Development and psychometric evaluation of the Symptom Self-Management Behaviors Tool for adolescents/young adults with cancer.

OBJECTIVES: Adolescents and Young Adults (AYAs) with cancer experience symptoms related to disease and treatment. To manage these symptoms, they need to develop self-management behaviors, yet no tool exists to assess these behaviors. The Symptom Self-Management Behaviors Tool (SSMBT) was developed to meet this need. METHODS: The study consisted of 2 phases. Phase 1 evaluated content validity, and Phase 2 evaluated reliability and validity. The SSMBT initially contained 14 items with 2 dimensions: (1) behaviors used to Manage Symptoms and (2) behaviors used to communicate with providers regarding symptoms. Four oncology professionals and 5 AYAs with cancer assessed the content validity. Evaluation of reliability and validity involved 61 AYAs with cancer. Reliability was evaluated using Cronbach's alpha. Construct validity was assessed with factor analysis. Discriminant validity was assessed using associations with symptom severity and distress. RESULTS: Content validity evaluation supported the importance of the items. Factor analysis supported a two-factor structure: Manage Symptoms (8 items) and Communicate with Healthcare Providers (4 items) subscales. Internal consistency reliability for the total SSMBT was acceptable with Cronbach's alpha = 0.74. Cronbach's alpha value for the Manage Symptoms subscale was α = 0.69 and for the Communicate with Healthcare Providers subscale was α = 0.78. The SSMBT total and the Manage Symptoms subscale scores were moderately correlated with symptom severity (r = 0.35, p = 0.014; r = 0.44, p = 0.002, respectively), partially supporting discriminant validity. SIGNIFICANCE OF RESULTS: Systematic assessment of behaviors AYAs use is critical for clinical practice and evaluate interventions to improve self-management. The SSMBT demonstrates initial reliability and validity but requires further evaluation for clinical interpretation and future use.

Online Experiences, Internet-Fostered Connection, Resilience, and Adjustment Among Adolescent Siblings of Children With Cancer.

BACKGROUND: Pediatric cancer disrupts the lives of siblings in many ways, including physical separations from family and friends that increase risk for distress. Research suggests that siblings use technology and social media to connect with friends and family and seek social support and interaction. However, this may expose siblings to negative online experiences that can erode self-esteem, reducing resilience. OBJECTIVE: This study explored the relationship between online experiences, internet-fostered connection, resilience, and psychosocial health among siblings of children with cancer. METHODS: Participants included adolescent siblings (N = 81; aged 12-17 years) of children with cancer. Most were female (56.8%), and 50.6% represented racially or ethnically minoritized groups. Online experiences, social media use, resilience, and psychosocial health were self-reported and analyzed using structural equation modeling. RESULTS: A majority of siblings reported moderate to severe posttraumatic stress symptoms (PTSSs) (59%) and elevated emotional and behavioral difficulties (EBDs) (53%). Experiencing more positive online experiences was associated with greater perceived connection to family and friends online, but not resilience, PTSSs, or EBDs. In contrast, higher negative online experience scores were significantly associated with more PTSSs and EBDs. In addition, the association between negative online experiences and EBDs was significantly mediated by a negative association between negative online experiences and resilience. CONCLUSIONS: Although social media may be a valuable tool for helping siblings of children with cancer garner social support, negative online experiences may be detrimental to their adjustment. IMPLICATIONS FOR PRACTICE: Efforts should be made to preserve and foster resilience among siblings who use social media for support.

Cancer-Specific health equity metrics in the United States of America: A scoping review.

