Long-Term Psychosocial and Health Economy Consequences of ADHD, Autism, and Reading-Writing Disorder
Identifieur interne : 000E03 ( Istex/Corpus ); précédent : 000E02; suivant : 000E04Long-Term Psychosocial and Health Economy Consequences of ADHD, Autism, and Reading-Writing Disorder
Auteurs : Agneta Nydén ; Karl-Johan Myrén ; Christopher GillbergSource :
- Journal of Attention Disorders [ 1087-0547 ] ; 2008-09.
Abstract
Objective: The study aims to evaluate psychosocial, societal, and family cost consequences of a psychoeducational intervention program. Methods: Sixty boys with ADHD, Asperger syndrome/high-functioning autism (AS/HFA), and reading and writing disorder (RD/WD) were allocated to participate in a service evaluation project. Every other boy in each diagnostic group was randomly allocated to receive either (a) a special education program (clinical index group) or (b) follow-up without the special education program (clinical comparison group). Nine years after initial assessments the stability of the psychosocial and economic resource consequences over time was studied. Results: ADHD, AS/HFA, and RD/WD all had severe impact on family life quality. The societal costs were high, but no significant differences in resource use or in total costs were found between the clinical index and the comparison groups. Conclusions: The results underscore the very long-term need for support including individually tailored reevaluations and carefully monitored intervention programs adapted to family needs and severity of child disorder. (J. of Att. Dis. 2008; 12(2) 141-148)
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DOI: 10.1177/1087054707306116
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<record><TEI wicri:istexFullTextTei="biblStruct"><teiHeader><fileDesc><titleStmt><title xml:lang="en">Long-Term Psychosocial and Health Economy Consequences of ADHD, Autism, and Reading-Writing Disorder</title><author wicri:is="90%"><name sortKey="Nyden, Agneta" sort="Nyden, Agneta" uniqKey="Nyden A" first="Agneta" last="Nydén">Agneta Nydén</name><affiliation><mods:affiliation>Eli Lilly Sweden AB,</mods:affiliation></affiliation><affiliation><mods:affiliation>E-mail: agneta.nyden@vgregion.se</mods:affiliation></affiliation></author><author wicri:is="90%"><name sortKey="Myren, Karl Johan" sort="Myren, Karl Johan" uniqKey="Myren K" first="Karl-Johan" last="Myrén">Karl-Johan Myrén</name><affiliation><mods:affiliation>Eli Lilly Sweden AB</mods:affiliation></affiliation></author><author wicri:is="90%"><name sortKey="Gillberg, Christopher" sort="Gillberg, Christopher" uniqKey="Gillberg C" first="Christopher" last="Gillberg">Christopher Gillberg</name><affiliation><mods:affiliation>University of Göteborg</mods:affiliation></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:BBC24444607371F69E51291328B3C1A64F470843</idno><date when="2008" year="2008">2008</date><idno type="doi">10.1177/1087054707306116</idno><idno type="url">https://api.istex.fr/document/BBC24444607371F69E51291328B3C1A64F470843/fulltext/pdf</idno><idno type="wicri:Area/Istex/Corpus">000E03</idno><idno type="wicri:explorRef" wicri:stream="Istex" wicri:step="Corpus" wicri:corpus="ISTEX">000E03</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a" type="main" xml:lang="en">Long-Term Psychosocial and Health Economy Consequences of ADHD, Autism, and Reading-Writing Disorder</title><author wicri:is="90%"><name sortKey="Nyden, Agneta" sort="Nyden, Agneta" uniqKey="Nyden A" first="Agneta" last="Nydén">Agneta Nydén</name><affiliation><mods:affiliation>Eli Lilly Sweden AB,</mods:affiliation></affiliation><affiliation><mods:affiliation>E-mail: agneta.nyden@vgregion.se</mods:affiliation></affiliation></author><author wicri:is="90%"><name sortKey="Myren, Karl Johan" sort="Myren, Karl Johan" uniqKey="Myren K" first="Karl-Johan" last="Myrén">Karl-Johan Myrén</name><affiliation><mods:affiliation>Eli Lilly Sweden AB</mods:affiliation></affiliation></author><author wicri:is="90%"><name sortKey="Gillberg, Christopher" sort="Gillberg, Christopher" uniqKey="Gillberg C" first="Christopher" last="Gillberg">Christopher Gillberg</name><affiliation><mods:affiliation>University of Göteborg</mods:affiliation></affiliation></author></analytic><monogr></monogr><series><title level="j">Journal of Attention Disorders</title><idno type="ISSN">1087-0547</idno><idno type="eISSN">1557-1246</idno><imprint><publisher>SAGE Publications</publisher><pubPlace>Sage CA: Los Angeles, CA</pubPlace><date type="published" when="2008-09">2008-09</date><biblScope unit="volume">12</biblScope><biblScope unit="issue">2</biblScope><biblScope unit="page" from="141">141</biblScope><biblScope unit="page" to="148">148</biblScope></imprint><idno type="ISSN">1087-0547</idno></series><idno type="istex">BBC24444607371F69E51291328B3C1A64F470843</idno><idno type="DOI">10.1177/1087054707306116</idno><idno type="ArticleID">10.1177_1087054707306116</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">1087-0547</idno></seriesStmt></fileDesc><profileDesc><textClass></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Objective: The study aims to evaluate psychosocial, societal, and family cost consequences of a psychoeducational intervention program. Methods: Sixty boys with ADHD, Asperger syndrome/high-functioning autism (AS/HFA), and reading and