Consensus Recommendations From the Children's Oncology Group Nursing Discipline's State of the Science Symposium: Symptom Assessment During Childhood Cancer Treatment.

Background: Recognizing and addressing illness-related distress has long been a priority for pediatric oncology nurses and the Children's Oncology Group. Although symptoms are known to be highly prevalent during treatment for childhood cancer, there is currently no guidance for how often symptoms should be assessed, which symptoms should be prioritized for assessment, and how the data should be collected. Methods: The Nursing Discipline, within Children's Oncology Group, hosted a one-day Interprofessional seminar titled "Symptom Assessment During Childhood Cancer Treatment: State of the Science Symposium." Following the symposium, an expert panel was assembled to review all available evidence, including information presented and collected during the symposium. Consensus-building discussions were held to identify common themes and to produce recommendations for clinical practice. Results: Four recommendations emerged including (1) the identification of priority "core" symptoms for assessment; (2) inclusion of the child's voice through self-report, when possible; (3) consistent documentation and communication of symptom assessment results; and (4) implementation of patient/family education related to symptoms. Discussion: Symptom recognition, through appropriate assessment, is the first step in symptom management. The goal for developing and sharing these recommendations is to promote consistent and comparable clinical practice across institutions in regard to symptom assessment during childhood cancer therapy. Integration of these recommendations will set the stage for future studies related to the frequency of symptoms across disease groups, projection of anticipated symptom trajectories, development of evidence-based teaching tools for common symptoms, and evaluation of patient outcomes with enhanced symptom assessment and management.

Putting Adolescents and Young Adults in a Room Together: Launching an Adolescent and Young Adult Oncology Council.

Purpose: This article describes the formation and first meeting of a community adolescent and young adult oncology council (AYAOC), which was created to promote patient and stakeholder involvement in research and programmatic initiatives within community-based cancer centers. Methods: The AYAOC (comprising patients/survivors, family members, researchers and clinicians) convened at a one-day workshop moderated by an Australian not-for-profit AYA cancer organization. The council shared and compared health care experiences and then identified and prioritized unmet health care needs. Workshop notes were analyzed using inductive content analysis. Results: AYAOC members identified similarities in their experiences of cancer care and priorities for improvement of the health care system. Peer connection and the creation of adolescent and young adult (AYA)-specific care facilities were identified as the most pressing needs for AYAs with cancer, closely followed by integration of complementary medicine into medical practice and government advocacy to improve the quality and consistency of AYA cancer care delivery. Themes identified from AYAOC discussion included emotional isolation, naivety with and sometimes distrust of the medical system, the lasting impact of cancer on identity, the need for emotionally safe interactions with both individual clinicians and groups of peers, and the desire to take personal action to improve care for future patients. Conclusion: AYAOC members expressed a drive to share their experiences, advocate for others, and improve health care services for the "next generation" of AYAs diagnosed with cancer. Sharing stories and connecting with peers may have personal value for individuals. Channeling the altruistic energy of AYAs and stakeholders into group advisory and advocacy efforts also has value for health care systems, allowing stakeholder insights to inform clinical service delivery and research priorities.

Use of a Smartphone Application for Prompting Oral Medication Adherence Among Adolescents and Young Adults With Cancer

OBJECTIVES: To explore the feasibility and acceptability of use of a smartphone medication reminder application to promote adherence to oral medications among adolescents and young adults (AYAs) with cancer.
. SAMPLE & SETTING: 23 AYAs with cancer from a Children's Oncology Group-affiliated children's hospital and a National Cancer Institute-designated comprehensive cancer center in Salt Lake City, UT.
. METHODS & VARIABLES: Participants were asked to use the application for eight weeks. Data on application usage were obtained from a cloud-based server hosted by the application developers. Weekly self-report questionnaires were completed. Feasibility was assessed through participants' usage and responses. Acceptability was assessed through participants' perceived ease of use and usefulness.
. RESULTS: Almost all participants used the application at least once. More than half reported that they took their medications immediately when they received reminders. Participants also reported that the application was easy to set up and use, and that it was useful for prompting medication taking.
. IMPLICATIONS FOR NURSING: Nurses could continue to test the efficacy of integrating e-health modalities, such as smartphone applications, into efforts to promote medication adherence.

Comparison of Legacy Fatigue Measures With the PROMIS Pediatric Fatigue Short Form
.

OBJECTIVES: To compare Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Fatigue Short Form measures and legacy patient-reported outcome fatigue measures to capture cancer-related fatigue change in pediatric patients with cancer. 
. SAMPLE & SETTING: 96 racially diverse children and adolescents with cancer. The study occurred in a 32-bed inpatient unit and three regional outpatient clinics.
. METHODS & VARIABLES: The Fatigue Scale-Child, Fatigue Scale-Adolescent, and the PROMIS Pediatric Fatigue Short Form measures were administered at three time points during chemotherapy. Descriptive, correlational, psychometric, and receiver operating characteristic (ROC) curve analyses were conducted. The variable was pediatric patient-reported fatigue.
. RESULTS: All measures were positively correlated at each time point. ROC curves were not statistically different from each other at any data point. 
. IMPLICATIONS FOR NURSING: Nurses have psychometrically strong options for measuring cancer-related fatigue in pediatric patients with cancer, but the PROMIS Pediatric Fatigue Short Form is applicable to more age groups.

The cost of cancer: a retrospective analysis of the financial impact of cancer on young adults.

Young adult cancer survivors (YAs) are confronted with immense financial challenges in the wake of their treatment. Medical bills and loss of savings may cause YAs to forgo recommended medications or follow-up appointments. Young survivors with financial concerns also report depression, stress and anxiety. The Samfund is a national nonprofit organization that provides financial support to YAs post-treatment. To quantify the financial burden of cancer in YAs, a retrospective analysis was performed of data collected from Samfund grant applications of 334 YA cancer survivors. Grants were awarded between 2007 and 2013 and grant recipients were consented electronically in 2014 for retrospective data analysis. Recipients ranged from 19 to 39 years of age at the time of their grant applications. Descriptive statistics were calculated and compared to the Medical Expenditure Panel Survey (MEPS) and U.S. census data on age-matched peers. Financial indicators of YA cancer survivors are worse in many domains than those of age-matched controls. Furthermore, YA survivors in their 30s report more perilous prefunding financial situations than younger grant recipients. Cancer has a devastating and age-specific impact on the finances of YAs. Philanthropic grants from the cancer support community, in conjunction with healthcare policy reforms, have the potential to break the cycle of financial need and help YAs move forward with their lives after cancer treatment.