PASTRY: A nursing-developed quality improvement initiative to combat moral distress.

BACKGROUND: High levels of moral distress in nursing professionals, of which oncology nurses are particularly prone, can negatively impact patient care, job satisfaction, and retention. AIM: "Positive Attitudes Striving to Rejuvenate You: PASTRY" was developed at a tertiary cancer center to reduce the burden of moral distress among oncology nurses. RESEARCH DESIGN: A Quality Improvement (QI) initiative was conducted using a pre- and post-intervention design, to launch PASTRY and measure its impact on moral distress of the nursing unit, using Hamric's Moral Distress Scale-Revised (MDS-R.) This program consisted of monthly 60-minute sessions allowing nurses to address morally distressing events and themes, such as clinicians giving "false hope" to patients or families. The PASTRY program sessions were led by certified clinicians utilizing strategies of discussion and mind-body practices. PARTICIPANTS: Clinical nurses working on an adult leukemia/lymphoma unit. ETHICAL CONSIDERATIONS: This was a QI initiative, participation was voluntary, MDS-R responses were collected anonymously, and the institution's Ethics Committee oversaw PASTRY's implementation. FINDINGS: While improvement in moral distress findings were not statistically significant, the qualitative and quantitative findings demonstrated consistent themes. The PASTRY program received strong support from nurses and institutional leaders, lowered the nursing unit's moral distress, led to enhanced camaraderie, and improved nurses' coping skills. DISCUSSION: Measurement of moral distress is innately challenging due to its complexity. This study reinforces oncology nurses have measurable moral distress. Interventions should be implemented for a safe and healing environment to explore morally distressing clinical experiences. Poor communication among multidisciplinary team members is associated with moral distress among nurses. Programs like PASTRY may empower nurses to build support networks for change within themselves and institutions. CONCLUSION: This QI initiative shows further research on moral distress reduction should be conducted to verify findings for statistical significance and so that institutional programs, like PASTRY, can be created.

Advancing survivorship care through the National Cancer Survivorship Resource Center: developing American Cancer Society guidelines for primary care providers.

The National Cancer Survivorship Resource Center (The Survivorship Center) began in 2010 as a collaboration between the American Cancer Society and the George Washington University Cancer Institute and was funded by the Centers for Disease Control and Prevention. The Survivorship Center aims to improve the overall health and quality of life of posttreatment cancer survivors. One key to addressing the needs of this ever-growing population is to develop clinical follow-up care guidelines that emphasize not only the importance of surveillance for cancer recurrence, but also address the assessment and management of the physical and psychosocial long-term and late effects that may result from having cancer and undergoing cancer treatment as well as highlight the importance of healthy behaviors that can reduce the risk of cancer recurrence, second primary cancers, and other chronic diseases. Currently, The Survivorship Center is coordinating the work of experts in oncology, primary care, and other health care professions to develop follow-up care guidelines for 10 priority cancer sites.

Lasting effects of cancer and its treatment on employment and finances in adolescent and young adult cancer survivors.

BACKGROUND: The impact of cancer and its treatment on employment and financial burden in adolescents/young adults (AYAs) is not fully known. METHODS: Eligibility for this cross-sectional study of AYA cancer survivors included the diagnosis of a malignancy between ages 18 and 39 years and survey completion within 1 to 5 years from diagnosis and ≥1 year after therapy completion. Participants were selected randomly from the tumor registries of 7 participating sites and completed an online patient-reported outcomes survey to assess employment and financial concerns. Treatment data were abstracted from medical records. Data were analyzed across diagnoses and by tumor site using logistic regression and Wald-based 95% confidence intervals adjusting for age (categorized), sex, insurance status, education (categorized), and treatment exposures. RESULTS: Participants included 872 survivors (breast cancer, n = 241; thyroid cancer, n = 126; leukemia/lymphoma, n = 163; other malignancies, n = 342). Exposure to chemotherapy in breast cancer survivors was associated with an increase in self-reported mental impairment in work tasks (odds ratio [OR], 2.66) and taking unpaid time off (OR, 2.62); survivors of "other" malignancies reported an increase in mental impairment of work tasks (OR, 3.67) and borrowing >$10,000 (OR, 3.43). Radiation exposure was associated with an increase of mental impairment in work tasks (OR, 2.05) in breast cancer survivors, taking extended paid time off work in thyroid cancer survivors (OR, 5.05), and physical impairment in work tasks in survivors of "other" malignancies (OR, 3.11). Finally, in survivors of "other" malignancies, having undergone surgery was associated with an increase in physical (OR, 3.11) and mental impairment (OR, 2.31) of work tasks. CONCLUSIONS: Cancer treatment has a significant impact on AYA survivors' physical and mental work capacity and time off from work.