writing disorder (RD/WD) were allocated to participate in a service evaluation project. Every other boy in each diagnostic group was randomly allocated to receive either (a) a special education program (clinical index group) or (b) follow-up without the special education program (clinical comparison group). Nine years after initial assessments the stability of the psychosocial and economic resource consequences over time was studied. Results: ADHD, AS/HFA, and RD/WD all had severe impact on family life quality. The societal costs were high, but no significant differences in resource use or in total costs were found between the clinical index and the comparison groups. Conclusions: The results underscore the very long-term need for support including individually tailored reevaluations and carefully monitored intervention programs adapted to family needs and severity of child disorder. (J. of Att. Dis. 2008; 12(2) 141-148)</div></front></TEI><istex><corpusName>sage</corpusName><author><json:item><name>Agneta Nydén</name><affiliations><json:string>Eli Lilly Sweden AB,</json:string><json:string>E-mail: agneta.nyden@vgregion.se</json:string></affiliations></json:item><json:item><name>Karl-Johan Myrén</name><affiliations><json:string>Eli Lilly Sweden AB</json:string></affiliations></json:item><json:item><name>Christopher Gillberg</name><affiliations><json:string>University of Göteborg</json:string></affiliations></json:item></author><subject><json:item><lang><json:string>eng</json:string></lang><value>ADHD</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>autism</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>costs</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>health economy</value></json:item><json:item><lang><json:string>eng</json:string></lang><value>psychosocial outcome</value></json:item></subject><articleId><json:string>10.1177_1087054707306116</json:string></articleId><language><json:string>eng</json:string></language><originalGenre><json:string>research-article</json:string></originalGenre><abstract>Objective: The study aims to evaluate psychosocial, societal, and family cost consequences of a psychoeducational intervention program. Methods: Sixty boys with ADHD, Asperger syndrome/high-functioning autism (AS/HFA), and reading and writing disorder (RD/WD) were allocated to participate in a service evaluation project. Every other boy in each diagnostic group was randomly allocated to receive either (a) a special education program (clinical index group) or (b) follow-up without the special education program (clinical comparison group). Nine years after initial assessments the stability of the psychosocial and economic resource consequences over time was studied. Results: ADHD, AS/HFA, and RD/WD all had severe impact on family life quality. The societal costs were high, but no significant differences in resource use or in total costs were found between the clinical index and the comparison groups. Conclusions: The results underscore the very long-term need for support including individually tailored reevaluations and carefully monitored intervention programs adapted to family needs and severity of child disorder. 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Methods: Sixty boys with ADHD, Asperger syndrome/high-functioning autism (AS/HFA), and reading and writing disorder (RD/WD) were allocated to participate in a service evaluation project. Every other boy in each diagnostic group was randomly allocated to receive either (a) a special education program (clinical index group) or (b) follow-up without the special education program (clinical comparison group). Nine years after initial assessments the stability of the psychosocial and economic resource consequences over time was studied. Results: ADHD, AS/HFA, and RD/WD all had severe impact on family life quality. The societal costs were high, but no significant differences in resource use or in total costs were found between the clinical index and the comparison groups. Conclusions: The results underscore the very long-term need for support including individually tailored reevaluations and carefully monitored intervention programs adapted to family needs and severity of child disorder. (J. of Att. Dis. 2008; 12(2) 141-148)</p></abstract><textClass><keywords scheme="keyword"><list><head>keywords</head><item><term>ADHD</term></item><item><term>autism</term></item><item><term>costs</term></item><item><term>health economy</term></item><item><term>psychosocial outcome</term></item></list></keywords></textClass></profileDesc><revisionDesc><change when="2008-09">Published</change></revisionDesc></teiHeader></istex:fulltextTEI><json:item><extension>txt</extension><original>false</original><mimetype>text/plain</mimetype><uri>https://api.istex.fr/document/BBC24444607371F69E51291328B3C1A64F470843/fulltext/txt</uri></json:item></fulltext><metadata><istex:metadataXml wicri:clean="corpus sage not found" wicri:toSee="no header"><istex:xmlDeclaration>version="1.0" encoding="UTF-8"</istex:xmlDeclaration><istex:docType PUBLIC="-//NLM//DTD Journal Publishing DTD v2.3 20070202//EN" URI="journalpublishing.dtd" name="istex:docType"></istex:docType><istex:document><article article-type="research-article" dtd-version="2.3" xml:lang="EN"><front><journal-meta><journal-id journal-id-type="hwp">spjad</journal-id><journal-id