Louis S. Matza

The link between health-related quality of life and clinical symptoms among children with attention-deficit hyperactivity disorder

ABSTRACT. Clinical research on attention-deficit hyperactivity disorder (ADHD) has begun to integrate measures of health-related quality of life (HRQL) as part of the overall assessment of treatment outcomes. This study examines the association between HRQL and measures of clinical symptoms of ADHD. Data were gathered from 297 children and adolescents in an 8-week, randomized, double-blind, placebo-controlled, clinical trial of atomoxetine treatment for ADHD. HRQL was assessed with the Child Health Questionnaire 50-item Parent Form. ADHD symptoms were assessed with the ADHD Rating Scale-IV; Parent Version and Clinical Global Impressions-ADHD-Severity. Associations between HRQL and clinical symptoms were assessed with correlations, analyses of variance with post hoc comparisons, and t tests. The Child Health Questionnaire 50-item Parent Form scales assessing psychosocial domains of HRQL were significantly negatively correlated with clinical measures. Improvement in clinical symptoms was associated with corresponding improvement in psychosocial aspects of HRQL. The findings suggest that HRQL instruments can add important information to efficacy measures in clinical trials of ADHD treatment.

Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants.

BACKGROUNDnThe aim of this study was to identify key aspects of the impact of cognitive impairment on patients with mild cognitive impairment (MCI) and mild probable Alzheimer disease (AD) and their informants, and identify overlap and differences between the groups.nnnMETHODSnStructured focus group discussions were conducted with MCI patients, AD patients, MCI informants, and AD informants. Participants were recruited from memory clinics in the U.K. and the U.S.A. A total of 20 AD and 20 MCI patients and 16 AD and 11 MCI informants participated. Sessions were content reviewed to identify key impacts of cognitive impairment; results were compared across diagnostic groups and for patients and informants.nnnRESULTSnSeven key themes emerged: uncertainty of diagnosis, skill loss, change in social and family roles, embarrassment and shame, emotionality, insight, and burden. Patients were able to discuss the impact of cognitive impairment on their lives and reported frustration with recognized memory problems, diminished self-confidence, fear of embarrassment, concerns about changing family roles due to cognitive impairment, and anxiety. Informants reported more symptoms and more impairment than did patients and indicated increased dependence on others among patients.nnnCONCLUSIONnMCI and mild AD exert substantial burden on patients lives and the lives of those close to them.

Health state utilities for childhood attention-deficit/hyperactivity disorder based on parent preferences in the United kingdom.

Objectives. The purpose of this study was to use standard gamble (SG) utility interviews to assess parent preferences for health states of childhood attention-deficit/hyperactivity disorder (ADHD). Methods. The study was conducted in August 2003 in London, England. Parents (N = 83) of children diagnosed with ADHD completed SG utility interviews, rating their child’s current health and 14 hypothetical health states describing untreated ADHD and ADHD treated with a nonstimulant, immediate-release stimulant, or extended-release stimulant. Raw temporary utilities ranging from 0 (worst health) to 1 (best health) were adjusted to a chronic utility scale ranging from 0 (death) to 1 (best health) using a linear transformation. Parents rated the severity of their children’s ADHD symptoms using the Attention-Deficit/Hyperactivity Disorder Rating Scale-IV (ADHD-RS) and their children’s health-related quality of life using the EuroQol EQ-5D. Results. Raw and adjusted SG ratings of hypothetical health states ranged from 0.63-0.90 and 0.88-0.96, respectively. Parents’ raw SG scores of their child’s current health state (mean = 0.72) were significantly correlated with inattentive, hyperactive, and overall ADHD symptoms (r = -0.25, -0.27, -0.27; P < 0.05) and the EQ-5D visual analogue scale (r = 0.26; P < 0.05). Conclusion. This UK-based study suggests that parent SG interviews are a valid method for obtaining utilities for child ADHD-related health states. The utilities obtained in this study would be appropriate for use in a cost-utility analysis evaluating the costs and benefits of childhood ADHD treatments in the United Kingdom.

Parent-proxy EQ-5D ratings of children with attention-deficit hyperactivity disorder in the US and the UK

