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Children with acute and chronic illness undergo frequent, painful, and distressing procedures. This randomized controlled trial was used to evaluate the effectiveness of guided imagery (GI) versus virtual reality (VR) on the procedural pain and state anxiety of children and young adults undergoing unsedated procedures. We explored the role of trait anxiety and pain catastrophizing in intervention response. Children and young adults were recruited from the hematology, oncology, and blood and marrow transplant clinics at a children's hospital. Each study participant completed the GI and VR intervention during separate but consecutive unsedated procedures. Self-report measures of pain and anxiety were completed before and after the procedures. A total of 50 participants (median age 13 years) completed both interventions. GI and VR performed similarly in the management of procedural pain. Those with high pain catastrophizing reported experiencing less nervousness about pain during procedures that used VR than those using GI. State anxiety declined pre- to postprocedure in both interventions; however, the decrease reached the level of significance during the VR intervention only. Those with high trait anxiety had less pain during GI. In our sample, VR worked as well as GI to manage the pain and distress associated with common procedures experienced by children with acute or chronic illnesses. Children who are primed for pain based on beliefs about pain or because of their history of chronic pain had a better response to VR. GI was a better intervention for those with high trait anxiety. ClinicalTrials.gov NCT04892160; https://clinicaltrials.gov/ct2/show/NCT04892160.

Little is known about the impact of cancer on family relationships from the perspective of the pediatric cancer patient and their sibling(s). This study assessed and compared children's experiences of family relationships in patients receiving active cancer therapy, those who have completed therapy, and siblings. A cross‐sectional study of children with cancer and their siblings aged 8–17 years old was conducted. Children completed the PROMIS Pediatric Family Relationships short form and the Depressive Symptoms, Anxiety, and Peer Relationships short forms. The Mann–Whitney test assessed differences in Family Relationships scores between therapy groups, while the Wilcoxon signed‐rank test assessed differences between patients and siblings. An actor–partner interdependence model (APIM) was used to assess how patient and sibling variables were associated with their own and each others’ family relationships. Two hundred and sixty‐five children completed the assessments. Siblings of patients on‐therapy had worse family relationships than patients on‐therapy (P = 0.015). Family relationships of patients off‐therapy did not differ from their siblings or the patients on‐therapy. Family relationships scores did not differ between the sibling cohorts. The APIM found patient family relationships were impaired when their own peer relationships decreased and when either their own or their siblings had increased depressive symptoms. Sibling family relationships were impaired when their own depression increased, and when the patient counterpart was female, younger age, had less depressive symptoms, more anxiety or a diagnosis of leukemia/lymphoma (compared to solid tumor). Based on these findings, increased psychosocial resources for patients and siblings of children undergoing cancer therapy may be warranted. Little is known about how pediatric cancer may impact family relationships from the perspective of the pediatric cancer patient and their sibling(s). Our findings show that siblings of patients receiving therapy for cancer report worse family relationships than their ill brother or sister. In addition, a subject's family relationships can be affected by variables from both themselves and/or their brother or sister.

Background Sexual health (SH) is an important concern for adolescents and young adults (AYAs). This study determined current SH communication practices, barriers, and additional resources needed among pediatric oncology clinicians who treat AYAs. Methods A cross‐sectional survey was developed by the Children's Oncology Group (COG) AYA Committee and sent to pediatric oncologists (n = 1,987; 85.9%) and advanced practice providers (APPs, n = 326; 14.1%) at 226 COG institutions. Responses were tabulated and compared using tests of proportion and trend. Results The sample comprised 602 respondents from 168 institutions and was proportionally representative (468 oncologists [77.7%], 76 APPs [12.6%], 58 unidentified [9.6%]; institutional and provider response rates 74.3% and 26.2%, respectively). Almost half of respondents (41.7%) reported no/small role in SH care. Medical topics were discussed most often, including contraception (67.2%), puberty (43.5%), and sexual activity (37.5%). Topics never/rarely discussed included gender identity (64.5%), sexual orientation (53.7%), and sexual function (50.3%). Frequently cited communication barriers included lack of time, low priority, perceived patient discomfort, and the presence of a parent/guardian. Respondents endorsed the need for further education/resources on sexual function (66.1%), gender identity/sexual orientation (59.5%), and body image (46.6%). Preferred education modalities included dissemination of published guidelines (64.7%), skills training modules (62.9%), and webinars (45.3%). By provider type, responses were similar overall but differed for perception of role, barriers identified, and resources desired. Conclusions Many pediatric oncology clinicians play minimal roles in SH care of AYAs and most SH topics are rarely discussed. Provider‐directed education/training interventions have potential for improving SH care of AYA cancer patients. In this cross‐sectional survey, pediatric oncology clinicians recognized the importance of communicating with adolescents and young adults about sexual health (SH) but reported multiple barriers related to lack of content expertise and experience. Participants identified educational resources that would enhance SH communication, including published guidelines, training curricula/modules, and webinars.

