Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

PURPOSE: We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals. METHODS: Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29 years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined. RESULTS: An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found. CONCLUSIONS: The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.

Integrating trauma-informed services in out-of-school time programs to mitigate the impact of community gun violence on youth mental health.

Community gun violence disproportionately impacts youth in low-income urban neighborhoods. Integrating trauma-informed mental health care in community-based out-of-school time (OST) programs is an innovative method of service delivery for these youth. This article provides justification for integrating evidence-based, trauma-informed services in OST programs within communities characterized by high rates of violent crime to minimize the impact of violence exposure on youth mental health. We describe the initial feasibility of a model program, the Violence Intervention and Prevention (VIP) Initiative, implemented in a small city in southeastern Pennsylvania. Within the first six months of the VIP Initiative, 95 community residents (90% under age 18; 51% Hispanic) received intervention services, primarily through single-session and short-term weekly group intervention in OST programs, and 80% of OST youth development staff participated in at least one trauma-informed professional development training. Recommendations to enhance and expand the delivery of trauma-informed services in the novel setting of OST programs are provided.

Caregiver Satisfaction and Perceptions of Trauma-Focused Cognitive Behavioral Therapy.

Although caregivers have been found to be critical to children's healing, little has been documented about caregivers' experiences in Trauma-Focused Cognitive Behavioral Therapy (TF-CBT). The current study describes caregivers' satisfaction with and perceptions of TF-CBT. Caregivers (n = 431) of children/adolescents (n = 496) who completed TF-CBT filled out pre-treatment questionnaires on demographics and perceived aloneness in facing their child's trauma, and posttreatment questionnaires on treatment satisfaction and perceptions of TF-CBT. Caregivers rated treatment satisfaction an average of 30.59 (SD = 3.15) out of a maximum score of 32 on the Client Satisfaction Questionnaire-8. The majority of caregivers endorsed that talking about their child's trauma was more helpful than discussing other current problems, they spoke frequently with their child's therapist about their child's trauma, they reported information/skill building in therapy were more helpful than support received, they felt understood by their therapist, treatment helped them more effectively parent, and treatment helped improve their relationship with their child. Perceptions were associated with overall treatment satisfaction. There was a significant reduction in caregivers' feelings of aloneness in facing their child's trauma from pre- to posttreatment, which was also related to overall treatment satisfaction. Caregivers reported high satisfaction with TF-CBT, and identified talking about their child's trauma as more helpful than talking about problems not related to the trauma. Caregivers endorsed benefits of participating in TF-CBT, including feeling less alone in facing their child's trauma, improved relationship with their child, and more effective parenting skills. These results have important treatment implications.

Psychosocial Correlates and Consequences of Adolescents' Self-Generated Academic Goals and Appraisals.

The current study examined whether characteristics of adolescents (i.e., externalizing problems) and their environments (i.e., social support, adverse childhood experiences) relate to academic goal setting, appraisals, and outcomes. Adolescents (n = 99; 87% Black/African American) 13-16 years old completed baseline interviews, and 80% also completed follow-up interviews. Adolescents with more externalizing problems set fewer academic goals, and youth with social networks characterized by greater support (and less strain) appraised their academic goals as more supported and achievable. Adolescents' appraisals of their academic goals, but not how many academic goals they had, predicted grades at follow-up. Increasing social support (and reducing social strain) may foster adolescents' positive appraisals of their academic goals, which may promote academic achievement.

College Expectations Promote College Attendance: Evidence From a Quasiexperimental Sibling Study.

When adolescents are asked how likely they think it is that they will go to college, does their answer influence what they will actually do? Typically, it is difficult to determine whether college expectations promote academic achievement or just reflect a reasonable forecast of what is likely to happen to them. We used a sample of siblings from the National Longitudinal Study of Adolescent to Adult Health (N = 1,766) to test whether associations between college expectations and educational attainment remained after accounting for unobserved family factors that may shape both educational expectations and attainment. Compared with their siblings, adolescents with higher college expectations were also 43% more likely to attend college, even when analyses controlled for grades and IQ. The effect of college expectations on college attendance was strongest among youths living in higher-socioeconomic-status families.

Comparing cumulative index and factor analytic approaches to measuring maltreatment in the National Longitudinal Study of Adolescent to Adult Health.

