Kathy N. Speechley

A new analogue scale for assessing children's pain: an initial validation study.

&NA; A new instrument was designed to provide a practical clinical measure for assessing childrens pain intensity and pain affect. The pocket size measure includes a Coloured Analogue Scale (CAS) to assess intensity and a facial affective scale to assess the aversive component of pain. Both scales have numerical ratings on the back, so that the person administering it can quickly note the numbers that represent a childs pain. This study was conducted to determine: the validity of the new instrument by evaluating the psychophysical properties of the intensity scale and by evaluating the discriminant validity of the intensity and affective scales. Since visual analogue scales (VAS) are valid and reliable measures for assessing childrens pain, childrens ability to use the new analog scale was compared with their performance on a VAS. Childrens ability to rate pain affect using an affective scale, in which the 9 faces on a Facial Affective Scale (FAS) are presented in an ordered sequence from least to most distressed, was compared to their performance on the original FAS, in which the same faces were presented in a random order. Using a parallel groups design, 104 children (5–16 years; 60 female, 44 male; 51 healthy and 53 with recurrent headaches) were randomized into two groups: CAS or VAS. Children used the assigned scale to complete a calibration task, in which they rated the sizes of 7 circles varying in area (491, 804, 1385, 2923, 3848, 5675 and 7854 mm2). The psychophysical function relating perceived circle size to actual physical size was determined for the CAS and VAS. Childrens CAS and VAS responses on the calibration task yielded similar mathematical relationships; &PHgr;cas = 0.035I0.87, &PHgr;vas = 0.027I0.89, where &PHgr; = perceived magnitude and I = stimulus intensity. The R2 values were 0.921 and 0.922 for the CAS and VAS groups, respectively. Analyses of covariance revealed no significant differences in the characteristics of these relationships, i.e., R2, slope, or y intercept, by scale type. Children used the same scale to complete the Childrens Pain Inventory (CPI), in which they rated the intensity and affect of 16 painful events (varying in nature and extent of tissue damage). Childrens CAS and VAS responses on the CPI were similar. Analyses of covariance indicated that there were no differences in either intensity or affective ratings by scale type. However, the mean number of painful events experienced by children increased significantly with age (P = 0.0001). Intensity ratings decreased significantly with age (P = 0.002), but affective ratings did not vary with age. The new instrument has equivalent psychometric properties to a 165 mm VAS. However, the CAS was rated as easier to administer and score than the VAS, so it may be more practical for routine clinical use. Since the CAS has fulfilled the first two criteria for a pain measure (psychophysical properties and discriminant validity), it is ethical to proceed with the formal definitive test for construct validity, in which children from various clinical populations use the CAS scale to assess their own pain.

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.

Depressive symptoms among mothers of children with epilepsy: A review of prevalence, associated factors, and impact on children

The impact of epilepsy is not limited to the child experiencing seizures, but affects all members of the family. As primary caregivers, mothers are particularly at risk for experiencing increased depressive symptoms and risk for clinical depression. The objective of this systematic review was to critically assess available evidence regarding the prevalence, associated factors, and impact of maternal depressive symptoms on child outcomes in epilepsy. Using a modified version of the Quality Index, studies were rigorously evaluated in terms of reporting, external validity, and internal validity. Limitations in the study designs and analytic techniques of previous research are discussed, and study methods to overcome these barriers are presented in order to advance this research area. Up to 50% of mothers of children with epilepsy are at risk for clinical depression. Correlates of maternal depressive symptoms include a number of modifiable risk factors such as role ambiguity, worry, and satisfaction with relationships. In addition, studies suggest that depressive symptoms in mothers have a negative impact on child outcomes in epilepsy including behavior problems and health‐related quality of life. The overall mean score on the Quality Index was 9.7, indicating a midrange quality score, suggesting a need for more methodologically robust studies.

A survey of children's acute, recurrent, and chronic pain: validation of the pain experience interview.