Health disparities in cancer care persist, and in some cases are growing, despite decades of research aimed at achieving equal outcomes for all Americans. There is growing consensus that reducing disparities will require a shift from aiming to provide care that is equal, to aiming to provide care that is equitable. The current landscape of metrics and interventions that move beyond equality (i.e., care provided equally to all patients) and towards equity (i.e., care provided variably and justly such that patients achieve equal outcomes) have not been characterized. Thus, the aim of this scoping literature review was to identify cancer-specific health equity metrics and interventions, and to explore current gaps in the field. Following PRISMA guidelines, PubMed, CINAHL, PsycInfo, and Scopus were searched for studies published in English between 2012 and 2022 that implemented a metric to identify or an intervention to address cancer care inequities in the United States. The search returned 36,724 unique articles, of which 40 articles (1%) included an intervention to advance health equity. Metrics included timeliness of screening and treatment, receipt of goal-concordant care, and survival. The vast majority of articles were cross-sectional or cohort studies that described health disparities using one or more outcome metrics. Gaps identified included research on receipt of guideline-concordant care, interventions addressing multiple levels of structural and social determinants of health, inclusion of children and families, and patient-reported outcomes or other sources of data that could help inform interventions to advance equity.

COVID-19-Related Employment Disruptions and Increased Financial Burden Among Survivors of Adolescent and Young Adult Cancer.

Background: Financial burden is a major concern for survivors of adolescent and young adult (AYA) cancers. We identified if employment disruptions during the COVID-19 pandemic affected AYA survivors' financial burden. Methods: AYAs who were enrolled in a cancer patient navigation program were e-mailed a survey in fall 2020. Survey items included sociodemographics, employment disruption, and two measures of financial burden: COmprehensive Score for Financial Toxicity (COST) and material and behavioral financial hardship items (for any reason, COVID-19 induced, cancer induced). Financial burden outcomes were dichotomized at the median (COST = 21; financial hardship = 3). The association of employment disruptions and sociodemographics with financial burden was assessed using multivariable logistic regression models. Results: Reduced hours/job loss was reported by 24.0% of 341 participants. Survivors with a high school education or less (odds ratio [OR]: 2.70; 95% confidence interval [CI]: 1.21-6.03) or who had decreased hours or job loss (OR: 3.97; 95% CI: 2.01-7.84) had greater odds for high financial toxicity. Reduced hours/job loss was the only factor associated with high material and behavioral financial hardship for both any reason (OR: 2.75; 95% CI: 1.41-5.33) and owing to COVID-19 (OR: 4.98; 95% CI: 2.28-10.92). Cancer treatment since March 2020 was associated with cancer-induced high material and behavioral financial hardship (OR: 3.31; 95% CI: 1.96-5.58). Conclusion: Employment disruptions owing to the COVID-19 pandemic, lower education levels, and cancer treatment were associated with high financial burden among AYA cancer survivors. Our findings suggest the need for multilevel interventions to identify and address financial burden among vulnerable cancer survivors.

Technology-Mediated Support Among Siblings of Children with Cancer.

Purpose: A diagnosis of pediatric cancer can leave healthy siblings with limited access to support. Technology-mediated interpersonal interactions have been noted among adolescent and young adults with cancer and may be an effective source of support for adolescent siblings of children with cancer. In this study, we understand how adolescent siblings use technology to connect with their support network and how their technology use changes after their sibling's cancer diagnosis. Methods: Participants included a national sample (N = 24) of adolescents aged 12-17 who had a sibling diagnosed with cancer in the last 2 years (up to 3 years if still receiving curative-focused treatment). Ecomaps were cocreated with participants to identify sources of social support and modality of interactions. Interviews were transcribed, coded, content analyzed, and descriptively summarized. Results: Adolescent siblings (mean = 14.2 years) perceived technology as a tool to maintain support from their established personal network, rather than a way to expand sources of social support. Most did not seek support or information about cancer outside their known network, preferring information to come from parents or trusted network members. Siblings identified video calls as an important resource for connecting with parents, their sick brother or sister, and others to receive emotional support and companionship. Conclusions: Findings suggest that adolescent siblings of children use technology to connect with their established network for support, an important finding for designing assessments and interventions for this population. Future inquiry should explore these differences, identify unmet needs, and inform acceptable, effective interventions to augment support.

Financial burdens during the COVID-19 pandemic are related to disrupted healthcare utilization among survivors of adolescent and young adult cancers.