AbstractBackground: The symptoms of attention-deficit hyperactivity disorder (ADHD) are associated with impairment in multiple domains of health-related quality of life (HR-QOL). HR-QOL of children with ADHD has been assessed by relatively long multidimensional questionnaires. A review of the literature found no studies using the brief, well established EuroQoL Five-Dimension Questionnaire (EQ-5D) to estimate the HR-QOL of children with ADHD. The objective of this study was to assess the HR-QOL of children with ADHD using parents’ responses to the proxy version of the EQ-5D.n Methods: Participants were recruited in the midwestern US and in the vicinity of London, England. All parents completed three questionnaires: the EQ-5D proxy version; a measure of ADHD symptoms based on Diagnostic and Statistical Manual of Mental Disorders (4th Edition) [DSM-IV] criteria (the Attention-Deficit/Hyperactivity Disorder Rating Scale-IV — Parent Version [ADHD-RS]); and either the Child Health Questionnaire — Parent Form 50 (CHQ-PF50) or the Child Health and Illness Profile — Child Edition (CHIP-CE), which are both generic multidimensional paediatric HR-QOL questionnaires.n Results: A total of 126 parents of children with ADHD participated in the study: 43 in the US and 83 in the UK. On the EQ-5D, participants indicated that 78.6% of their children experienced some problems or extreme problems performing usual activities, while 64.8% believed their child demonstrated some or extreme anxiety or depression. The mean EQ-5D index score was 0.75 and the mean visual analogue scale (VAS) score was 73.9. The EQ-5D index and VAS scores were found to be significantly correlated (p < 0.05) with several domains of the CHQ-PF50 (e.g. Mental Health, Self-Esteem, Family Activities, Psychosocial Summary Score) and the CHIP-CE (e.g. Satisfaction, Comfort, Academic Performance, Peer Relations). The EQ-5D scales were also significantly correlated with the ADHD-RS scales (p < 0.001).n Conclusion: The proxy version of the EQ-5D, completed by parents, was able to detect impairment in children diagnosed with ADHD in the US and the UK. Furthermore, the EQ-5D index and VAS scores demonstrated construct validity among this sample through significant correlations with an ADHD symptom measure and previously validated multidimensional QOL instruments. These results suggest that parent-proxy EQ-5D ratings are feasible and valid for use as part of an overall health outcomes assessment in clinical studies of childhood ADHD.

Assessment of health state utilities for attention-deficit/hyperactivity disorder in children using parent proxy report

This study used standard gamble (SG) utility interviews to assess parent preferences for health states of childhood attention-deficit/hyperactivity disorder (ADHD). Health state utilities are needed to calculate quality-adjusted life years (QALYs), a critical outcome measure in cost-effectiveness studies of new treatments. Parents (n=43) of children diagnosed with ADHD completed SG utility interviews, rating their child’s current health and 11 hypothetical health states describing untreated ADHD and ADHD treated with a stimulant or non-stimulant. Parents completed questionnaires on their children’s symptoms and health-related quality of life (HRQL). Parents’ SG rating of their child’s current health state (mean of 0.74 on a utility scale ranging from 0 to 1) was significantly correlated with inattentive, hyperactive, and overall ADHD symptoms (r=0.37, 0.36, and 0.40 respectively; p < 0.05) and psychosocial HRQL domains. Hypothetical health state utilities ranged from 0.48 (severe untreated ADHD) to 0.88 (effective and tolerable non-stimulant treatment). Comparisons between health states found expected differences between untreated mild, moderate, and severe ADHD health states. When both treatments were effective and tolerable, parents preferred the non-stimulant health state over the stimulant health state (p < 0.03). Results suggest that parent SG interviews are a feasible and useful method for obtaining utility scores that can be used in cost-effectiveness models of ADHD treatment.

Depression and health-related quality of life for low-income African-American women in the U.S.

The health-related quality of life (HRQL) impact of depression for low-income young African-American women has not been quantified. Baseline scores on a generic HRQL measure, the SF-36, from a randomized controlled trial of depression treatments were used as a basis for describing the HRQL of depressed (nxa0=xa0124) and non-depressed (nxa0=xa044) low-income African-American young women. Results were compared to U.S. normative values for well adults and for depressed adults. Relationship between SF-36 scores and demographic variables were examined, and SF-36 scores were compared for those with depression only and those with comorbid anxiety. SF-36 scores were lower for all eight subscales relative to the U.S. norms (p < 0.05) and lower on two subscales relative to a general U.S. depressed sample (p < 0.05). Higher age and higher number of children was associated with poorer scores. Comorbid anxiety was present in 66% of the depressed sample; all SF-36 scores for the sample with comorbid anxiety were significantly lower than scores for subjects with depression alone. Results indicate the substantial HRQL impact of depression among low-income young African-American women with depression.

Impact of atomoxetine on health-related quality of life and functional status in patients with ADHD.

In children and adults, attention-deficit hyperactivity disorder is strongly associated with impairment in health-related quality of life as well as social, academic and occupational functioning. Thus, evaluation of treatment for attention-deficit hyperactivity disorder should assess the impact on functional status and health-related quality of life as well as potential symptom improvement. Atomoxetine is a relatively new nonstimulant medication indicated for the treatment of attention-deficit hyperactivity disorder in children and adults. The purpose of the current paper is to review studies examining the functional and health-related quality of life outcomes of atomoxetine treatment. Studies in this review included four types of measures: generic health-related quality of life instruments, condition-specific health-related quality of life instruments, functional status measures and utility-based assessments. A literature search identified 11 relevant outcome studies and two additional studies using a utility approach. Among children and adolescents, atomoxetine was associated with greater benefits than placebo on generic and condition-specific health-related quality of life measures (domains included children’s behavior, mental health, self-esteem and parental impact) as well as measures of classroom behavior and evening behavior. Although findings from adult trials were not as consistent, initial results suggest that adults may also experience functional improvement (e.g., work, social and family functioning) associated with atomoxetine treatment. Overall, findings provide compelling support for the hypothesis that treatment of attention-deficit hyperactivity disorder can have broad positive effects beyond symptom improvement. Studies with active comparators are needed to determine whether the health-related quality of life benefits of atomoxetine are superior or comparable to those of stimulant medications.