Survivorship care plans in research and practice.

The Institute of Medicine (IOM) recommends the use of survivorship care plans (SCPs) for all cancer survivors. Developing useful SCPs requires understanding what survivors and their providers need and how SCPs can be implemented in practice. Published studies investigating the perspectives of stakeholders (survivors, primary care providers, and oncology providers) were reviewed regarding the content and use of SCPs. All National Cancer Institute (NCI)-designated cancer centers were surveyed concerning the extent to which SCPs for survivors of breast and colorectal cancers are in use, their concordance with the IOM's recommendation, and details about SCP delivery. Survivors and primary care providers typically lack the information the IOM suggested should be included in SCPs. Oncology providers view SCPs favorably but express concerns about the feasibility of their implementation. Fewer than one-half (43%) of NCI-designated cancer centers deliver SCPs to their breast or colorectal cancer survivors. Of those that do, none deliver SCPs that include all components recommended by the IOM. Survivors' and providers' opinions about the use of SCPs are favorable, but there are barriers to implementation. SCPs are not widely used in NCI-designated cancer centers. Variation in practice is substantial, and many components recommended by the IOM framework are rarely included. \

Content review of pediatric ethics consultations at a cancer center.

BACKGROUND/OBJECTIVES: Ethical challenges in pediatric oncology arise at every stage of illness. However, there are sparse data on the content of and reason for ethics consultations in the field. We sought to evaluate the content and characteristics of ethics consultations in pediatric patients at a cancer center. DESIGN/METHODS: We retrospectively identified ethics consultations performed for patients diagnosed with cancer at ≤21 years of age who were treated in the Department of Pediatrics from 2007 to 2017. Using an established coding schema, two independent reviewers analyzed the content of ethics consultation notes and identified core ethical issues and relevant contextual issues. Demographic, clinical, and consultation-specific data were also collected. RESULTS: Thirty-five consultations were performed for 32 unique patients. The most commonly identified ethical issues were obligation to provide nonbeneficial treatment (29%) and resuscitation preferences (26%). Communication conflicts were the most commonly identified contextual issue (40%). There were two themes that emerged repeatedly but were not a part of the original coding schema-four consultations (11%) that involved physicians questioning their obligation to provide potentially toxic treatment in the setting of poor patient/parent compliance, and two consultations (6%) related to complex risk-benefit analysis in the setting of an invasive procedure with uncertain benefit. CONCLUSIONS: Pediatric ethics consultations are infrequent at this specialty cancer hospital. Ethical issues focused on treatment and end-of-life care and included a diversity of communication conflicts.

Characteristics and Outcomes of Ethics Consultations on a Comprehensive Cancer Center's Gastrointestinal Medical Oncology Service.

