Identity in adolescent survivors of childhood cancer

OBJECTIVE: To investigate identify formation among adolescent survivors of childhood cancer. Family functioning, perceived emotional support from family and peers, life stress, and anxiety produced by the cancer experience also were examined as they influenced identity development. METHOD: Participants were 52 adolescent survivors and their mothers recruited from a medical center and 42 healthy adolescent counterparts and their mothers recruited from the community. RESULTS: A greater frequency of survivors than their healthy peers was found within the foreclosed identity status. Factors associated with the foreclosed identity status included the cancer diagnosis, symptoms of posttraumatic stress disorder (PTSD), and family functioning characterized by greater levels of conflict. CONCLUSIONS: Data were interpreted to suggest that the foreclosed identity status may serve a protective function in assisting survivors to cope with the stressors of the cancer experience.     

Neurocognitive outcomes in survivors of childhood cancer

OBJECTIVE:s To review issues associated with neurocognitive outcome in survivors of pediatric cancer. Recommendations are made for future research directions. METHODS: A large body of literature pertaining to neurocognitive outcome in cancer survivors was reviewed. Brain development and methodological issues that provide challenges to conducting meaningful research in cancer outcomes also are discussed. RESULTS: Neurotoxic agents used in some cancer therapies produce permanent neurocognitive sequelae, especially in very young children. CONCLUSIONS: The state of neurocognitive research for pediatric cancer survivors needs to move beyond empirical studies of neurocognitive sequelae to research that will identify individual patients at risk for neurocognitive morbidity.     

Assisted reproduction in male cancer survivors: fertility treatment and outcome in 67 couples

BACKGROUND: Many male cancer survivors experience fertility problems due to antineoplastic treatment. We report the fertility outcome in 67 couples referred to assisted reproduction treatment (ART) because of male factor infertility due to cancer. METHODS: This was a retrospective study assessing the following parameters: diagnosis, cancer treatment, type of fertility treatment and type of sperm used, number of pregnancies and pregnancy outcome. RESULTS: Testicular cancer and lymphomas were the most prevalent diagnoses. Adjuvant treatment with chemo- and/or radiation therapy had been given to 90% of the men. Semen was cryopreserved in 82% of the men prior to treatment. Following antineoplastic treatment, 43% of the men had motile spermatozoa in the ejaculate, but 57% were azoospermic. A total of 151 ART cycles were performed [55 intra-uterine insemination (IUI), 82 ICSI and 14 ICSI-frozen embryo replacement (FER)]. The clinical pregnancy rate per cycle was 14.8% after IUI, 38.6% after ICSI and 25% after ICSI-FER. The corresponding delivery rates were 11.1, 30.5 and 21%. Cryopreserved semen was used in 58% of the pregnancies. The delivery rate per cycle was similar after use of fresh or cryopreserved spermatozoa. CONCLUSIONS: Male cancer survivors have a good chance of fathering a child by using either fresh ejaculated sperm or cryopreserved sperm.     

Using web-based and paper-based questionnaires for collecting data on fertility issues among female childhood cancer survivors: differences in response characteristics

Background

Web-based questionnaires have become increasingly popular in health research. However, reported response rates vary and response bias may be introduced.

Objective

The aim of this study was to evaluate whether sending a mixed invitation (paper-based together with Web-based questionnaire) rather than a Web-only invitation (Web-based questionnaire only) results in higher response and participation rates for female childhood cancer survivors filling out a questionnaire on fertility issues. In addition, differences in type of response and characteristics of the responders and nonresponders were investigated. Moreover, factors influencing preferences for either the Web- or paper-based version of the questionnaire were examined.

Methods

This study is part of a nationwide study on reproductive function, ovarian reserve, and risk of premature menopause in female childhood cancer survivors. The Web-based version of the questionnaire was available for participants through the Internet by means of a personalized user name and password. Participants were randomly selected to receive either a mixed invitation (paper-based questionnaire together with log-in details for Web-based questionnaire, n = 137) or a Web-only invitation (log-in details only, n = 140). Furthermore, the latter group could request a paper-based version of the questionnaire by filling out a form.

