Prevalence and correlates of fear of recurrence among adolescent and young adult versus older adult post-treatment cancer survivors.

PURPOSE: We sought to (1) assess prevalence of fear of recurrence among cancer survivors diagnosed as adolescent and young adults (AYA; 15-39 years) versus those diagnosed at a later age (40+ years) and (2) identify factors associated with fear of recurrence in each group. METHODS: We used logistic regression to determine the correlates of fear of recurrence by age group at diagnosis among survivors responding to the 2010 LIVESTRONG survey. RESULTS: Prevalence of fear of recurrence was significantly higher among AYA survivors (85.2 %) than those diagnosed at an older age (79.7 %). Among AYA respondents, being employed and less than 5 years off treatment were positively associated with fear of recurrence while those with thyroid cancer and those who participated in a clinical trial were less likely to experience fear of recurrence. Among older adults, receipt of surgery was associated with fear of recurrence whereas having insurance coverage through Medicare or Medicaid and positive patient-provider communication were negatively associated with fear of recurrence. CONCLUSIONS: For both AYA and older adult survivors, changeable factors such as having a more positive cancer care experience may impact fear of recurrence. Our findings highlight the need to identify and understand aspects of the communication process that can be targeted in future interventions with survivors and healthcare providers to ensure that fear of recurrence is being appropriately managed. Factors associated with fear of recurrence differ for AYA and older adult survivors; thus, interventions would likely benefit from tailoring based on age at diagnosis.

Validity of self-reported genetic counseling and genetic testing use among breast cancer survivors.

INTRODUCTION: Despite the value of genetic counseling (GC) and genetic testing (GT) for high-risk breast cancer survivors, little is known about their uptake and validity of self-report data. This study evaluated the accuracy of self-reported genetic counseling and testing rates among breast cancer survivors. METHODS: The current analysis focused on Stage 0-III female breast cancer survivors who were identified from an academic medical center's cancer registry and responded to a mailed survey (N = 452). Self-reported rates of GC and GT were validated using information from the electronic medical record. RESULTS: Overall, 30.8 % of survivors reported having seen a genetic counselor in the time period after their breast cancer diagnosis and 33.6 % noted having a genetic test. Concordance and specificity were good for both genetic questions; concordance agreements ranged from 86-88 %, while specificity was 83-86 %. Sensitivity (97-98 %) and negative predictive values (99 %) were excellent, while the positive predictive values for both GC and GT were poor (59-63 %). CONCLUSIONS: Among breast cancer survivors, self-reports of GC and GT were generally accurate, although a subset of respondents overestimated genetic service utilization. Future work should focus on validating GC and GT self-reports in medically underserved populations. IMPLICATIONS FOR CANCER SURVIVORS: Genetic counseling and testing are valuable aspects of survivorship care for high-risk breast cancer survivors; accurate understanding of their use is important for survivors, clinicians, and researchers.

Receipt of recommended surveillance among colorectal cancer survivors: a systematic review.

PURPOSE: Regular surveillance decreases the risk of recurrent cancer in colorectal cancer (CRC) survivors. However, studies suggest that receipt of follow-up tests is not consistent with guidelines. This systematic review aimed to: (1) examine receipt of recommended post-treatment surveillance tests and procedures among CRC survivors, including adherence to established guidelines, and (2) identify correlates of CRC surveillance. METHODS: Systematic searches of Medline, PubMed, PsycINFO, CINAHL Plus, and Scopus databases were conducted using terms adapted for each database's keywords and subject headings. Studies were screened for inclusion using a three-step process: (1) lead author reviewed abstracts of all eligible studies; (2) coauthors reviewed random 5 % samples of abstracts; and (3) two sets of coauthors reviewed all "maybe" abstracts. Discrepancies were adjudicated through discussion. RESULTS: Thirty-four studies are included in the review. Overall adherence ranged from 12 to 87 %. Within the initial 12 to 18 months post-treatment, adherence to recommended office visits was 93 %. Adherence ranged from 78 to 98 % for physical exams, 18-61 % for colonoscopy, and 17-71 % for carcinoembryonic antigen (CEA) testing. By 2 to 3 years post-treatment, cumulative adherence ranged from 70 to 88 % for office visits, 89-93 % for physical exams, 49-94 % for colonoscopy, and 7-79 % for CEA testing. Between 18 and 28 % of CRC survivors received greater than recommended overall surveillance; overuse of physical exams (42 %), colonoscopy (24-76 %), and metastatic disease testing (1-29 %) was also prevalent. Studies of correlates of CRC surveillance focused on sociodemographic and disease/treatment characteristics, and patterns of association were inconsistent across studies. CONCLUSIONS: Deviation from surveillance recommendations includes both under- and overuse. Examination of modifiable determinants is needed to inform interventions targeting appropriate and timely receipt of recommended surveillance. IMPLICATIONS FOR CANCER SURVIVORS: Among CRC survivors, it remains unclear what modifiable psychosocial factors are associated with the observed under- and overuse of surveillance. Understanding and intervening with these psychosocial factors is critical to improving adherence to guideline-recommended surveillance and thereby reducing mortality among this group of survivors.