PURPOSE: We examined whether financial burdens occurring during the COVID-19 pandemic impacted healthcare utilization among survivors of adolescent and young adult cancers. METHODS: We surveyed survivors enrolled in a patient navigation program to obtain self-reports of delayed/skipped cancer care or other care, changes to medication obtainment, and changes to medication use since the COVID-19 pandemic began. Reported financial burdens were defined as financial toxicity in the past 4 weeks (COmprehensive Score for financial Toxicity [COST] ≤ median 21) and material hardships (range = 4-11) since March 2020. Adjusted logistic regression models calculated associations and effect modification by gender. RESULTS: Survivors (n = 341) were mostly female (61.3%) and non-Hispanic White (83.3%). Nearly 20% delayed/skipped cancer care, 35.2% delayed/skipped other care, 19.1% changed medication obtainment, and 12.6% changed medication use. Greater material hardships were associated with delayed/skipped cancer care (odds ratio (OR) = 3.13, 95% CI = 1.44-6.81) and other care (OR = 2.17, 95% CI = 1.18-3.98), and changed medication obtainment (OR = 2.72, 95% CI = 1.43-5.18) or use (OR = 4.49, 95% CI = 2.05-9.80). Financial toxicity was associated with delayed/skipped other care (OR = 2.53, 95% CI = 1.31-4.89) and changed medication obtainment (OR = 1.96, 95% CI = 1.01-3.83) and medication use (OR = 3.73, 95% CI = 1.59-8.73). The association of material hardships and any changes in healthcare utilization was greater among female compared to male survivors. CONCLUSION: Financial burdens experienced during the pandemic impeded survivors' ability to utilize necessary healthcare, with worse impacts among female survivors. IMPLICATIONS FOR CANCER SURVIVORS: Delayed or skipped healthcare may lead to an increased cancer mortality or severity of therapy-related conditions. Providing resources that enable survivors experiencing financial burdens to continue critical cancer and preventive care during the COVID-19 pandemic is a priority.

Changes in Central Line-Associated Bloodstream Infection (CLABSI) Rates Following Implementation of Levofloxacin Prophylaxis for Children and Adolescents With High-Risk Leukemia.

Background: Despite initiatives to reduce central line-associated bloodstream infection (CLABSI), children and adolescents with hematologic malignancies, as well as those with relapsed disease, remain at the greatest risk for infection. This single-institution project evaluated changes in CLABSI rates following implementation of antibacterial prophylaxis with levofloxacin for patients with high-risk hematologic malignancies. Methods: Positive blood culture events meeting National Health Safety Network surveillance criteria to be classified as CLABSIs from January 1, 2006, to December 31, 2019, were included. Data were organized into four time periods for comparison based on implementation of CLABSI-reduction interventions. Conditional Poisson regression models were used to evaluate the effect of time (intervention period) on CLABSI rates with post hoc Tukey pairwise comparisons between each of the four time periods. Results: From 2006 and 2019, 227 patients experienced 310 CLABSIs. Clinically important decreases in CLABSI rates from baseline (4.84 per 1,000 line days) occurred with implementation of Children's Hospital Association (CHA) bundles (3.29 per 1,000 line days); however, this difference was not significant (p = .16). CLABSI rates decreased from baseline with the addition of formalized supportive cares (2.66 per 1,000 line days; incidence rate ratio [IRR] = 0.60; p < .01), and with the use of antibacterial prophylaxis (1.66 per 1,000 line days; IRR = 0.35; p < .01). Post hoc comparisons indicated decreased CLABSI rates with the use of antibacterial prophylaxis compared with CHA bundles alone (IRR = 0.49; p = .011) and CHA bundles plus formalized supportive cares (IRR = 0.58; p = .046). Discussion: Results demonstrate sustained success using a practice-based evidence approach to guide CLABSI-reduction interventions. Follow-up research, applying machine learning algorithms, may identify additional risk factors and inform future interventions.

Informing Parents as Caregivers With a Symptom Assessment App Developed for Children With Cancer.

