Young Adult Survivors Research Articles

DISP-16. NUTRITIONAL SCREENING OF PEDIATRIC CENTRAL NERVOUS SYSTEM TUMOR SURVIVORS REVEALS HIGH PREVALENCE OF MALNOURISHMENT WITH SOCIODEMOGRAPHIC AND CLINICAL RISK FACTORS

Abstract Adult survivors of pediatric central nervous system (CNS) tumors are at the highest risk for morbidity and late mortality among all childhood cancers, partially due to chronic health conditions intersected with environmental and lifestyle factors. We aimed to study the prevalence of and risk factors for malnourishment (underweight, overweight, obese) amongst adult survivors of pediatric CNS tumors. We conducted a cross-sectional study assessing young adults (18-39 years) previously treated for pediatric CNS tumors who were followed in our survivorship clinic during 2016-2021. Sociodemographic, clinical, and treatment information was extracted from medical records with BMI status, per CDC guidelines, obtained from the most recent clinic visit. Data was assessed using one-way ANOVA, fishers exact test, and multivariable logistical regression. We identified 198 survivors (53% female, 84.3% white) categorized as underweight (4.0%), normal weight (40.9%), overweight (26.8%), obese (20.2%), and severely obese (8.1%). Patients were median age 8 years [4-12] at diagnosis and 24 years [20-28] at follow-up. Most common primary diagnosis and tumor location was low grade glioma (50.5%) and posterior fossa (39.4%) with 90.4% receiving surgery, 51.5% chemotherapy, and 52.5% radiotherapy. Male sex (OR 2.376, p = 0.006), hypothalamic/optic pathway tumor location (OR 2.362, P = 0.031), and radiation therapy (OR 2.844, p = 0.005) were associated with increased overweight/obesity risk, while chemotherapy (OR 0.363, p = 0.006) was associated with decreased risk. Male sex (OR 0.511, p = 0.007) and white ‘race’ (OR 0.166, p = 0.022) were associated with decreased underweight risk. The majority of young adult survivors seen in our clinic were not healthy weight by BMI, and the distribution of BMI groups appears comparable to contemporary studies of the general young adult U.S. population. The prevalence of malnourishment amongst PNO survivors warrants universal screening efforts with more accurate determinants of body composition than BMI, risk stratification, as well as targeted interventions.

Premature aging as an accumulation of deficits in young adult survivors of pediatric cancer.

We aimed to characterize premature aging as an accumulation of deficits in survivors of pediatric cancer compared with community controls and examine associations with host and treatment factors, neurocognition, and mortality. Pediatric cancer survivors (n = 4000, median age = 28.6, interquartile range [IQR] = 23-35 years; 20 years postdiagnosis: IQR = 15-27), and community participants without a history of cancer serving as controls (n = 638, median age = 32, IQR = 25-40 years) completed clinical assessments and questionnaires and were followed for mortality through April 30, 2020 (mean [SD] follow-up = 7.0 [3.4] years). A deficit accumulation index (DAI) score was calculated from 44 aging-related items including self-reported daily function, psychosocial symptoms, and health conditions. Items were weighted from 0 (absent) to 1 (present and/or most severe), summed and divided by the total yielding a ratio (higher = more deficits). Scores less than 0.20 are robust, and 0.06 is a clinically meaningful difference. Linear regression compared the DAI in survivors and controls with an age*survivor or control interaction. Logistic regression and Cox-proportional hazards estimated the risk of neurocognitive impairment and death. Models were minimally adjusted for age, sex, and race and ethnicity. The adjusted mean DAI among survivors at age 30 years was 0.16 corresponding to age 63 years in controls (33 years premature aging; β = 0.07, 95% confidence interval [CI] = 0.06 to 0.08; P < .001). Cranial and abdominal radiation, alkylators, platinum, and neurosurgery were associated with worse DAI (P ≤ .001). Higher scores were associated with increased risk of neurocognitive impairment in all domains (P < .001) and increased risk of death (DAI = 0.20-0.35, hazard ratio = 2.80, 95% CI = 1.97 to 3.98; DAI ≥ 0.35, hazard ratio = 5.08, 95% CI = 3.52 to 7.34). Pediatric cancer survivors experience clinically significant premature aging. The DAI may be used to identify survivors at greatest risk of poor health outcomes.