Child maltreatment is a complex and multifaceted construct in need of advanced statistical techniques to improve its measurement. The current study compared the predictive utility of a cumulative index to a factor analytic approach for constructing a measure of maltreatment. Data were from Waves III and IV of the National Longitudinal Study of Adolescent to Adult Health (Wave III: n = 14,800; Wave IV: n = 12,288). As adults, participants retrospectively reported on their childhood experiences of physical abuse, sexual abuse, emotional abuse, physical neglect, supervisory neglect, and social services investigations. Both the cumulative index and a two-factor solution showed evidence of convergent validity, predicting lifetime incidence of homelessness, being paid for sex, and various measures of running away or living apart from biological parents, and prospectively predicting depression, substance use, and criminal behavior. The latent variables, derived from a factor analytic approach, had greater explanatory power for many outcomes compared to the cumulative index, even when controlling for sociodemographic variables. Results suggest that factor analysis is a better methodology than a cumulative index for measuring maltreatment in large datasets when explanatory power for external outcomes is of greatest concern.

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

Objective: The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods. Methods: Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART). Results: Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version. Conclusions: TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.

Associates of Engagement in Adult-Oriented Follow-Up Care for Childhood Cancer Survivors.

PURPOSE: Understanding how to predict appropriate uptake of adult-oriented medical care is important for adult patients with pediatric-onset chronic health conditions with continued health vulnerability. We examined associates of engagement in adult survivors of childhood cancer following transfer to adult-oriented care. METHODS: Adult survivors of childhood cancer (N = 80), within 1-5 years post transfer from pediatric to adult-oriented follow-up care, completed assessments of engagement with recommended adult-oriented follow-up care and psychosocial and transition readiness measures. Measures were validated with adolescent and young adults and/or intended to measure readiness to transition to adult care. RESULTS: Earlier age at diagnosis, parental involvement in health care decision-making, higher motivation, and increased comfort speaking to providers about health concerns were significantly associated with attendance at adult-oriented follow-up care visits. CONCLUSIONS: Associates of engagement in adult care are complex, representing social-ecological variables. Current measures of transition readiness or adolescent and young adult health-related measures may not adequately capture the associates of engagement in care or identify targets of intervention to promote successful transfer of care. Identifying patients at risk for loss to follow-up will be useful to design interventions for young adult survivors of childhood cancer and other young adults with pediatric-onset chronic conditions who require ongoing adult-oriented care.

What a Pain: The Impact of Physical Symptoms and Health Management on Pursuit of Personal Goals Among Adolescents with Cancer.

PURPOSE: This study examined health-related hindrance (HRH) of personal goals among adolescents receiving treatment for cancer and healthy peers. METHODS: Adolescents and parents completed measures of demographics and psychosocial variables. Adolescents reported on their HRH, measured by ratings of the impact of pain, fatigue, other physical symptoms, and doing things to manage their health on self-identified personal goals. Disease-related information was abstracted from patient charts. RESULTS: Adolescents with cancer experienced significantly more HRH than healthy peers, and their HRH was significantly associated with poorer health-related quality of life (p < 0.001), negative affect (p = 0.03), and depressive symptoms (p = 0.03). Risk and resilience factors associated with HRH for those with cancer included pain (current and past month severity, frequency, and pain-related quality of life), fatigue, nausea, cognitive problems, worse parent-reported family functioning, and female gender. When testing these significant associates in a regression model predicting HRH among adolescents with cancer, those with more severe pain (p < 0.001) and worse parent-reported family functioning (p = 0.01) were significantly associated with HRH; fatigue was marginally (p = 0.09) significant. CONCLUSIONS: Results suggest that HRH is a significant problem for adolescents with cancer, particularly those who are experiencing pain. Addressing pain and other symptom management, enhancing family functioning, and helping adolescents adjust their goals or enhance support for goal pursuit may reduce HRH among adolescents with cancer. This may improve psychosocial well-being, address adolescent unmet needs, and ultimately help adolescents with cancer maintain normal developmental trajectories.

Pathways from Childhood Adversity to Problem Behaviors in Young Adulthood: The Mediating Role of Adolescents' Future Expectations.