Are cancer registries a viable tool for cancer survivor outreach? A feasibility study.

PURPOSE: Little is known about cancer survivors' receptivity to being contacted through cancer registries for research and health promotion efforts. We sought to (1) determine breast and colorectal cancer (CRC) survivors' responsiveness to a mailed survey using an academic medical center's cancer registry, (2) assess whether responsiveness varied according to sociodemographic characteristics and medical history, and (3) examine the prevalence and correlates of respondents' awareness and willingness to be contacted through the state cancer registry for future research studies. METHODS: Stage 0-III breast and CRC survivors diagnosed between January 2004 and December 2009 were identified from an academic medical center cancer registry. Survivors were mailed an invitation letter with an opt-out option, along with a survey assessing sociodemographic characteristics, medical history, and follow-up cancer care access and utilization. RESULTS: A total of 452 (31.4 %) breast and 53 (22.2 %) CRC survivors responded. Willingness to be contacted through the state cancer registry was high among both breast (74 %) and CRC (64 %) respondents even though few were aware of the registry and even fewer knew that their information was in the registry. In multivariable analyses, tumor stage I and not having a family history of cancer were associated with willingness among breast and CRC survivors, respectively. CONCLUSIONS: Our findings support the use of state cancer registries to contact survivors for participation in research studies. IMPLICATIONS FOR CANCER SURVIVORS: Survivors would benefit from partnerships between researchers and cancer registries that are focused on health promotion interventions.

Reporting guidelines: optimal use in preventive medicine and public health.

Numerous reporting guidelines are available to help authors write higher-quality papers more efficiently. Almost 200 are listed on the EQUATOR (Enhancing the Quality and Transparency of Health Research) Network's website and they vary in authority, usability, and breadth, making it difficult to decide which one(s) to use. This paper provides consistent information about guidelines for preventive medicine and public health and a framework and sequential approach for selecting them. The EQUATOR guidelines were reviewed for relevance to target audiences; selected guidelines were classified as "core" (frequently recommended) or specialized, and the latter were grouped by their focus. Core and specialized guidelines were coded for indicators of authority (simultaneous publication in multiple journals, rationale, scientific background supporting each element, expertise of designers, permanent website/named group), usability (presence of checklists and examples of good reporting), and breadth (article sections covered). Discrepancies were resolved by consensus. Selected guidelines are presented in four tables arranged to facilitate selection: core guidelines, all of which pertain to major research designs; guidelines for additional study designs; topical guidelines; and guidelines for particular article sections. A flow diagram provides an overview. The framework and sequential approach will enable authors as well as editors, peer reviewers, researchers, and systematic reviewers to make optimal use of available guidelines to improve the transparency, clarity, and rigor of manuscripts and research protocols and the efficiency in conducting systematic reviews and meta-analyses.

Adherence to adjuvant hormonal therapy among breast cancer survivors in clinical practice: a systematic review.

