Psychometric Testing of Attitudes Toward Physical Activity Scale for Adolescent and Young Adult Survivors of Pediatric Cancer.

Purpose: Adolescent and young adult (AYA) survivors of pediatric cancer experience chronic health problems following treatment, many of which could be prevented through healthy lifestyle choices. This report describes the development of the AYA Cancer Survivor Attitude (AYA-CSA) Scale, an attitudinal scale that is associated with physical activity in AYA survivors of pediatric cancer. Methods: AYA survivors (n = 100) completed a survey to evaluate their attitudes toward engagement in physical activity. Internal consistency was calculated using Cronbach's alpha. Construct validity was assessed by exploratory factor analysis, correlation with physical activity intention and physical activity behavior, and prediction of physical activity, after adjusting for past physical activity, survivor age, gender, and family income. Results: Data demonstrated a single 6-item scale with excellent internal consistency (α = 0.82). Construct validity was supported by significant correlations with physical activity intention (r = 0.553, p < 0.001) and physical activity behavior (r = 0.489, p < 0.001). After controlling for past physical activity and demographic covariates, survivor age, attitude toward physical activity, and intention were significant predictors of physical activity, and the overall model (F(6, 77) = 7.722, p < 0.001) predicted 39.5% of the variability in physical activity. Conclusion: The AYA-CSA scale demonstrates good reliability and construct validity, most important of which was the ability to predict actual physical activity in AYA survivors of pediatric cancer. This reliable and valid measure is an important tool in the design of behavioral interventions to improve physical activity engagement in AYA survivors.

Adaptive functioning and academic achievement in survivors of childhood acute lymphoblastic leukemia: A report from the Children's Oncology Group.

PURPOSE: To characterize academic and adaptive skill outcomes in survivors of high-risk B-lineage acute lymphoblastic leukemia (HR B-ALL). METHODS: Participants were 178 patients enrolled on a nontherapeutic clinical trial that aimed to characterize neurocognitive and functional outcomes (ie, academic achievement and adaptive skills) following treatment for childhood HR B-ALL. Eligible patients were treated on Children's Oncology Group AALL0232 clinical trial that included two treatment randomizations: methotrexate delivery (high or escalating dose) and corticosteroid (dexamethasone or prednisone). Academic achievement and adaptive skills were evaluated at one time point, 8-24 months after completing treatment. RESULTS: Multivariable logistic regression showed no significant association between treatment variables and outcomes after accounting for age at diagnosis, sex, and insurance status. In multivariable analyses accounting for sex and insurance status, survivors <10 years old at diagnosis had significantly lower scores in Math (P = .02). In multivariable analyses accounting for sex and age at diagnosis, scores for children with US public health insurance were significantly lower than those with US private or military insurance across all academic and adaptive skills (all P-values ≤.04). Results from univariate analyses showed that boys had significantly lower scores than girls across all adaptive skill domains (all P-values ≤.04). CONCLUSION: Regardless of treatment randomization, survivors of HR B-ALL <10 years at diagnosis are at risk for deficits in Math and overall adaptive functioning; overall adaptive skills for boys were significantly poorer. Screening and early intervention for patients at highest risk, particularly young patients and lower resourced families, should be prioritized.

Phase I of the Detecting and Evaluating Childhood Anxiety and Depression Effectively in Subspecialties (DECADES) Study: Development of an Integrated Mental Health Care Model for Pediatric Gastroenterology.

