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.

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.

Advanced Practice Providers and Survivorship Care: They Can Deliver.

INTRODUCTION: As the number of cancer survivors grows, new models of survivorship care are being implemented, but there is limited evaluation to date. This retrospective review assesses the concordance of care provided to adult-onset cancer survivors by advanced practice providers (nurse practitioners and physician assistants) with Institute of Medicine guidelines for survivorship care. METHODS: Records from three survivorship clinics at a single institution were reviewed for frequency of recurrence surveillance, screening for second cancers, symptom management (physical, psychological), health promotion education (alcohol, tobacco, cholesterol, and bone density screenings; diet/exercise discussion), care coordination, and provision of care plan. Data were characterized using descriptive statistics. RESULTS: Over 2 years, 9,052 unique survivorship visits occurred; 210 breast, 208 prostate, and 204 colorectal visits were randomly selected for review. All patients with breast cancer underwent surveillance for recurrence; 99% were screened for new cancers. Discussion of health promotion activities ranged from 83% to 100%; 91% of patients were reviewed for physical symptoms, and 93% were reviewed for psychological symptoms. All patients with prostate cancer underwent recurrence surveillance; 97% were screened for new primaries. Health promotion activities ranged from 70% to 97%, and symptoms were discussed in 89% of visits. All patients with colorectal cancer underwent a surveillance colonoscopy for recurrence; 97% had a carcinoembryonic antigen test. Among women, 97% had mammograms, and 96% had a Papanicolaou test; 83% of men had a prostate-specific antigen test. Health promotion activities ranged from 69% to 100%, and symptoms were discussed in 93% to 97% of visits. CONCLUSIONS: Findings suggest that advanced practice providers can provide survivorship care in accordance with Institute of Medicine standards, which provide a normative standard. This assessment is an important step in evaluating survivorship outcomes.

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.

Automating Treatment Summary Development Using Electronic Billing Information: A Pilot Study of Survivors of Head and Neck Cancer.

PURPOSE: Although the provision of a treatment summary (TS) is a quality indicator in oncology, routine delivery of TSs remains challenging. Automatic TS generation could facilitate use, but data on accuracy are lacking in complex cancers such as head and neck cancer (HNC). We developed and evaluated an electronic platform to automate TS generation for HNC. METHODS: The algorithms autopopulated TSs using data from billing records and an institutional cancer registry. A nurse practitioner used the medical record to verify the accuracy of the information and made corrections electronically. Inaccurate and missing data were considered errors. We described and investigated reasons for errors in the automatically generated TSs. RESULTS: We enrolled a heterogeneous population of 43 survivors of HNC. Using billing data, the information on primary site, lymph node status, radiation, and chemotherapy use was accurate in 93%, 95%, 93%, and 95% of patients, respectively. Billing data captured surgery accurately in 77% of patients; once an omitted billing code was identified, accuracy increased to 98%. Chemotherapies were captured in 90% of patients. Using the cancer registry, month and year of diagnosis were accurate in 91% of cases; stage was accurate in 28% of cases. Reprogramming the algorithm to ascertain clinical stage when pathologic stage was unavailable resulted in 100% accuracy. The algorithms inconsistently identified radiation receipt and treating physicians from billing data. CONCLUSION: It is feasible to automatically and accurately generate most components of TSs for HNC using billing and cancer registry data, although clinical review is necessary in some cases.

Long-Term Survivorship Care After Cancer Treatment - Summary of a 2017 National Cancer Policy Forum Workshop.

The National Cancer Policy Forum of the National Academies of Sciences, Engineering and Medicine sponsored a workshop on July 24 and 25, 2017 on Long-Term Survivorship after Cancer Treatment. The workshop brought together diverse stakeholders (patients, advocates, academicians, clinicians, research funders, and policymakers) to review progress and ongoing challenges since the Institute of Medicine (IOM)'s seminal report on the subject of adult cancer survivors published in 2006. This commentary profiles the content of the meeting sessions and concludes with recommendations that stem from the workshop discussions. Although there has been progress over the past decade, many of the recommendations from the 2006 report have not been fully implemented. Obstacles related to the routine delivery of standardized physical and psychosocial care services to cancer survivors are substantial, with important gaps in care for patients and caregivers. Innovative care models for cancer survivors have emerged, and changes in accreditation requirements such as the Commission on Cancer's (CoC) requirement for survivorship care planning have put cancer survivorship on the radar. The Center for Medicare & Medicaid Innovation's Oncology Care Model (OCM), which requires psychosocial services and the creation of survivorship care plans for its beneficiary participants, has placed increased emphasis on this service. The OCM, in conjunction with the CoC requirement, is encouraging electronic health record vendors to incorporate survivorship care planning functionality into updated versions of their products. As new models of care emerge, coordination and communication among survivors and their clinicians will be required to implement patient- and community-centered strategies.