The goal of this paper is to review and describe the characteristics and outcomes of ethics consultations on a gastrointestinal oncology service and to identify areas for systems improvement and staff education. This is a retrospective case series derived from a prospectively-maintained database (which includes categorization of the primary issues, contextual ethical issues, and other case characteristics) of the ethics consultation service at Memorial Sloan Kettering Cancer Center. The study analyzed all ethics consultations requested for patients on the gastrointestinal medical oncology service from September 2007 to January 2016. A total of 64 patients were identified. The most common primary ethical issue was the DNR order (39%), followed by medical futility (28%). The most common contextual issues were dispute/conflict between staff and family (48%), dispute/conflict intra-family (16%), and cultural/ethnic/religious issues (16%). The majority of ethical issues leading to consultation were resolved (84%); i.e., the patient, surrogate, and/or healthcare team followed the recommendation of the ethics consultant. 22% had a DNR order prior to the ethics consult and 69% had a DNR order after the consult. In this population of patients on a gastrointestinal oncology service, ethics consultations are most often called regarding patients with advanced cancers and the most common ethical conflicts arose between families and the health care team over goals of care at the end of life, specifically related to the DNR order and perceived futility of continued/escalation of treatment. Ethics consultations assisted with conflict resolution. Conflicts might be reduced with improved communication about prognosis and earlier end of life care planning.

Chronic medical conditions in adult survivors of retinoblastoma: Results of the Retinoblastoma Survivor Study.

BACKGROUND: Limited data are available regarding long-term morbidity in adult survivors of retinoblastoma (Rb). METHODS: The Retinoblastoma Survivor Study is a retrospective cohort of adult survivors of Rb diagnosed between 1932 and 1994. Participants completed a comprehensive questionnaire adapted from the Childhood Cancer Survivor Study surveys. Chronic conditions were classified using the National Cancer Institute's Common Terminology Criteria for Adverse Events (version 4.03). Multivariate Poisson regression was used to compare survivors of Rb with 2377 non-Rb controls, consisting of the Childhood Cancer Survivor Study sibling cohort and survivors with bilateral versus unilateral disease. RESULTS: Survivors of Rb (53.6% with bilateral disease) and non-Rb controls had a mean age of 43.3 years (standard deviation, 11 years) and 37.6 years (SD, 8.6 years), respectively, at the time of study enrollment. At a median follow-up of 42 years (range, 15-75 years), 86.6% of survivors of Rb had at least 1 condition and 71.1% had a severe/life-threatening (grade 3-4) condition. The adjusted relative risk (RR) of a chronic condition in survivors compared with non-Rb controls was 1.4 (95% confidence interval [95% CI], 1.3-1.4; P<.01); for a grade 3 to 4 condition, the RR was 7.6 (95% CI, 6.4-8.9; P<.01). Survivors were at an excess risk regardless of laterality. After stratifying by laterality and excluding ocular conditions and second malignant neoplasms (SMNs), only those with bilateral disease were found to be at an increased risk of any nonocular, non-SMN condition (RR, 1.2; 95% CI, 1.1-1.2) and for grade 3 to 4 nonocular, non-SMN conditions (RR, 1.7; 95% CI, 1.2-2.5). CONCLUSIONS: Survivors of Rb have an increased risk of chronic conditions compared with non-Rb controls. After excluding ocular conditions and SMNs, this excess risk was found to persist only for those with bilateral disease. Cancer 2016;122:773-781. © 2016 American Cancer Society.

NCCN Guidelines Insights: Survivorship, Version 1.2016.

The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for common consequences of cancer and cancer treatment. They are intended to aid health care professionals who work with survivors of adult-onset cancer in the posttreatment period, including those in general oncology, specialty cancer survivor clinics, and primary care practices. Guidance is also provided to help promote physical activity, weight management, and proper immunizations in survivors. This article summarizes the NCCN Survivorship panel's discussions for the 2016 update of the guidelines regarding the management of anxiety, depression, posttraumatic stress disorder-related symptoms, and emotional distress in survivors.

Characteristics and Outcomes of Ethics Consultations in an Oncologic Intensive Care Unit.