Inhibition explains the relationship between the efficiency of brain networks and adaptive outcomes in pediatric brain tumor survivors.

Research has found altered brain network connectivity in pediatric brain tumor survivors. Efficient brain networks are critical for performing complex behaviors involved in adaptive functioning (AF). The present study explored relationships between structural brain network characteristics and AF in survivors. We examined whether this relationship is mediated by inhibition and cognitive flexibility, important cognitive abilities for AF. Thirty-seven young adult survivors and 37 matched healthy controls (HC; overall Mage = 23.1, SD = 4.9) underwent neuropsychological assessment. Informants completed the Scales of Independent Behavior-Revised (SIB-R) interview. Color-Word Interference Inhibition and Inhibition-Switching from the Delis-Kaplan Executive Functioning System measured inhibition and cognitive flexibility performance. Deterministic tractography was performed on diffusion-weighted imaging, the Automated Anatomical Labeling (AAL) atlas defined nodes, and edges were the average fractional anisotropy between nodes. Global efficiency (GE), average clustering coefficient (CC), and density were computed. Partial correlations and analysis of indirect effects were conducted. There were significant relationships between GE and all SIB-R scales, but findings with CC were limited to two subscales. Inhibition was moderately related to GE, but this was no longer significant after Holm's correction. Cognitive flexibility was not found to be related to graph metrics. Finally, significant indirect effects were found such that inhibition explained the relationship between GE and SIB-R Motor and Social/Communication. Based on these findings, higher levels of brain network integration, as measured by GE, is related to inhibition in survivors, which facilitates proficient adaptive motor and social/communication skills. Future work should investigate tumor location and treatment factors as potential moderators of the relationships found in this study to better understand specific risk factors in this group. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Reduced-Intensity Conditioning Mitigates Risk for Primary Ovarian Insufficiency but Does Not Decrease Risk for Infertility in Pediatric and Young Adult Survivors of Hematopoietic Stem Cell Transplantation

Hematopoietic stem cell transplantation (HSCT) is a curative therapy for many pediatric malignant and nonmalignant conditions. Gonadal insufficiency or infertility is present in almost all HSCT survivors who received a myeloablative conditioning (MAC) regimen. Reduced-intensity conditioning (RIC) regimens are being increasingly used in medically fragile patients or in patients with nonmalignant diagnoses to limit the toxicities associated with HSCT; however, the short-term and long-term gonadal toxicity of RIC regimens in pediatric and young adult survivors remains unknown. In this study, we compared the prevalence of gonadal insufficiency and infertility among pubertal and postpubertal pediatric and young adult survivors of HSCT who received a RIC regimen versus those who received a MAC regimen. Twenty-three females (RIC, n=8; MAC, n=15) and 35 males (RIC, n=19; MAC, n=16) were included in this single-center, retrospective cross-sectional study. Eligible patients were those with available laboratory results who were ≥1 year post-HSCT, age <40 years, and pubertal or postpubertal as assessed by an endocrinologist. Follicle-stimulating hormone (FSH), luteinizing hormone (LH), estradiol, and anti-Müllerian hormone (AMH) levels were measured in females, and FSH, LH, total testosterone, and inhibin B (InhB) levels were measured in males. Twenty-one males (RIC, n=11; MAC, n=10) underwent semen analysis through a separate consent. Parametric and nonparametric analyses were undertaken to compare the RIC and MAC groups. Female patients who received RIC were less likely than those who received MAC to develop primary ovarian insufficiency, as demonstrated by elevated FSH (P=.02) and low estradiol (P=.01) or elevated LH (P=.09). Most females in the RIC (75%) and MAC (93%) groups had low AMH levels, indicating low or absent ovarian reserve, with no significant difference between the groups (P=.53). In males, there were no significant differences between the 2 groups in the prevalence of abnormal FSH, LH, testosterone, or InhB levels. Ten of 11 RIC males (91%) and 10 of 10 MAC males (100%) had azoospermia or oligospermia, at a median time to semen analysis from HSCT of 3.7 years (range, 1.3 to 12.2 years). RIC may pose less risk than MAC for primary ovarian insufficiency among female survivors of HSCT; however, both female and male recipients of either RIC or MAC regimens are at high risk for infertility. In the largest reported series of semen analyses of pediatric and young adult male recipients of RIC, azoospermia or oligospermia was found in nearly all (91%) RIC survivors. All patients undergoing HSCT should receive counseling about the high risk of gonadal toxicity, and efforts should be made to preserve fertility in patients undergoing either RIC or MAC.

