Contraceptive methods and fertility testing in young adult survivors of childhood cancer.

PURPOSE: Reproductive health is important, but often neglected in cancer survivorship care. This study explored contraceptive use and factors associated with fertility testing among young adult survivors of childhood cancer in Germany. METHODS: Young adult survivors of childhood cancer were identified through the German Childhood Cancer Registry and completed a mailed survey. Survivors were queried regarding contraceptive use, reproductive goals, uncertainty about fertility, and completion or interest in fertility testing. Multivariable stepwise logistic regression models were used to calculate Odds Ratios (OR) and 95% confidence intervals (CI) as a means of identifying factors associated with completion of and interest in fertility testing. RESULTS: Survivors (N = 472; 57.8% female; aged 23.3 ± 1.5 years, and 14.9 ± 5.0 years from diagnosis), reported high rates of contraceptive use, including 61.2% using a single method, 30.6% dual methods, and 8.1% no/less effective methods. Few survivors had completed fertility testing (13.0%), although 58.8% were interested. Having been diagnosed during adolescence (OR = 2.66, 95%CI: 1.39-5.09), greater uncertainty about fertility (OR = 1.16, 95%CI: 1.03-1.31), and use of dual contraceptive methods (OR = 1.94, 95%CI: 1.02-3.69) were associated with having completed fertility testing. Factors associated with interest in fertility testing included goals of wanting to have children (OR = 7.76, 95%CI: 3.01-20.04) and greater uncertainty about fertility (OR = 1.19 95%CI: 1.06-1.33). CONCLUSION: In this sample of young adults who survived childhood cancer, most reported contraceptive use. Few survivors had completed fertility testing, although more than half were interested. Interventions are needed to address potential barriers to fertility testing and help survivors manage fertility-related uncertainty.

Initial attendance and retention in adult healthcare as criteria for transition success among organ transplant recipients.

BACKGROUND: Adolescent and young adult (AYA) solid organ transplant recipients experience worsening medical outcomes during transition to adult healthcare. Current understanding and definitions of transition success emphasize first initiation of appointment attendance in adult healthcare; however, declines in attendance over time after transfer remain possible, particularly as AYAs are further removed from their pediatric provider and assume greater independence in their care. METHODS: The current study assessed health-care utilization, medical outcomes, and transition success among 49 AYA heart, kidney, or liver recipients recently transferred to adult healthcare. Differences in outcomes were examined along two transition success criteria: (1) initial engagement in adult healthcare within 6 or 12 months of last pediatric appointment and (2) retention in adult healthcare over 3 years following last pediatric appointment. Growth curve modeling examined change in attendance over time. RESULTS: Successful retention in adult healthcare was significantly related to more improved clinical outcomes, including decreased number and duration of hospitalizations and greater medication adherence, as compared to initial engagement. Significant declines in appointment attendance over 3 years were noted, and individual differences in declines were not accounted for by age at transfer or time since transplant. CONCLUSIONS: Findings underscore support for AYAs after transfer, as significant declines in attendance were noted after initiating adult care. Clinical care teams should examine transition success longitudinally to address changes in health-care utilization and medical outcomes. Attention to interventions and administrative support aimed at maintaining or increasing attendance and identifying risk factors and intervention for unsuccessful transition is warranted.

Associations between executive functioning, personality, and posttraumatic stress symptoms in adolescent solid organ transplant recipients.

BACKGROUND: Pediatric solid organ transplant recipients are susceptible to posttraumatic stress symptoms (PTSS), given the presence of a life-threatening chronic medical condition and potential for complications. However, little is known about what individual characteristics are associated with an increased risk for PTSS among youth who received an organ transplant. The aim of the current study was to evaluate PTSS and its associations with executive functioning (EF) and personality (i.e., neuroticism and conscientiousness) among adolescents with solid organ transplants. METHODS: Fifty-three adolescents (Mage  = 16.40, SD = 1.60) with a kidney, heart, or liver transplant completed self-report measures of PTSS and personality, whereas caregivers completed a caregiver-proxy report of adolescent EF. RESULTS: Twenty-two percent of adolescent transplant recipients reported clinically significant levels of PTSS. Higher EF difficulties and neuroticism levels, and lower conscientiousness levels were significantly associated with higher PTSS (rs -.34 to .64). Simple slope analyses revealed that adolescents with both high EF impairment and high levels of neuroticism demonstrated the highest PTSS (t = 3.47; p < .001). CONCLUSIONS: Most adolescent transplant recipients in the present study did not report clinically significant levels of PTSS; however, those with high neuroticism and greater EF difficulties may be particularly vulnerable to PTSS following organ transplantation. Following transplantation, medical providers should assess for PTSS and risk factors for developing PTSS. Identification of those at risk for PTSS is critical, given the strong associations between PTSS and certain medical outcomes (e.g., medication nonadherence) among these youth.