Adverse childhood experiences and pessimistic future expectations about college attendance or mortality are established risk factors for problem behaviors among youth. Data were from the National Longitudinal Study of Adolescent to Adult Health (N = 14,800; 49 % female). Participants were 11-17-years-old at baseline and 24-32-years-old at outcome. Adolescents' college expectations and fatalistic expectations mediated the effect of childhood adversity on violent behavior in young adulthood. Neither college nor fatalistic expectations were significant mediators in models predicting substance use and nonviolent antisocial behaviors. Although observed mediational effect sizes were small, they survived models that included multiple controls designed to rule-out alternative explanations. Intervening on adversity-exposed adolescents' college and fatalistic expectations may reduce risk for violent behaviors.

Defining and distinguishing promotive and protective effects for childhood externalizing psychopathology: a systematic review.

PURPOSE: We examine evidence for whether decreases in externalizing behaviors are driven by the absence of risk (e.g., lack of poor housing quality) or the presence of something positive (e.g., good housing quality). We also review evidence for whether variables have promotive (main) effects or protective (buffering) effects within contexts of risks. METHODS: We conducted a systematic review of longitudinal studies. First, we review studies (n = 7) that trichotomized continuous predictor variables. Trichotomization tests whether the positive end of a variable (e.g., good housing quality) is associated with lower delinquency compared with the mid-range, and whether mid-range scores are associated with fewer problems than the "risky" end (e.g., poor housing quality). We do not review dichotomous variables, because the interpretation of results is the same regardless of which value is the reference group. To address our second aim, we review studies (n = 53) that tested an interaction between a risk and positive factor. RESULTS: Both the absence of risk and the presence of positive characteristics were associated with low externalizing problems for IQ, temperament, and some family variables. For other variables, associations with low delinquency involved only the presence of something positive (e.g., good housing quality), or the absence of a risk factor (e.g., community crime). The majority of studies that tested interactions among individual and family characteristics supported protective, rather than promotive, effects. Few studies tested interactions among peer, school, and neighborhood characteristics. CONCLUSIONS: We discuss implications for conceptual understanding of promotive and protective factors and for intervention and prevention strategies.

Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care.

PURPOSE: Young adult survivors (YAS) of childhood cancer require annual adult-focused, cancer-related follow-up given their risk for late effects of treatment. This study describes perception of and engagement with adult-focused, cancer-related follow-up care and general health care among YAS formally transferred to adult care from pediatric survivorship care. METHODS: YAS transferred from pediatric survivorship care in the prior 1-5 years completed measures indicating engagement with cancer-related follow-up care, other health care utilization, content of communication by providers, quality of cancer-related care, and satisfaction with health care in the prior year. RESULTS: Eighty YAS (M age = 27.7 years, M time since diagnosis = 10.4 years) participated. Just over half of YAS surveyed (n = 44, 55%) endorsed continuing cancer-related follow-up care since transfer. Those with cancer-related follow-up endorsed seeing subspecialty survivorship providers (n = 16, 44%) and primary care providers (n = 22, 50%) or utilizing a shared care model (n = 6, 14%). About a third of YAS endorsed seeing subspecialists (n = 29, 36%) or using other support services (n = 22, 27%). YAS-perceived content of communication varied significantly depending on care model with less cancer-related content being discussed by primary care providers, though perceived quality of cancer-related care and satisfaction with health care was generally favorable. CONCLUSIONS: YAS report less than optimal engagement in cancer-related follow-up care and communication in their health care encounters. IMPLICATIONS FOR CANCER SURVIVORS: Young adult survivors should receive anticipatory guidance about expectations for delivery and content of adult-focused cancer-related follow-up care.

Transitioning Adolescents and Young Adults With Sickle Cell Disease From Pediatric to Adult Health Care: Provider Perspectives.

The transition from pediatric to adult health care is often challenging for adolescents and young adults with sickle cell disease (SCD). Our study aimed to identify (1) measures of success for the transition to adult health care; and (2) barriers and facilitators to this process. We interviewed 13 SCD experts and asked them about their experiences caring for adolescents and young adults with SCD. Our interview guide was developed based on Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework, and interviews were coded using the constant comparative method. Our results showed that transition success was measured by health care utilization, quality of life, and continuation on a stable disease trajectory. We also found that barriers to transition include negative experiences in the emergency department, sociodemographic factors, and adolescent skills. Facilitators include a positive relationship with the provider, family support, and developmental maturity. Success in SCD transition is primarily determined by the patients' quality of relationships with their parents and providers and their developmental maturity and skills. Understanding these concepts will aid in the development of future evidence-based transition care models.