Long-Term Toxicities of Adolescent and Young Adult Survivors of Cervix Cancer Who Underwent Radiation Therapy: A Cross-Sectional Analysis

<h3>Purpose/Objective(s)</h3> Survivors of adolescent and young adult (AYA) cervical cancer who undergo radiation therapy are at risk of significant long-term health sequelae. This study seeks to evaluate long-term toxicities and their impacts on survivors. <h3>Materials/Methods</h3> Patients treated for cervical cancer with radiation therapy between ages 18-39 in the years 2000-2009 from any center in our province were eligible. 100 patients with current mailing addresses were identified and mailed a package containing a questionnaire devised by a multi-disciplinary team including open-ended questions, and validated patient-reported quality of life surveys for cervical cancer patients, the EORTC QLQ-30 and CX-24. <h3>Results</h3> A total of 22 responses were received. The mean age of respondents was 53.1 years (range: 41-62). The mean age at treatment was 35.6 years (range: 25-40), and the average time since treatment was 17.0 years (range: 12-22). The majority (73%) were married or common-law. A relationship status change following cancer treatment was reported by 32%, and 60% noted a change in sexual function/desire as the cause. Most respondents (77%) had children prior to treatment, with a mean of 2 children (range: 1-4). A single respondent had a child after treatment through adoption. Fertility preservation prior to treatment was discussed with 41% of respondents and offered to 36%. Nearly all respondents (86%) had used hormone replacement (HRT) therapy since treatment completion, with 23% still using HRT. EORTC scores are calculated on a scale of 0-100 with higher scores being positive for quality of life and functioning and worse for symptoms. Mean Quality of Life score was rated as 63.9. Most patients maintained adequate functional status, with mean scores of 84.4, 83.3, 67.1, 70.6, and 77 for physical, role, emotional, cognitive, and social functioning. Elevated symptom scores include sexual/vaginal functioning (53.5), sexual worry (55.6), diarrhea (38.1), body image concerns (41.7), peripheral neuropathy (39.7), and menopausal symptoms (38.1). A wide array of bothersome symptoms were reported by patients in the open-ended questions. Most frequent (32%) was symptoms related to sexual and vaginal health. Other common symptoms include permanent bowel changes (27%), bladder changes (27%), mood disorders (27%), and lymphedema (18%). Multiple respondents (18%) commented on regrets for not pursuing fertility preservation or explicit statements that more thorough fertility counselling should be offered prior to treatment. <h3>Conclusion</h3> Long-term survivors of AYA cervix cancer who participated in this study have significant late toxicities. Many patients experience ongoing sexual health concerns, GI issues, body image concerns, mood disorders, premature menopausal symptoms and fertility issues. Respondents in our study indicated a desire for improved fertility counselling.

Development and initial testing of TOGETHER-YA: an eHealth-delivered and group-based psychosocial intervention for young adult cancer survivors.

This study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2). TOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction). Focus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants "agreed" to "strongly agreed" with positive statements about the weekly sessions and the overall program. TOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL. NCT05048316, September 17, 2021; NCT05054569, September 23, 2021.

Prevalence and Determinants of Return to Work as a Patient-Centered Outcome in Survivors of Hematopoietic Cell Transplantation.