OBJECTIVE: To evaluate the frequency, characteristics, and outcomes of ethics consultations in critically ill patients with cancer. DESIGN, SETTING, AND METHODS: This is a retrospective analysis of all adult patients with cancer who were admitted to the intensive care unit (ICU) of a comprehensive cancer center and had an ethics consultation between September 2007 and December 2011. Demographic and clinical variables were abstracted along with the details and contexts of the ethics consultations. MAIN RESULTS: Ethics consultations were obtained on 53 patients (representing 1% of all ICU admissions). The majority (90%) of patients had advanced-stage malignancies, had received oncologic therapies within the past 12 months, and required mechanical ventilation and/or vasopressor therapy for respiratory failure and/or severe sepsis. Two-thirds of the patients lacked decision-making capacity and nearly all had surrogates. The most common reasons for ethics consultations were disagreements between the patients/surrogates and the ICU team regarding end-of-life care. After ethics consultations, the surrogates agreed with the recommendations made by the ICU team on the goals of care in 85% of patients. Moreover, ethics consultations facilitated the provision of palliative medicine and chaplaincy services to several patients who did not have these services offered to them prior to the ethics consultations. CONCLUSION: Our study showed that ethics consultations were helpful in resolving seemingly irreconcilable differences between the ICU team and the patients' surrogates in the majority of cases. Additionally, these consultations identified the need for an increased provision of palliative care and chaplaincy visits for patients and their surrogates at the end of life.

Survivorship care plans: is there buy-in from community oncology providers?

BACKGROUND: The Institute of Medicine recommended that survivors of cancer and their primary care providers receive survivorship care plans (SCPs) to summarize cancer treatment and plan ongoing care. However, the use of SCPs remains limited. METHODS: Oncology providers at 14 National Cancer Institute Community Cancer Centers Program hospitals completed a survey regarding their perceptions of SCPs, including barriers to implementation, strategies for implementation, the role of oncology providers, and the importance of topics in SCPs (diagnosis, treatment, recommended ongoing care, and the aspects of ongoing care that the oncology practice will provide). RESULTS: Among 245 providers (response rate of 70%), 52% reported ever providing any component of an SCP to patients. The most widely reported barriers were lack of personnel and time to create SCPs (69% and 64% of respondents, respectively). The most widely endorsed strategy among those using SCPs was the use of a template with prespecified fields; 94% of those who used templates found them helpful. For each topic of an SCP, although 87% to 89% of oncology providers believed it was very important for primary care providers to receive the information, only 58% to 65% of respondents believed it was very important for patients to receive the information. Furthermore, 33% to 38% of respondents reported mixed feelings regarding whether it was the responsibility of oncology providers to provide SCPs. CONCLUSIONS: Practices need additional resources to overcome barriers to implementing SCPs. We found resistance toward SCPs, particularly the perceived value for the survivor and the idea that oncology providers are responsible for SCP dissemination.

Survivorship: screening for cancer and treatment effects, version 2.2014.

The NCCN Guidelines for Survivorship provide screening, evaluation, and treatment recommendations for common physical and psychosocial consequences of cancer and cancer treatment. This portion of the guidelines describes recommendations regarding screening for the effects of cancer and its treatment. The panel created a sample screening tool, specifically for use in combination with the NCCN Guidelines for Survivorship, to guide providers to topics that require more in-depth assessment. Effective screening and assessment can help providers deliver necessary and comprehensive survivorship care.

Survivorship: nutrition and weight management, Version 2.2014. Clinical practice guidelines in oncology.

Healthy lifestyle habits have been associated with improved health outcomes and quality of life and, for some cancers, a reduced risk of recurrence and death. The NCCN Guidelines for Survivorship therefore recommend that cancer survivors be encouraged to achieve and maintain a healthy lifestyle, including attention to weight management, physical activity, and dietary habits. This section of the NCCN Guidelines focuses on recommendations regarding nutrition, weight management, and supplement use in survivors. Weight management recommendations are based on the survivor's body mass index and include discussions of nutritional, weight management, and physical activity principles, with referral to community resources, dietitians, and/or weight management programs as needed.

Survivorship: healthy lifestyles, version 2.2014.

Healthy lifestyle habits have been associated with improved health outcomes and quality of life and, for some cancers, a reduced risk of recurrence and death. The NCCN Guidelines for Survivorship therefore recommend that cancer survivors be encouraged to achieve and maintain a healthy lifestyle, with attention to weight management, physical activity, and dietary habits. This section of the NCCN Guidelines focuses on recommendations regarding physical activity in survivors, including assessment for the risk of exercise-induced adverse events, exercise prescriptions, guidance for resistance training, and considerations for specific populations (eg, survivors with lymphedema, ostomies, peripheral neuropathy). In addition, strategies to encourage health behavioral change in survivors are discussed.