journal-id-type="publisher-id">JAD</journal-id><journal-title>Journal of Attention Disorders</journal-title><issn pub-type="ppub">1087-0547</issn><publisher><publisher-name>SAGE Publications</publisher-name><publisher-loc>Sage CA: Los Angeles, CA</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.1177/1087054707306116</article-id><article-id pub-id-type="publisher-id">10.1177_1087054707306116</article-id><article-categories><subj-group subj-group-type="heading"><subject>Articles</subject></subj-group></article-categories><title-group><article-title>Long-Term Psychosocial and Health Economy Consequences of ADHD, Autism, and Reading-Writing Disorder</article-title><subtitle>A Prospective Service Evaluation Project</subtitle></title-group><contrib-group><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Nydén</surname><given-names>Agneta</given-names></name><aff>Eli Lilly Sweden AB, <email xlink:type="simple">agneta.nyden@vgregion.se</email></aff></contrib></contrib-group><contrib-group><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Myrén</surname><given-names>Karl-Johan</given-names></name><aff>Eli Lilly Sweden AB</aff></contrib></contrib-group><contrib-group><contrib contrib-type="author" xlink:type="simple"><name name-style="western"><surname>Gillberg</surname><given-names>Christopher</given-names></name><aff>University of Göteborg</aff></contrib></contrib-group><pub-date pub-type="ppub"><month>09</month><year>2008</year></pub-date><volume>12</volume><issue>2</issue><fpage>141</fpage><lpage>148</lpage><abstract><p><bold>Objective:</bold> The study aims to evaluate psychosocial, societal, and family cost consequences of a psychoeducational intervention program. <bold>Methods:</bold> Sixty boys with ADHD, Asperger syndrome/high-functioning autism (AS/HFA), and reading and writing disorder (RD/WD) were allocated to participate in a service evaluation project. Every other boy in each diagnostic group was randomly allocated to receive either (a) a special education program (clinical index group) or (b) follow-up without the special education program (clinical comparison group). Nine years after initial assessments the stability of the psychosocial and economic resource consequences over time was studied. <bold>Results:</bold> ADHD, AS/HFA, and RD/WD all had severe impact on family life quality. The societal costs were high, but no significant differences in resource use or in total costs were found between the clinical index and the comparison groups. <bold>Conclusions:</bold> The results underscore the very long-term need for support including individually tailored reevaluations and carefully monitored intervention programs adapted to family needs and severity of child disorder. (<italic>J. of Att. Dis. 2008; 12(2) 141-148</italic>)</p></abstract><kwd-group><kwd>ADHD</kwd><kwd>autism</kwd><kwd>costs</kwd><kwd>health economy</kwd><kwd>psychosocial outcome</kwd></kwd-group><custom-meta-wrap><custom-meta xlink:type="simple"><meta-name>sagemeta-type</meta-name><meta-value>Journal Article</meta-value></custom-meta><custom-meta xlink:type="simple"><meta-name>search-text</meta-name><meta-value>141 Long-Term Psychosocial and Health Economy Consequences of ADHD, Autism, and Reading-Writing DisorderA Prospective Service Evaluation Project SAGE Publications, Inc.200810.1177/1087054707306116 AgnetaNydén Eli Lilly Sweden AB, agneta.nyden@vgregion.se Karl-JohanMyrén Eli Lilly Sweden AB ChristopherGillberg University of Göteborg Objective: The study aims to evaluate psychosocial, societal, and family cost consequences of a psychoeducational intervention program. Methods: Sixty boys with ADHD, Asperger syndrome/high-functioning autism (AS/HFA), and reading and writing disorder (RD/WD) were allocated to participate in a service evaluation project. Every other boy in each diagnostic group was randomly allocated to receive either (a) a special education program (clinical index group) or (b) follow-up without the special education program (clinical comparison group). Nine years after initial assessments the stability of the psychosocial and economic resource consequences over time was studied. Results: ADHD, AS/HFA, and RD/WD all had severe impact on family life quality. The societal costs were high, but no significant differences in resource use or in total costs were found between the clinical index and the comparison groups. Conclusions: The results underscore the very long-term need for support including individually tailored reevaluations and carefully monitored intervention programs adapted to family needs and severity of child disorder. (J. of Att. Dis. 2008; 12(2) 141-148) ADHD autism costs health economy psychosocial outcome ong-term outcome for many children with neuropsy- Lchiatric problems, including so-called ADHD, high- functioning autism (HFA), Asperger syndrome (AS), and reading and writing disorder (RD/WD) is poor. Follow- up studies on children with ADHD have shown antisocial behavior, substance use disorder, criminal offending, and low academic functioning (Fischer, Barkley, Smallish, & Fletcher, 2002; Hechtman & Weiss, 1986; Rasmussen & Gillberg, 2000). Predictor and outcome research among children with HFA and AS has focused on communica- tion and social skills. Children with AS were shown to be less impaired than children