Employment is an important indicator of health and functional recovery for hematopoietic cell transplantation (HCT) survivors and has significant social and economic impacts. Cancer survivors treated with conventional non-HCT therapy are known to be at a higher risk of unemployment or not returning to work after completion of therapy compared with the control population. However, the literature on return-to-work challenges among HCT survivors remains limited. Here we summarize the evidence on prevalence and determinants of return-to-work challenges among HCT survivors using previously published literature. Findings from previously published research show that return to work or unemployment is a major concern among HCT survivors, especially for allogeneic HCT recipients, and prior studies have identified several modifiable risk factors associated with it. Survivors' post-HCT employment status is significantly associated with quality of life, impacting physical, emotional, social, and financial aspects of their lives. We also highlight the gaps in current knowledge such as limited information on employment outcomes of childhood, adolescent, and young adult HCT survivors; work-related challenges among employed HCT survivors; consequences of work-related challenges; and interventions to improve return to work among HCT survivors. Findings highlighted in this review make a strong case of a multidisciplinary return-to-work support for HCT survivors to properly address their needs.

The Impact of Cancer-Related Financial Toxicity on Reproductive Concerns and Family-Building Decision-Making in Post-Treatment Survivorship.

Purpose: Adolescent and young adult (AYA) survivors are at-risk for cancer-related financial difficulties (i.e., financial toxicity [FT]). Family building after cancer often requires reproductive medicine or adoption with high costs; AYAs experience financial barriers to family building. This study evaluated the relationships among cancer FT, reproductive concerns, and decision-making processes about family building after cancer. Methods: AYA female (AYA-F) cancer survivors completed a cross-sectional survey including measures of FT, reproductive concerns, decisional conflict about family building, and decision-making self-efficacy. Differences across FT subgroups (i.e., no/mild, moderate, and severe FT) were tested. Linear regression evaluated the relationships between FT and reproductive concerns and decision-making processes. Results: Participants (N = 111) averaged 31.0 years (standard deviation [SD] = 5.49), 90% were nulliparous, and 84% were employed full/part-time. The overall FT levels were in the "moderate" range (M = 20.44, SD = 9.83); 48% worried quite a bit or very much about financial problems because of cancer. AYA-Fs reporting severe FT (24% of sample) experienced higher levels of reproductive concerns compared with those reporting no/mild and moderate FT. Those reporting moderate FT (46% of sample) reported greater decisional conflict about family-building options, compared with the no/mild FT subgroup. Both moderate and severe FT subgroups reported lower decision-making self-efficacy compared with the no/mild FT subgroup. In separate models controlling for covariates, greater FT related to higher levels of reproductive concerns (B = -0.39, p < 0.001), greater decisional conflict about family building (B = -0.56, p = 0.02), and lower decision-making self-efficacy (B = 0.60, p = 0.01). Conclusions: Given the high costs of reproductive medicine and adoption, fertility counseling pre- and post-treatment must address survivors' financial concerns and barriers.

Psychosexual Development and Sexual Functioning in Young Adult Survivors of Childhood Cancer

Childhood cancer and its treatment can impair survivors' development throughout life, particularly psychosexual development, which can be affected in complex ways and is crucial for survivors' well-being. Yet, research is scarce. This study assessed psychosexual development (milestone attainment, age at attainment, perceived timing) in young adult survivors of childhood cancer. It further examined sexual satisfaction and sexual functioning, and whether survivors' perceived timing of sexual debut was related to satisfaction or functioning. A registry-based nationwide survey was completed by N=492 German survivors of childhood cancer (age 21-26 years, 6-26 years postdiagnosis). They completed standardized measures of psychosexual milestones (eg, first kiss, sexual debut), sexual satisfaction, and sexual functioning. Psychosexual development was compared to normative data (N=1,533). Psychosexual development, sexual satisfaction, and sexual functioning were the primary outcome measures. Psychosexual development was characterized in three ways: milestone attainment (yes/no), age at attainment, perceived timing ("right" time, too early/late). Milestone attainment was comparable to normative data, except for sexual debut: Survivors were less often experienced (82.5% vs 88%; P=.002) and older at sexual debut (17.4 vs 16.2 years; g=0.55), but most survivors (58.3%) perceived their timing as "right." Survivors of brain tumors were least likely to have had their sexual debut, but if experienced age at sexual debut was similar to other survivors. Female survivors were somewhat more experienced than males (eg, first kiss, first relationship; <10% difference), but they were somewhat older when they first kissed (g=0.26). Age at diagnosis was unrelated to milestone attainment. Perceived early/late sexual debut was related to lower satisfaction in female survivors (P=.026), but unrelated to sexual dysfunction. Instead, partnered men reported particularly low dysfunction whereas women reported similar levels of sexual dysfunction irrespective of their relationship status (P=.049). Overall, sexual functioning was favorable (60.2%: not/barely problematic). Most survivors reported favorable sexual satisfaction and functioning, but a minority of survivors may need supportive services. This project represents one of few large-scale studies on psychosexual development in childhood cancer survivors relative to normative data, and is the first to link development to sexual satisfaction/functioning. Assessing satisfaction/functioning with validated, but brief measures limits detailed insights, but was inclusive of any sexual orientation. Medical background information based on registry data was limited. Results showed normative psychosexual development (except for sexual debut) in most survivors. A self-determined attitude toward sexuality (ie, engaging in sexual activities at the "right" time) may generally determine positive sexual experiences. Lehmann V, Gerhardt CA, Baust K, et al. Psychosexual Development and Sexual Functioning in Young Adult Survivors of Childhood Cancer. J Sex Med 2022;19:1645-1654.