Validation of a new symptom impact questionnaire for mild to moderate cognitive impairment

BACKGROUNDnPatient-reported outcomes assessment enhances the understanding of disease impact in a range of disorders. At mild levels of cognitive impairment the patient perspective on functioning, behavior and symptoms can be particularly valuable for syndrome characterization when clinical and neuropsychological findings are limited. We have evaluated the psychometric performance of the 55-item Patient-Reported Outcomes in Cognitive Impairment (PROCOG), a new patient-reported measure, to measure mild to moderate cognitive impairment symptoms and their impact from the perspective of patients with dementia of the Alzheimers type (DAT) and mild cognitive impairment (MCI).nnnMETHODSnThe sample of 75 DAT patients, 78 MCI patients and 33 cognitively intact control subjects (> 64 years) was recruited through medical centers in the U.SA. Validity was assessed through correlation to the Quality of Life--Alzheimers Disease (QOL-AD) and Centers for Epidemiologic Studies--Depression Scale (CES-D) and neuropsychological assessments (WAIS subscales and MMSE).nnnRESULTSnPROCOG scores for MCI patients were generally intermediate between DAT and control subjects. Internal consistency and test-retest reliability were acceptable. Correlations with the CES-D and QOL-AD were in the moderate to high range; correlations with the neuropsychological measures were low to moderate.nnnCONCLUSIONSnThe PROCOG demonstrated good to excellent psychometric properties among a sample of older adults with MCI and DAT as well as cognitively intact older adult control subjects and provides a method for collecting unique information on the patient experience of cognitive impairment. Subscales permit focused evaluation of domains relevant to the patients experience of cognitive impairment.

Challenges to time trade-off utility assessment methods: when should you consider alternative approaches?

In recent years, the time trade-off (TTO) method, most commonly with a 10-year time horizon, has been the most frequently used approach for direct health state utility assessment, likely due to National Institute for Health and Care Excellence (NICE) preference for comparability with the EQ-5D, which has a utility scoring algorithm derived via this method. Although comparability to previous utility studies is important, there are situations when the TTO method may not be appropriate. The purpose of the current review is to highlight challenges to the TTO method. Five challenges to the TTO method are discussed: mild health states, small differences among health states, temporary health states, pediatric health states, and assessment of samples with particular characteristics. Some of these challenges are associated with the 10-year time horizon, while other situations may raise issues for TTO methods regardless of the time horizon. Alternative approaches for valuing health states are suggested.

Impact of caregiver and parenting status on time trade-off and standard gamble utility scores for health state descriptions

BackgroundThe purpose of this study was to examine the effect of caregiver status on time trade-off (TTO) and standard gamble (SG) health state utility scores. Respondents were categorized as caregivers if they reported that either children or adults depended on them for care.MethodsThis study was a secondary analysis of data from three studies in which general population samples rated health state descriptions. Study 1: UK; four osteoarthritis health states. Study 2: UK; three adult ADHD health states. Study 3: US; 16 schizophrenia health states. All three studies included time trade-off assessment. Study 1 also included standard gamble. Descriptive statistics were calculated to examine willingness to trade in TTO or gamble in SG. Utilities for caregivers and non-caregivers were compared using t-tests and ANCOVA models.ResultsThere were 364 respondents including 106 caregivers (nu2009=u200930, 47, and 29 in Studies 1, 2, and 3) and 258 non-caregivers. Most caregivers were parents of dependent children (78.3%). Compared to non-caregivers, caregivers had more responses at the ceiling (i.e., utilityu2009=u20090.95), indicating less willingness to trade time or gamble. All utilities were higher for caregivers than non-caregivers (mean utility difference between groups: 0.07 to 0.16 in Study 1 TTO; 0.03 to 0.17 in Study 1 SG; 0.06 to 0.10 in Study 2 TTO; 0.11 to 0.22 in Study 3 TTO). These differences were statistically significant for at least two health states in each study (pu2009<u20090.05). Results of sensitivity analyses with two caregiver subgroups (parents of dependent children and parents of any child regardless of whether the child was still dependent) followed the same pattern as results of the primary analysis. The parent subgroups were generally less willing to trade time or gamble (i.e., resulting in higher utility scores) than comparison groups of non-parents.ConclusionsResults indicate that caregiver status, including being a parent, influences responses in time trade-off health state valuation. Caregivers (i.e., predominantly parents) were less willing than non-caregivers to trade time, resulting in higher utility scores. This pattern was consistent across multiple health states in three studies. Standard gamble results followed similar patterns, but with less consistent differences between groups. It may be useful to consider parenting/caregiving status when collecting, interpreting, or using utility data because this demographic variable could influence results.