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.

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.

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.

The Effect of Screen Viewing Duration and Self-Efficacy in Limiting Screen Viewing on Loneliness in Adolescent-Parent Dyads: An Application of the Actor-Partner Interdependence Model.

PURPOSE: To examine the influence of parents' screen viewing (SV) duration and self-efficacy in limiting SV on their adolescents' loneliness, and to explore the influence of adolescents' SV duration and self-efficacy in limiting SV on parents' loneliness. DESIGN AND METHODS: A cross-sectional survey with 1573 adolescent-parent dyads from the Family Life, Activity, Sun, Health, and Eating Study were included in this study. The actor-partner interdependence models were used to examine the effect of each dyadic partner's SV duration and self-efficacy in limiting SV on their own and their dyadic partner's loneliness within adolescent-parent dyads. RESULTS: There were no significant actor and partner effects of SV duration on loneliness for both parents and adolescents (all ps > 0.05). Adolescents' self-efficacy in limiting SV was associated with less loneliness of their own (adolescents' actor effect: ß = -0.35, SE = 0.04, p < .01) and that of their parents (adolescents' partner effect: ß = -0.15, SE = 0.04, p = .001). Parents' self-efficacy in limiting SV was negatively associated with their own loneliness (parents' actor effect: ß = -0.25, SE = 0.05, p < .01), but not with their adolescents' loneliness (parents' partner effect: ß = -0.06, SE = 0.05, p = .189). CONCLUSIONS: Adolescents' own self-efficacy in limiting SV has a significant impact on their parents' loneliness. Parents' self-efficacy in limiting SV, however, did not influence their adolescents' loneliness. PRACTICE IMPLICATIONS: Our results highlight the importance of providers screening for loneliness as part of the plan of care for adolescents and parents who might have excessive SV, with close attention given to those who possess less self-efficacy in controlling their SV.

Utah Cancer Survivors: A Comprehensive Comparison of Health-Related Outcomes Between Survivors and Individuals Without a History of Cancer.

Assessments of cancer survivors' health-related needs are often limited to national estimates. State-specific information is vital to inform state comprehensive cancer control efforts developed to support patients and providers. We investigated demographics, health status/quality of life, health behaviors, and health care characteristics of long-term Utah cancer survivors compared to Utahans without a history of cancer. Utah Behavioral Risk Factor Surveillance System (BRFSS) 2009 and 2010 data were used. Individuals diagnosed with cancer within the past 5 years were excluded. Multivariable survey weighted logistic regressions and computed predictive marginals were used to estimate age-adjusted percentages and 95 % confidence intervals (CI). A total of 11,320 eligible individuals (727 cancer survivors, 10,593 controls) were included. Respondents were primarily non-Hispanic White (95.3 % of survivors, 84.1 % of controls). Survivors were older (85 % of survivors ≥40 years of age vs. 47 % of controls). Survivors reported the majority of their cancer survivorship care was managed by primary care physicians or non-cancer specialists (93.5 %, 95 % CI = 87.9-99.1). Furthermore, 71.1 % (95 % CI = 59.2-82.9) of survivors reported that they did not receive a cancer treatment summary. In multivariable estimates, fair/poor general health was more common among survivors compared to controls (17.8 %, 95 % CI = 12.5-23.1 vs. 14.2 %, 95 % CI = 12.4-16.0). Few survivors in Utah receive follow-up care from a cancer specialist. Provider educational efforts are needed to promote knowledge of cancer survivor issues. Efforts should be made to improve continuity in follow-up care that addresses the known issues of long-term survivors that preclude optimal quality of life, resulting in a patient-centered approach to survivorship.

Symptom self-management strategies reported by adolescents and young adults with cancer receiving chemotherapy.

PURPOSE: Adolescents and young adults (AYAs) with cancer experience multiple symptoms related to their cancer and its treatment which can negatively impact their development and quality of life. An understanding of the strategies AYAs use to self-manage their symptoms is limited. This study described symptom self-management strategies reported by AYAs with cancer using an iPad-based symptom heuristics tool, the Computerized Symptom Capture Tool. METHODS: The study used a cross-sectional, descriptive design. AYAs' free text responses relating their symptom self-management strategies were explored using qualitative content analysis procedures. Strategies were examined overall and by individual symptoms. RESULTS: Seventy-two AYAs 13-29 years of age (mean 18.4 years) reported a total of 772 symptom self-management codes for 585 individual symptoms. These codes were organized into 119 distinct categories. These categories were further organized into 16 subthemes and 3 overarching themes: "Things I Take … or Not" (n = 209 codes), "Physical Care Things I Do" (n = 367 codes), and "Psychosocial Care Things I Do" (n = 132 codes). AYAs frequently reported strategies from all three of the symptom self-management themes to manage individual symptoms; however, "medications" was the most frequently reported strategy. CONCLUSION: AYAs receiving chemotherapy use multiple common, yet uniquely individual symptom self-management strategies. AYAs' reported strategies range from those that involve shared management with a healthcare provider to those that AYAs implement independently. The study provides a foundation for future research to empower AYAs to engage in symptom self-management and to guide healthcare providers as they discuss developmentally relevant and evidence-based symptom self-management strategies.