Adolescent and young adult survivors of cancer: relationship between resilience and post-traumatic growth

Adolescent and young adult survivors of cancer: relationship between resilience and post-traumatic growth

Pre-Treatment Left Ventricular Ejection Fraction Assessment and Long-Term Cardiovascular Outcomes in Adolescent and Young Adult Lymphoma Survivors.

Purpose: Anthracyclines can cause long-term cardiovascular (CV) morbidity, especially in long-term Adolescent and Young Adult (AYA) lymphoma survivors. Pre-treatment left ventricular ejection fraction (LVEF) evaluation is recommended, although its utility in AYA is not established. We sought to determine the pre-treatment LVEF assessment practices in AYA lymphoma survivors treated with anthracyclines and factors associated with long-term cardiotoxicity. Methods: Through an electronic health records review, we retrospectively identified AYA lymphoma survivors with ≥5 years of follow-up postanthracycline treatment. Pre-treatment and follow-up data were abstracted. CV health conditions were defined as risk factors for CV disease and confirmed CV diagnoses. Survivors who had new CV health conditions at follow-up were compared to those who were not using descriptive statistics and logistic regression. Results: One hundred fifteen AYA lymphoma survivors met the study criteria. Pre-treatment LVEF assessment did not affect chemotherapy decisions. Survivors with pre-treatment CV evaluation had mean follow-up since diagnosis of 8 ± 3.3 years, while survivors without it had 10.3 ± 4.2 years, p < 0.05. Survivors with pre-treatment LVEF assessment received lower cumulative anthracycline dose (240.4 mg/m2 vs. 280.1 mg/m2, p < 0.05) and fewer cycles of chemotherapy (4.8 ± 1.5 vs. 5.6 ± 1.2, p < 0.05). Body mass index (BMI) category at diagnosis and follow-up, in addition to age were associated with development of new CV health conditions, pre-treatment LVEF evaluation was not. Conclusion: Pre-treatment LVEF assessment for AYA lymphoma survivors does not impact oncologic treatment decisions or development of CV health conditions. It may be more valuable to assess and modify CV risk factors such as BMI for CV disease prevention.

5: Long Term Toxicities of Adolescent and Young Adult Survivors of Cervix Cancer Who Underwent Radiation Therapy: A Cross-Sectional Analysis

5: Long Term Toxicities of Adolescent and Young Adult Survivors of Cervix Cancer Who Underwent Radiation Therapy: A Cross-Sectional Analysis

A-262 Cognitive and Occupational Status of Young Adult Survivors of Leukemia/Lymphoma Prior to Transition to Adult-Centered Care