with HFA regarding social interaction and communication (Starr, Szatmari, Bryson, & Zwaigenbaum, 2003) when they were compared at 6 and 8 years of age. Nordin and Gillberg (1998) found most people with autism were socially or psychiatrically severely impaired throughout life but that some people with HFA or AS became independent in adult life. In a population-based follow-up study of autism into adult- hood, Billstedt, Gillberg, and Gillberg (2005) found a poor outcome in a great majority of the sample. Conduct disorder (Fergusson & Lynskey, 1997), behavior prob- lems (Smart, Sanson, & Prior, 1996), and compulsory care of juvenile delinquents (Svensson, Lundberg, & Jacobson, 2001) have all been found to be overrepre- sented in adolescents with reading difficulties. However, in these studies, reading difficulties were more related to Authors' Note: This study was supported by grants from the Eli Lilly, Sweden AB, Box 721, 169 27 Solna, Sweden. Disclosures: The study was partly funded by grant from the Swedish Inheritance Fund for Christopher Gillberg, and grants for Agneta Nydén and Karl Johan Myrén by Eli Lilly, Sweden. Address correspondence to Agneta Nydén, Child and Adolescent Psychiatry, University of Göteborg, Kungsgatan 12, 411 19 Göteborg, Sweden; e-mail: agneta.nyden@vgregion.se. 142 social background factors than to constitutional prob- lems of a dyslectic nature. To improve the quality of life for patients and families with these types of problems a variety of intervention and treatment programs have been developed. Many short-term studies have shown positive results, but the long-term impact still remains uncertain. For children with autism, the need for early intervention has been stressed. Most of the methods used have had a psy- chosocial approach with features of cognitive behavior therapy. Multimodal treatment (stimulant medication in combination with behavioral treatment) markedly reduced clinical symptoms of ADHD (Hinshaw et al., 2000). Different kinds of family therapy improved school adjustment and internalizing and externalizing symptoms (Barkely, Guevremont, Anastopoulos, & Fletcher, 1992) in ADHD. Salt et al. (2002) showed that children with autism who joined an intervention program in their preschool years improved skills in the field of joint attention, social interaction, and adaptive behavior. Parent-managed behavioral interventions have been shown to be effective for social adaptive behavior and imitation and nonverbal conceptual skills (Bibby, Eikeseth, Martin, Mudford, & Reeves, 2001; Ozonoff & Cathcart, 1998). Dyslexia has been associated with poor phonological skills, and interventions have focused on the training of the phonological awareness. Some such interventions have been tested and found to be effective. Sulzby and Teale (1991) have found positive correlations between the amount of storybook reading during the preschool years and children's interest in reading and early success in reading. There is limited information on the cost burden asso- ciated with child neuropsychiatric disorders. A recent Nordic literature review revealed that only one study had tried to quantify the costs of child psychiatric disorders (Bernfort, 2003).This is surprising given these disorders are associated with significant personal burden. Even in an international perspective very few studies have looked at the costs of any one of these disorders. A recent study from Belgium reported that ADHD affects parents' productivity and that childhood ADHD results in a significantly higher use of health care, including visits to general practitioners, emergency departments, and hospi- talizations (De Ridder & De Graeve, 2006). Leibson (2001) compared medical care use among children with and without ADHD using a medical faculty-linked data- base and found significantly greater costs over a 9-year period, US$4,306 compared to US$1,944 in controls. Chan (2002) estimated the difference in annual health care costs for children with ADHD, asthma, or healthy con- trols. Children with ADHD had a mean annual health care cost of US$1,151 compared with US$1,090 for children with asthma. These costs were significantly higher than the US$712 for the children with no health problems. Järbrink and Knapp (2001) estimated lifetime cost, mainly living support and daily activity, for a person with autism to exceed 2.4 million SEK (SEK is the currency code for the currency of Sweden, Swedish Krona). The purpose of the present study was to evaluate both the psychosocial consequences and societal and family costs of a psychoeducational intervention program 9 years after intervention starts. Method Procedure In 1994, 60 boys—20 with ADHD, 20 with Asperger syndrome/high-functioning autism (AS/HFA), and 20 with RD/WD—were allocated to participate in a service evaluation project at a state-wide diagnostic clinic for ADHD, autism, and other neuropsychiatric disorders in Göteborg, Sweden. They had all been diagnosed at con- sensus case conferences after comprehensive examina- tion by a child psychiatrist, a child psychologist, a speech therapist, and a special education teacher. The boys were consecutive outpatient clinic cases of certain age ranges (see below), whose parents had consented for their child to be part of a study involving a strict diagno- sis and follow-up