Developmental-behavioural literature: Abstracts and commentaries

OUTCOMES

Anderson CJ, Vogel LC. Domain-specific satisfaction in adults with pediatric-onset spinal cord injuries. Spinal Cord 2003;41:684–91.

STUDY DESIGN: Interview using a structured questionnaire and standardized measures.

OBJECTIVES: To determine domain-specific satisfaction levels in adults with pediatric-onset spinal cord injuries (SCI), to determine factors associated with these levels of satisfaction, and to determine the relationship of domain-specific satisfaction to overall life satisfaction in this population.

SETTING: US and Canada.

METHODS: The participants were adults who sustained SCI at age 18 years or younger and were 24 years of age or older at the time of interview and did not have significant head injury. In addition to providing information about themselves, including education level, employment, marital status, and community participation, they were asked to rate their level of satisfaction in seven domains: transportation in the community, educational achievement, employment opportunities, income, social/recreational opportunities, dating opportunities, and sexual experience. They also completed the satisfaction with life scale (SWLS), the Craig handicap assessment and reporting technique, the functional independence measure, and the short-form-12 perceived health scale.

RESULTS: A total of 216 individuals were interviewed. The mean age at injury was 14 years and the mean age at interview was 29 years. From most satisfied to least satisfied, the domains were ranked in the following order: satisfaction with transportation in the community, educational achievement, social and recreational opportunities, sexual experiences, dating opportunities, job opportunities, and income. Age at interview, gender, and perceived health were identified in regression analyses as predictors of some of the domain-specific satisfactions, but the primary predictive factors were in the area of participation. Neither severity of neurologic impairment nor level of functional independence was a predictor for any of the domains. Satisfaction in each of the domains was significantly associated with SWLS and satisfaction with dating, job opportunities, education, and income were identified as predictive factors in a regression analysis.

CONCLUSIONS: Dating opportunities, job opportunities, and income are the three domains in which adults with pediatric-onset SCI are least satisfied and those domains have a significant impact on overall satisfaction.

Comment: This study is important in informing us about the ‘adult’ outcome of a specific ‘paediatric’ condition. In many areas of child health, perhaps especially in the developmental-behavioural aspects of the field, the challenges faced by children and youth with chronic conditions do not disappear when adolescence is over; however, the ‘adult’ world of health services is often not ready to accommodate ‘our’ clients in their adult systems. Information about the outcomes of adults with child-onset conditions is one of the important ingredients in building better bridges between child health and the adult lives of young people with chronic conditions. There are huge opportunities for the whole paediatric field to learn about the adult outcomes of paediatric patients and to feed that knowledge back into the paediatric health systems in which we work.

ACCESS TO CARE FOR CHILDREN AND YOUTH

Blais R, Breton JJ, Fournier M, St-Georges M, Berthiaume C. Are mental health services for children distributed according to needs? Can J Psychiatry 2003;48:176–86.

OBJECTIVES: The purpose of this study was twofold: 1) to determine whether publicly funded mental health services and resources available in 4 large regions in the province of Quebec were distributed according to the mental health needs of children aged 6 to 14 years and 2) to assess whether the variations in mental health services and resources across the 4 regions had changed over a 5-year period.

METHODS: Indicators of need according to the child's parent (presence of mental disorder, measure of adaptation, and perception of need for help) from an epidemiologic survey of 2400 non-institutionalized children were compared with both in-school and community professional resources and with physician and hospital services in 1992–1993. Resource and service data were also collected for 1997–1998. Resource and service data came from professional colleges and government administrative databases.

RESULTS: No significant regional differences were found for need indicators, but there were large discrepancies in mental health resources and services in 1992–1993. Differences in professional resources were largest for special education teachers in the school system and for psychiatrists in the community. The regional differences in resources and services were as large in 1997–1998 as they were in 1992–1993.

CONCLUSIONS: Despite universal health care in Quebec and a government mental health policy stressing equity of access, the available mental health resources for children aged 6 to 14 years are not distributed across regions according to needs. More evidence-based planning is required, specifically using epidemiologic survey data, to match resources to needs and to monitor changes over time.