Abstract Objective: Treatment for pediatric acute lymphoblastic leukemia/non-Hodgkin’s lymphoma (ALL/NHL) confers risk of long-term cognitive sequelae, though many survivors lose access to neuropsychological monitoring once they transition to adult-centered care. The objective of this study is to describe the frequency/severity of cognitive concerns of ALL/NHL survivors who are about to transition care in relation to occupational status and school service utilization. Method: Thirty-eight young adult (x ̅=19.5 years), primarily Latino, survivors of ALL/NHL underwent neuropsychological evaluation. Domains included working memory (Wechsler Adult Intelligence Scale–Fourth Edition [WAIS-IV] Digit Span [DS]), processing speed (Symbol Digit Modalities Test [SDMT]/WAIS-IV Coding), and sustained attention (Conners Continuous Performance Test–Third Edition [CPT-3]). Occupational status was determined during interview. Results: Survivors exhibited lower working memory (z=-4.44, p=.00001) and processing speed (SDMT z=-3.82, p=.00014; CPT-3 Hit Reaction Time z=2.57, p=.01) compared to normative expectations. Nearly 90% of the sample was in school and/or working at the time of evaluation. Of those attending higher education (74%), over 35% performed at least one standard deviation below the mean across DS and SDMT/Coding (which is over twice as frequent as in the normative population), though less than 15% were receiving accommodations. Conclusion: Despite increased risk of working memory and processing speed deficits, the majority of our sample was in school and/or working at the time of evaluation. While this confirms the resiliency of young adult survivors, their need for supportive services that address cognitive barriers may be under-recognized. Neuropsychological monitoring in this age group remains critical to create avenues for support during the transition to adult-centered care.

A-268 Personal Adjustment of Young Adult Survivors of Leukemia/Lymphoma: Examining the Association with Cognition and Sex

Abstract Objective: Survivors of pediatric acute lymphoblastic leukemia/non-Hodgkin’s Lymphoma (ALL/NHL) are at risk of cognitive sequelae of treatment, as well as psychosocial distress. The objectives of this study were to (1) describe self-perceptions of personal adjustment in young adult survivors of pediatric ALL/NHL and (2) examine associations between personal adjustment, cognition, and sex. Method: Thirty-five young adult (x ̅=19.4 years), primarily Latino, survivors of ALL/NHL underwent neuropsychological evaluation, which included assessment of self-reported personal adjustment (Behavior Assessment System for Children – Third Edition [BASC-3]), working memory, processing speed, and sustained attention. Results: Personal adjustment was approximately 0.5 standard deviations below normative expectations (mean T=45.5), with over 28% of the sample endorsing concerns in this area (compared to 18% of the normative population). Self-reliance was the lowest personal adjustment subscale (mean T=42.2), with nearly half (49%) endorsing concerns (compared to 15-21% of the normative population). There were no significant correlations between cognitive measures and personal adjustment subscales. Females endorsed a higher number of elevated personal adjustment subscales compared to males, t(33)=1.99, p=.027, which parallels their poorer working memory performance, t(36)=-2.14; p=.02. Conclusion: Young adult survivors of ALL/NHL are at greater risk of concerns regarding personal adjustment than peers, particularly lower self-reliance. While there does not appear to be a direct relationship between cognition and personal adjustment in this group, females reported more areas of concern and demonstrated worse working memory, confirming their particular vulnerability to long-term cognitive and psychosocial sequelae.

Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study.

BackgroundChildhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness.ObjectiveThis study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors.MethodsIntervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention.ResultsA total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor.ConclusionsIncorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users’ preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer.

Health-Related Quality of Life in Young Adult Survivors of Hematopoietic Cell Transplantation