Results

Overall response rates were comparable in both randomization groups (83% mixed invitation group vs 89% in Web-only invitation group, P = .20). In addition, participation rates appeared not to differ (66% or 90/137, mixed invitation group vs 59% or 83/140, Web-only invitation group, P =.27). However, in the mixed invitation group, significantly more respondents filled out the paper-based questionnaire compared with the Web-only invitation group (83% or 75/90 and 65% or 54/83, respectively, P = .01). The 44 women who filled out the Web-based version of the questionnaire had a higher educational level than the 129 women who filled out the paper-based version (P = .01). Furthermore, the probability of filling out the Web-based questionnaire appeared to be greater for women who were allocated to the Web-only invitation group (OR = 2.85, 95% CI 1.31 - 6.21), were older (OR = 1.08, 95% CI 1.02 - 1.15), had a higher educational level (OR high vs low = 0.06, 95% CI 0.01 - 0.52), or were students (OR employed vs student = 3.25, 95% CI 1.00 - 10.56).

Conclusions

Although overall response as well as participation rates to both types of invitations were similar, adding a paper version of a questionnaire to a Web-only invitation resulted in more respondents filling out the paper-based version. In addition, women who were older, had a higher level of education, or were students, were more likely to have filled out the Web-based version of the questionnaire. Given the many advantages of Web-based over paper-based questionnaires, researchers should strongly consider using Web-based questionnaires, although possible response bias when using these types of questionnaires should be taken into account.

Trial Registration

Nederlands Trial Register NTR2922; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=2922 (Archived by WebCite at http://www.webcitation.org/5zRRdMrDv)     

Posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in families of adolescent childhood cancer survivors

OBJECTIVE: To describe rates and concordance of posttraumatic stress disorder (PTSD) and posttraumatic stress symptoms (PTSS) in adolescent childhood cancer survivors and their mothers and fathers. METHOD: Participants were 150 adolescent survivors of childhood cancer, 146 mothers, and 103 fathers who completed the Impact of Events Scale-Revised, the Posttraumatic Stress Disorder Reaction Index, and the PTSD module of the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders, fourth edition. RESULTS: PTSS are common in families of childhood cancer survivors. Parents reported more symptomatology than former patients. Mothers and fathers had relatively equal rates of current PTSD and levels of PTSS. Nearly 30% of mothers met diagnostic criteria since their child's diagnosis, with 13.7% currently experiencing PTSD. Nearly 20% of families had at least one parent with current PTSD. Ninety-nine percent of the sample had at least one family member reexperiencing symptoms. CONCLUSIONS: Both PTSD and PTSS help in understanding the experience of adolescent cancer survivors and their families. Within families of childhood cancer survivors, it is likely that some member may be experiencing treatable bothersome memories, arousal, or avoidance specific to the cancer experience.     

Physical activity in child and adolescent cancer survivors: a review

Abstract

Childhood cancer survivors are at increased risk for future health problems. As such, physical activity (PA) has been targeted as a health promotion priority in child and adolescent cancer survivors. Research indicates that a large portion of pediatric survivors do not meet PA recommendations. Using Bronfenbrenner's ecological theory as a framework, this review presents a conceptual model to explain child and adolescent survivors' PA. The model considers predictors of PA across six domains: (1) demographic, (2) medical, (3) cognitive/emotional, (4) behavioural, (5) social/cultural and (6) environmental. A structured literature review found 14 empirical articles examining those predictors of PA among child and adolescent cancer survivors. Much existing research is cross-sectional, but suggests multiple factors work together to encourage or discourage PA among survivors of child/adolescent cancer. The conceptual model, which is based in empirical findings to date, can be used to understand the process through which PA is promoted and maintained, to inform the development of empirically-supported clinical interventions, and to guide future research objectives and priorities.     

Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers

OBJECTIVE: To describe posttraumatic growth (PTG) following childhood cancer survival and its association with demographic and disease/treatment variables, perceived treatment severity and life threat, and posttraumatic stress symptoms (PTSS). METHOD: Adolescent survivors of cancer (N = 150, ages 11-19), at least 1 year after treatment, and their mothers (N = 146) and fathers (N = 107) completed self-report measures of perceived treatment intensity and PTSS and a semistructured interview designed to identify posttraumatic responses and indicators of PTG including perceived positive changes for self, relationships, and life goals. RESULTS: A majority of adolescents and their mothers and fathers reported PTG. Greater perceived treatment severity and life threat, but not objective disease severity, was associated with PTG. PTG and PTSS were positively associated for the adolescent cancer survivors. Diagnosis after age 5 resulted in more perceived benefit and greater PTSS for adolescent survivors. CONCLUSION: Clarification of the concept and measurement of PTG after childhood cancer is warranted, as are prospective studies of the association of PTG and PTSS and the role of demographic variables and illness-specific appraisals.     

Predictors of intentions to use tobacco among adolescent survivors of cancer

OBJECTIVE: To examine the relationship between knowledge of tobacco-related health risks, perceptions of vulnerability to these health risks, and future intentions to use tobacco in a sample of adolescent survivors of cancer. METHODS: Written self-report questionnaires were administered to 46 survivors, 10-18 years of age (61% males, 93.5% Caucasian). RESULTS: Overall, survivors were generally knowledgeable about tobacco-related health risks, perceived themselves to be vulnerable to these health risks, and reported low future intentions to use tobacco. Regression analyses indicated that demographic factors, treatment-related variables, knowledge, and perceived vulnerability explained 28% of the variance in intentions scores, F:(6, 39) = 2.52, p <.05. Age and knowledge were significant predictors, indicating that older adolescent survivors and those with lower knowledge scores reported greater intentions to use tobacco. CONCLUSIONS: Young survivors will benefit from risk counseling interventions that educate them about their susceptibility to specific tobacco-related health risks secondary to their cancer treatment. Intensive tobacco prevention programs that target older adolescents should be developed.     

Brief report: health beliefs among survivors of childhood cancer

OBJECTIVE: To describe interest in cancer screening and tobacco-control procedures (nicotine-addiction susceptibility testing) among survivors of childhood cancer and to identify psychosocial modifying and readiness factors associated with survivors' interest, based on the children's health belief model. METHODS: Twenty-eight survivor-mother dyads were interviewed as part of a preliminary study (mean age of survivors = 15.4 years at time of interview, 10.1 years at time of diagnosis, and 12.0 years at end of treatment); interviews consisted of well-validated self-report items and measures of health beliefs. RESULTS: In sum, 57% and 61% of survivors were interested in screening and susceptibility testing, respectively. Survivors who rated themselves as more competent, more concerned about cancer, and more vulnerable to cancer were more interested in participating in screening. Regarding interest in nicotine-addiction susceptibility testing, survivors were more interested when they perceived greater vulnerability to the harm of smoking and when they had mothers who perceived themselves to be in better health. CONCLUSIONS: Preliminary data suggest that psychosocial modifying and readiness factors are associated with survivors' interest in cancer screening and tobacco-control procedures and that additional research in this area is warranted.     

Evidence-based interventions for survivors of childhood cancer and their families

OBJECTIVE: To summarize existing empirical reports of psychological interventions for children with cancer and their families and to outline directions for future work. METHODS: Research accomplishments related to four areas were summarized: understanding and reducing procedural pain; realizing long-term consequences; appreciating distress at diagnosis and over time; and knowing the importance of social relationships. Recommendations for future research in this field were discussed in three domains: balancing competence and psychopathology; integrating research-based interventions into clinical care; future directions). RESULTS AND CONCLUSIONS: Interventions related to procedural pain and distress have strong empirical support. Although most survivors of childhood cancer and their families adjust quite well as they complete treatment, evidence-based interventions during and after treatment that address cancer-specific sequelae represent important growing areas of work. In the future, the development of interventions to address emerging survivorship issues will be vital, and theoretically grounded, evidence-based pragmatic interventions will be necessary.     