Background: Mobile health technologies can assist children to communicate their symptom experiences in a developmentally appropriate format. However, few investigations have examined how mHealth resources may also assist parents in their caregiver role. The purpose of this study was to explore how a symptom assessment app designed for school-age children with cancer could further inform parents as caregivers. Methods: Nineteen parents (18 mothers; median 35 years old, range 26-48 years) of children (6-12 years of age) receiving cancer treatment participated in the feasibility/acceptability trial of a game-based symptom assessment app. Acceptability interviews with parents were completed after each child's trial with the app. We completed a secondary analysis of the parent interviews using thematic analysis to examine how the app could support parents in their caregiving role. Results: Parents perceived the app to (1) elicit the child's voice about his/her symptom experience; (2) provide a supportive and safe environment for the child to report symptoms; and (3) create an opportunity to facilitate communication between the child, parent, and clinical team. Parents expressed a willingness for their child to represent his/her experience with the app so that they could make informed decisions regarding symptom care. Discussion: Perceived benefits of the app extended to parents as they described developing further insight into their child's cancer experience. The knowledge gained allowed parents the potential to enhance symptom communication and supportive care strategies. Future research should further evaluate how mHealth tools facilitate shared symptom management between children receiving treatment for cancer and their caregivers.

Symptoms and daily experiences reported by children with cancer using a game-based app.

PURPOSE: Mobile health (mHealth) resources, including apps, are emerging as resources to support children in tracking symptoms and other health-related data. The purpose of this study was to describe symptoms and daily experiences reported by elementary school-age children receiving treatment for cancer using the newly developed Color Me Healthy app. DESIGN AND METHODS: Participants in this descriptive study were children 6-12 years of age, who were receiving cancer treatment at a free-standing children's hospital in the Intermountain West of the United States. Children were requested to use the app for at least five days between clinical visits. Children's app-reported data were extracted from individual user accounts for analysis. Quantitative data were summarized descriptively. Qualitative data were summarized using qualitative content analysis. RESULTS: Nineteen children (6-12 years; median 8 years; 7 females) completed 107 days of app use. All children reported symptoms at least once, and 14 reported at least one day with a symptom of moderate or greater severity. Daily experiences reported through the app reflected children's engagement in usual childhood experiences while also describing life with cancer, including symptoms. CONCLUSIONS: Elementary school-age children are capable of self-reporting symptoms using a symptom reporting app, providing preliminary evidence for the potential benefits and clinical relevance of mHealth resources to support health outcomes within this population. PRACTICE IMPLICATIONS: Clinicians should anticipate and support ongoing symptom management needs between clinical visits. Children's self-reported data can promote a person-centered approach to symptom assessment and management.

Text Analysis of Suicide Risk in Adolescents and Young Adults.

OBJECTIVE: Suicide is of primary public concern for adolescents and young adults (AYAs) who commonly use social media platforms to express their suicidal thoughts and behaviors. Understanding how AYAs communicate their suicide-related thoughts and behaviors in texts can support early detection of suicide risk from their social media posts. Therefore, this study sought to identify themes relevant to suicide risk in AYAs and explore words or terms used by AYAs when they described suicidal thoughts and behaviors. METHOD: This secondary data analysis utilized an existing data set collected from 255 AYAs between 12 and 25 years of age, who provided brief descriptions of how they and their peers expressed their experiences of self-harm, suicidal thinking, and attempts. Text analysis was conducted using KH Coder software. Three-step theory of suicide was used to guide a content analysis to explore the key themes from the narratives. RESULTS: A word co-occurrence network with 24 clusters of words was generated from the text analysis. These word clusters were further grouped into pain or hopelessness, connectedness, and capacity to attempt suicide in the content analysis. Six subthemes corresponding to these three themes were identified to provide detailed information: psychological or physical pain, hopelessness, relationship, help seeking, methods, and outcomes. Moreover, several slang terms and acronyms (e.g., Kermit Sewage Slide, KMS) were also identified. CONCLUSIONS: The findings of this study, including themes and slang terms and acronyms, are valuable to facilitate the use of terms or phrases within social media texts to identify suicide risk in AYAs.

The Social Networks and Social Support of Siblings of Children with Cancer.