protocol. Parents and teachers were informed of the child's disabilities, and every other boy in each diagnostic group was then randomly allocated to receive either (a) a special education program (clinical index group), or (b) follow-up without the special educa- tion program (clinical comparison group). Two of the families dropped out of the project after the initial assessments (1 family with drug abuse [in the ADHD clinical comparison group] and 1 family [in the RD/WD clinical comparison group] moved from town). Thus, 58 families were included in the follow-up studies. The 2-year follow-up study. Two years later (1996) the parents' experiences of the project were assessed by questionnaires. The children were clinically personally reevaluated (Nydén, Billstedt, Hjelmquist, & Gillberg, 2001). The results showed that parents in both groups improved their level of psychosocial functioning, the parents in the clinical index group somewhat more than the clinical comparison group. There was also some indi- cation of an economic benefit in the clinical index group (Nydén, Paananen, & Gillberg, 2000). The 9-year follow-up study. A new follow-up was performed in the spring of 2003, 9 years after the ini- tial assessments. The stability of the psychosocial and 143 Table 1 Descriptive Characteristics of the Samples Note: No significant differences. FSIQ = Full Scale IQ. a. % of original group. b. Information was given by the adolescents/young adults. In one case this information was given from the mother of one of the boys, who refused to participate. economic resource consequences over time was studied using questionnaires. No psychiatric or neuropsycholog- ical reassessments were included. Study Group Characteristics/Diagnoses At the time of the original diagnostic study the boys met Diagnostic and Statistical Manual of Mental Disorders (4th ed.; DSM-IV; American Psychiatric Association, 1994) criteria for ADHD, autistic disorder/AS, or RD/WD. However, the boys in the AS subgroup did not all meet the criteria of normal language development and curiosity about the environment, but all met Gillberg and Gillberg (1989) and Gillberg (1991) criteria for AS. The boys in the ADHD group also met DSM-IV criteria for development coordination disorder (DCD; see Table 1). Clinical index group. The age range at 9-year follow- up was 13.6–21.2 years with a mean of 18.1 years. The full scale IQ (FSIQ) range was 52–134 with a mean of 94. In this group, 25 (89%) attended compulsory or com- prehensive school, 2 were studying at the university, and 1 had interrupted school attendance. Also, 25 (89%) lived at home with their parents, 1 (4%) lived in a foster home, and 2 (7%) were living on their own. This infor- mation was given by the adolescents/young adults (see Attrition subsection). Clinical comparison group. The age range was 13.9–20.9 years with a mean of 17.4 years, and the FSIQ range was 48–120 with a mean of 93. Of the total partic- ipants, 21 (91%) attended compulsory or comprehensive school, 1 (4%) had interrupted his school career, and 1 (4%) was at distance tuition. However, 22 (96%) lived with parents, and 1 was living on his own. This informa- tion was given by the adolescents/young adults (see Attrition subsection). Healthy comparison group. A healthy comparison group of 60 children/adolescents 6 to 18 years of age were chosen from the cohort (Andersson Gäre et al., 2001) included in the validation of the Swedish version of the Child Health Questionnaire-Parent Form (CHQ- PF50) (Landgraf, Abetz, & Ware, 1996) to analyze the well-being of the clinical index and comparison group in comparison with a healthy sample. Questionnaires Used at the 9-Year Follow-Up The parents completed a questionnaire divided into one psychosocial and one resource utilization part (PRQ). This questionnaire covered attitude to diagnosis, outpatient and inpatient care for the child, health care for parents that was associated with the child's dysfunc- tion, time lost from work for parents, hours of extra 144 school assistance for the child, state support to parents due to the dysfunction of the child, and need for extra support in home by parents. The parents also completed the Swedish CHQ-PF50 (Landgraf, Abetz, & Ware, 1996) referring to the physical, social, and emotional/ behavioral health of the child. The adolescents/young adults completed a questionnaire covering their own psy- chosocial functioning—the Adolescent/Adult psychoso- cial Functioning Questionnaire (APQ) constructed for the purpose of the present study. This questionnaire included attitude to diagnosis; peer relationships; use of drug and alcohol; antisocial behavior (stealing, breaking and entering, gun use); hostile behavior reactions and actions (i.e., being bullied or maltreated, and bullying or maltreating); and exposure to accidents (road or other accidents). The questions in the resource utilization part of the PRQ were divided into 4 response categories (never, once, twice, three or more times). The recall period was either weekly or the last 3 months. In cases of accidents leading to hospital care for the child, the parents were asked to go back 5 years in time. Some questions referred to the current situation, such as level of state- provided financial support. The questions in the CHQ- PF50 had 4 (limited a