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Pharmacological solutions for reducing pain and distress in children during invasive procedures are not as effective as combined pharmacological and psychological tactics. The combined effort reduced child and parent distress more effectively than the use of drugs alone, but the use of drugs was, in turn, more effective than no particular intervention at all. Younger children were more distressed than older children and required more considered attention., Objective. This study evaluated a combined pharmacologic and psychologic intervention (combined intervention, CI) relative to a pharmacologic-only (PO) intervention in reducing child distress during invasive procedures in childhood leukemia. Predictors of child distress included age, group (CI, PO), and procedural variables (medications and doses, technical difficulty, number of needles required). Methodology. This was a randomized, controlled prospective study that compared the PO (n = 45) and CI arms (n = 47), at 1, 6, and [is greater than] 12 months after diagnosis. A cross-sectional control group consisted of parents of 70 patients in first remission before the prospective study. Parent questionnaires, staff and parent ratings, and data on medications administered, technical difficulty of the procedure, and needle insertions were obtained for each procedure. This article reports on the final data point for the project ([is greater than] 12 months). Results. Mothers and nurses reported lower levels of child distress in the CI than the PO group. The CI and PO groups showed lower levels of child and parent distress than the cross-sectional control group. Distress decreased throughout the time, and child age was inversely related to distress (younger children had more distress) regardless of group. Child distress was associated with staff perceptions of the technical difficulty of the procedure and with child age, but not with medications administered. Conclusions. The data showed that pharmacologic and psychologic interventions for procedural distress were effective in reducing child and parent distress and support integration of the two approaches. Younger children experienced more distress and warranted additional consideration. Staff perceptions of the technical difficulty of procedures were complex and potentially helpful in designing intervention protocols. Pediatrics 1998;102: 59-66; pediatric oncology, pain, procedures, intervention. ABBREVIATIONS. LP, lumbar puncture; BMA, bone marrow aspirate; GA, general anesthesia; APPO, Analgesia Protocol for Procedures in Oncology; PO, pharmacologic-only; CI combined intervention; CC, cross-sectional control; ANLL, acute nonlymphocytic leukemia; PPQ, Perception of Procedures Questionnaire; POQOLS, Pediatric Oncology Quality of Life Scale., Reducing the pain and anxiety associated with invasive procedures such as lumbar punctures and bone marrow aspirates (BMAs) in the diagnosis and treatment of childhood cancer is a widely shared [...]

Many children surviving cancer treatments may show mild levels of posttraumatic stress disorder (PTSD) that decrease over time, but in some children these symptoms persist. A questionnaire completed by 186 childhood cancer survivors and their parents indicates that, overall, symptoms decrease with time passed since treatment, and are increased in female patients. The child's general level of anxiety, subjective assessment of the intensity of the treatment, and perception of life-threat at the time were significantly associated with more persistent symptoms. Actual treatment intensity and medical complications did not appear to contribute to PTSD., Objective. The diagnosis and treatment of childhood cancer are extremely stressful experiences, with psychological sequelae which can persist many years after the end of treatment. This study investigated the relative contributions of general anxiety, treatment intensity, medical sequelae of treatment, and the subjective appraisal of life threat and treatment intensity to later posttraumatic stress symptoms, such as intrusive memories, avoidance, and hypervigilance. Method. One hundred eighty-six childhood cancer survivors ages 8 through 20 years, off of treatment for more than 1 year, and their parents completed questionnaires. Medical sequelae of treatment and intensity of treatment were rated by a pediatric oncologist. Results. Significant, independent predictors of persistent posttraumatic stress symptoms included: 1) the survivor's retrospective subjective appraisal of life threat at the time of treatment, and the degree to which the survivor experienced the treatment as "hard" or "scary" 2) the child's general level of anxiety; 3) history of other stressful experiences; 4) time since the termination of treatment (negative association); 5) female gender; and 6) family and social support. Mother's perception of treatment and life threat contributed to anxiety and subjective appraisal for the survivor, but did not independently contribute to posttraumatic stress symptoms. Conclusions. Symptoms of posttraumatic stress seem to decrease with time, but are persistent in a subset of childhood cancer survivors. Other than time and gender, the predictors of posttraumatic stress symptoms are primarily subjective factors (ie, anxiety and subjective appraisal) rather than objective stressors of treatment and medical sequelae. Pediatrics 1997;100:958-964; appraisal, childhood cancer, family, survivors, posttraumatic stress disorder., ABBREVIATIONS. PTSD, posttraumatic stress disorder; BMT, bone marrow transplant; SD, standard deviation; ALTTIQ, Assessment of Life Threat and Treatment Intensity Questionnaire. Significant advances have been made in the treatment of [...]