Adjuvant hormonal therapy significantly improves long-term survival of breast cancer patients with hormone receptor-positive disease. Despite the proven clinical efficacy of tamoxifen and aromatase inhibitors, many breast cancer survivors either fail to take the correct dosage at the prescribed frequency (adherence) or discontinue therapy (persistence). This systematic review aims to: (1) determine the prevalence of adherence and persistence to adjuvant hormonal therapy among breast cancer survivors in clinical practice, and (2) identify correlates of adherence and persistence. We searched Medline, PubMed, PsycINFO, and CINAHL for studies that measured rates and/or correlates of adherence and/or persistence to adjuvant hormonal therapy. Studies were reviewed in a multi-step process: (1) the lead author screened titles and abstracts of all potentially eligible studies; (2) each coauthor reviewed a random 5 % sample of abstracts; and (3) two sets of coauthors each reviewed half of all "maybe" abstracts. Any disagreements were discussed until consensus was reached. Twenty-nine studies met inclusion criteria. Prevalence of adherence ranged from 41 to 72 % and discontinuation (i.e., nonpersistence) ranged from 31 to 73 %, measured at the end of 5 years of treatment. Extremes of age (older or younger), increasing out-of-pocket costs, follow-up care with a general practitioner (vs. oncologist), higher CYP2D6 activity, switching from one form of therapy to another, and treatment side effects were negatively associated with adherence and/or persistence. Taking more medications at baseline, referral to an oncologist, and earlier year at diagnosis were positively associated with adherence and/or persistence. Adherence and persistence to adjuvant hormonal therapy among breast cancer survivors is suboptimal. Many of the correlates of adherence and persistence studied to date are not modifiable. Our review reveals a critical need for further research on modifiable factors associated with adherence to adjuvant hormonal therapy, and the development of behavioral interventions to improve adherence in this population.

Longitudinal effects of health-harming and health-protective behaviors within adolescent romantic dyads.

Most models exploring adolescent health behavior have focused on individual influences to understand behavior change. The goal of the current study was to assess the role of adolescent romantic partners on the expression of health behavior. Our sample utilized two waves of data from the U.S. National Longitudinal Study of Adolescent Health, which included 80 romantic dyads (160 individuals). A longitudinal multilevel analysis was conducted. We assessed individual and romantic partner health-harming behaviors (i.e., delinquency, alcohol use, smoking, and marijuana use), health-protective behaviors (i.e., physical activity, physical inactivity, sleep patterns, seatbelt use, and contraception motivations), as well as the role of gender and age. Participants average age was 16 years at baseline. We found evidence for partner similarity and partner influence with the majority of health-harming behaviors. Specifically, partner influence was evident for smoking and alcohol use with partner influence approaching significance for marijuana use. We found limited evidence for partner similarity and partner influence for health-protective behaviors. The importance of assessing romantic dyads was evident in these data. Interventions focusing on health-harming behavior for adolescent populations are important public health goals. It is recommended that future intervention efforts with adolescent health-harming behaviors should target not only peers, but also consider the role of romantic partners.

Longitudinal assessment of maternal parenting capacity variables and child adjustment outcomes in pediatric cancer.

This preliminary investigation aimed to longitudinally examine parenting capacity variables, namely parental overprotection, perceived child vulnerability, and parenting stress and their relation to child adjustment in mothers of children on treatment for cancer. As part of a larger study, biological mothers (N=22) completed measures of parental overprotection, perceived child vulnerability, parenting stress, and child adjustment at Time 1 and a follow-up time point. Analyses were conducted to determine whether (1) levels of parental overprotection, perceived child vulnerability, and parenting stress declined from Time 1 to follow-up and (2) if Time 1 parenting capacity variables were associated with child adjustment at follow-up. Results revealed that parental overprotection, perceived child vulnerability, and parenting stress declined from Time 1 to follow-up, and levels of parental overprotection, perceived child vulnerability, and parenting stress at Time 1 were significantly related to child adjustment at follow-up. Collectively, the preliminary findings of this study indicate that mothers of children with cancer evidence improved parenting capacity over time. Furthermore, it seems that Time 1 parenting capacity variables are significantly related to later child adjustment.