Psychosocial Functioning Among Caregivers of Childhood Cancer Survivors Following Treatment Completion.

OBJECTIVE: To inform efforts to better support caregivers of children with cancer during the transition from treatment to survivorship, this study sought to characterize caregiver mental health-related quality of life (HRQOL) and anxiety, and examine the influence of family psychosocial risk and caregiver problem-solving on these outcomes. METHOD: Participants included 124 caregivers (child age M = 10.05 years; SD = 4.78), 12-19 months from the conclusion of cancer-directed treatment. Participants' self-reported mental HRQOL, anxiety, and problem-solving were compared with community norms using t-tests. Correlations and hierarchical multiple regressions examined the influence of psychosocial risk and problem-solving on caregiver mental HRQOL and anxiety. RESULTS: Overall, caregivers reported HRQOL and anxiety within normal limits. Caregivers also reported more adaptive patterns of problem-solving than community norms. Subsets of caregivers reported clinical levels of psychosocial risk (11%) and at-risk levels of mental HRQOL (2.5%) and anxiety (5.7%). Females reported greater anxiety than males. Psychosocial risk and negative problem orientation (NPO) were both related to poorer mental HRQOL and greater anxiety (r = .40-.51, p's < .001). Positive problem orientation related to better mental HRQOL and lower anxiety (r = .18-.21, p's < .05). Impulsivity/carelessness and avoidance were associated with greater anxiety (r = .19-.25, p's < .05). Only NPO accounted for additional variance in mental HRQOL and anxiety, over and above psychosocial risk and demographic characteristics. CONCLUSIONS: The majority of caregivers appear to be resilient and experience limited distress during the off therapy period. Targeting negative cognitive appraisals (NPO) through cognitive-behavioral therapy or problem-solving skills training may further improve caregiver psychosocial functioning.

Adherence Barriers for Adolescent and Young Adult Transplant Recipients: Relations to Personality.

OBJECTIVE: Much of the extant literature on adherence barriers has focused on modifiable factors (e.g., knowledge, social support); however, less is known about how barriers may be associated with relatively stable constructs, such as personality traits. The current study examines associations between personality (i.e., agreeableness, conscientiousness, neuroticism) and adherence barriers in a group of adolescent and young adult (AYA) solid organ transplant recipients. Demonstrating associations between barriers and personality may help in understanding why barriers are stable over time. Additionally, different personality traits may relate to different types of barriers. METHODS: The sample included 90 AYAs (Mage = 17.31; SD = 2.05; 58% male) who received a kidney (n = 36), liver (n = 29), or heart (n = 25) transplant at least 1 year prior to study enrollment. AYAs completed the Agreeableness, Conscientiousness, and Neuroticism scales from the NEO Five-Factor Inventory and the Adolescent Medication Barriers Scale (AMBS). RESULTS: Lower levels of agreeableness and conscientiousness and higher levels of neuroticism were related to higher self-reported barrier scores (AMBS; r's = .31- .53, p's < .001). The relations differed by personality factor and barrier type. CONCLUSION: Adherence barriers showed medium to large associations with personality traits that are known to be relatively stable. Our findings indicate that the temporal stability of barriers to adherence may be due in part to their association with relatively enduring personality characteristics.

Caregivers' Barriers to Facilitating Medication Adherence in Adolescents/Young Adults With Solid Organ Transplants: Measure Development and Validation.