Young adults (YA), age 18 to 39 years, are at a stage of life that may make them more vulnerable than older adults to impairments in health-related quality of life (HRQOL) during and after hematopoietic cell transplantation (HCT). Health self-efficacy (HSE), the belief that one can implement strategies to produce a desired health outcome, has been associated with health outcomes in oncology research. Little is known about HRQOL or HSE in YA HCT survivors compared with older HCT survivors. Given the age-specific psychosocial challenges facing YA HCT recipients and research on non-transplant YA cancer survivors, we hypothesized that YA survivors would have worse post-HCT HRQOL compared with older adults, and that among YA HCT survivors, higher levels of HSE would be associated with higher levels of HRQOL and lower levels of cancer-related distress. This was a cross-sectional secondary analysis of 2 combined baseline datasets from multicenter studies of HCT survivors approached for participation in clinical trials of survivorship interventions. Participants from 20 transplantation centers in the United States were at 1 to 10 years post-HCT and age ≥18 years at the time of study enrollment, had no evidence of disease relapse/progression or subsequent malignancies, and could read English adequately to consent for and complete assessments. Medical record and patient-reported data were obtained for demographics and HCT-related clinical factors and complications (eg, total body irradiation, chronic graft-versus-host disease [cGVHD]). Participants completed surveys on HRQOL, including the Short-Form [SF]-12, HSE, and Cancer and Treatment Distress (CTXD), which includes 6 subscales and reports an overall mean score. On the SF-12, both the Mental Component Score (MCS) and Physical Component Score (PCS) were calculated. Two cohorts were compared: YAs (age 18 to 39 years at transplantation) and older adults (age ≥40 years at transplantation). Multiple linear regression analyses identified factors associated with HSE, PCS, MCS, and CTXD in YAs. In this analysis of 979 survivors, compared with the older adults, the YA participants had lower median mental health scores (SF-12 MCS: 48.40 versus 50.23; P=.04) and higher cancer-related distress (CTXD: .96 versus .85; P=.04), but better physical health (SF-12 PCS: 48.99 versus 47.18; P=.049). Greater overall cancer-related distress was driven by higher levels of uncertainty, financial concern, and medical demand subscales for YAs compared with older adults. Young adults also had lower HSE (2.93 versus 3.08; P=.0004). In a multivariate model, HSE was strongly associated with age group (P=.0005) after adjusting for multiple other transplantation-related factors. Among YAs, HSE was associated with the SF-12 MCS and PCS and the CTXD, and HSE remained significant after adjusting for other transplantation-related factors. Overall, the YA HCT survivors had lower mental health, increased cancer-related distress, and lower levels of HSE compared with the older adults. Although the direction of these effects cannot be determined with these data, the strong association between HSE and HRQOL among YAs suggests that targeting interventions to improve HSE may have broad impact on health outcomes.

Exercise training and NR supplementation to improve muscle mass and fitness in adolescent and young adult hematopoietic cell transplant survivors: a randomized controlled trial {1}

BackgroundAdvances in hematopoietic cell transplantation (HCT) have led to marked improvements in survival. However, adolescents and young adults (AYAs) who undergo HCT are at high risk of developing sarcopenia (loss of skeletal muscle mass) due to the impact of HCT-related exposures on the developing musculoskeletal system. HCT survivors who have sarcopenia also have excess lifetime risk of non-relapse mortality. Therefore, interventions that increase skeletal muscle mass, metabolism, strength, and function are needed to improve health in AYA HCT survivors. Skeletal muscle is highly reliant on mitochondrial energy production, as reflected by oxidative phosphorylation (OXPHOS) capacity. Exercise is one approach to target skeletal muscle mitochondrial OXPHOS, and in turn improve muscle function and strength. Another approach is to use “exercise enhancers”, such as nicotinamide riboside (NR), a safe and well-tolerated precursor of nicotinamide adenine dinucleotide (NAD+), a cofactor that in turn impacts muscle energy production. Interventions combining exercise with exercise enhancers like NR hold promise, but have not yet been rigorously tested in AYA HCT survivors.Methods/designWe will perform a randomized controlled trial testing 16 weeks of in-home aerobic and resistance exercise and NR in AYA HCT survivors, with a primary outcome of muscle strength via dynamometry and a key secondary outcome of cardiovascular fitness via cardiopulmonary exercise testing. We will also test the effects of these interventions on i) muscle mass via dual energy x-ray absorptiometry; ii) muscle mitochondrial OXPHOS via an innovative non-invasive MRI-based technique, and iii) circulating correlates of NAD+ metabolism via metabolomics. Eighty AYAs (ages 15-30y) will be recruited 6–24 months post-HCT and randomized to 1 of 4 arms: exercise + NR, exercise alone, NR alone, or control. Outcomes will be collected at baseline and after the 16-week intervention.DiscussionWe expect that exercise with NR will produce larger changes than exercise alone in key outcomes, and that changes will be mediated by increases in muscle OXPHOS. We will apply the insights gained from this trial to develop individualized, evidence-supported precision initiatives that will reduce chronic disease burden in high-risk cancer survivors.Trial registrationClinicalTrials.gov, NCT05194397. Registered January 18, 2022, https://clinicaltrials.gov/ct2/show/NCT05194397 {2a}.