Medical and psychosocial associates of nonadherence in adolescents with cancer.

The current study examined adherence to medication regimens among adolescents with cancer by applying the Pediatric Self-Management Model. Adolescents and their parents reported on adherence to medication, reasons for nonadherence, and patient-, family-, and community-level psychosocial variables. Adolescent- and parent-reported adherence were significantly correlated, with about half of the sample reporting perfect adherence. The majority reported "just forgot" as the most common reason for missed medication. Patient-, family-, and community-level variables were examined as predictors of adherence. With regard to individual factors, adolescents who endorsed perfect adherence reported a greater proportion of future-orientated goals and spent fewer days in outpatient clinic visits. For family factors, adolescents who endorsed perfect adherence reported greater social support from their family and were more likely to have a second caregiver who they perceived as overprotective. The community-level variable (social support from friends) tested did not emerge as a predictor of adherence. The results of this study provide direction for intervention efforts to target adolescent goals and family support in order to increase adolescent adherence to cancer treatment regimens.

Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers.

BACKGROUND: For adolescents and young adults (AYA) with inflammatory bowel disease (IBD), the transition from pediatric to adult care is often challenging and associated with gaps in care. Our study objectives were to (1) identify outcomes for evaluating transition success and (2) elicit the major barriers and facilitators of successful transition. METHODS: We interviewed pediatric and adult IBD providers from across the United States with experience caring for AYAs with IBD until thematic saturation was reached after 12 interviews. We elicited the participants' backgrounds, examples of successful and unsuccessful transition of AYAs for whom they cared, and recommendations for improving transition using the Social-Ecological Model of Adolescent and Young Adult Readiness to Transition framework. We coded interview transcripts using the constant comparative method and identified major themes. RESULTS: Participants reported evaluating transition success and failure using health care utilization outcomes (e.g., maintaining continuity with adult providers), health outcomes (e.g., stable symptoms), and quality of life outcomes (e.g., attending school). The patients' level of developmental maturity (i.e., ownership of care) was the most prominent determinant of transition outcomes. The style of parental involvement (i.e., helicopter parent versus optimally involved parent) and the degree of support by providers (e.g., care coordination) also influenced outcomes. CONCLUSIONS: IBD transition success is influenced by a complex interplay of patient developmental maturity, parenting style, and provider support. Multidisciplinary IBD care teams should aim to optimize these factors for each patient to increase the likelihood of a smooth transfer to adult care.

Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development.

OBJECTIVE: Review measures of readiness to transition to adult-oriented care for youth with chronic physical health conditions. METHODS: Identified measures via online searches and reference lists and reviewed methods of development, theoretical underpinnings, characteristics, and psychometrics. Measures were classified according to American Psychological Association Division 54 Evidence-Based Assessment (EBA) Task Force criteria. Strengths and weaknesses of reviewed measures were described. RESULTS: 56 measures were identified, of which 10 met inclusion criteria for this review. 6 were disease specific and 4 were generic. Some psychometric properties were reported for each; none reported predictive validity for transition outcomes. According to EBA criteria, the 10 measures met criteria for "promising" assessment. CONCLUSIONS: Measurement development in transition readiness is still an underdeveloped area. Measures require further testing and new measures are needed. Recommendations include testing measures with larger and diverse samples, ground measures in theory, test psychometrics, and involve multiple stakeholders in measure development.

Health-related hindrance of personal goals of adolescents with cancer: The role of the interaction of race/ethnicity and income.

This study examined the interaction of race/ethnicity and income to health-related hindrance (HRH) of personal goals of adolescents with cancer. Adolescents (N = 94) receiving treatment for cancer completed a measure of HRH, (including identification of personal goals, rating the impact of health on goal pursuit, and ratings of goal appraisals). The interaction of race/ethnicity and income on HRH was examined. Goal content and appraisal were compared by race/ethnic groups. The interaction between race/ethnicity and income was significant in predicting HRH, with HRH increasing for minority adolescents as income increases and HRH decreasing for white adolescents as income increases. Higher income minority adolescents reported the most goals. Low income minorities reported the least difficult goals. Goal content did not differ between groups. Sociodemographic factors contribute to HRH in adolescents with cancer. Structural and psychosocial support during treatment to maintain goal pursuit may improve psychosocial outcomes.

