Dataset Information

Rate of first recorded diagnosis of autism and other pervasive developmental disorders in United Kingdom general practice, 1988 to 2001.

ABSTRACT:

Background

There has been concern that the incidence of autism and other pervasive developmental disorders (PDDs) is increasing. Previous studies have been smaller, restricted to autism (excluding other pervasive developmental disorders such as Asperger's syndrome), included boys only, or have not been based on a national sample. We investigated time trends in the rates of diagnosis of pervasive developmental disorders.

Methods

We analysed the rates of first diagnosis of pervasive developmental disorders among people registered with a practice contributing to the United Kingdom General Practice Research Database during the period 1988 to 2001. We included 1410 cases from over 14 million person-years of observation. The main outcome measures were rates of diagnosis of pervasive developmental disorders by year of diagnosis, year of birth, gender and geographical region.

Results

The rate increased progressively from 0.40/10,000 person-years (95% CI 0.30 to 0.54) in 1991 to 2.98/10,000 (95% CI 2.56 to 3.47) in 2001. A similar change occurred in the age standardised incidence ratios, from 35 (95% CI: 26-47) in 1991 to 365 (95% CI: 314-425) in 2001. The temporal increase was not limited to children born during specific years nor to children diagnosed in a specific time period. The rate of diagnosis of PDDs other than autism rose from zero for the period 1988-1992 to 1.06/10,000 person-years in 2001. The rate of diagnosis of autism also increased but to a lesser extent. There was marked geographical variation in rates, with standardised incidence ratios varying from 66 for Wales to 141 for the South East of England.

Conclusions

Better ascertainment of diagnosis is likely to have contributed to the observed temporal increase in rates of diagnosis of PDD, but we cannot exclude a real increase.

SUBMITTER: Smeeth L

PROVIDER: S-EPMC533883 | biostudies-literature | 2004 Nov

REPOSITORIES: biostudies-literature

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Publications

Rate of first recorded diagnosis of autism and other pervasive developmental disorders in United Kingdom general practice, 1988 to 2001.

Smeeth Liam L Cook Claire C Fombonne Professor Eric PE Heavey Lisa L Rodrigues Laura C LC Smith Peter G PG Hall Andrew J AJ

BMC medicine 20041109

<h4>Background</h4>There has been concern that the incidence of autism and other pervasive developmental disorders (PDDs) is increasing. Previous studies have been smaller, restricted to autism (excluding other pervasive developmental disorders such as Asperger's syndrome), included boys only, or have not been based on a national sample. We investigated time trends in the rates of diagnosis of pervasive developmental disorders.<h4>Methods</h4>We analysed the rates of first diagnosis of pervasive ...[more]

PMID: 15535890

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Project description:ObjectivesImplementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents'/caregivers' experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting.DesignThis qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, 'General Practice Surveillance for Autism', a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically.ParticipantsTwelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed.SettingsAll interviews were completed over the phone.ResultsThere were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient-doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers.ConclusionThe findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting.Trial registration numberANZCTR (ACTRN12619001200178).

Project description:BackgroundParents' Evaluation of Developmental Status, (PEDS), is a validated screening tool designed for primary health care clinicians to assess child development. Despite widespread use by local government child-nurse services, PEDS has not been tested in Australian general practice. We examined the effect of an intervention that aimed to use PEDS to improve documented assessment of child developmental status during routine general practice consultations.MethodsThe study took place in a single general practice in Melbourne, Australia. The intervention included training of all general practice staff regarding PEDS processes and provision of PEDS questionnaires, scoring and interpretation forms. Mixed methods incorporated audits of clinical records of young children (1 to ≤ 5 years) before and after the intervention, and written questionnaires and a focus group (informed by the Theoretical Domains Framework and COM-B model) with receptionists, practice nurses and general practitioners.ResultsDocumented developmental status more than doubled after the intervention with almost one in three (30.4%) records documenting the PEDS tool. Overall, staff responses to questionnaires indicated that PEDS processes had been successfully implemented, half of the staff felt PEDS had developed their professional skills and clinicians expressed confidence using the tool (71%). Thematic analysis of the focus group transcript revealed divided reactions to PEDS screening with most barriers arising from general practitioners' motivation to use PEDS tools and perceptions of environmental constraints.ConclusionsA team-practice intervention that applied PEDS training and implementation, more than doubled documented rates of child developmental status during routine visits. Solutions to underlying barriers could be incorporated into a revised training module. Future studies need to test the tool in more methodologically robust studies that include analysis of the outcomes of developmental surveillance and long-term sustainability of PEDS use in practices.

Dataset Information

Rate of first recorded diagnosis of autism and other pervasive developmental disorders in United Kingdom general practice, 1988 to 2001.

Background

Methods

Results

Conclusions

Publications

Rate of first recorded diagnosis of autism and other pervasive developmental disorders in United Kingdom general practice, 1988 to 2001.

Similar Datasets

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