High incidence of radiation-induced cavernous hemangioma in long-term survivors who underwent hematopoietic stem cell transplantation with radiation therapy during childhood or adolescence

Radiation-induced cavernous hemangioma (RICH) is a late complication of cerebral radiation therapy. Long-term survivors of hematopoietic stem cell transplantation (HSCT) who underwent radiation therapy could be at increased risk for RICH. We investigated records of 68 patients who underwent HSCT during childhood or adolescence and were assessed by magnetic resonance imaging (MRI), including T2*-weighted imaging of the brain, annually for 5 years over a range of 6 to 29 years after HSCT. We developed a scoring and grading system for RICH to monitor the process and the progress of radiologic changes. Among the 68 patients investigated, 28 (41.2%) were diagnosed with CH. All 28 patients had received total body irradiation as a conditioning treatment for HSCT and/or cranial radiation therapy before HSCT as part of the treatment of their primary disease. RICH was diagnosed in none of the patients who did not receive radiation (n = 19), in 46.2% of those who received 6 to 12 Gy (n = 39), and in all of those who received 18 to 36 Gy (n = 10). Total RICH scores were correlated with higher radiation doses. Careful and long-term evaluation with MRI, including T2*-weighted imaging, is necessary for HSCT recipients who received radiation therapy before and/or during HSCT.     

Trauma spectrum adaptation: somatic symptoms in long-term pediatric cancer survivors

The authors assessed somatic symptoms and the degree of association among somatic symptoms, global adjustment, trauma symptoms, and personality characteristics in long-term pediatric cancer survivors. Forty cancer survivors completed self-report questionnaires and clinical interviews. Participants' level of somatic symptoms fell between nonclinic and psychiatric populations. Somatic symptom scores correlated with general adjustment in the negative direction and with posttraumatic stress disorder (PTSD) scores in the positive direction. The majority of participants met at least partial current PTSD criteria. Because these survivors demonstrate a repressive adaptive style but endorse somatic symptoms, the latter may represent a method for detecting trauma-related distress in this population.     

Health promotion for survivors of childhood cancer: a minimal intervention

We report the evaluation of an information booklet aimed to explain the purpose of follow-up to survivors of childhood cancer. Evaluations drew on theoretical concepts in the elaboration likelihood and stages of change models. We predicted that survivors who adopt central rather than peripheral processing would show greater understanding and increased readiness to change health behaviour. Forty-eight survivors were shown an example page of the booklet in the clinic and then completed questionnaires about attitude to clinic, readiness to change behaviour, and the importance and scariness of the information. They were then given the whole booklet and asked to complete a second questionnaire at home. After reading the booklet, survivors reported a more positive attitude to clinic. Survivors using central processing rated information as more important and were more ready to change health behaviour than peripheral processors. We recommend that methods to encourage central processing should be routinely included when providing children with health information.     

Decreased serum testosterone levels in long-term adult survivors with fatty liver after childhood stem cell transplantation

Fatty liver and male gonadal dysfunction are potential late effects of therapy in adult survivors treated with stem cell transplantation (SCT) in childhood. Obesity and metabolic syndrome also are associated with low serum testosterone levels in the general population. However, the relationship between the degree of fatty liver and changes in serum testosterone levels in adult survivors has not been fully studied. We reviewed the clinical records of 34 male patients who received allogeneic SCT in childhood or adolescence. The median age at SCT was 10.0 years, and the median follow-up after SCT was 15.9 years. All but one patient showed no tendency toward overweight/obesity during the follow-up period. Fatty liver was diagnosed by ultrasound in 15 patients at 4 to 20 years after SCT. Patients who received cranial radiation therapy before SCT were more likely to develop fatty liver and insulin resistance. Moreover, fatty liver was statistically associated with decreased serum testosterone levels, whereas nonfatty liver was not (median, 527 ng/dL [range, 168-944 ng/dL] versus 302 ng/dL [165-698 ng/dL]; P < .0001). Changes in testosterone levels after SCT are affected not only by primary gonadal dysfunction but also by subsequent development or exacerbation of fatty liver.