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Objective: To develop and evaluate a questionnaire, the ADHD Impact Module for Adults (AIM-A), to dimension quality of life for adults with attention-deficit/hyperactivity disorder (ADHD). Method: Six multi-item AIM scales were developed and evaluated in 317 participants enrolled in an open-label trial. Multitrait scaling analysis and correlations between the AIM-A and the ADHD Rating Scale were evaluated. Differences in scale scores based on severity (clinician rated), subtype, previous medication experience, and sensitivity to change were examined, and F statistics were compared for the AIM-A and the ADHD Rating Scale. Results: 100-80% scaling successes were observed for the AIM-A scales. Alpha coefficients were greater than or equal to 0.83. Significant correlations were observed (range: 0.494 to 0.200). The AIM-A discriminated based on severity, subtype, and medication experience (p less than or equal to 0.01) and was sensitive to change (n = 23, p less than or equal to 0.001). Conclusion: Psychometric findings are encouraging. Future efforts will examine validity and responsiveness in larger clinical samples with different therapeutic interventions. (Contains 8 tables.)

Objective. To develop and evaluate a parent-completed questionnaire for use by clinicians as part of routine care to assess the burden of diurnal and nocturnal enuresis on children and their families. Methods. The questionnaire consisted of items that measure the impact on the child and his/her parent, the child's coping ability and commitment to treatment, previous treatment success, family frustration and overall cohesion, and parental attitudes about enuresis and its treatment. Questionnaires (n = 208) were completed by parents during the child's scheduled office visit for enuresis at 5 specialty clinics across the United States. Traditional criteria were used to assess reliability and validity of the questionnaire, including analysis of variance. Results. Success rates provide evidence that many of the items in the child scale (79%) and all items in the parent scale (100%) met stringent criteria. [alpha] values were .62 and .77, respectively. Statistically significant differences were observed for the scales across responses on all but I global item, the majority of parental attitude items, whether the child urinated at bedtime, and the number of pads used. These findings suggest that the child's coping ability and commitment and the family's overall cohesion and frustration with the problem influence parental perceptions about the impact of enuresis on the child and the family. Conclusions. Findings about the performance of the new measure were satisfactory and suggest that, after further refinement, it should prove as a useful tool for clinicians treating enuresis in children. Pediatrics 2004; 113:334-344; quality of life, outcomes, pediatric enuresis, measurement., Enuresis (1) is estimated to affect 5 to 7 million US children [greater than or equal to] 6 years of age. (2) Yearly, the spontaneous rate of resolution for nocturnal [...]

Objective. Injury is the major cause of death in children ages 1 to 19 in the United States and is a leading cause of morbidity. Few studies have described the impact of injuries on the health status of affected children over time or used newer, child-specific measures in this population. The objective of this study was to describe the health status of children in the 6 months after admission for injury using child-specific health status measures. Methods. Injured children who were ages 3 to 18 years and admitted to an academic children's hospital were evaluated at discharge and at 1 and 6 months after discharge with a battery of outcome measures. The Child Health Questionnaire (CHQ) measured health status. The scores on the Functional Independence Measure (FIM) or pediatric version of the FIM tracked physical function. Results. A total of 195 children were enrolled. Boys outnumbered girls (67% vs 33%). Injury mechanisms and severity scores were typical of pediatric injury populations reported in other studies. Most (90%) children had at least 1 area of functional limitation by FIM at discharge, and 57% had some impairment at 1 month. By 6 months, 28% reported some limitation. At discharge, CHQ summary scores for the injury group were markedly depressed compared with normative populations. Differences in both physical health and psychosocial health summary scores between the injured and normal children persisted through 6 months of follow-up. Scores on 11 of 12 subscales were significantly below the normal population at discharge. This was particularly evident for bodily pain (injury group mean 49.1 vs normative mean 81.7) and parental impact-emotional (43.9 vs 80.3), and physical functioning (50.9 vs 96.1). Significant differences persisted in all subscales at 1 month and in 6 subscales at 6 months. Conclusions. The CHQ provided useful information about the impact of injuries on children and their families over time. Significantly reduced scores in several domains of the CHQ highlight problem areas for injury patients, several of which persist through 6 months of follow-up. Low scores in areas of bodily pain and parental emotional burden suggest that improved management of these problems is required. Additional study of risk factors for persistent problems after injury may suggest ways to improve functional outcomes of injured children and reduce the impact on their families. Pediatrics 2002; 110:337-342; pediatrics, injury, outcome, morbidity, Child Health Questionnaire., ABBREVIATIONS. CHQ, Child Health Questionnaire; FIM, Functional Independence Measure; JRA, juvenile rheumatoid arthritis; ISS, Injury Severity Score; HRQOL, health-related quality of life. Injury is widely recognized as a major public [...]