Greenberg ML, Barr RD, DiMonte B, McLaughlin E, Greenberg C. Childhood cancer registries in Ontario, Canada: Lessons learned from a comparison of two registries. Int J Cancer 2003;105:88–91.

Two childhood cancer registries exist in Ontario. One (POGO) accrues by active registration by pediatric cancer centers, utilizing a histologically based classification system. The other accrues by passive linkage within a larger adult oriented cancer registry (OCR) using a topographically based classification. A reportedly high incidence of childhood cancer based on the latter registry prompted a comparison of the content of the two registries over a 2-year period with the hypothesis that there would be systematic accrual errors. All registrations in both registries for the specified period were reviewed systematically and validated by pathology reports. A small number (2.6%) of registrations in the passive registry were not incident cases, while 2 particular pathologic diagnoses were included in the histologically based registry and not the topographically based registry. These were low grade gliomas and Langerhans cell histiocytosis (LCH). The validated annual incident rate (15.6 per 100 000 children 0–14 years of age, excluding LCH) is slightly higher than that reported in other industrialized countries. Ninety-six percent of children aged 0–14 were treated in pediatric oncology centers, while only 46% of adolescents aged 15–17 were treated in such centers. Of the remaining adolescents, more than one-third had lymphomas. This maldistribution of care provided for the young adolescent population may compromise their survival prospects. The results of this study should prompt revision of health care policy and patterns of service delivery.

Comment: These two reports by Blais et al and Greenberg et al concern disparate aspects of child health, but both address issues of great importance – the distribution of services and the level of expertise needed by children and youth with complex disorders. The report by Blais et al suggests that even in a province (Quebec) where mental health services are seen as a priority, there continue to be major problems regarding the distribution of resources to meet the needs of children and youth with mental health issues. Greenberg et al speak about the different types of services received by adolescents with certain malignancies, with the worrying possibility that, as with other ‘childhood’ conditions, the services received by youth in adult programs may be different, and perhaps less specific, than those received in paediatric programs. Both reports point to the need for a role for expert professionals to work collaboratively with governments responsible for the allocation of services, and for policy makers to understand that children are not simply a ‘special-interest group’. This may help to ensure equitable distribution and access for all Canadian children and youth to the most appropriate and expert services available.

INJURIES AND BEHAVIOUR DISORDERS

Brehaut JC, Miller A, Raina P, McGrail KM. Childhood behavior disorders and injuries among children and youth: A population-based study. Pediatrics 2003;111:262–9.

CONTEXT: While an association between pediatric behavioral disorders and injuries is generally acknowledged, no studies have measured the risk for injury in the context of a large, population-based study that is free of cohort biases.

OBJECTIVES: To examine the association between childhood behavior disorders ([CBDs] as indicated by prescription for methylphenidate [MPH]) and a variety of injury outcomes, and to evaluate the risk for injury among these children after controlling for known demographic correlates.

DESIGN: Population-based database analysis of all children in British Columbia (BC) under the age of 19 as of December 31, 1996; comparison of those who had been prescribed MPH and therefore placed in the CBD group (n=16,806) and those who were not (n=1,010,067). Demographic information collected was as follows: age, sex, measures of socioeconomic status, and region of residence.

OUTCOME MEASURES: Common types of childhood injury in BC: International Classification of Diseases, Ninth Revision N-codes (fractures, open wounds, poisoning/toxic effect, concussion, intracranial, burns) and E-codes (falls, postoperative complications, motor vehicle accidents, struck by object, adverse effects of drugs, suffocation, drowning).

DATA SOURCE: BC Linked Health Data Set and the BC Triplicate Prescription Program.

RESULTS: After controlling for known demographic correlates, the odds for injury was greater among those treated with MPH and presumed to have a behavioral disorder, when injury was characterized either by type (1.67; 99% confidence interval: 1.54–1.81) or cause (1.52; 99% confidence interval: 1.40–1.66) of injury. This increased risk extended to unexpected categories of injury such as postoperative complications and adverse effects of drugs.