Comparison of good days and sick days of school-age children with cancer reflected through their drawings.

PURPOSE: Childhood cancer disrupts children's daily life experiences. Eliciting children's perspectives regarding their life experiences during cancer treatment can be challenging. The purpose of this study was to characterize elementary school-age children's "good days" and "sick days" through their drawings. METHODS: This study used draw-and-tell interviews, a developmentally sensitive arts-based technique that supports children's recall and communication of information, facilitating a deeper understanding of children's personal interpretation and meaning of a given phenomenon of interest. Children were asked to draw pictures representing both a "good day" and a "sick day." Following completion of each drawing, research team members used a semi-structured interview guide to elicit children's explanations of their pictures. Content analysis techniques were used to descriptively characterize children's drawings followed by thematic analysis to identify commonalities. RESULTS: Participants were 27 children 6.33-12.83 years of age (mean 9.16 years; SD = 1.9) receiving treatment for cancer. "Good day" and "sick day" pictures were similar with regards to the presence of the child, the inclusion of other individuals, and the type of art medium used. Children's pictures characterized "good days" as being happy, outside in sunny weather, and engaged in activities. In contrast, "sick days" were characterized as feeling sad, lying down or reclining, and experiencing illness-related symptoms. CONCLUSIONS: Children's drawings illustrate their capacity to provide rich personal data related to their "good days" and "sick days." Incorporating arts-based strategies in the clinical setting may provide a child-centric strategy to understand the child's perspective and direct interventions.

Symptoms and Symptom Clusters Identified by Adolescents and Young Adults With Cancer Using a Symptom Heuristics App.

Adolescents and young adults (AYAs) with cancer experience multiple distressing symptoms during treatment. Because the typical approach to symptom assessment does not easily reflect the symptom experience of individuals, alternative approaches to enhancing communication between the patient and provider are needed. We developed an iPad-based application that uses a heuristic approach to explore AYAs' cancer symptom experiences. In this mixed-methods descriptive study, 72 AYAs (13-29 years old) with cancer receiving myelosuppressive chemotherapy used the Computerized Symptom Capture Tool (C-SCAT) to create images of the symptoms and symptom clusters they experienced from a list of 30 symptoms. They answered open-ended questions within the C-SCAT about the causes of their symptoms and symptom clusters. The images generated through the C-SCAT and accompanying free-text data were analyzed using descriptive, content, and visual analyses. Most participants (n = 70) reported multiple symptoms (M = 8.14). The most frequently reported symptoms were nausea (65.3%), feeling drowsy (55.6%), lack of appetite (55.6%), and lack of energy (55.6%). Forty-six grouped their symptoms into one or more clusters. The most common symptom cluster was nausea/eating problems/appetite problems. Nausea was most frequently named as the priority symptom in a cluster and as a cause of other symptoms. Although common threads were present in the symptoms experienced by AYAs, the graphic images revealed unique perspectives and a range of complexity of symptom relationships, clusters, and causes. Results highlight the need for a tailored approach to symptom management based on how the AYA with cancer perceives his or her symptom experience.

Feasibility and acceptability of an iPad application to explore symptom clusters in adolescents and young adults with cancer.

BACKGROUND: The aim of this study was to evaluate the feasibility and acceptability of a computer-based symptom cluster heuristics tool designed to explore symptom clusters experienced by adolescents and young adults (AYAs) with cancer. The Computerized Symptom Capture Tool (C-SCAT) is a newly developed iPad application, which combines graphical images and free text responses in an innovative heuristics approach to explore symptoms and symptom clusters. PROCEDURE: Seventy-two AYAs (13-29 years of age) with cancer at five institutions across the US completed the C-SCAT 24-96 hours after the initial chemotherapy dose in a chemotherapy cycle. RESULTS: All participants completed the C-SCAT successfully in a mean of 25 minutes, with 74% reporting that the final image was an accurate or very accurate representation of their symptom experience. Little clarification/coaching was necessary while completing the C-SCAT. Few technical problems were encountered. Participants judged the C-SCAT questions to be clear and endorsed ease of following instructions, typing, and drawing. CONCLUSIONS: The C-SCAT demonstrated feasibility and acceptability. With refinement based on study results, the C-SCAT has potential to: (a) empower AYAs to communicate their symptom experience and partner with providers in their care; (b) improve symptom management and ameliorate distress; and (c) translate to use with other highly symptomatic populations.

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.

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.

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.

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.

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.

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.

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.

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.