Abstract Background To evaluate health-related quality of life (HRQL) and medication satisfaction after switching from a stable dose of oral extended-release methylphenidate (ER-MPH) to methylphenidate transdermal system (MTS) via a dose-transition schedule in children with attention-deficit/hyperactivity disorder (ADHD). Methods In a 4-week, multisite, open-label study, 171 children (164 in the intent-to-treat [ITT] population) aged 6-12 years diagnosed with ADHD abruptly switched from a stable dose of oral ER-MPH to MTS nominal dosages of 10, 15, 20, and 30 mg using a predefined dose-transition schedule. Subjects remained on the scheduled dose for the first week, after which the dose was then titrated to an optimal effect. The ADHD Impact Module-Children (AIM-C), a disease-specific validated HRQL survey instrument measuring child and family impact, was used to assess the impact of ADHD symptoms on the lives of children and their families at baseline and study endpoint. Satisfaction with MTS use was assessed via a Medication Satisfaction Survey (MSS) at study endpoint. Both the AIM-C and MSS were completed by a caregiver (parent/legally authorized representative). Tolerability was monitored by spontaneous adverse event (AE) reporting. Results AIM-C child and family HRQL mean scores were above the median possible score at baseline and were further improved at endpoint across all MTS doses. Similar improvements were noted for behavior, missed doses, worry, and economic impact AIM-C item scores. Overall, 93.8% of caregivers indicated a high level of satisfaction with their child's use of the study medication. The majority of treatment-emergent AEs (> 98%) were mild to moderate in intensity, and the most commonly reported AEs included headache, decreased appetite, insomnia, and abdominal pain. Seven subjects discontinued the study due to intolerable AEs (n = 3) and application site reactions (n = 4). Conclusion This study demonstrates that MTS, when carefully titrated to optimal dose, may further improve child and family HRQL, as well as behavioral, medication worry, and economic impact item scores, as measured by the AIM-C in subjects switching to MTS from a stable dose of routinely prescribed oral ER-MPH after a short treatment period. Furthermore, following the abrupt conversion from oral ER-MPH to MTS, the majority of caregivers reported being highly satisfied with MTS as a treatment option for their children with ADHD. Trial Registration NCT00151983

Abstract Background Few measures of health related quality of life exist for use with preschool aged children. The objective of this study was to assess reliability and validity of a new multidimensional generic measure of health-related quality of life developed for use with preschool children. Methods Cross-sectional survey sent to parents as their child turned 3 1/2 years of age. The setting was the province of British Columbia, Canada. Patients included all babies admitted to tertiary level neonatal intensive care units (NICU) at birth over a 16-month period, and a consecutive sample of healthy babies. The main outcome measure was a new full-length questionnaire consisting of 3 global items and 10 multi-item scales constructed to measure the physical and emotional well-being of toddlers and their families. Results The response rate was 67.9%. 91% (NICU) and 84% (healthy baby) of items correlated with their own domain above the recommended standard (0.40). 97% (NICU) and 87% (healthy baby) of items correlated more highly (≥ 2 S.E.) with their hypothesized scale than with other scales. Cronbach's alpha coefficients varied between .80 and .96. Intra-class correlation coefficients were above .70. Correlations between scales in the new measure and other instruments were moderate to large, and were stronger than between non-related domains. Statistically significant differences in scale scores were observed between the NICU and healthy baby samples, as well as between those diagnosed with a health problem requiring medical attention in the past year versus those with no health problems. Conclusions Preliminary results indicate the new measure demonstrates acceptable reliability and construct validity in a sample of children requiring NICU care and a sample of healthy children. However, further development work is warranted.

Purpose: To describe the development of pediatric family relationships measures, with versions for child self-report (8-17 years) and parent-report for children 5-17 years old. Measures were created for integration into the Patient Reported Outcomes Measurement Information System (PROMIS®).Methods: Semi-structured interviews with 10 experts, 24 children, and 8 parents were conducted to elicit and clarify essential elements of family relationships. A systematic literature review was conducted to identify item concepts representative of each element. The concepts were transformed into items that were iteratively revised based on cognitive interviews (n = 43 children) and item translatability review. Psychometric studies involving 2846 children and 2262 parents were conducted to further refine and validate the instruments.Results: Qualitative procedures supported the development of content valid Family Relationships item banks. Final child- and parent-report item banks each contain 47 items. Unidimensional item banks were calibrated using IRT-modeling to estimate item parameters representative of the US population and to enable computerized adaptive test administration. Four- and eight-item short forms were constructed for standard fixed format administration. All instruments have strong internal consistency, retest-reliability, and provide precise estimates of various levels of family relationship quality. Preliminary evidence of the instruments' validity was provided by known-group comparisons and convergence with legacy measures.Conclusion: The PROMIS pediatric Family Relationships measures can be applied in research focused on determinants, outcomes, and the protective effects of children's subjective family relationship experiences. [ABSTRACT FROM AUTHOR]