and resources (eg, clinical volumes, financial resources, and community‐based resources). This relatively new operational model for system‐wide and systematic navigation incorporates a carefully cultivated supportive care program that evolved over the last decade from a bottom up approach that identified patient and family needs and developed appropriate resources. A core component of this model includes shifting away from department‐centric operations. This model does not require a patient to opt in or independently be able to report their needs or ask for services—it is an opt out model. The multidisciplinary “cross‐training” model can also facilitate reimbursement and sustainability by clarifying the differentiating actions that define navigation services: identification of barriers to quality care and specific actions taken to overcome those barriers, across the full continue of cancer care from community engagement to survivorship or end‐of‐life care., Patient navigation aims to work at both the community level and the health system or clinic level. In this article, we describe the process of development and implementation of a model of a longitudinal navigation program that is a “to and through model” where navigators are responsible for identifying prepatient, patient, provider, community, and system barriers that compromise the seamless delivery of cancer care across the full cancer continuum and contribute to disparities in cancer incidence, morbidity, and mortality.

The first NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for Distress Management were published in 1999. Since then, a number of other organizations have advocated for distress screening. Previous surveys of distress screening showed modest progress in implementation of the NCCN Guidelines for Distress Management by NCCN Member Institutions (MIs); this review examined whether further progress has been made. Representatives appointed to the NCCN Distress Management Panel or their designee were asked to complete an online survey in the summer of 2018. The survey was developed based on similar surveys performed in 2005 and 2012 and a survey of psychosocial staffing conducted in NCCN MIs in 2012. New items solicited details about triaging, rescreening, formal screening protocols, and tracking of distressed patients. The survey was completed by representatives from 23 of 27 NCCN MIs (85%). Among the responding institutions, 20 (87%) currently conduct routine screening for distress and 3 are piloting routine screening. All respondents reported use of a self-report measure to screen for distress, with the Distress Thermometer most often used. A total of 70% of respondents rescreen patients for distress and 83% reported having a formal distress screening protocol in place. Once triaged, 65% of institutions who routinely screen for distress track clinical contacts and referrals; 70% track rates of adherence to screening protocols. Findings suggest wide acceptance and implementation of the NCCN Guidelines. Most respondents reported the existence of a formal distress screening protocol, with routine tracking of clinical contacts and referrals and rates of protocol adherence. Clinical experience and the American College of Surgeons Commission on Cancer accreditation standard for cancer centers appear to have resulted in greater adoption and implementation of the guidelines, but considerable opportunities for improvement remain.

Past studies indicate that90% of breast cancer survivors taking adjuvant endocrine therapy (AET) experience menopausal symptoms including sexual problems (eg, vaginal dryness, dyspareunia); however, research examining the impact of these problems on quality-of-life is limited. This cross-sectional study examined (1) the impact of sexual problems and self-efficacy for coping with sexual problems (sexual self-efficacy) on quality-of-life (ie, psychosocial quality-of-life and sexual satisfaction), and (2) partner status as a moderator of these relationships.Postmenopausal breast cancer survivors taking AET completed measures of sexual problems (Menopause-Specific Quality-of-Life [MENQOL] sexual subscale], sexual self-efficacy, psychosocial quality-of-life (MENQOL psychosocial subscale), and sexual satisfaction (Functional Assessment of Cancer Therapy-General item).Bivariate analyses showed that women reporting greater sexual problems and lower sexual self-efficacy had poorer quality-of-life and less sexual satisfaction (all P-values 0.05). Partner status moderated the relationship between sexual problems and psychosocial quality-of-life (P = 0.02); at high levels of sexual problems, unpartnered women experienced poorer psychosocial quality-of-life than partnered women. Partner status also moderated the relationship between self-efficacy and psychosocial quality-of-life (P = 0.01). Self-efficacy was unrelated to psychosocial quality-of-life for partnered women; for unpartnered women, low self-efficacy was associated with poorer quality-of-life. Partner status did not moderate the relationships between sexual problems or self-efficacy with sexual satisfaction.Greater sexual problems and lower sexual self-efficacy were associated with poorer psychosocial quality-of-life and sexual satisfaction among postmenopausal breast cancer survivors taking AET. Interventions to address sexual problems and sexual self-efficacy, particularly among unpartnered women, may be beneficial for improving the well-being of postmenopausal breast cancer survivors on AET.