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.

Incorporating Multiple Perspectives Into the Development of an Electronic Survivorship Platform for Head and Neck Cancer.

PURPOSE: To improve the care of survivors of head and neck cancer, we developed the Head and Neck Survivorship Tool: Assessment and Recommendations (HN-STAR). HN-STAR is an electronic platform that incorporates patient-reported outcomes into a clinical decision support tool for use at a survivorship visit. Selections in the clinical decision support tool automatically populate a survivorship care plan (SCP). We aimed to refine HN-STAR by eliciting and incorporating feedback on its ease of use and usefulness. METHODS: Human-computer interaction (HCI) experts reviewed HN-STAR using think-aloud testing and the Nielsen Heuristic Checklist. Nurse practitioners (NPs) thought aloud while reviewing the clinical decision support tool and SCP and responded to an interview. Survivors used HN-STAR as part of a routine visit and were interviewed afterward. We analyzed themes from the feedback. We described how we addressed each theme to improve the usability of HN-STAR. RESULTS: Five HCI experts, 10 NPs, and 10 cancer survivors provided complementary usability insight that we categorized into themes of improvements. For ease of use, themes included technical design considerations to enhance user interface, ease of completion of a self-assessment, streamlining text, disruption of the clinic visit, and threshold for symptoms to appear on the SCP. The theme addressing usefulness was efficiency and comprehensiveness of the clinic visit. For each theme, we report revisions to HN-STAR in response to the feedback. CONCLUSION: HCI experts provided key technical design insights into HN-STAR, whereas NPs and survivors provided usability feedback and clinical perspectives. We incorporated the feedback into the preparation for additional testing of HN-STAR. This method can inform and improve the ease of use and usefulness of the survivorship applications.

A head and neck cancer intervention for use in survivorship clinics: a protocol for a feasibility study.

BACKGROUND: Head and neck cancer survivors commonly experience severe long-term toxicities, late-occurring symptoms, and significant risks of the second primary malignancy and comorbid illnesses. With multiple simultaneous health issues, these complex cancer survivors often do not receive comprehensive health care that addresses their needs. A tool is needed to streamline and standardize comprehensive care for this cohort. METHODS/DESIGN: We designed the Head and Neck Survivorship Tool: Assessment and Recommendations (HN-STAR) to address health care challenges for head and neck cancer survivors. HN-STAR is an electronic platform that aims to simplify the provision of personalized care in cancer survivorship clinics. It uses an algorithmic approach to integrate patient-reported outcomes, clinical details, and evidence-based guidelines to standardize comprehensive care provided in routine survivorship visits. It has four integrated components: (1) a simplified treatment summary, which pulls treatment details from a clinical database or can be completed manually using a streamlined form; (2) an online self-assessment for patients to report their own symptoms; (3) an interactive discussion guide presenting all relevant information to the provider during the clinic visit; and (4) a survivorship care plan generated at the end of each visit that reflects decisions made during the visit. By using a modifiable electronic platform, HN-STAR provides a method for incorporating survivorship care plans into clinical practice and for disseminating evidence on symptom management and preventive care. This is a study to assess the feasibility of a future multi-site, randomized clinical trial of HN-STAR. We will enroll head and neck cancer survivors who are followed in one of two nurse practitioner-led survivorship clinics. We will implement HN-STAR for one routine survivorship visits. We will assess (1) usability and feasibility outcomes of HN-STAR from the perspective of key stakeholders and (2) the planned outcomes intended for the larger trial. We will collect usability and feasibility data from online surveys of survivors and their providers. Our findings will inform whether it is feasible to advance HN-STAR to trial. If so, we will adapt HN-STAR and the study design of the trial in response to feedback from survivors and providers. The long-term goal is to determine if such an intervention will lead to improved and simplified comprehensive survivorship care. DISCUSSION: This feasibility study will evaluate implementation of HN-STAR into clinical practice in terms of usability, practicality, and clinical flow in two distinct clinical settings. This study will also provide critical baseline data to characterize this vulnerable population. Findings from this study will inform a multicenter randomized trial of HN-STAR, aimed at standardizing and streamlining the delivery of evidence-guided comprehensive care for head and neck cancer survivors. Ultimately, if found effective, the modular structure of HN-STAR could permit its expansion to survivors of other complex cancers. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02571673.

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.

The Cancer Survivorship Journey: Models of Care, Disparities, Barriers, and Future Directions.