OBJECTIVE: To evaluate the factor structure, validity, and reliability of the Caregiver Medication Barriers to Adherence Scale (CMBAS), which assesses caregivers' barriers to facilitating medication adherence in adolescent and young adults (AYAs) with solid organ transplants. METHODS: The sample included 93 caregivers of AYAs ages 12-22 years who received a liver, kidney, or heart transplant. Caregivers completed the CMBAS and surveys to assess its validity, including internalizing symptoms, personality traits (i.e., neuroticism, conscientiousness), and AYAs' nonadherence to immunosuppressant medications. AYA nonadherence to tacrolimus was objectively assessed via the Medication Level Variability Index (MLVI). RESULTS: Confirmatory factor analyses of the CMBAS revealed a two-factor model: Caregiver Emotional Distress and Caregiver Cognitive Burden/Responsibility. Higher CMBAS scores were related to higher levels of caregiver internalizing symptoms (rs = .28 to .30), neuroticism (r = .27), and caregiver proxy-reported immunosuppressant nonadherence (r = .27), as well as lower levels of caregiver conscientiousness (rs = -.25 to -.26). The CMBAS was not associated with the MLVI (rs = -.13 to -.16). CONCLUSIONS: The CMBAS demonstrated reliability and validity for caregivers of AYAs with solid organ transplants. Findings support the use of the CMBAS as a brief clinical screening tool to identify caregivers' barriers to facilitating AYA medication adherence.

Relations Between Tic Severity, Emotion Regulation, and Social Outcomes in Youth with Tourette Syndrome.

This study examined associations between tic severity, emotion regulation, social functioning, and social impairment in youth with Tourette Syndrome (TS). Emotion regulation was examined as a mediator between tic severity and social outcomes. Seventy-seven caregivers of youth with TS (M age = 13.1 years; SD = 2.29) were administered proxy-report measures of tic severity, emotion regulation, social functioning, and social impairment. Total and motor tic severity were negatively associated with emotion regulation and social functioning, and positively associated with social impairment (r's = 0.23 to 0.43). Vocal tic severity was not related to emotion regulation or social functioning, but was positively associated with social impairment (r = 0.36). Emotion regulation mediated the relations between total tic severity and both social outcomes, and motor tic severity and both social outcomes. Interventions that target emotion regulation would likely be a beneficial adjunctive therapy for youth with TS, and may result in improved social outcomes.

Sleep quality is associated with psychosocial functioning and health-related quality of life in pediatric transplant recipients.

This study examined patient-reported sleep quality in a single-center cross-sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty-nine adolescents (M = 16.51 years; SD = 1.63) who received a solid organ transplant (kidney: n = 25; liver: n = 24; heart: n = 20) completed self-report measures of sleep quality, psychosocial functioning, and HRQOL. Adolescent transplant recipients endorsed significantly lower levels of sleep quality (ie, falling asleep) compared with previously published norms of healthy peers (t = -3.60; P ≤ .001). Higher sleep quality was significantly associated with fewer anxiety and depressive symptoms (r = -.31 to -.40), and higher physical and psychosocial HRQOL (r = .33-.43). Adolescents from minority backgrounds had significantly worse sleep quality compared with non-Hispanic Whites. Adolescent transplant recipients, particularly those from minority backgrounds, may be at increased risk for experiencing poor sleep quality. Suboptimal sleep is a risk factor for higher levels of anxiety and depressive symptoms, as well as lower levels of physical and psychosocial HRQOL. Sleep is an important modifiable factor that, if improved, may contribute to lower anxiety/depressive symptoms and better HRQOL in adolescent transplant recipients.

A preliminary investigation of sleep quality and patient-reported outcomes in pediatric solid organ transplant candidates.

The current cross-sectional, single-center study aimed to examine sleep quality in a sample of adolescents awaiting solid organ transplantation and to explore associations between sleep quality and both health-related quality of life and barriers to adherence. Thirty adolescents between the ages of 12 and 18 years (M age = 15.26, SD = 1.89) who were awaiting transplantation participated in this study. Participants completed measures of sleep quality, health-related quality of life, and barriers to adherence. T test and correlational analyses were performed to examine study aims. Adolescents awaiting transplantation had significantly lower levels of overall sleep quality compared to published norms of healthy peers. Domains of sleep quality were positively related to emotional and psychosocial health-related quality of life. Sleep quality domains were also negatively related to adherence barriers. This study provides preliminary evidence demonstrating that sleep quality among transplant candidates is compromised, and that poor sleep quality is related to adolescents' functioning across a number of domains during the pretransplant period. Results highlight the clinical importance of assessing and targeting sleep functioning in adolescents awaiting transplantation in order to reduce the negative influence of suboptimal sleep on functioning during this vulnerable period.

Acceptability and Feasibility in a Pilot Randomized Clinical Trial of Computerized Working Memory Training and Parental Problem-Solving Training With Pediatric Brain Tumor Survivors.