Objectives/Goals: This study’s objective was to explore how a personal cancer diagnosis impacts the social connectedness (i.e., quality, structure, and functions of social relationships) of adolescent/young adult cancer survivors (AYACS, patients diagnosed with cancer between 15 and 39 years old), to inform intervention development fostering social health. Methods/Study Population: In this qualitative study (part of larger study assessing AYACS’ psychosocial challenges), participants were 15–25 years old at the time of cancer diagnosis and within 6 years of cancer diagnosis. Participants (and consenting parents of participants 18 years old and older) had to have fluency in written and spoken English and access to a computer or smartphone. Qualitative interviewers utilized an interview guide to conduct individual participant interviews. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was used to analyze data using a phenomenological approach to explore how a personal cancer diagnosis impacted social connectedness. Qualitative data related to social connectedness (corresponding to code “Relationships and Support”) are presented. Results/Anticipated Results: Three themes emerged through thematic analysis: (1) AYACS experience substantial heterogeneity related to social support needs; (2) AYACS leverage multiple relationships and resources when seeking support after a personal cancer diagnosis; (3) AYACS’ individual experiences were unique in that some noted positive changes, whereas others noted negative changes in relationships within social networks, specifically with peers. Discussion/Significance of Impact: AYACS experience various social support needs, and leverage multiple relationships when seeking social support. These translational findings create a foundation to develop AYACS social programming, foster peer relationships, and incorporate social science methods to aid intervention development to strengthen AYACS’ social connectedness.

Sexual function is a vital aspect of quality of life among adolescent and young adult (AYA) (ages 15-39 years) cancer survivors. Sexual function encompasses physical, psychosocial, and developmental factors that contribute to sexual health, all of which may be negatively impacted by cancer and treatment. However, limited information is available to inform the care of AYA cancer survivors in this regard. This scoping review, conducted by the Children's Oncology Group AYA Oncology Discipline Committee, summarizes available literature regarding sexual function among AYA cancer survivors, including relevant psychosexual aspects of romantic relationships and body image. Results suggest that, overall, AYA cancer survivors experience a substantial burden of sexual dysfunction. Both physical and psychosocial sequelae influence survivors' sexual health. Interventions to support sexual health and psychosexual adjustment after cancer treatment are needed. Collaborations between the Children's Oncology Group and adult-focused cooperative groups within the National Cancer Institute's National Clinical Trials Network are warranted to advance prospective assessment of sexual dysfunction and test interventions to improve sexual health among AYA cancer survivors.

Purpose Adolescents and young adults (AYAs) experience developmental transitions. AYA survivors of cancer are at risk for chronic health conditions due to treatment. This study examined developmental differences in AYA survivors’ health-related quality of life (HRQOL) between age groups and compared to population norms. Methods HRQOL was assessed in AYA survivors of cancer (diagnosed before age 30) in long-term follow-up. Cancer survivors who were 12–39 years old at survey completion and completed therapy ≥ 2 years ago were included. HRQOL was assessed using the PedsQL™ and FACT. Results Sample size was 155 survivors. PedsQL™ school functioning was worse in 15–17 year olds compared to 12–14 year olds (66.35 vs 77.60, p  = 0.012). Compared to population norms, PedsQL™ outcomes were only worse in survivors’ school functioning. Survivors’ 18–39 years old had FACT scores that were better than population norms for overall HRQOL (91.33 vs 80.1, p  < 0.001), and in physical (24.22 vs 22.7, p  < 0.001), social (23.46 vs 19.1, p  < 0.001), and functional well-being (22.94 vs 18.5, p  < 0.001). Regression analysis identified that survivors who were < 15 years old and had not relapsed, and survivors who were 15–18 years old and had ≥ 2 late effects are at highest risk of lower HRQOL. For older survivors the highest risk group for lower HRQOL were < 21 years old at survey completion, > 7 years old at diagnosis and > 6 years post therapy. Conclusion A trend in school functioning issues in older adolescent survivors emerged. Older survivors show improved HRQOL when compared to the general population. Those further off therapy are at risk of poor HRQOL.