lot, limited to some extent, limited a little, and not limited) to 6 (very severe, severe, moder- ate, mild, very mild, none) alternatives, and the APQ 3 (never, once or twice, many times) alternatives. Calculation of Costs Cost data for inpatient care and outpatient care were taken from the costing of services tariff list for the South Region of Sweden (2003). Additional hospital costs for the parents were only included if during the last 3 months they had been treated in a hospital as a result of their child's dysfunction. In calculating the costs for parents taking time off from work without pay, taking vacation, or saving over- time to take care of their child, this was based on an hourly wage corresponding to 80% of the maximum amount that the Swedish social insurance agency pays in case of sick leave (80 SEK = 0.80 × 100 SEK/hr). Additional costs (for food, clothes, broken furniture, and medicines for the family) associated with the child's dys- function were calculated based on the information the families estimated that were additional each week. Costs for additional help from assistants and special education teachers in school were based on their expected monthly salaries. The additional costs for the children were cal- culated as the additional time per week during which they were in need of an assistant or specially trained teacher times their hourly wage. The costs per family and individual were calculated on an annual basis. Attrition Five (9%) of the original 58 families (1 ADHD clini- cal index, 3 AS/HFA clinical comparison, and 1 RD/WD clinical comparison group) dropped out of the project: 2 of these 5 families disapproved of the study, 1 family did not trust professional confidentiality, and 2 did not respond despite several reminders. In addition, 2 of the boys in the clinical index group (AS/HFA) and 1 (ADHD) in the clinical comparison group wanted to maintain their personal integrity and refused to partici- pate in spite of their parents' participation in the study. The mother of one of the adolescents in the clinical index group gave information of her son's abode and school attendance (see description of the Clinical Index Group subsection). Statistical Analyses In the tables, the diagnostic subgroups (ADHD, AS/HFA, RD/WD) are collapsed into one clinical index and one clinical comparison group. Analysis of covariance (ANCOVA). An ANCOVA was performed on societal costs and psychosocial function- ing with clinical index and clinical comparison groups as between-subjects factors and FSIQ (at original diagno- sis) and age as covariates. t-Test. A t-test was used on the CHQ-PF50 for paired comparison with the mean results of the healthy compar- ison group (Andersson Gäre et al., 2001). Fisher's exact test. Summary scores of the APQ were compared across groups using Fisher's exact test. Simple regression analysis. A simple regression model was run to see how well the summary scores of the CHQ and APQ alone could explain the variation in costs. Ethics The Research Ethics Committee of the Sahlgrenska Academy at Göteborg University approved the study. Results PRQ (Parent Reports) Attitude toward diagnosis/parents. A total of 49 (90%) families responded to these questions: 23 (85%), 3 (11%), and 1 (4%) of the parents in the clinical index 145 Table 2 Statistical Analyses of the Psychosocial Resource Questionnaire (PRQ), Child Health Questionnaire-Parent Form (CHQ-PF50), Adolescent/Adult Psychosocial Functioning Questionnaire (APQ) Note: In all variables higher values are synonymous with higher well-being. a. Clinical index group < healthy comparison group. b. Clinical comparison group < healthy comparison group. c. Clinical index group < clinical comparison group. d. Clinical index group > clinical comparison group. e. Younger adolescents < older adolescents. *p < .05. **p < .01. group and 14 (64%), 3 (14%), and 5 (23%) of the parents in the clinical comparison group had a positive, neutral, and negative attitude toward their child's diagnosis (n.s.; see Table 2). Resource utilization and total costs. Table 3 shows the descriptive statistics for the resource use and annual costs for the clinical index and clinical comparison groups. Out of the 18 (34%) families who reported no extra costs, 7 (7/29 = 24%) were within the clinical index group and 11 (11/23 = 48%) were in the clinical com- parison group (n.s.). The difference in mean costs between the groups was primarily due to the greater number of zero costs in the clinical comparison group and one outlier with very high costs in the clinical index group. The total average cost per family was SEK 42,040 per year based on the whole sample. More than 78% of the total costs were indirect, that is, increased costs in the home, school, and costs attributed to the parents' days lost from work because of the child not being able to function in school or in other activities. There was an age effect with younger children need- ing more aid in school, F(1, 48) = 6.64, p = .013. Parents of children with lower FSIQ also reported that they used more time taking care of their child, F(1, 48) = 6.99, p = .01, compared to the average child of the same age group (more loss of leisure time). CHQ-PF50 (Parents Reports) Summary scores are presented in Table 2. Only sig- nificant differences found in the ANCOVA