Cancer patients' sources of distress are often unaddressed, and patient-reported distress data could be utilized to identify those with unmet and impending care needs. We explored the association between moderate/severe distress and healthcare utilization in a large sample of non-small cell lung cancer (NSCLC) and non-colorectal gastrointestinal cancer patients.Adult patients treated between July 2013 and March 2019. Data from the NCCN Distress Thermometer (DT) and the accompanying "Problem List" were extracted from the EHR. A DT score of ≥ 4 indicates "actionable distress." Statistical analysis was performed using descriptive analysis for patient characteristics, clinical outcomes, and sources of distress. Generalized linear mixed models were fit to determine the relationship between distress and healthcare utilization (hospitalization, emergency department (ED) visit, or both).The ten most frequently reported problems were from the Physical and Emotional domains of the Problem List. Distress was mostly related to physical symptoms (pain, fatigue) and emotional issues (worry, fears, sadness, nervousness). Patients with actionable distress generally reported more problems across all their visits. Actionable distress was associated with higher odds of the composite outcome measure of hospitalization or visiting the ED, within both the next 3 months (OR = 1.37; 95% CI = 1.19, 1.58; p 0.001) and 6 months (OR = 1.19; 95% CI = 1.03, 1.37; p = 0.019).Patients with significant distress had marked utilization of ED and inpatient services. DT scores are a source of untapped data in the EHR that can highlight patients in need of intervention, including palliative care and cancer support services.

Breast cancer survivors with type 2 diabetes are at high risk for cancer recurrence, serious health complications, more severe symptoms, psychological distress, and premature death relative to breast cancer survivors without diabetes. Maintaining glycemic control is critical for decreasing symptoms and preventing serious health problems. Many breast cancer survivors with type 2 diabetes have difficulty maintaining diabetes self-management behaviors and achieving glycemic control. Both cancer and diabetes-related symptoms (e.g., physical symptoms and psychological distress) are often barriers to engaging in diabetes self-management strategies. This study evaluates a novel diabetes coping skills training (DCST) intervention for improving breast cancer survivors' abilities to manage symptoms and adhere to recommended diabetes self-management behaviors. The telephone-based DCST protocol integrates three key theory-based strategies: coping skills training for managing symptoms, adherence skills training, and healthy lifestyle skills training. A randomized clinical trial will test the DCST intervention plus diabetes education by comparing it to diabetes education alone. Symptoms, distress, diabetes self-management behaviors, and self-efficacy will be assessed at baseline and 3, 6, and 12 months. Glycosylated hemoglobin (HbA1c) will be assessed at baseline, 6, and 12 months. This study addresses a critical gap in the care of breast cancer survivors by evaluating a novel behavioral intervention to improve the management of symptoms, adherence, and glycemic control in breast cancer survivors with type 2 diabetes. Special considerations for this medically underserved population are also provided. The findings of this study could lead to significant improvements in clinical care and beneficial outcomes for breast cancer survivors. Trials registration: ClinicalTrials.gov , NCT02970344 , registered 11/22/2016.

Given the high prevalence (30–35%) of psychosocial and psychiatric morbidity amongst cancer patients in any phase of the disease trajectory, screening for emotional problems and disorders has become mandatory in oncology. As a process, screening begins at the entry to the cancer care system and continues at clinically meaningful times, periodically during active cancer care, or when clinically indicated. The goal is to facilitate proper referral to psychosocial oncology specialists for more specific assessment and care, as well as treatment and evaluation of the response, according to the implementation of distress management guidelines. In this editorial, we will provide a non-exhaustive overview of relevant protocols, with particular reference to the National Comprehensive Cancer Network (NCCN) Distress Management in Oncology Guidelines, and review the challenges and the problems in implementing screening, and the assessment and management of psychosocial and psychiatric problems in cancer centres and community care.

Distress is defined in the NCCN Guidelines for Distress Management as a multifactorial, unpleasant experience of a psychologic (ie, cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Early evaluation and screening for distress leads to early and timely management of psychologic distress, which in turn improves medical management. The panel for the Distress Management Guidelines recently added a new principles section including guidance on implementation of standards of psychosocial care for patients with cancer.