Siblings of children with cancer need support to ameliorate the challenges they encounter; however, little is known about what types and sources of support exist for siblings. This study addresses this gap in our understanding of the social networks and sources of support for adolescents with a brother or sister who has cancer. Additionally, we describe how the support siblings receive addresses what they feel are the hardest aspects of being a sibling of a child with cancer. During semi-structured interviews, siblings (ages 12-17) constructed ecomaps describing their support networks. Data were coded for support type (emotional, instrumental, informational, validation, companionship) and support provider (e.g., mother, teacher, friend). Network characteristics and patterns of support were explored. Support network size ranged from 3 to 10 individuals (M = 6 ± 1.9); siblings most frequently reported mothers as sources of support (n = 22, 91.7%), followed by fathers (n = 19, 79.2%), close friends (n = 19, 79.2%) and siblings (with or without cancer) (n = 17, 70.8%). Friends and brothers or sisters most often provided validation and companionship while instrumental and informational supports came from parents. This study provides foundational knowledge about siblings' support networks, which can be utilized to design interventions that improve support for siblings of children with cancer.

Symptom Profiles of Adolescents and Young Adults in Active Cancer Treatment by Diagnostic Groups.

BACKGROUND: The symptom experience of adolescents and young adults (AYAs) with cancer can differ based on the cancer and its treatments. A dearth of information exists on how symptoms differ by individual factors such as age and gender. OBJECTIVES: The objectives were to describe symptoms in AYAs across 5 cancer diagnostic groups by the individual factors of age group, sex, race/ethnicity, and time since diagnosis; and then to describe symptoms based on these individual factors within diagnostic groups. METHODS: This was a secondary analysis of baseline data pooled from 2 multisite studies on symptoms in AYAs with acute lymphoblastic leukemia, brain cancer, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcoma. Symptoms were assessed using the Computerized Symptom Capture Tool. RESULTS: Data from 118 AYAs with cancer, aged 13 to 29 years, were analyzed. Eight of the most commonly reported symptoms were reported in at least 4 diagnostic groups. Across diagnostic groups, symptoms varied little based on individual factors. Within groups, certain symptoms differed in frequency by individual factors. CONCLUSIONS: The lack of major differences in symptom prevalence based on individual factors across diagnostic groups supports a heterogeneous approach to symptom research with AYAs. The study identified individual factors within diagnostic groups worthy of further exploration. IMPLICATIONS FOR PRACTICE: Providers can facilitate discussions with AYAs about symptoms by being aware of common symptoms that may occur in certain cancer diagnostic groups and based on individual factors. The significance of the individual symptom experience should not be underestimated, emphasizing the importance of person-centered symptom assessment.

A Person-Centered Approach to Symptom Assessment and Management for Children and Adolescents Receiving Cancer Treatment.

OBJECTIVES: Discuss the clinical assessment and management of symptoms for children and adolescents receiving treatment for cancer with attention to a person-centered approach to care. DATA SOURCES: Review of currently published literature and guidelines pertaining to symptom assessment and management for children and adolescents receiving treatment for cancer. CONCLUSION: Symptoms such as pain, nausea, and fatigue are commonly reported by children and adolescents receiving cancer treatment and are associated with greater symptom burden. Symptom assessment should be tailored to the child or adolescent and include the child's or adolescent's preference for reporting symptoms and attention to the symptoms that are of greatest priority. Evidence-based guidelines for the management of symptoms, including pain and nausea, are available to guide symptom management interventions and should be tailored to provide person-centered care. IMPLICATIONS FOR NURSING PRACTICE: Nurses can lead efforts through clinical practice and research initiatives to advance person-centered symptom care for children and adolescents with cancer on a global level. Priorities for future work to advance person-centered symptom assessment and management include (1) identification of best practices for symptom assessment, (2) attention to social determinants of health and their subsequent influence on symptom outcomes, (3) compilation of evidence for management of less commonly reported symptoms, and (4) implementation of published clinical guidelines for symptom management in practice settings.

Contributions of Pediatric Oncology Nursing to Advance Care and Reduce Disparities Among Children and Adolescents with Cancer: Introduction.