Parents of children with cancer appear to have use for the results of epidemiological studies in which they have participated, and do not appear to experience negative effects from such feedback. Researchers mailed research result summaries to 109 mothers whose children had brain tumors and who participated in the research, which attempted to identify parental risk factors for the children's cancer. Summaries were also mailed to 90 control mothers. All mothers completed a survey about their feelings after reading the research results. Overall, both groups reported that they understood the information and appreciated its value, and that they would recommend other parents to take part in such research. Mothers of the children with cancer were twice as likely to want a phone number to obtain additional information. They were also more likely to experience guilt and anger in response to reading the summary, but these feelings were of moderate intensity. Many of the mothers in both groups remarked on the inconclusive nature of the results., Objective. To assess the feasibility and process of providing feedback to parents regarding the results of epidemiologic research, in particular to look at the importance and clarity of the information provided, parental reactions to the results, and utilization of the data provided. Methodology. Parents who participated in an epidemiologic study of pediatric brain tumors (patient and control mothers) were sent a letter summarizing the results of the study and the Parent Study Results Survey to complete and return. The final sample used for analyses was 109 (patient) and 90 (control) mothers. Analyses were conducted to determine differences between patient and control mothers and differences among subsets defined by educational level and vital, status of the patient. Results. Mothers rated the importance and clarity of the information very highly, although patient mothers were more likely than control mothers to want more information and a telephone contact. Patient and control mothers were similar in reported sadness, anxiety, and being overwhelmed, but patient mothers felt less satisfied and relieved. Patient mothers expressed feeling more guilt and anger than control mothers, although even the levels among the patient mothers were only moderate. Close to half of all mothers commented on the inconclusiveness of the study results. Nearly all mothers indicated they would suggest that other parents participate in epidemiologic research. Conclusions. It is valuable to many parents that they receive information about results of research in which they have participated. We found little evidence of strong negative effects to a detailed feedback letter. We recommend that evaluative data be used to guide the process of informing research participants about study results and that investigators consider making feedback letters a standard part of research protocols. Pediatrics 1996;97: 486-491; pediatric oncology, parents, communication, epidemiology., In the past decade, epidemiologists have increasingly studied childhood malignancies and congenital anomalies and contributed knowledge about the development of these conditions. The subjects (usually parents) comprise a large and [...]

Abstract. Families with young children with phenylketonuria (n = 45) were compared with matched comparison families (n = 49) with respect to parental psychologic distress, marital satisfaction, parenting stress, family cohesion and adaptability, and child behavior. Multivariate analyses failed to show significant group differences. Univariate analyses indicated lower levels of adaptability and cohesion for the families with a child with phenylketonuria and evidence of lower levels of social competence in the children with phenylketonuria than in the comparison group. Group differences with regard to parental psychologic distress, marital satisfaction, and parenting stress were not found. The study results provide implications for understanding the impact of childhood chronic disease on families. [ABSTRACT FROM AUTHOR]

Background and Objectives: Autism spectrum disorder (ASD) and gender dysphoria (GD) frequently cooccur. However, existing research has primarily used smaller samples, limiting generalizability and the ability to assess further demographic variation. The purpose of this study was to (1) examine the prevalence of cooccurring ASD and GD diagnoses among US adolescents aged 9 to 18 and (2) identify demographic differences in the prevalence of cooccurring ASD and GD diagnoses., Methods: This secondary analysis used data from the PEDSnet learning health system network of 8 pediatric hospital institutions. Analyses included descriptive statistics and adjusted mixed logistic regression testing for associations between ASD and GD diagnoses and interactions between ASD diagnosis and demographic characteristics in the association with GD diagnosis., Results: Among 919 898 patients, GD diagnosis was more prevalent among youth with an ASD diagnosis compared with youth without an ASD diagnosis (1.1% vs 0.6%), and adjusted regression revealed significantly greater odds of GD diagnosis among youth with an ASD diagnosis (adjusted odds ratio = 3.00, 95% confidence interval: 2.72-3.31). Cooccurring ASD/GD diagnoses were more prevalent among youth whose electronic medical record-reported sex was female and those using private insurance, and less prevalent among youth of color, particularly Black and Asian youth., Conclusions: Results indicate that youth whose electronic medical record-reported sex was female and those using private insurance are more likely, and youth of color are less likely, to have cooccurring ASD/GD diagnoses. This represents an important step toward building services and supports that reduce disparities in access to care and improve outcomes for youth with cooccurring ASD/GD and their families., (Copyright © 2023 by the American Academy of Pediatrics.)

Objective: This study compared the prevalence of symptoms of posttraumatic stress disorder (PTSD), with functional impairment and/or clinical distress, among very long-term survivors of childhood cancer and a group of healthy siblings., Methods: A total of 6542 childhood cancer survivors >18 years of age who received diagnoses between 1970 and 1986 and 368 siblings of cancer survivors completed a comprehensive demographic and health survey., Results: A total of 589 survivors (9%) and 8 siblings (2%) reported functional impairment and/or clinical distress in addition to the set of symptoms consistent with a full diagnosis of PTSD. Survivors had more than fourfold greater risk of PTSD, compared with siblings (odds ratio [OR]: 4.14 [95% confidence interval [CI]: 2.08-8.25]). With controlling for demographic and treatment variables, increased risk of PTSD was associated with educational level of high school or less (OR: 1.51 [95% CI: 1.16-1.98]), being unmarried (OR: 1.99 [95% CI: 1.58-2.50]), having annual income below $20,000 (OR: 1.63 [95% CI: 1.21-2.20]), and being unemployed (OR: 2.01 [95% CI: 1.62-2.51]). Intensive treatment also was associated with increased risk of full PTSD (OR: 1.36 [95% CI: 1.06-1.74])., Conclusions: PTSD was reported significantly more often by survivors of childhood cancer than by sibling control subjects. Although most survivors apparently are faring well, a subset reported significant impairment that may warrant targeted intervention.