CONCLUSIONS: Children with CBDs have >1.5 times the odds of sustaining injuries of a variety of types from a variety of causes, even after controlling for known demographic correlates, than those without behavioral disorders. The risks for these children extend beyond those that might be directly associated with impulsivity and overactivity. Injury prevention strategies aimed at this group of children and youth would be beneficial. Policy-makers should account for increased risk of a wide variety of injuries in this group of children and youth.

Comment: In exploring the connection between childhood behaviour disorders and injuries, Brehaut et al used population-based data to emphasize a point that has been reported in cohort studies – children with behaviour disorders have higher risks for injuries. These findings underscore the need for all health professionals who work with children with challenging behaviours to engage in anticipatory guidance and in discussions aimed at primary prevention of injuries in the very large population of children with behaviour challenges who are recognized to be ‘at risk’ for preventable problems.

GASTROSTOMY TUBES: MOTHERS' VIEW

Guerriere DN, McKeever P, Llewellyn-Thomas H, Berall G. Mothers' decisions about gastrostomy tube insertion in children: Factors contributing to uncertainty. Dev Med Child Neurol 2003;45:470–6.

The purpose of this study was to explore O'Connor's four factors contributing to mothers' uncertainty concerning gastrostomy tube (G-tube) insertion in their children (lack of information; unclear value trade-offs; lack of support; social pressure) in a substitute decision-making context. Fifty mothers participated in one semi-structured interview at the time of their children's G-tube insertion. Children's ages ranged from 2 weeks to 17 years, slightly more than half were male, and most had a primary diagnosis related to a neurological (n=27) or cardiac (n=10) condition. Two-thirds of the mothers identified topics about which they wanted more information, the majority reported both gains and losses associated with their decision, three-quarters reported that they had received support during decision making, and half reported that they had felt pressure from family and health care professionals. Results indicate that mothers' decisions about G-tube insertion are complex and difficult. The existence and importance of O'Connor's factors in this context are confirmed by mothers' accounts. Because these factors are believed to be modifiable, health care professionals have the opportunity to potentially minimize the extent to which the factors contribute to decision uncertainly. It is recommended that health care professionals implement interventions focused on minimizing uncertainty.

Comment: When technological advances become available in medicine, they often carry with them a complex mix of potential advantages and challenges. The work of Guerriere et al speaks to the experiences and perceptions of mothers of children or youth who face the need for a gastrostomy. What might be a relatively simple surgical procedure in fact requires a decision often reached with difficulty and associated with challenging trade-offs. For the parents, the decision is perhaps equivalent to the ‘lesser of two evils’ for a problematic situation, as opposed to the ‘simple’ solution to feeding and nutritional problems that health care providers might imagine. There is both an opportunity and a challenge for professionals working with families in predicaments like these to listen carefully and to explore parental feelings when they face dilemmas like the placement of a gastrostomy tube.

CLASSIFICATION OF CHRONIC HEALTH CONDITIONS IN CHILDREN AND YOUTH

McDougall J, Miller LT. Measuring chronic health condition and disability as distinct concepts in national surveys of school-aged children in Canada: A comprehensive review with recommendations based on the ICD-10 and ICF. Disabil Rehabil 2003;25:922–39.

PURPOSE: With the aim of improving the measurement of child health and disability in survey research, this paper reviews the coverage of chronic health conditions and the domains of disability and related environmental factors as they are laid out in the ICD-10 and ICF, respectively, in national surveys of school-aged children conducted in Canada since 1980. Recommendations are made for future survey use and construction.

METHODS: Two reviewers independently examined each of the surveys. Coverage of chronic health conditions, the domains of disability, and environmental factors in survey questions was identified by mapping question content onto ICD-10 and ICF codes. The reviewers then compared their findings and came to a final consensus.