BACKGROUND: Children with gastrointestinal symptoms have a very high rate of anxiety and depression. Rapid identification of comorbid anxiety and depression is essential for effective treatment of a wide variety of functional gastrointestinal disorders. OBJECTIVE: The objective of our study was to determine patient and parent attitudes toward depression, anxiety, and mental health screening during gastroenterology (GI) visits and to determine patient and parent preferences for communication of results and referral to mental health providers after a positive screen. METHODS: We augmented standard qualitative group session methods with patient-centered design methods to assess patient and parent preferences. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. RESULTS: Overall, 11 families (11 patients and 14 parents) participated in 2 group sessions. Overall, patients and their parents found integrated mental health care to be acceptable in the subspecialty setting. Patients' primary concerns were for the privacy and confidentiality of their screening results. Patients and their parents emphasized the importance of mental health services not interfering with the GI visit and collaboration between the GI physician, psychologist, and primary care provider. CONCLUSIONS: Patients and their families are open to integrated mental health care in the pediatric subspecialty clinic. The next phase of the DECADES study will translate patient and parent preferences into an integrated mental health care system and test its efficacy in the pediatric GI office.

Communicating breast cancer risk information to young adult women: A pilot study.

OBJECTIVE: To examine the effectiveness of a health promotion flyer to increase awareness of breast cancer risk and physical activity as a risk reduction strategy in young adult women. METHODS: Young adult women (N = 123) viewed one of five health promotion flyers online and then completed measures of perceived breast cancer risk (PR) and perceived informativeness (PI) and a qualitative thought-listing activity. RESULTS: Differences were observed in PI such that the control and low risk/low information messages were significantly less informative than the others. Qualitative analyses revealed two general themes: message content and flyer design. Additional analyses of the flyer design comments revealed four sub-themes: negative thoughts about the image, positive thoughts about the image, misunderstanding breast cancer risk information, and social comparison. Exploratory analyses controlling for message type indicated that image appraisal predicted PI such that those who commented on the image found the flyer to be less informative. DISCUSSION: Results suggest that the flyer was informative but did not impact young women's breast cancer risk perceptions. Additionally, the image may have distracted young women from the intended message. Evaluating the acceptability of images used in health promotion materials is recommended before testing the effectiveness of the intervention.

A Grounded Theory Investigation into the Psychosexual Unmet Needs of Adolescent and Young Adult Cancer Survivors.

PURPOSE: For many adolescents and young adults (AYAs) with cancer, psychosexual well-being is compromised due to the onset of illness at a vulnerable stage of sexual development. To date, prior studies have focused on the psychosexual well-being of older adult survivors, largely ignoring AYAs. Furthermore, the few studies investigating AYA psychosexual well-being have been prematurely quantitative in nature, limited by a lack of in-depth exploration regarding the unique psychosexual experiences of AYA survivors. Qualitative research is required to better identify and understand the unique complexities surrounding psychosexual needs among AYAs with cancer. METHODS: Semi-structured interviews were conducted with 11 AYA cancer survivors (aged 15-45 years at the time of diagnosis). Transcripts were coded using a grounded theory methodology. RESULTS: Constant comparison data analysis gave rise to the Pathways to Problems model, denoting the pathways to psychosexual unmet needs among AYA survivors. Participants experienced identity conflict, whereby an incongruity occurred between their chronological age and their self-perceived age. The experience of identity conflict, combined with changes to intimate relationships, shifts in priorities, physicians' assumptions, and inadequate support, contributed to the onset of psychosexual unmet needs. Six areas of psychosexual unmet needs were identified: fertility concerns, sexual communication, dealing with side effects, dating and disclosure, relating to other AYAs, and reconciling identity conflict. CONCLUSION: The present findings provide evidence for shared and unique psychosexual unmet needs among AYA survivors. Practical implications include the need for validation and incorporation of unique AYA unmet needs into screening tools and care plans, as well as peer support.

Life goals in patients with cancer: a systematic review of the literature.