Requests to children by parents with aphasia

ABSTRACT Background With an increasing number of young adult stroke survivors, there is a specific need to investigate how aphasia affects parenting. Raising a child happens through interaction, and centrally involves requests, such as ‘go to bed’, and ‘sit still’. Aphasia may impede participation in interaction and thus potentially also the possibilities to make requests to children and – from a wider perspective – do parenting. Aims This study aims to explore practices employed by parents with aphasia to ask their children to do or to stop an action during everyday interactions (e.g. mealtimes, games). The design of requests is systematically examined to shed light on the way deontic authority (the right to direct another person’s future action) is displayed by parents with aphasia. Methods & Procedures Using conversation analysis (CA), we carried out a collection-based study of 46 request sequences in 10 hours of video recordings involving three parents with aphasia (two with mild and one with severe aphasia). Outcomes & Results Stopping a child’s action may be easier to achieve than getting a child to do something, as it requires less specification of the action. Furthermore, the severity of aphasia may limit the fine-tuning of deontic authority. The persons with mild aphasia adjust the degree of authority for example by adding mitigating words, such as ‘a bit’. The person with severe aphasia uses requests that mostly show unmitigated authority for example by using higher volume. Structured contexts, such as games and mealtimes, may offer resources for all three parents with aphasia because they provide scaffolded interaction. Conclusions The analysis offers insights into practices that may allow or hinder these parents with aphasia to perform requests and thus to engage in parenting and participate in family life. Our findings suggest that people with aphasia could benefit from training to implement activities such as requesting in rehabilitation.

Including a discussion forum in a web-based intervention on fertility and sexuality following cancer – Usage and content

AimThe aim of the study was to investigate how young adult survivors of childhood cancer used an online discussion forum as part of a web-based psycho-educational intervention. Specifically, we aimed to characterize users of the discussion forum, investigate how they used the discussion forum (type of usage) and content of the posted messages. MethodsThis study is a part of a randomized controlled trial, Fex-Can Childhood RCT. Participants with self-reported sexual dysfunction or fertility-related distress were drawn from a population-based national cohort. Sociodemographic and clinical characteristics of the intervention group (n = 322) and data on usage of the discussion forum were analysed with descriptive statistics and compared between subgroups. Messages posted in the online discussion forum were analysed with qualitative thematic analysis. ResultsApproximately half (48 %) of participants in the intervention group accessed the discussion forum and most of them (76 %) without writing own posts. Users of the discussion forum did not statistically differ in sociodemographic or clinical characteristics from the rest of the intervention group. The 97 written posts, written by 38 individuals, were mainly descriptions of own experiences and thoughts and concerned three themes: A changed body, Concerns around family building and Longing for support. Peer-support and interaction between participants were seen in some forum threads and the ‘like’-function was frequently used, demonstrating engagement and activity. Participants expressed that they felt affinity with and appreciated sharing own experiences and to recognize themselves in others' stories. ConclusionsA discussion forum as part of a web-based intervention appears to be a valuable component by giving participants an opportunity to share intimate experiences and concerns related to surviving cancer. Trial registrationISRCTN Registry, trial number: 33081791 (registered on November 27, 2019).

Examining the Mental Health Needs of Post-secondary Students with Child-maltreatment Histories Seeking Campus Counseling Services

ABSTRACT Our study sought to provide a more nuanced understanding of the significant issues experienced by young adult survivors of child-maltreatment (CM) prior to seeking counseling services. More specifically, we examined differences between survivors of CM and participants with no CM histories related to non-suicidal self-injury (NSSI), suicidal ideation, and suicide attempt, and scores on the Counseling Center Assessment of Psychological Symptoms (CCAPS). In our sample of N = 2604 post-secondary students seeking counseling services, CM histories were significantly associated with higher frequencies of NSSI, suicidal ideation, and suicide attempt. Further, results indicated that survivors of CM reported significantly higher mean scores on all CCAPS subscales and were more likely to report scores that were considered “elevated” when compared to peers with no reported CM history. Implications for college counseling centers and college mental health providers are discussed.