Perceptions of masculinity and self-image in adolescent and young adult testicular cancer survivors: implications for romantic and sexual relationships.

OBJECTIVE: To examine adolescent and young adult (AYA) testicular cancer survivors' subjective understanding of the impact of cancer in adolescence and young adulthood, with a particular emphasis on romantic and sexual relationships. METHODS: Twenty-one AYA testicular cancer survivors, aged 18 to 34 years, were recruited from outpatient testicular cancer follow-up clinics and completed a semi-structured qualitative interview that assessed the impact of testicular cancer on their romantic and sexual relationships. RESULTS: Four themes were identified that reflected survivors' understanding of the impact of cancer in adolescence and young adulthood: (1) embarrassment leads to delays in care-seeking, (2) testicular cancer makes you feel different from others, (3) being different from others makes you damaged goods, and (4) cancer disclosure is difficult. CONCLUSIONS: As these themes represent important components of being in a romantic/sexual relationship, either currently or in the future, AYA testicular cancer survivors would benefit from the development of tailored interventions focused on improving these relevant domains.

Romantic and sexual relationships, body image, and fertility in adolescent and young adult testicular cancer survivors: a review of the literature.

This review presents a summary of existing knowledge regarding the effect of testicular cancer along four broad domains, including romantic and sexual relationships, body image, and fertility. A total of 37 studies were reviewed. Of note, most research consists of older adult testicular cancer survivors, with very little research attention afforded to adolescent and young adult survivorship. Relationship status (i.e., partnered versus unpartnered) appears to play an important role as it relates to adjustment outcomes in testicular cancer survivors. In addition, sexual function (and thereby fertility) and body image are also frequently compromised. Implications regarding a lack of developmentally focused research on adolescent and young adult testicular cancer survivorship are discussed, along with recommendations for new research.

Use of the Behavioral Assessment System for Children 2nd Edition: Parent Report Scale in pediatric cancer populations.

This study examined the use of the Behavioral Assessment System for Children-2nd Edition: Parent Report Scale (BASC-2; Reynolds & Kamphaus, Behavior assessment system for children, 2004) in a pediatric cancer population. Comparisons of scale scores were made between pediatric cancer participants and controls. Within group comparisons were also made between subtypes of pediatric cancer. Parents of 111 children and adolescents who had experienced pediatric cancer completed the BASC-2 as part of larger studies of parent-child adjustment to cancer. Scores on the BASC-2 for cancer survivors were compared to a matched control group. Results from MANOVA analyses revealed that children with cancer were categorized as evidencing more emotional and cognitive complaints compared to the control children. Notably, no significant within group differences emerged on the subscales with regard to cancer subtype. Although preliminary, these results suggest that the BASC-2 can identify the cognitive and emotional differences between cancer survivors and controls.

Behavioral inhibition and its relation to anxiety and depression symptoms in adolescents with sickle cell disease: a preliminary study.

Several investigations have found support for the role of behavioral inhibition in the etiology of childhood anxiety and depression disorders. However, nothing is known about how this relation extends to children with a chronic, life-threatening illness. The purpose of the current study was to examine behavioral inhibition and its relation to anxiety and depression symptoms among 30 adolescents with sickle cell disease (SCD). Adolescents with SCD and their primary caregivers completed instruments assessing demographic information, behavioral inhibition, and anxiety and depression symptoms. A majority of adolescents with SCD classified themselves as middle or low on behavioral inhibition. Adolescents with SCD who classified themselves as high on behavioral inhibition displayed higher levels of anxiety and depression than adolescents with SCD who classified themselves as low on behavioral inhibition; adolescents with SCD endorsing the middle behavioral inhibition category generally scored in between. These data extend previous work with healthy children and adolescents and suggest that early and continued assessment of behavioral inhibition may be important in preventing adverse psychological outcomes among a group that is already at risk for internalizing disorders.

Disease-specific measure of quality of life for myasthenia gravis.