&NA; The ultimate objective of our epidemiological research is to complete a longitudinal population‐based study to document the prevalence and impact of acute, recurrent, and chronic pain in children and adolescents. As the first phase of our epidemiological research, we developed a comprehensive screening instrument for identifying children with acute, recurrent, and chronic pain, the Pain Experience Interview. We designed this interview to provide information about the lifetime and point prevalence of various pains, and also to provide information about the intensity, affect, duration, and frequency of childrens pain. The primary objective of this study was to validate the Pain Experience Interview using the discriminant validation procedure of group differences. The secondary objectives of our study were to obtain descriptive data on childrens acute, recurrent, and chronic pain experiences and to conduct exploratory analyses on age‐ and gender‐related differences in childrens pain experiences. We interviewed 187 children from five different health groups (arthritis, cancer, enuresis, recurrent headaches, and healthy) to provide distinct subsets of children with respect to their acute, recurrent, and chronic pain experience, and from four different age groups (5–7, 8–10, 11–13, and 14–16 years) to provide distinct subgroups with respect to childrens developmental level. To test the interview we determined a priori several study predictions about childrens pain experiences. These included four predictions about the common response patterns that we would expect to observe for all children based on our understanding of acute pain caused by trauma/disease, and six predictions about the distinct response patterns that we would expect to observe based on the known differences among children in their experiences of headache, acute treatment‐related pain, recurrent pain, and chronic pain. All study predictions were confirmed, demonstrating that the Pain Experience Interview is a valid screening instrument for differentiating children with different types of pain problems. The interview can provide estimates for the lifetime and point prevalence of various pains in children, and data on the intensity, affect, duration, and frequency of their pain experiences.

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.

Quality of life in children with new-onset epilepsy: a 2-year prospective cohort study.

Objectives: To assess health-related quality of life (HRQL) over 2 years in children 4−12 years old with new-onset epilepsy and risk factors. Methods: Data are from a multicenter prospective cohort study, the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES). Parents reported on childrens HRQL and family factors and neurologists on clinical characteristics 4 times. Mean subscale and summary scores were computed for HRQL. Individual growth curve models identified trajectories of change in HRQL scores. Multiple regression identified baseline risk factors for HRQL 2 years later. Results: A total of 374 (82) questionnaires were returned postdiagnosis and 283 (62%) of eligible parents completed all 4. Growth rates for HRQL summary scores were most rapid during the first 6 months and then stabilized. About one-half experienced clinically meaningful improvements in HRQL, one-third maintained their same level, and one-fifth declined. Compared with the general population, at 2 years our sample scored significantly lower on one-third of CHQ subscales and the psychosocial summary. After controlling for baseline HRQL, cognitive problems, poor family functioning, and high family demands were risk factors for poor HRQL 2 years later. Conclusions: On average, HRQL was relatively good but with highly variable individual trajectories. At least one-half did not experience clinically meaningful improvements or declined over 2 years. Cognitive problems were the strongest risk factor for compromised HRQL 2 years after diagnosis and may be largely responsible for declines in the HRQL of children newly diagnosed with epilepsy.

Neonatal morbidity associated with late preterm and early term birth: the roles of gestational age and biological determinants of preterm birth

BACKGROUND The aim of this study was to elucidate the role of gestational age in determining the risk of neonatal morbidity among infants born late preterm (34-36 weeks) and early term (37-38 weeks) compared with those born full term (39-41 weeks) by examining the contribution of gestational age within the context of biological determinants of preterm birth. METHODS This was a retrospective cohort study. The sample included singleton live births with no major congenital anomalies, delivered at 34-41 weeks of gestation to London-Middlesex (Canada) mothers in 2002-11. Data from a city-wide perinatal database were linked with discharge abstract data. Multivariable models used modified Poisson regression to directly estimate adjusted relative risks (aRRs). The roles of gestational age and biological determinants of preterm birth were further examined using mediation and moderation analyses. RESULTS Compared with infants born full term, infants born late preterm and early term were at increased risk for neonatal intensive care unit triage/admission [late preterm aRR=6.14, 95% confidence interval (CI) 5.63, 6.71; early term aRR=1.54, 95% CI 1.41, 1.68] and neonatal respiratory morbidity (late preterm aRR=6.16, 95% CI 5.39, 7.03; early term aRR=1.46, 95% CI 1.29, 1.65). The effect of gestational age was partially explained by biological determinants of preterm birth acting through gestational age. Moreover, placental ischaemia and other hypoxia exacerbated the effect of gestational age on poor outcomes. CONCLUSIONS Poor outcomes among infants born late preterm and early term are not only due to physiological immaturity but also to biological determinants of preterm birth acting through and with gestational age to produce poor outcomes.

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.

The impact of maternal depressive symptoms on health-related quality of life in children with epilepsy: a prospective study of family environment as mediators and moderators.

Purpose:  To examine the impact of maternal depressive symptoms (DS) on health‐related quality of life (HRQL) in children with new‐onset epilepsy and to identify family factors that moderate and mediate this relationship during the first 24 months after epilepsy diagnosis.