analysis are reported here. Psychosocial summary score. There was a significant effect of group, F(3, 44) = 5.27, p = .03, and age, F(3, 44) = 5.93, p = .02, on psychosocial summary score. The ado- lescents/young adults in the clinical comparison group and those with higher FSIQ had high psychosocial summary scores (corresponding to higher level of well-being). CHQ-PF50 and Correlations With Costs The sample in this study was small and the cost dis- tribution was skewed to the right with 34% of the families reporting no costs. Thus, any results from the regression analyses must be carefully interpreted. The regression model showed that the psychosocial summary measure (PsS, which measures psychosocial functioning) was negatively associated with total costs 146 Table 3 Statistical Analyses of the Psychosocial Research Questionnaire (PRQ), Resource Use and Annual Costs for the Clinical Index, Clinical Comparison, and Diagnostic Groups Adjusted for Full Scale IQ (FSIQ) and Age Note: SEK is the currency code for Swedish Krona, the currency of Sweden. a. Younger adolescents < older adolescents. b. Low FSIQ < high FSIQ. *p < .05. that is higher psychosocial functioning in the family was related to lower costs (standard error in parentheses). The mean PsS score in the sample was 44.6, which according to the model above corresponded to a mean cost per family and year of SEK 40,321 (US$4,984). The results were not sensitive to the removal of out- liers and were also consistent in a sensitivity analysis where the dependent variable was dichotomous, that is, high (above median) versus low (below median) costs. The physical functioning summary score did not correlate with costs. APQ Only significant differences are reported here (see Table 2 for more details). Attitude to diagnosis/adolescents. In all, 46 (90%) adolescents/young adults responded to the attitude questions: 12 (48%), 11 (44%), and 2 (8%) of the ado- lescents/young adults in the clinical index group showed a positive, neutral, and negative attitude to diagnosis. In the clinical comparison group the corresponding results were 5 (24%), 9 (43%), and 7 (33%), respectively (p < .03). Summary score of adolescents with no problems with drug, alcohol, antisocial, or hostile behavior. In the clini- cal index group 8 (30%) participants and in the clinical comparison group only 1 participant (4%) had no reported problems with psychosocial adjustment (p < .02). APQ and Correlations With Costs No significant correlation was found between the summary score of the APQ and total costs. Discussion The purpose of the present study was to evaluate psy- chosocial, societal, and family cost consequences of a psychoeducational intervention program 9 years after intervention starts. The results clearly underscore the severe impact of neuropsychiatric problems (ADHD, AS/HFA, and RD/WD) on family life quality. The parents and adolescents in both groups had lower physical and psychosocial well-being when compared with a healthy comparison group. The societal costs were high, but no significant differences in resource use or in total costs were found between the clinical index and the clinical comparison groups. 147 The result of the study can be summarized as follows. Parents and adolescents in the clinical index group showed a more positive attitude toward diagnosis than those in the clinical comparison group. The parents in the former group were better informed and familiar with the consequences of the diagnosis, and they also rated their adolescents as more affected and in a greater need of psychosocial support than parents of adolescents in the latter group. However, these demands on psychosocial support did not significantly increase the clinical index group's societal and family costs over time. Instead, the psychosocial support given might have positively influenced the psychosocial adjustment and the prob- lems of antisocial and hostile behavior, reflecting the low rate of drug use and to accident exposure in the clinical index group. Adolescents and young adults showed a less positive attitude toward diagnosis than did their parents. However, adolescents in the clinical index group were significantly more positive vis-à-vis diagnosis than the adolescents in the clinical comparison group. One third of the adolescents/young adults in the latter group showed a negative attitude toward diagnosis. Parents got more information of the consequences of the neuropsy- chiatric problems than did the children at the start of the study. Most of the children were so young that real insight into the consequences of the problem at that time may not have been achieved. Children need to be informed about their problems in an age-appropriate manner, which means that they have to learn from their daily life experiences. This supervision will usually be provided by their parents. However, many parents are uncertain as to how to support and supervise their children in an appropriate way and are in need of extra support themselves. Previous studies, which have calculated the costs associated with different adult psychiatric disorders, have shown that indirect costs represent the largest share of the total costs. This study showed similar results. More than 78% of the total costs were indirect including parents' absenteeism, and direct costs