OBJECTIVE: To evaluate the feasibility and acceptability of computerized working memory training in pediatric brain tumor survivors (PBTS) with cognitive deficits, as well as computerized working memory training that is enhanced with parental problem-solving skills training (PSST). METHODS: Twenty-seven PBTS (ages 7-16) recruited from a large, tertiary academic medical center were randomly assigned to computerized working memory training (Standard; n = 14) or computerized working memory training plus PSST (Combined; n = 13). PBTS completed a baseline assessment and parents completed acceptability surveys. Primary outcomes included number of intervention sessions completed and acceptability ratings. RESULTS: Fourteen of the 27 participants completed at least 20 sessions of the computerized training with average sessions lasting over an hour (M = 68.42 min, SD = 14.63). Completers had significantly better baseline auditory attention abilities than noncompleters. Parents reported both frustration and satisfaction related to the interventions and identified barriers to completing intervention sessions. CONCLUSIONS: This pilot randomized clinical trial raises significant questions related to the feasibility of computerized working memory training in PBTS with cognitive deficits. Findings also offer considerations for integrating family-based treatment approaches into cognitive remediation interventions for PBTS.

A Systematic Review of Therapeutic Recreation Camp Impact on Families of Children With Chronic Health Conditions.

OBJECTIVE: Parents and siblings of children with chronic illnesses are at increased risk for experiencing psychosocial difficulties. Therapeutic recreation camps have become increasingly popular among these families. The current systematic literature review provides a synthesis of research on how these camps impact the parents and siblings of children facing a variety of chronic health conditions. METHODS: Databases searched: PubMed, PsycInfo, SportDISCUS, and Health Source Nursing/Academic Edition. Inclusion criteria included publication in a peer-reviewed journal between January 2000 and May 2018, written in the English language, and assessment of parent, sibling, or family outcomes. RESULTS: Twenty-one studies were included. Results indicated that camp attendance relates to positive changes in parent and sibling psychosocial outcomes. Additionally, parents report camp to be a place of social support and respite from daily life, and siblings find camp to be enjoyable and a place of belonging. Given the limited number of methodologically sound studies examining family functioning, it is not yet clear the extent to which camp influences family-level outcomes. CONCLUSION: Overall, camp appears to have a positive impact on parents and siblings across chronic illness populations. Future research should specifically assess family outcomes, including communication and family functioning, and the impact of incorporating well-defined interventions and education programming into the traditional therapeutic recreation camp experience.

A prospective study of family predictors of health-related quality of life in pediatric brain tumor survivors.

BACKGROUND: The objective of this study was to examine prospectively the associations between family functioning at the end of tumor-directed treatment and the health-related quality of life (HRQL) of pediatric brain tumor survivors (PBTSs) approximately 9 months later. PROCEDURE: Thirty-five PBTS (age 6-16 years) and their mothers completed measures of family functioning and survivor HRQL within 5 months of completing tumor-directed therapy (baseline) and again approximately 9 months later (follow-up). RESULTS: Survivor-rated general family functioning at baseline significantly predicted mother proxy- and self-reported survivor HRQL at follow-up when controlling for survivor HRQL at baseline and relevant demographic and treatment-related variables. CONCLUSIONS: Family functioning is a key factor contributing to survivor HRQL and should be screened throughout the course of tumor-directed treatment. Psychosocial interventions directed toward improving general family functioning may improve survivor well-being following the completion of treatment.

Multimethod Assessment of Medication Nonadherence and Barriers in Adolescents and Young Adults With Solid Organ Transplants.

