Maru Barrera

Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics.

The objectives of this study were to compare educational and social outcomes for young survivors of childhood cancer with a population control group of individuals who were never diagnosed with cancer and to identify risk and protective factors for these outcomes.

Quality of Life Among Long-Term Adolescent and Adult Survivors of Childhood Cancer

PURPOSE We assessed effects of childhood or adolescent cancer on quality of life among adolescent and adult cancer survivors, a group who are thought to be at particular risk for adverse late effects. PATIENTS AND METHODS We studied 1,334 survivors and 1,477 age- and sex-matched, general population controls from across Canada using a mailed questionnaire which included the Short Form-36 (SF-36) and measures of self-esteem, optimism, and life satisfaction. General linear models and logistic regression were used. Survivor-control differences corresponding to an effect size (ES) > or = 0.5 were considered clinically important. RESULTS Participants were age 15 years to 37 years. Most survivors (83.8%) were diagnosed > or = 10 years earlier. Fewer survivors (62.1%) than controls (71.1%) reported very good or excellent general health (adjusted odds ratio, 0.6; 95% CI, 0.5 to 0.7). However, quality of life differences between survivors and controls were small, and for the most part probably not clinically important. Three clinical characteristics-having had CNS or bone cancer, more than one treatment series, and > or = two organs with a dysfunction at treatment end-were independently associated with poorer quality of life in the physical dimensions. Only survivors with > or = two organs with dysfunction (8.7%) reported poorer quality of life in both physical and psychosocial domains, with several clinically important ES. The largest ES for the SF-36 physical summary scores were found in the 8% of survivors with two or three of these characteristics simultaneously, compared with those survivors who had none (-0.79 and -1.13, respectively). CONCLUSION Overall, a sizeable majority of adolescent and adult long-term survivors of childhood cancer in Canada appear to have adapted well.

Neurodevelopment of Children Following Prenatal Exposure to Venlafaxine, Selective Serotonin Reuptake Inhibitors, or Untreated Maternal Depression

OBJECTIVE Effects on child neurodevelopment of neurotransmitter reuptake inhibitors used as antidepressants during pregnancy have not been adequately studied. The authors compared the effects of prenatal exposure to venlafaxine (serotonin-norepinephrine reuptake inhibitor), selective serotonin reuptake inhibitors (SSRIs), and maternal depression. METHOD A cohort derived from a prospectively collected database included four groups of children born to 1) depressed women who took venlafaxine during pregnancy (N=62), 2) depressed women who took SSRIs during pregnancy (N=62), 3) depressed women who were untreated during pregnancy (N=54), and 4) nondepressed, healthy women (N=62). The childrens intelligence and behavior outcomes were evaluated with standardized instruments at one time point between the ages of 3 years and 6 years, 11 months. RESULTS The children exposed to venlafaxine, SSRIs, and maternal depression during pregnancy had similar full-scale IQs (105, 105, and 108, respectively). The IQs of the venlafaxine and SSRI groups were significantly lower than that of the children of nondepressed mothers (112). The three groups exposed to maternal depression had consistently, but nonsignificantly, higher rates of most problematic behaviors than the children of nondepressed mothers. Severity of maternal depression in pregnancy and at testing predicted child behavior. Maternal IQ and child sex predicted child IQ. Antidepressant dose and duration during pregnancy did not predict any cognitive or behavioral outcome. CONCLUSIONS Factors other than antidepressant exposure during pregnancy strongly predict childrens intellect and behavior. Depression during pregnancy is a significant risk factor for postpartum depression. Children of depressed mothers may be at risk of future psychopathology.

Social competence in childhood brain tumor survivors: a comprehensive review.

PurposeTo review the literature investigating the social competence outcomes of child and adolescent survivors of brain tumors.MethodsTwenty articles published between 2000 and 2009 were accessed using PsycInfo and PubMed and reviewed for their findings related to three hypothesized levels of social competence (i.e., social adjustment, social performance, social skills).ResultsCurrent evidence indicates that childhood brain tumor survivors experience decreased social adjustment following treatment. Inconsistencies among studies continue to be an obstacle for advancing the field. The operationalization of social competence requires greater attention to facilitate comparability between studies (e.g., social adjustment, social performance, social skills). The effects of child, familial, and treatment factors and their relationships are still not well understood. There is a lack of theory driven research.ConclusionsMany childhood brain tumor survivors experience deficits in social competence at the level of social adjustment. These deficits worsen with time. Little is known about more rudimentary levels of social competence such as social skills or social performance. This information is needed to guide the development of social intervention programs.

Bereaved parents' perspectives on their needs

OBJECTIVE The loss of a child can be traumatic for parents, given the profound bond established with the deceased child. Parental bereavement and the need for bereavement services are not well understood. This study examined parental perspectives regarding bereavement services from a pediatric oncology treating center. METHODS A 2-h focus group of seven parents, audiotaped and transcribed verbatim, was conducted by two facilitators using open-ended questions to generate discussion regarding their views of what services were or would be helpful during early bereavement. RESULTS Parents perceived flexible and continuous bereavement services from the treating hospital as a necessary transition to community services. Talking to other parents with similar experiences and maintaining contact with staff at the treating hospital were considered critical in their healing after the loss. SIGNIFICANCE OF RESULTS Transitional multimodality bereavement services offered by the treating hospital will improve the quality of life of bereaved families.