OBJECTIVE: Highlight examples of pediatric oncology nursing's accomplishments during the past 2 decades with attention to specialized practice, patient/family education, research/evidence-based practice, and advocacy and how these efforts can be leveraged to reduce disparities in the cure and care of children and adolescents with cancer. DATA SOURCES: Review of currently published literature, guidelines, and websites documenting pediatric oncology nursing's contributions. CONCLUSION: Over the past 20 years, the collective work of pediatric oncology nurses across the world has improved the care of children with cancer and their families and brought attention to areas of disparities. IMPLICATIONS FOR NURSING PRACTICE: Although work remains to reduce disparities, current evidence from nursing science and practice is available to address disparities and guide advocacy efforts for children and their families as well as the nurses who care for them.

Communication of pain by school-age children with cancer using a game-based symptom assessment app: A secondary analysis.

PURPOSE: To evaluate the self-reported pain experiences of school-age children with cancer participating in a feasibility trial of a game-based symptom assessment app. METHOD: Nineteen children (median: 8 years, range 6-12 years old) receiving cancer treatment were recruited to complete five days of symptom tracking between clinical visits using a symptom assessment app. Children could report pain as a general symptom with the ability to further localize pain on an avatar. Children could also describe symptoms in response to the app's free-text questions or the app's diary. Descriptive statistics characterized reports of pain frequency, severity, bother, and location. Free-text responses were examined for pain-related statements and analyzed using content analysis. RESULTS: All 19 children documented pain on at least one day of app reporting between clinical visits. Pain was most frequently recorded as of mild severity and mild bother. Participants localized pain most frequently to the head, followed by the stomach, chest, extremities, and mouth. Eleven children documented 32 qualitative statements which included rich descriptions of pain-related topics (i.e., "my port hurts a little") and location (i.e., "my vision aching"). CONCLUSIONS: These results demonstrate that school-age children with cancer are willing to describe their ambulatory pain experiences on a game-based mobile app through quantitative reports and by using narrative descriptions. Additionally, these findings can potentially guide clinicians in using multiple approaches to elicit a clinically meaningful evaluation of pain in this population.

The Oncology Nursing Society Rapid Review and Research Priorities for Cancer Care in the Context of COVID-19.

OBJECTIVES: To identify research priorities addressing COVID-19 that build on the 2019-2022 Oncology Nursing Society (ONS) Research Agenda, in alignment with ONS's mission to promote excellence in oncology nursing and quality cancer care. METHODS & VARIABLES: Priority areas were identified using a multistep approach combining rapid review of the literature; consultation with experts/stakeholders; and review of priorities from other funding agencies, public health, and cancer-focused organizations. RESULTS: The rapid research response team identified five priority areas for research related to COVID-19. IMPLICATIONS FOR NURSING: Oncology nurses are well positioned to address the research priorities and cross-cutting themes identified through this review. The use of innovative methodologic approaches and attention to disparities are necessary to advance cancer care related to COVID-19.

Feasibility and acceptability of a game-based symptom-reporting app for children with cancer: perspectives of children and parents.

BACKGROUND: Children with cancer have difficulty identifying and describing the multiple symptoms they experience during hospitalization and between clinical encounters. Mobile health resources, including apps, are potential solutions to support child-centric symptom reporting. This study evaluated the feasibility and acceptability of a newly developed game-based symptom-reporting app for school-age children with cancer. PROCEDURE: Nineteen school-age children (6-12 years of age) receiving treatment for cancer at a COG institution in the Intermountain West of the United States used a game-based symptom-reporting app between clinical visits. Feasibility was evaluated through a summary of actual days of app use and interaction with each of the app's features. Children and their parents participated in interviews regarding the app's acceptability. RESULTS: Children used the app a median of 4 days (range 1-12) and interacted most frequently with the symptom reporting and the drawing features. Children enjoyed aspects of the app that supported their creativity and provided choices. Parents endorsed the interactive nature of the app and the value of the child providing his/her own report. Both children and parents identified additional opportunities to enhance the child's user experience. CONCLUSION: Study results support the preliminary feasibility and acceptability of the app. Children's and parents' responses supported the developmental relevance of the app and its role in enhancing the child's autonomy and serving as an outlet for creativity. Future directions include optimizing the child user's experience and investigating the app's role as a resource to enhance shared decision-making for symptom management.