Objective: Transgender patients enter the health care system with a unique set of strengths and challenges. While facing a cancer diagnosis can be an overwhelming process for patients and their loved ones, questions have to be addressed and particular services have to be provided to create a supportive environment for members of the transgender community. The purpose of this article is to provide a systematic literature review of the existing research on cancer care for transgender patients.Method: Four electronic databases were searched, including PubMed, Wed of Science, CINAHL, and EMBASE. Overall, 23 articles published from 1968 to 2012 met the established criteria and were included in this study.Results: While biomedical components of cancer care for transgender patients, such as diagnostic and treatment strategies, were discussed, the review revealed an overall paucity of literature pertaining to the examined subject, exhibiting a particular lack in consideration of psychosocial and spiritual...

101 Background: Cancer patients face many supportive care needs. In crowded clinics with rising care complexity, clinicians struggle to assess and manage these needs. Duke Cancer Patient Support Program (DCPSP) services aim to bridge this gap, but many patients are unaware of these services. We hypothesized that a DCPSP mobile application (app) is a feasible approach to this problem. Methods: We developed an app to enhance DCPSP awareness and facilitate weekly symptom reporting (via the Edmonton Symptom Assessment Scale, ESAS). Based upon symptoms, the app presents information cards and recommendations for specific DCPSP services. We enrolled 50 patients with advanced cancer (2 arms; 25 app intervention, 25 control) and 10 caregivers to a 12-week pilot trial. The primary outcome was feasibility. Secondary measures assessed knowledge/engagement of DCPSP services, usability, satisfaction, quality of life (QoL), and activation. We interviewed a subset of participants about the experience. Results: Forty-five patients completed the study, exceeding our pre-determined feasibility threshold. Most patients were age 50-64; the most common cancers were breast (42%) and lung (18%). Knowledge/use of DCPSP services increased in both arms, with a larger trend in the intervention arm (2.5 vs 4.0 composite score increase). App patients (n=25) completed a median of 7 ESAS surveys for an overall response rate of 57%. The most commonly-reported moderate/severe symptoms were fatigue (40%), drowsiness (22%), and pain (20%), with 54% of surveys from 23 of 25 patients reporting at least one moderate/severe symptom. These patients averaged 20 app interactions versus 9 interactions for those without a moderate/severe symptom. Satisfaction scores were high, and qualitative feedback was positive. We found no differences in QoL or patient activation across study arms. Caregivers had significant improvement in awareness/use of services (median increase 4.5, p=0.01). Conclusions: The D-SCAN app is a feasible approach to augmenting supportive care awareness and navigation, with high satisfaction and usability scores. The trend towards enhanced awareness and engagement of DCPSP services in app utilizers warrants further testing. Clinical trial information: NCT03628794.

e22146Background: People living with cancer face challenges too numerous to attend to during brief clinic visits, and thus may benefit from additional help with supportive care needs. While patient...

161 Background: People living with cancer face challenges too numerous to attend to during brief clinic visits, and thus may benefit from additional help with supportive care needs. While patient navigators offer promise, they are a limited resource. Digital navigation offers a scalable solution, to extend navigators’ reach and connect patients with existing resources, thereby enhancing our ability to address unmet needs. Methods: Utilizing a “design thinking” approach, we developed and tested a digital navigation platform to enhance utilization of support resources in the Duke Cancer Institute (DCI). The alpha version of the application (app) was based upon insights gleaned from interactions with patients, caregivers, advisory board members, and staff. It was then tested among adult patients with advanced cancer at the DCI. Subjects participated in qualitative interviews with design/content experts, to elicit supportive care needs and gauge interest in utilizing the app to improve their care experiences. Detailed notes were taken, and emerging themes compiled. Results: We enrolled 10 patients and caregivers. Subjects reported feeling overwhelmed by information, feeling that “they don’t know where to start when looking for support.” They also expressed uncertainty about what questions to ask, and said they are not always comfortable asking for help. All struggled to define “supportive care;” only one knew it refers to a set of services. Subjects felt a digital navigation app would enable them to explore and access services as needed, to help them “feel less alone,” and to know “someone or something was there for them.” They expressed dislike for being asked lots of questions, wanting to explore options on their own instead of being led somewhere. Digital navigation has the promise to increase their sense of control, with one subject noting: “I like to know what my options are and decide for myself…people try to assume they know what you need all the time.” Conclusions: Digital supportive care navigation may be an effective, scalable, and cost-efficient intervention to support patients and caregivers, and ultimately improve outcomes. Further refinement and testing of this approach is needed.