OBJECTIVE: Purposes of this systematic review of life goal research in cancer patients were to (1) identify life goal characteristics and processes being examined, (2) describe instruments used to assess life goal constructs, (3) identify theoretical models being used to guide research, and (4) summarize what is known about the impact of the cancer experience on life goal characteristics, processes, and psychological outcomes. METHODS: We conducted this systematic review using MEDLINE, PubMed, CINAHL, and PsycINFO databases. Inclusion criteria were as follows: (1) published between 1993 and 2014, (2) English language, (3) cancer patient population, and (4) original research articles that assessed life goal characteristics and/or goal processes. One hundred ninety-seven articles were screened and 27 included in the final review. RESULTS: Seven life goal characteristics and seven life goal processes were identified, and less than half of studies investigated associations between goal characteristics and processes. Conceptual definitions were not provided for about half of the identified life goal constructs. Studies used both validated and author-developed instruments to assess goal constructs. Twenty-four different theoretical models were identified, with self-regulation theory most frequently cited. Overall, the literature suggests that cancer impacts patients' life goal characteristics and processes, and life goal disturbance is related to poorer psychological outcomes. CONCLUSIONS: The impact of the cancer experience on life goals is an important and emerging area of research that would benefit from conceptual and theoretical clarity and measurement consistency.

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.

Posttraumatic growth and hope in parents of children with cancer.

UNLABELLED: Posttraumatic growth (PTG), a positive change in values and major life goals experienced as a result of the struggle with a highly challenging life circumstance, has been shown to be related to the construct of hope, the belief that goals can be met. To date, no studies have examined the relationship between PTG and hope in parents of children with cancer. Participants were parents (N = 85) of children and adolescents (ages 2-18 years, M = 7.72 years) receiving treatment for cancer. Parents completed a demographic questionnaire, the Posttraumatic Growth Inventory (PTGI), and Hope Scale (HS). Hope was found to be related to PTG in parents of children with cancer, with higher levels of hope associated with greater PTG. Exploratory analyses on the subscales of the PTGI revealed that hope was also related to higher scores on the Relating to Others, New Possibilities, Personal Strength, and Appreciation of Life subscales. Spiritual change was not related to hope in parents. CONCLUSIONS: Findings suggest that experiencing hope during the pediatric cancer experience may facilitate posttraumatic growth in parents. The construct of hope may be an important target of intervention for promoting positive adjustment in this population.

Perceived barriers to care in a pediatric medical home: the moderating role of caregiver minority status.

OBJECTIVE: To examine the association of minority status to perceived barriers to care and health-related quality of life in families presenting to a Medical Home. METHOD: Fifty-three caregivers were classified as minority or nonminority caregivers based on self-reported race/ethnicity. Caregivers completed a measure of perceived barriers to care and child health-related quality of life. RESULTS: Minority caregivers reported more perceived barriers to care with regard to the pragmatics of obtaining health care. The association between perceived barriers to care and child health-related quality of life was moderated by minority status. Perceived barriers to care were only related to child health-related quality of life among minority caregivers. CONCLUSION: Minority families may have difficulties with the cost of health care or logistics of obtaining health care for their child. Perceived health care barriers may still exist within pediatric Medical Homes for minority caregivers and affect child health-related quality of life.

Differences in sleep quality and health-related quality of life in young adults with allergies and asthma and their healthy peers.

OBJECTIVE: The current study examined the relationship between sleep quality and health-related quality of life (HRQOL). PARTICIPANTS: Participants were 501 undergraduate students with allergies (167), asthma + allergies (167), or with no history of a chronic illness (167) completed study measures from August 2011 to April 2012. METHODS: The undergraduate students completed questionnaires online as part of a larger study of psychosocial adjustment of young adults. RESULTS: Young adults with allergies and asthma + allergies reported significantly worse sleep quality and HRQOL than healthy peers. Additionally, those with allergies and asthma + allergies had significantly more sleep disturbances and used sleeping medication significantly more often in the previous month than healthy peers. CONCLUSIONS: These results highlight concerns regarding quality of life and sleep problems in an often-overlooked population. Importantly, sleep difficulties can result in difficulties in daily living and impairment in academic functioning.

Impact of a parent-based interdisciplinary intervention for mothers on adjustment in children newly diagnosed with cancer.