In 2000 a Task Force of the Myasthenia Gravis Foundation of America recommended development of a quality of life (QOL) measure specific for myasthenia gravis (MG). Extant investigations have relied solely on assessment of physical aspects of daily living in conceptualizing QOL, despite research that emphasizes the importance of including psychological factors. In the present study we developed a QOL questionnaire specific to MG (MG-QOL) that assesses both physical and psychological aspects of function. The MG-QOL questionnaire was administered as a secondary measure of efficacy in a recently completed prospective trial of mycophenolate mofetil involving 80 MG patients. Comparisons indicated that the MG-QOL performed better than a nondisease-specific measure of QOL, the SF-36, in demonstrating disease change as assessed by the primary measure, the Quantitative MG score (QMG). The MG-QOL correlated highly with the SF-36, and demonstrated stronger associations with independent physical ability ratings. Results from this study support the use of this new measure of QOL, both clinically and in treatment trials of MG.

Predictors of health-harming and health-protective behaviors in adolescents with cancer.

BACKGROUND: Given adolescent cancer survivors' increased susceptibility to late effects, it is imperative that we understand factors that influence their engagement in healthy and unhealthy behaviors. The purpose of this exploratory study was to identify significant predictors of health-harming and health-protective behaviors in adolescent cancer patients. PROCEDURE: Forty-two adolescents (ages 12-19 years) currently on-treatment for cancer and their parents were recruited from outpatient pediatric cancer clinics. Adolescents completed a battery of questionnaires that assessed their health-behaviors, quality of life, and psychological distress, while parents completed a demographic questionnaire. RESULTS: Regression analyses indicated that specific demographic, illness, and psychosocial variables significantly predicted health-harming and health-protective behaviors. Older adolescent age and unmarried parent status emerged as the best predictors of adolescent health-harming behaviors, whereas married parent status, increased adolescent time since diagnosis, increased adolescent-rated quality of life, and increased distress emerged as the best predictors of health-protective behaviors. CONCLUSIONS: Demographic, illness, and psychosocial variables may help inform the development of interventions designed to promote the initiation and/or maintenance of good health practices among adolescents on-treatment for cancer. Interventions are needed that target health behaviors while adolescents are approaching treatment completion, in order to help facilitate the practice of good health practices in survivorship.

The relationship of parental overprotection, perceived vulnerability, and parenting stress to behavioral, emotional, and social adjustment in children with cancer.

BACKGROUND: To examine the relationship of self-reported parental overprotection, perceived child vulnerability, and parenting stress to parent-reported behavioral, emotional, and social adjustment of children currently on treatment for cancer. PROCEDURE: Parents of 62 children (34 boys, 28 girls) currently on treatment for cancer were recruited from an outpatient pediatric cancer clinic. Children ranged in age from 2 to 12 years; age at diagnosis ranged from 1.33 to 11.83 years. RESULTS: Higher levels of parenting stress, but not parental overprotection or perceived child vulnerability, were associated with poorer behavioral and social adjustment. Higher levels of perceived child vulnerability and parenting stress, but not parental overprotection, were independently associated with poorer emotional adjustment. CONCLUSIONS: Specific parenting variables appear to be related to specific adjustment outcomes in children with cancer. Longitudinal follow-up of these children is necessary to determine the developmental trajectory of parent variables and long-term child outcomes.

Prevalence of multiple health-related behaviors in adolescents with cancer.

OBJECTIVE: This preliminary study investigated prevalence rates of multiple health-related behaviors (ie, tobacco, alcohol, and other drug use; sexual risk-taking; nutrition/physical activity; overweight and dietary behaviors; sun safety) among 42 adolescents on active treatment for cancer, as compared with healthy adolescent norms. METHODS: Health-related behaviors were assessed using the 2005 National Youth Risk Behavior Survey, for which healthy adolescent norms were publicly available. RESULTS: Adolescents with cancer reported significantly lower current and lifetime rates of tobacco, alcohol, and other drug use; fruit/vegetable consumption; physical activity; and dietary behavior, in addition to lower rates of lifetime sexual intercourse, early-onset sexual intercourse, and alcohol/drug use before last sexual intercourse, compared with healthy peers. Among those who have previously engaged in sexual intercourse, there appeared to be a trend toward increased partners, current sexual activity, and lack of protection at last episode of sexual intercourse. Adolescents with cancer also reported significantly higher rates of television watching compared with healthy peers. CONCLUSIONS: Adolescents on active treatment for cancer are engaging in multiple health-risk behaviors, including sedentary behavior, poor nutrition, lack of sun safety, and sexual risk-taking (eg, multiple partners, lack of protection at last sexual intercourse). Health promotion interventions are needed during active treatment to facilitate the acquisition of good health practices as adolescents transition into survivorship.