such as doctor visits, hospitalizations of the child due to accidents, rep- resented a minor share (22%) of the total costs. The aver- age family in this sample had a yearly extra cost of SEK 42,040, which roughly corresponded to 4,607 and US$5,196 per year at the time of the study. The variation was considerable, some families stating that they had no costs (34%), and others that they had extremely high costs up to 588,000 SEK per year (US$64,758). There was a significant correlation between poor psychosocial functioning and high resource use/costs; however, caution should be exercised due to the small sample given and the fact that costs were skewed. This study confirmed that costs associated with the neuropsychiatric disorders 9 years after diagnosis are great for the individual, the family, and the society. The most obvious costs are the indirect. ADHD, ASC, and RD/WD all appeared to increase costs at a similar level. The results of present follow-up study underscore the very long-term need for support for people affected by neuropsychiatric problems. Such support probably will have to entail individually fitted reevaluations and care- fully monitored intervention programs adapted to family needs and severity of child disorder. Limitations of the Study The results of the study have to be cautiously inter- preted. There are several limitations. The sample size is small. The diagnostic subgroups are possibly representa- tive but not conclusively so. The randomization design has contributed, as in other similar studies, to some rather limited dropout of families who did not want to be victims of chance, however, the present follow-up included only questionnaires where all costs were esti- mated on the basis of detailed reports. Finally, the healthy comparison group was considerably younger than the index groups, meaning that conclusions have to be tentative at most. Concluding Remarks Long-term outcome for many children with neuropsy- chiatric problems is poor. This study is important due to the length of follow-up (9 years) and the focus on both psychosocial and health economy consequences of a ser- vice program. All children (with their parents) were seen and individually examined and systematically diagnosed in depth at a clinic at original assessment, and a strict follow-up protocol was adhered to after 2 and 9 years. The attrition was very low, only 5%, considering the fact that the study was conducted almost a decade before the second follow-up assessment. Future studies should include larger cohorts of children with a prospective pro- tocol, and include measures of psychosocial health, soci- etal, and family costs. These studies should be designed with a view to evaluate the effects of existing and new treatments over time, preferably for more than a few years. To definitely establish increased psychosocial and health economy burdens of disorders such as ADHD and AS/HFA there is a need for the inclusion of comparator groups of children without neuropsychiatric problems. 148 References American Psychiatric Association. (1994). 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Methods: Sixty boys with ADHD, Asperger syndrome/high-functioning autism (AS/HFA), and reading and writing disorder (RD/WD) were allocated to participate in a service evaluation project. Every other boy in each diagnostic group was randomly allocated to receive either (a) a special education program (clinical index group) or (b) follow-up without the special education program (clinical comparison group). Nine years after initial assessments the stability of the psychosocial and economic resource consequences over time was studied. Results: ADHD, AS/HFA, and RD/WD all had severe impact on family life quality. The societal costs were high, but no significant differences in resource use or in total costs were found between the clinical index and the comparison groups. Conclusions: The results underscore the very long-term need for support including individually tailored reevaluations and carefully monitored intervention programs adapted to family needs and severity of child disorder. (J. of Att. Dis. 2008; 12(2) 141-148)</abstract><subject><genre>keywords</genre><topic>ADHD</topic><topic>autism</topic><topic>costs</topic><topic>health economy</topic><topic>psychosocial outcome</topic></subject><relatedItem type="host"><titleInfo><title>Journal of Attention Disorders</title></titleInfo><genre type="journal">journal</genre><identifier type="ISSN">1087-0547</identifier><identifier type="eISSN">1557-1246</identifier><identifier type="PublisherID">JAD</identifier><identifier type="PublisherID-hwp">spjad</identifier><part><date>2008</date><detail type="volume"><caption>vol.</caption><number>12</number></detail><detail type="issue"><caption>no.</caption><number>2</number></detail><extent unit="pages"><start>141</start><end>148</end></extent></part></relatedItem><identifier type="istex">BBC24444607371F69E51291328B3C1A64F470843</identifier><identifier type="DOI">10.1177/1087054707306116</identifier><identifier type="ArticleID">10.1177_1087054707306116</identifier><recordInfo><recordContentSource>SAGE</recordContentSource></recordInfo></mods></metadata><serie></serie></istex></record>Pour manipuler ce document sous Unix (Dilib)
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