OBJECTIVE: To determine if maternal distress predicts child adjustment outcomes or if child adjustment outcomes predict maternal distress among children newly diagnosed with cancer, and if a parent-focused intervention has downstream effects on child adjustment. METHODS: Mothers (n = 52) were randomly assigned to a clinic-based, interdisciplinary intervention for parents of children newly diagnosed with cancer. Measures of maternal distress and child adjustment were collected at baseline, posttreatment, and follow-up. RESULTS: A lagged relationship was identified between maternal distress and child internalizing symptoms, but not externalizing symptoms. The parent intervention reduced child internalizing and externalizing symptoms at follow-up. Only the child internalizing symptoms effect was mediated by reduced maternal distress. The child externalizing symptoms effect was mediated by unobserved parent factors. CONCLUSIONS: This study provides support for illness adjustment and coping models that emphasize the role of parent factors in driving child adjustment outcomes and is encouraging for future parent-focused intervention research.

Illness appraisals and health-related quality of life in adolescents and young adults with allergies and asthma.

The current study sought to: 1) assess differences in levels of physical and mental health-related quality of life (HRQOL), illness uncertainty, and intrusiveness in adolescents and young adults (AYAs) with allergies and asthma, as well as 2) examine the effect of illness appraisals on HRQOL. Participants were undergraduate students with self-reported allergies (n=74) and asthma (n=74) who completed the Mishel Uncertainty in Illness Scale (MUIS), the Illness Intrusiveness Scale (IIS), and the SF-36 Health Survey Questionnaire. Paired t-tests indicated that AYAs with allergies reported higher levels of illness uncertainty and poorer mental HRQOL than AYAs with asthma; the groups did not differ on reported levels of illness intrusiveness or physical HRQOL. Hierarchical regressions were conducted to examine the relationship between illness appraisals and HRQOL. Results revealed that poorer mental HRQOL was associated with higher illness uncertainty in AYAs with allergies and higher illness intrusiveness in AYAs with asthma. Poorer physical HRQOL was associated with higher illness uncertainty in AYAs with asthma and higher illness intrusiveness in AYAs with allergies and asthma. The current examination suggests that illness appraisals may be differentially related to HRQOL in AYAs with allergies compared to those with asthma.

A clinic-based interdisciplinary intervention for mothers of children newly diagnosed with cancer: a pilot study.

OBJECTIVE: To determine the feasibility and acceptability of an interdisciplinary intervention for mothers of children newly diagnosed with cancer and to estimate effect sizes for the intervention in reducing distress. Management of illness uncertainty was a key framework for the intervention. METHODS: Mothers (N = 52) were randomly assigned to the intervention or a treatment as usual group, completing measures at baseline and follow-up time points. RESULTS: Mothers' satisfaction ratings were consistently high, and intervention implementation appeared feasible. Significant mean effects or trends in favor of the intervention group were found for pre-to-post change on measures of distress. Evidence of a preventative effect was also observed; mothers in the intervention group tended to improve or remain stable in their adjustment, whereas many parents in the treatment as usual group showed worsening outcomes. CONCLUSIONS: An interdisciplinary intervention targeting maternal illness uncertainty has clinical value within this sample.

Transition from pediatric to adult care for adolescents and young adults with a disorder of sex development.

Over the past twenty years, there has been an increasing awareness of the transition to adult-oriented health care in adolescents and young adults with a chronic illness. While general guidelines for health care transition have been established, some have called for illness-specific guidelines which are tailored to the needs of specific illness populations. The current paper sought to outline illness-specific guidelines for health care transition in adolescents and young adults with disorders of sex development based upon the recent American Academy of Pediatrics guidelines. We also suggest indicators of successful transition for adolescents and young adults with disorders of sex development as well as areas for future research.

Differences in adjustment by child developmental stage among caregivers of children with disorders of sex development.