Survivorship: sexual dysfunction (male), version 1.2013.

Various anticancer treatments, especially those directed toward the pelvis, can damage blood vessels and reduce circulation of blood to the penis and/or damage the autonomic nervous system, resulting in higher rates of erectile dysfunction in survivors than in the general population. In addition, hormonal therapy can contribute to sexual problems, as can depression and anxiety, which are common in cancer survivors. This section of the NCCN Guidelines for Survivorship provides screening, evaluation, and treatment recommendations for male sexual problems, namely erectile dysfunction.

Survivorship: sexual dysfunction (female), version 1.2013.

Cancer treatment, especially hormonal therapy and therapy directed toward the pelvis, can contribute to sexual problems, as can depression and anxiety, which are common in cancer survivors. Thus, sexual dysfunction is common in survivors and can cause increased distress and have a significant negative impact on quality of life. This section of the NCCN Guidelines for Survivorship provides screening, evaluation, and treatment recommendations for female sexual problems, including those related to sexual desire, arousal, orgasm, and pain.

Survivorship: immunizations and prevention of infections, version 2.2014.

Cancer survivors are at an elevated risk for infection because of immune suppression associated with prior cancer treatments, and they are at increased risk of complications from vaccine-preventable diseases. This section of the NCCN Guidelines for Survivorship provides recommendations for the prevention of infections in survivors through education, antimicrobial prophylaxis, and the judicious use of vaccines. These guidelines provide information about travel and gardening precautions and safe pet care/avoidance of zoonosis, and include detailed recommendations regarding vaccinations that should be considered and encouraged in cancer and transplant survivors.

Survivorship: fatigue, version 1.2014.

Many cancer survivors report that fatigue is a disruptive symptom even after treatment ends. Persistent cancer-related fatigue affects quality of life, because individuals become too tired to fully participate in the roles and activities that make life meaningful. Identification and management of fatigue remains an unmet need for many cancer survivors. This section of the NCCN Guidelines for Survivorship provides screening, evaluation, and management recommendations for fatigue in survivors. Management includes education and counseling, physical activity, psychosocial interventions, and pharmacologic treatments.

Survivorship: cognitive function, version 1.2014.

Cognitive impairment is a common complaint among cancer survivors and may be a consequence of the tumors themselves or direct effects of cancer-related treatment (eg, chemotherapy, endocrine therapy, radiation). For some survivors, symptoms persist over the long term and, when more severe, can impact quality of life and function. This section of the NCCN Guidelines for Survivorship provides assessment, evaluation, and management recommendations for cognitive dysfunction in survivors. Nonpharmacologic interventions (eg, instruction in coping strategies; management of distress, pain, sleep disturbances, and fatigue; occupational therapy) are recommended, with pharmacologic interventions as a last line of therapy in survivors for whom other interventions have been insufficient.

Survivorship: sleep disorders, version 1.2014.

Sleep disorders, including insomnia and excessive sleepiness, affect a significant proportion of patients with cancer and survivors, often in combination with fatigue, anxiety, and depression. Improvements in sleep lead to improvements in fatigue, mood, and quality of life. This section of the NCCN Guidelines for Survivorship provides screening, diagnosis, and management recommendations for sleep disorders in survivors. Management includes combinations of sleep hygiene education, physical activity, psychosocial interventions, and pharmacologic treatments.

Survivorship: pain version 1.2014.

Many posttreatment cancer survivors experience chronic pain, often leading to psychological distress; decreased activity, motivation, and personal interactions; and an overall poor quality of life. This section of the NCCN Guidelines for Survivorship provides screening and management recommendations for pain in survivors. A multidisciplinary approach is recommended, with a combination of pharmacologic treatments, psychosocial and behavioral interventions, physical therapy and exercise, and interventional procedures.