Purpose Adolescents and young adults (AYAs) with cancer are challenged to manage complex medication regimens during treatment. The aims of the study are to (1) describe the medication self-management behaviors of AYAs with cancer and (2) examine the barriers and facilitators to AYAs’ optimal use of medications, including their self-efficacy to manage medications. Methods This cross-sectional study enrolled 30 AYAs (18–29 years) with cancer who were receiving chemotherapy. Participants electronically completed a demographic form, a health literacy screen, and the PROMIS Self-efficacy for Medication Management instrument. They completed a semi-structured interview to answer questions about their medication self-management behaviors. Results Participants (53% female, mean age = 21.9 y) had a variety of AYA cancer diagnoses. Over half (63%) had limited health literacy. Most AYAs had accurate knowledge about their medications and average self-efficacy for managing medications. These AYAs were managing an average of 6 scheduled and 3 unscheduled medications. Oral chemotherapy was prescribed for 13 AYAs; other medications were for prevention of complications and symptom management. Many AYAs relied on a parent for obtaining and paying for medications, used multiple reminders to take medications, and used a variety of strategies to store and organize medications. Conclusion AYAs with cancer were knowledgeable and confident about managing complex medication regimens but needed support and reminders. Providers should review medication-taking strategies with AYAs and ensure a support person is available.

Purpose Adolescent and young adult cancer survivors (AYACS) are patients diagnosed with cancer between 15 and 39 years of age. AYACS are often derailed from planned educational and occupational endeavors due to disruption from cancer treatment and its consequences. The study objective was to examine how a personal cancer diagnosis impacted AYACS’ experiences related to these endeavors. Methods Semi-structured interviews were conducted as part of a larger study assessing psychosocial challenges among a younger AYACS subset aged 15–25 years old at the time of cancer diagnosis. Interviews were coded based on responses and were used to develop themes related to educational and occupational endeavors. Results Data were collected from 35 participants. Five themes emerged: (1) Pauses in educational attainment had a detrimental effect on educational goals for some participants, but further solidified and sculpted educational plans for others; (2) Although participants experienced challenges accomplishing educational goals, supportive school environments helped surmount these challenges; (3) Participants reflected on rethinking career aspirations, though some desired to pursue the same occupation planned before cancer diagnosis; (4) Participants experienced challenges, including physical and cognitive limitations, upon returning to work; and (5) Participants valued autonomy and normalcy through work and appreciated supportive and flexible work environments. Conclusions AYACS prioritize professional achievement, yet encounter challenges in achieving professional goals. Our findings create a foundation for developing and testing prospective interventions to promote continuance of school and work during cancer treatment when feasible, and proactive reintegration strategies for those who paused professional goals due to cancer treatment.

Educational programs to address specific needs of adolescent and young adult (AYA) childhood cancer survivors are scarce. A quarterly speaker series and 1-day conference involved presentations by oncology experts to increase knowledge of AYA cancer survivorship issues and awareness of community programs and resources. Pre- and post-evaluations were administered to determine the program's efficacy. Most rated program satisfaction as “moderately high” to “high” and having met expectations. Self-report ratings indicated a significant increase in perceived knowledge of survivorship topics and resource awareness for AYA childhood cancer survivors and caregivers. Nearly one third attended more than one presentation, indicating that the educational program was beneficial to them. This program was effective in increasing self-reported survivorship education for AYA survivors of childhood cancer, families, and health care providers.

Purpose To identify factors associated with parent activation in parents of children undergoing pediatric hematopoietic stem cell transplant (HSCT) in the 6 months following HSCT, and to address if their association with parent activation changes over time. Methods Measures for this analysis, including the Parent-Patient Activation Measure (Parent-PAM), were completed by parents ( N  = 198) prior to their child’s HSCT preparative regimen and again at 6 months post-HSCT. Clinical data were also collected. A repeated measures model was built to estimate the association between clinical and demographic factors and parent well-being on Parent-PAM scores. Interactions with time were considered to test for changing effects over time. Results Throughout the HSCT course, older parent age was associated with lower Parent-PAM scores ( β  = −0.29, p  = 0.02) and never being married was associated with higher scores (versus married, β  = 12.27, p  = 0.03). While higher parent emotional functioning scores were not associated with activation at baseline, they were important at 6 months (baseline, β  = −0.002, p  = 0.96; interaction, β  = 0.14, p  = 0.03). At baseline, longer duration of illness was associated with increased activation, but this effect diminished with time (baseline, β  = 3.29, p  = 0.0002; interaction, β  = −2.40, p  = 0.02). Activation levels dropped for parents of children who went from private to public insurance (baseline, β  = 2.95, p  = 0.53; interaction, β  = −13.82, p  = 0.004). Clinical events did not affect Parent-PAM scores. Conclusions Our findings reveal important changes in the factors associated with parent activation in the first 6 months after pediatric HSCT. These findings may reflect the emotional and financial toll of pediatric HSCT on parent activation.