BACKGROUND: The current study sought to compare levels of overprotection and parenting stress reported by caregivers of children with disorders of sex development at four different developmental stages. METHODS: Caregivers (N = 59) of children with disorders of sex development were recruited from specialty clinics and were asked to complete the Parent Protection Scale and Parenting Stress Index/Short Form as measures of overprotective behaviors and parenting stress, respectively. RESULTS: Analyses of covariance (ANCOVAs) were conducted to examine differences between caregiver report of overprotection and parenting stress. Results revealed that caregivers of infants and toddlers exhibited more overprotective behaviors than caregivers of children in the other age groups. Further, caregivers of adolescents experienced significantly more parenting stress than caregivers of school-age children, and this effect was driven by personal distress and problematic parent-child interactions, rather than having a difficult child. CONCLUSIONS: These results suggest that caregivers of children with disorders of sex development may have different psychosocial needs based upon their child's developmental stage and based upon the disorder-related challenges that are most salient at that developmental stage.

The relationship between single-parent status and parenting capacities in mothers of youth with chronic health conditions: the mediating role of income.

OBJECTIVE: To retrospectively examine the relationship of single-parent status to parenting capacity variables in mothers of youth with a chronic health condition. METHODS: Parental overprotection, perceived vulnerability, and parenting stress were assessed in 383 mothers (308 married and 75 single parents) of youth with one of six chronic health conditions (i.e., type 1 diabetes, asthma, cancer, cystic fibrosis, hemophilia, or sickle cell disease). RESULTS: Single mothers evidenced higher levels of both perceived vulnerability and parenting stress, but not overprotection, than married parents. These differences disappeared in the presence of income as a predictor. CONCLUSIONS: Single parents appear to evidence differences in parenting capacity; however, low income appears to account in large part for the higher level of risk associated with single-parent status.

The Relationship of Allergy Severity to Depressive and Anxious Symptomatology: The Role of Attitude toward Illness.

The current study examined the relationship between self-reported allergy severity, depressive and anxious symptoms, and attitude toward illness in adolescents and young adults (AYAs) with allergies. Participants were 214 undergraduate students between the ages of 17-25 years with self-reported allergies. Participants completed the Center for Epidemiological Studies Depression Scale (CES-D), the Zung Self-Rating Anxiety Scale (SAS), and the Child Attitude Toward Illness Scale (CATIS) as measures of depressive symptoms, anxious symptoms, and attitude toward illness, respectively. Using the bootstrapping method, results revealed that attitude toward illness mediated the relationship between self-reported disease severity and depressive and anxious symptoms. Results of the current study suggest that attitude toward illness is one pathway by which subjective disease severity impacts psychological functioning in AYAs with allergies.

Parental overprotection, perceived child vulnerability, and parenting stress: a cross-illness comparison.

The current study sought to investigate differences in parenting capacity variables across four disease groups. Parents (N = 425), the majority of whom were mothers, of children with either cancer, asthma, Type 1 diabetes, or cystic fibrosis, completed measures of parental overprotection, perceived child vulnerability, and parenting stress. After controlling for significant demographic variables, parents of children with cystic fibrosis and asthma reported higher perceived child vulnerability than parents of children with either diabetes or cancer, while parents of children with asthma and diabetes reported higher parenting stress than parents of children with cancer or cystic fibrosis. No differences between disease groups were found for parental overprotection. The current study provides support for an illness-specific approach to understanding parenting capacity variables in the context of childhood chronic illnesses.

The relationship between parental overprotection and health-related quality of life in pediatric cancer: the mediating role of perceived child vulnerability.

PURPOSE: The current study sought to examine the relation of parental overprotection and perceived child vulnerability to parent-reported health-related quality of life in parents of children with cancer. METHODS: Parents (N = 89) of children who had been diagnosed with cancer completed measures of parental overprotection, perceived child vulnerability, and parent-proxy report of health-related quality of life. RESULTS: After controlling for theoretically relevant covariates, parental overprotection and perceived child vulnerability were both found to be significantly related to child health-related quality of life. Additional analyses revealed that perceived child vulnerability mediated the relationship between overprotective parenting behaviors and the child's health-related quality of life. CONCLUSION: The findings highlight the need to assess for these discrete parenting variables in parents of children with cancer and to develop interventions to target parental perceptions of vulnerability.