RESULTS: Surveys vary in the range and depth of coverage of the ICD-10 and ICF chapters. Disability surveys and health surveys for persons aged 12 and over contain the most comprehensive lists of chronic conditions. Coverage of impairments is limited. Coverage of activity limitations and participation restrictions is most limited in the domains of personal care and domestic life. Environmental factors not covered include natural environmental changes, attitudes, and policies.

CONCLUSIONS: Development of a comprehensive standard list of chronic health conditions based on the ICD-10 and development of standard survey measures of the domains of disability and environmental factors based on the ICF for use in surveys of school-aged children would facilitate an understanding of children's health and disability in the context of the current international health framework provided by the World Health Organization.

Comment: This study appealed to me for two reasons. First, the names we give to health conditions both reflect how we think about them and how we group them. Second, with the addition of the World Health Organization's International Classification of Functioning, Disability and Health (1), a new systemic framework has been created and has quickly gained currency in many parts of the world. It is very important that the biomedical dimensions of health problems (encompassed by the the International Statistical Classification of Diseases and Related Health Problems, tenth revision [2 ]) be complemented by explorations of the impact of those health conditions on function and participation. With the emerging interest in the ‘participation’ of children with disabilities, it will be very important for epidemiological and clinical researchers to capture information about both the health problems and the ensuing functional consequences of those conditions on children.

QUALITY OF LIFE OF PREMIES: PARENTAL VIEWS

Saigal S, Stoskopf BL, Burrows E, Streiner DL, Rosenbaum PL. Stability of maternal preferences for pediatric health states in the perinatal period and 1 year later. Arch Pediatr Adolesc Med 2003;157:261–9.

BACKGROUND: We have previously shown that parents of premature children provided relatively high valuation of their children's health state in adolescence. However, stability of parental preferences for future pediatric health states is unknown during the antenatal and neonatal periods and infancy.

OBJECTIVE: To determine whether preference-based, health-related quality-of-life scores obtained serially from 2 cohorts (women with high-risk pregnancies [antenatal cohort] and mothers of very low-birth-weight newborns [VLBW cohort]) are stable during the first year after birth.

DESIGN AND METHODS: Longitudinal cohort study. Participants included 80 high-risk pregnant women recruited at 24±2 weeks of gestation, and 75 mothers of VLBW infants recruited within 1 week of delivery. We conducted 2 to 3 standardized interviews (antenatally, at 1 week after delivery, and at the 12-month corrected age visit) using the Standard Gamble technique to elicit preferences for 5 pediatric hypothetical health states with varying disabilities.

RESULTS: Seventy-three mothers with high-risk pregnancies (91%) and 72 mothers of VLBW infants (96%) completed all scheduled interviews. As expected, preference scores were affected by the level of severity of the hypothetical health states (antenatal cohort, F(4,288)=87.0 [P<0.001]; VLBW cohort, F(4,284)=64.2 [P<0.001]). At each assessment, at least 38% of mothers rated 1 or more health states as worse than death. Repeated-measures analysis showed no change in preference scores over time (antenatal cohort, F(2,144)=1.3 [P=0.29]; VLBW cohort, F(1,71)=0.7 [P=0.42]). Maternal socioemotional factors, infant severity of illness at birth, and global health at 12 months did not affect preference scores.

CONCLUSION: In our population, maternal preference scores for disabling health states appear to be stable during the first year of life and are unaffected by key maternal and infant variables.

Comment: For many years, Dr Saroj Saigal has been asking and trying to answer very important questions about the quality of life of children who were premature infants and their families. This study (of which I am a co-author) addresses and studies an issue that is too easy to prejudge – whether parental values and preferences, sought and made at times of great stress, can be considered stable and therefore ‘valid’ reflections of what these same parents might otherwise say in a different setting. Within the structure of an experimental paradigm, this study has shown clearly that maternal preference scores for disabling health states remain stable over time. These findings strongly suggest that even in times of distress, parental preferences in decision-making can be considered true representations of what parents really feel, and they should be sought and used in the process of counselling and decision-making with families.

REFERENCES