Health status in survivors of cancer in childhood and adolescence

Background: Assessing health status in survivors of childhood cancer is increasingly important due to improved survival rates. However, there are limited estimates available for this population based on large samples and compared to population controls.Methods: In a retrospective cohort study, 2152 long-term survivors and 2432 controls, aged 5–37, who had survived cancer during childhood or adolescence were compared on the Health Utilities Index Mark III (HUI3). Descriptive and logistic regression analyses were used to assess the effect of age at diagnosis, type of cancer and therapy received on HUI3 domains.Major findings: More survivors than controls showed deficits in dexterity, ambulation, hearing, speech and cognition but not in vision, emotion or pain. The largest numbers of survivors reporting excess impairment was found in the cognition attribute. Survivors of central nervous system tumors were most likely to show impairments across multiple domains. Lastly, impairments in cognition were found most commonly in survivors exposed to cranio-spinal radiation at young ages.Conclusions: Seventy-five percent of childhood cancer survivors and 80% of controls were found to have two or fewer impaired attributes. Those reporting impairments that were most likely to be of clinical relevance were among survivors diagnosed with central nervous system and bone tumours, and those exposed to cranial radiation as young children. Tools assessing health status should be included in prospective trials to more clearly assess the contribution of therapy to reduced long-term health status.

Parental depression and family environment predict distress in children before stem cell transplantation.

Objective: To examine parental symptoms of depression, family environment, and interaction of these parent and family factors in explaining severity of distress in children scheduled to undergo stem cell or bone marrow transplantation. Method: A self-report measure of illness-related distress, adjusted to reflect the experience of medical diagnosis and associated stressors was completed by 146 youth scheduled to undergo stem cell or bone marrow transplantation. Measures of parental depressive symptoms and family environment (cohesion, expressiveness, and conflict) were completed by the resident parent. Results: Parental symptoms of depression, family cohesion, and family expressiveness emerged as significant predictors of child-reported distress. Additionally, significant parental depression × family cohesion and parental depression × family expressiveness interactions emerged as predictors of the intensity of the childs distress. When parental depressive symptomatology was high, child distress was high regardless of family environment. However, when parental depressive symptomatology was low, family cohesion and expression served as protective factors against child distress. Conclusion: Parental depressive symptomatology and family functioning relate to child distress in an interactive manner. These findings inform future directions for research, including interventions for parents aimed at promoting child adjustment during the pediatric cancer experience.

Patterns of Parental Bereavement following the Loss of a Child and Related Factors

This study investigated the patterns of parental bereavement in 20 parents who have lost a child to cancer, congenital heart disease, meningitis, or drowning in the last 19 months, using semi-structured interviews and standardized questionnaires of depression and grief. Qualitative content analysis of interviews identified three bereavement patterns: The majority of parents (65%) presented uncomplicated, Integrated Grief, five mothers were Consumed by Grief, and one mother and one father expressed Minimal Grief. Quotes from parents exemplified these patterns. Parental gender, symptoms of depression, and pre-death relationship between parents and their deceased child differentially related to these patterns. Having surviving children, social support, and being active appeared to help to integrate grief into daily life. These findings illustrate differential patterns of parental bereavement and related factors, information that has important implications for identifying at-risk parents for complicated bereavement.

Mutual concurrent validity of the Child Health Questionnaire and the Health Utilities Index: An exploratory analysis using survivors of childhood cancer

Mutual concurrent validity of 2 generic measures of health‐related quality of life (HRQL), the Child Health Questionnaire (CHQ) and the Health Utilities Index Mark 2 (HUI2) and HUI3, was assessed. Data were from 3 centers participating in a Canadian multi‐center retrospective cohort study currently in progress to assess psycho‐social and physical late effects in children surviving ≥5 years after cancer diagnosis between 1981 and 1990. Exploratory results are from 244 parent reports on HRQL in children <16 years old when studied. Spearman rank‐order correlations between sub‐scale scores for the CHQ and single‐attribute utility scores for the corresponding attribute from the HUI2 and HUI3 were used. As predicted, the correlation between CHQ bodily pain and HUI2 and HUI3 pain was strong, 0.58 and 0.60, respectively, while correlations between CHQ physical functioning and HUI2 mobility and HUI3 ambulation were moderate, both 0.45. Correlations between CHQ mental health and HUI2 and HUI3 emotion were strong, 0.64 and 0.54, respectively, rather than moderate, as predicted. Both the CHQ general health scale and the general health single item were moderately correlated with the HUI2 and HUI3 global utility scores rather than weakly, as predicted (CHQ general health scale and HUI2 and HUI3 global utility were 0.43 and 0.44, respectively; CHQ general health single item and HUI2 and HUI3 global utility were 0.38 and 0.42, respectively). The CHQ and HUI, which are based on different methodologies (summative Likert scaling and utility analysis, respectively), appear to capture similar constructs in childhood cancer survivors. Int. J. Cancer Suppl. 12:95–105, 1999. ©1999 Wiley‐Liss, Inc.

Bereavement Experiences of Mothers and Fathers Over Time After the Death of a Child Due to Cancer

The authors investigated longitudinally bereavement in mothers and fathers whose children died of cancer. Thirty-one parents were interviewed 6 and 18 months post-death. Analyses revealed parental differences and changes over time: (a) employment—fathers were more work-focused; (b) grief reactions—mothers expressed more intense grief reactions that lessened over time; (c) coping—mothers were more child-focused, fathers more task-focused; (d) relationship with bereaved siblings—mothers actively nurtured relationship with child; (e) spousal relationship—parents reported diversity in their relationship over time; and (f) relationship with extended family—mothers maintained contact with extended family more. Findings illustrate parental differences in bereavement over time that might be partly socially determined. These findings emphasize the need for tailoring bereavement support services in the family.