Although the number of long-term cancer survivors has increased substantially over past years, the journey of survivorship does not always include high-quality, patient-centered care. A variety of survivorship care models have evolved based on who provides this care, the survivor population, the site of care, and/or the capacity for delivering specific services. Other areas of survivorship care being explored include how long follow-up care is needed, application of a risk-based approach to survivorship care, and the role of the survivor in his or her own recovery. However, there is little evidence indicating whether any models improve clinical or patient-reported outcomes. A newer focus in survivorship care has included assessment of potential disparities; the sociodemographic characteristics of population subgroups associated with barriers to receiving high-quality cancer treatment may also affect the survivorship period. Developing policies and programs to address disparities in survivorship care is not simple, and examining how financial hardship affects cancer outcomes, reducing economic barriers to care, and increasing incorporation of patient-centered strategies may be important components. Here too, there is little evidence regarding the best strategies to address these disparities. Barriers to providing high-quality, patient-centered survivorship care include lack of evidence, lack of a trained survivorship workforce, lack of reimbursement structures/insurance coverage, and lack of a health care system that reduces fragmented care. Future research needs to focus on developing a survivorship care evidence base, exploring strategies to facilitate provision of survivorship care, and disseminating best survivorship care practices to diverse and international audiences.

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.

The Role of Advanced Practice Nurses in Cancer Survivorship Care.

OBJECTIVES: To review advanced practice nursing roles in planning, implementing, and evaluating survivorship care. DATA SOURCES: Review of the literature, published articles, government and organizational reports. CONCLUSION: The increased focus on improving post-treatment cancer care presents opportunities for advanced practice nurses to meet the physical and psychosocial needs of cancer survivors. IMPLICATIONS FOR NURSING PRACTICE: As experts in the comprehensive delivery of care, oncology advanced practice nurses are positioned to initiate, deliver, and evaluate survivorship care through innovative models.

Assuring Quality Cancer Survivorship Care: We've Only Just Begun.

Clinical practice guidelines, quality metrics, and performance improvement projects are the key tools of the national movement to improve and assure quality cancer care. Each of these evaluation instruments is intended to assess quality from a unique perspective, including that of the individual provider, the practice/hospital, and the health care system. A number of organizations have developed or endorsed quality measures specific to cancer, however, these have not formally included survivorship measures. Fortunately, the American Society of Clinical Oncology (ASCO), the National Comprehensive Cancer Network, the American Cancer Society, and the American College of Surgeons (ACoS) have taken a leadership role in developing survivorship guidelines and quality metrics. Both ASCO and ACoS have focused their efforts on the treatment summary and care plan, a document that was proposed in the 2006 Institute of Medicine report on cancer survivorship. ASCO has proposed a care plan template for implementation and incorporation into the electronic health records (EHR), which will lend itself to structure, process, and outcome measurement. ACoS, conversely, has included the care plan in its cancer program standards with annual evaluation metrics. In addition, ASCO has developed a number of key survivorship-relevant metrics as part of its Quality Oncology Practice Initiative (QOPI), a tool developed to measure quality cancer care and assess adherence to guidelines across academic and community practices. Together, these efforts will direct us to more effective ways to disseminate guideline recommendations and to better methods of assessing quality survivorship care nationally.

Outcomes and satisfaction after delivery of a breast cancer survivorship care plan: results of a multicenter trial.

PURPOSE: Survivorship care plans (SCPs) have been suggested to reduce fragmentation of care experienced by cancer survivors. Acceptance of SCPs is high, but trials in the United States are few. This pilot study used a quasiexperimental design to examine the outcomes achieved by breast cancer survivors receiving a standardized SCP visit at one of seven comprehensive cancer centers. MATERIALS AND METHODS: Outcomes were assessed before and again 3 months after delivery of an SCP and included survivors' use of and satisfaction with SCPs, perceived knowledge about survivorship, and assessment of the quality and coordination of survivorship care. RESULTS: One hundred thirty-nine survivors of breast cancer completed baseline and follow-up measures and received a standardized SCP visit. Participants most commonly used SCP materials to make decisions about exercise (64%), which tests to receive and when (62%), and dietary changes (62%). Only 21% shared the SCP with their primary care provider during that time. Satisfaction with the SCP was high, with 90% of participants reporting being at least satisfied with the SCP. Perceived knowledge about survivorship improved after SCP delivery, as did perceived care coordination and the provider's knowledge of the effects of cancer on survivors (all P < .001). Individuals closer to the time of diagnosis reported greater satisfaction with and use of SCPs. CONCLUSION: This study demonstrates improvements in perceived knowledge and quality of survivorship care after receipt of a comprehensive SCP. Survivors were satisfied with their SCP, and those closer to diagnosis reported greater satisfaction with and use of the materials.

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: 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.