Stakeholder validation of a model of readiness for transition to adult care.

IMPORTANCE: That too few youth with special health care needs make the transition to adult-oriented health care successfully may be due, in part, to lack of readiness to transfer care. There is a lack of theoretical models to guide development and implementation of evidence-based guidelines, assessments, and interventions to improve transition readiness. OBJECTIVE: To further validate the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) via feedback from stakeholders (patients, parents, and providers) from a medically diverse population in need of life-long follow-up care, survivors of childhood cancer. DESIGN: Mixed-methods participatory research design. SETTING: A large Mid-Atlantic children's hospital. PARTICIPANTS: Adolescent and young adult survivors of childhood cancer (n = 14), parents (n = 18), and pediatric providers (n = 10). MAIN EXPOSURES: Patients and parents participated in focus groups; providers participated in individual semi-structured interviews. MAIN OUTCOMES AND MEASURES: Validity of SMART was assessed 3 ways: (1) ratings on importance of SMART components for transition readiness using a 5-point scale (0-4; ratings >2 support validity), (2) nominations of 3 "most important" components, and (3) directed content analysis of focus group/interview transcripts. RESULTS: Qualitative data supported the validity of SMART, with minor modifications to definitions of components. Quantitative ratings met criteria for validity; stakeholders endorsed all components of SMART as important for transition. No additional SMART variables were suggested by stakeholders and the "most important" components varied by stakeholders, thus supporting the comprehensiveness of SMART and need to involve multiple perspectives. CONCLUSIONS AND RELEVANCE: SMART represents a comprehensive and empirically validated framework for transition research and program planning, supported by survivors of childhood cancer, parents, and pediatric providers. Future research should validate SMART among other populations with special health care needs.

Fatigue in adolescents with cancer compared to healthy adolescents.

BACKGROUND: Cancer-related fatigue is one of the most pervasive and debilitating side-effects of cancer treatment and adolescents consistently rate cancer-related fatigue as one of the most distressing aspects of treatment. Because fatigue is also high in adolescents without cancer, the current study aims to describe fatigue in adolescents with cancer relative to a control group and to identify associates of such fatigue. Knowing this is important for understanding the extent of the problem in adolescents with cancer relative to healthy adolescents and for understanding who is most at risk for fatigue and related distress. PROCEDURE: Adolescents with cancer and their caregivers (n = 102) and adolescents without a history of chronic health conditions and their caregivers (n = 97) completed the Multidimensional Fatigue Scale and measures of depression, quality of life (QoL), affect, coping, and family functioning. RESULTS: Adolescents with cancer and their caregivers reported significantly more adolescent fatigue across all domains (with the exception of adolescent reports of cognitive fatigue) relative to adolescents without chronic health conditions. Higher fatigue was significantly related to adolescent report of more symptoms of depression, poorer QoL, higher negative affect, less positive affect, and behavioral disengagement coping style. Fatigue was not related to active coping or family functioning. CONCLUSIONS: Adolescents with cancer experience significantly more fatigue than peers without chronic health conditions. Reports of fatigue are closely related to multiple indicators of psychosocial well-being, suggesting that fatigue may be an important cancer-related symptom to assess and manage to improve adolescent QoL.

Exploratory Analyses of Substance Use in Adolescents With and Without Cancer.

PURPOSE: This study explored self-reported substance use and factors associated with use among adolescents with and without cancer. METHODS: Adolescents (aged 13-19) receiving cancer treatment at a Mid-Atlantic children's hospital (n=103) and healthy peers (n=98) answered questions about substance use (drinking or drug use in past 4 months) and psychosocial variables. Parents completed demographic and family functioning questionnaires. RESULTS: Healthy adolescents reported more substance use (n=17) than adolescents with cancer (n=8). Associates of substance use in adolescents with cancer included more avoidant and substance use-related coping, less positive affect, worse parent-reported family functioning, and less nausea. CONCLUSION: Substance use and its health implications in adolescent oncology need enhanced awareness, intervention and prevention efforts, and further research.