The relationship of parental overprotection, perceived child vulnerability, and parenting stress to uncertainty in youth with chronic illness.

OBJECTIVE: To examine the relationship of parent-reported overprotection (OP), perceived child vulnerability (PCV), and parenting stress (PS) to youth-reported illness uncertainty, and to explore potential developmental differences. METHOD: Eighty-two children and 82 adolescents (n = 164) diagnosed with Type 1 diabetes mellitus (DM1) or asthma, completed a measure of illness uncertainty, while their parents completed measures of OP, PCV, and PS. RESULTS: After controlling for demographic and illness parameters, both PCV and PS significantly predicted youth illness uncertainty in the combined sample. Within the child group, only PS significantly predicted illness uncertainty, whereas only PCV significantly predicted uncertainty for adolescents. CONCLUSION: Specific parenting variables are associated with youth-reported illness uncertainty; however, their relationship varies according to developmental level. Although OP has been identified as a predictor of child psychological outcomes in other studies, it does not appear to be associated with illness uncertainty in youth with DM1 or asthma.

Psychological, academic, and work functioning in college students with childhood-onset asthma.

This study investigated differences in psychological, academic, and work functioning between college students with and without asthma and identified predictors of functioning. Both participants with asthma (n = 121) and age-and gender-matched healthy control subjects (n = 121) completed measures of psychological distress, provided information on missed school and work days, and consented to have their grade point averages released from the registrar. College students with asthma also completed measures of illness uncertainty and illness intrusiveness. Participants with asthma reported greater anxiety, general psychological distress, and more missed school and work days compared to healthy control subjects. Within the asthma group, both illness uncertainty and illness intrusiveness independently predicted anxious and depressive symptoms and general psychological distress; illness intrusiveness also predicted missed school days. Although enrollment in college implies resilient functioning, college students with asthma remain at risk for problems with psychological and academic functioning.

Randomized trial of treatment for children with sexual behavior problems: ten-year follow-up.

This study prospectively follows 135 children 5-12 years of age with sexual behavior problems from a randomized trial comparing a 12-session group cognitive-behavioral therapy (CBT) with group play therapy and follows 156 general clinic children with nonsexual behavior problems. Ten-year follow-up data on future juvenile and adult arrests and child welfare perpetration reports were collected. The CBT group had significantly fewer future sex offenses than the play therapy group (2% vs. 10%) and did not differ from the general clinic comparison (3%), supporting the use of short-term CBT. There were no group differences in nonsexual offenses (21%). The findings do not support assumptions about persistent or difficult to modify risk and raise questions about policies and practices founded on this assumption.

Brief report: illness uncertainty and dispositional self-focus in adolescents and young adults with childhood-onset asthma.

OBJECTIVE: To investigate differences in self-focused attention between college students with childhood-onset asthma and a group of healthy controls and to determine whether self-focused attention mediates the relationship between illness uncertainty and psychological distress among individuals with asthma. METHODS: Forty-two adolescent and young adult participants with childhood-onset asthma and 40 age- and gender-matched healthy participants completed measures of self-focused attention, perceived illness uncertainty, psychological distress, and health status. RESULTS: Adolescents and young adults with childhood-onset asthma evidenced an increased tendency to engage in private self-focus compared to age- and gender-matched peers without a chronic illness history. Self-focused attention also mediated the relationship between perceived illness uncertainty and psychological distress among those with asthma. CONCLUSIONS: The need for self-monitoring in asthma management may result in an increased propensity to self-focus, which may result in heightened levels of psychological distress.