Objective: To (a) examine levels of medication nonadherence in adolescent and young adult (AYA) solid organ transplant recipients based on AYA- and caregiver proxy-reported nonadherence to different medication types and the medication-level variability index (MLVI) for tacrolimus, and (b) examine associations of adherence barriers and AYA and caregiver emotional distress symptoms with reported nonadherence and the MLVI. Method: The sample included 47 AYAs (M age = 16.67 years, SD = 1.74; transplant types: 25% kidney, 47% liver, 28% heart) and their caregivers (94 total participants). AYAs and caregivers reported on AYAs' adherence barriers and their own emotional functioning. Nonadherence was measured with AYA self- and caregiver proxy-report and the MLVI for tacrolimus. Results: The majority of AYAs and caregivers denied nonadherence, with lower rates of nonadherence reported for antirejection medications. In contrast, 40% of AYAs' MLVI values indicated nonadherence to tacrolimus. AYAs and caregivers who verbally acknowledged nonadherence had more AYA barriers and greater caregiver emotional distress symptoms compared with those who denied nonadherence. AYAs with MLVIs indicating nonadherence had more barriers than AYAs with MLVIs indicating adherence. Conclusions: Multimethod nonadherence evaluations for AYA transplant recipients should assess objective nonadherence using the MLVI, particularly in light of low reported nonadherence rates for antirejection medications. Assessments should include adherence barriers measures, given associations with the MLVI, and potentially prioritize assessing barriers over gauging nonadherence via self- or proxy-reports. Caregiver emotional distress symptoms may also be considered to provide insight into family or environmental barriers to adherence.

Caregiver perspectives on the social competence of pediatric brain tumor survivors.

ᅟ: Pediatric brain tumor survivors are at risk for significant difficulties related to social competence. Little research has examined factors that contribute to survivor social problems. PURPOSE: The current study is grounded in a model of social competence for youth with brain disorder and used qualitative and quantitative methods to obtain caregiver perspectives on survivor social competence and identify pertinent risk and resistance factors. METHODS: The study occurred in two phases, including focus groups with 36 caregivers of 24 survivors and confirmatory interviews with 12 caregivers of 12 survivors. RESULTS: Qualitative content analyses resulted in three themes that were illustrative of the model of social competence. Themes included (1) the impact of survivor sequelae on social function; (2) the role of family in evaluating and promoting survivor social development; and (3) the match between the survivor's social context and developmental needs. Quantitative data supported the associations between survivor social skills, survivor executive function, and family functioning. CONCLUSIONS: Overall, findings underscore the influence of risk and resistance factors across different systems on survivor social competence and suggest directions for future research and intervention efforts.

Health-related quality of life in parents of pediatric brain tumor survivors at the end of tumor-directed therapy.

OBJECTIVE: This study examines theoretical covariates of health-related quality of life (HRQL) in parents of pediatric brain tumor survivors (PBTS) following completion of tumor-directed therapy. METHODS: Fifty PBTS (ages 6-16) completed measures of neurocognitive functioning and their parents completed measures of family, survivor, and parent functioning. RESULTS: Caregiving demand, caregiver competence, and coping/supportive factors were associated with parental physical and psychosocial HRQL, when controlling for significant background and child characteristics. CONCLUSION: Study findings can inform interventions to strengthen caregiver competence and family functioning following the completion of treatment, which may improve both parent and survivor outcomes.

Specific healthcare responsibilities and perceived transition readiness among adolescent solid organ transplant recipients: Adolescent and caregiver perspectives.

OBJECTIVE: Adolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer. METHODS: 65 AYAs (ages 12-21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA's transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups. RESULTS: 42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition. CONCLUSIONS: All AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare. PRACTICE IMPLICATIONS: Emphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for transfer.

Looking beyond the individual: How family demands and capabilities affect family adjustment following pediatric solid organ transplant.

INTRODUCTION: Better family adjustment following pediatric solid organ transplantation has been associated with a number of beneficial medical and psychosocial outcomes. Yet few studies have examined which pretransplant variables are associated with posttransplant family adjustment. This information can aid in identifying families that may need support going into the transplantation process and those who are at lower risk of worse posttransplant adjustment. METHOD: The sample included 66 parents of children with solid organ transplants and 22 children with solid organ transplants. Information regarding demographic factors, parent and child emotional functioning, and child social support was collected during the child's pretransplant evaluation and information on family adjustment was collected 6 months after transplantation. RESULTS: Results indicated that pretransplant demands such as worse parent and child emotional functioning were related to worse family adjustment 6 months after transplantation. Pretransplant capabilities (i.e., higher family income, parent education level, parent marital status, child social support) were not associated with posttransplant family adjustment. DISCUSSION: Pretransplant family demands such as parent and child emotional functioning, as opposed to family capabilities, should be assessed by family health care team members prior to transplantation because they may be related to worse family adjustment after the transplant. We offer recommendations for ways to assess and, if indicated, intervene upon pretransplant family demands in an effort to decrease the risk of worse posttransplant family adjustment. (PsycINFO Database Record (c) 2019 APA, all rights reserved).