Co-design of an NHS primary care health check for autistic adults / Helen TAYLOR in Autism, 27-4 (May 2023)  

Public ISBD [article]  inAutism > 27-4 (May 2023) . - p.1079-1091 Titre : Co-design of an NHS primary care health check for autistic adults Type de document : Texte imprimé et/ou numérique Auteurs : Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R PARR, Auteur Article en page(s) : p.1079-1091 Langues : Anglais (eng) Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person?s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499 [article] Co-design of an NHS primary care health check for autistic adults [Texte imprimé et/ou numérique] / Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; David MASON, Auteur ; Tracy FINCH, Auteur ; Colin WILSON, Auteur ; Clare SCARLETT, Auteur ; Sebastian MOSS, Auteur ; Carole BUCKLEY, Auteur ; Anna URBANOWICZ, Auteur ; Dora RAYMAKER, Auteur ; Charlotte SEIBOTH, Auteur ; Rhianna LEES, Auteur ; Deborah GARLAND, Auteur ; Malcolm OSBOURNE, Auteur ; Nicholas LENNOX, Auteur ; Sally-Ann COOPER, Auteur ; Christina NICOLAIDIS, Auteur ; Jeremy R PARR, Auteur . - p.1079-1091. Langues : Anglais (eng) in Autism > 27-4 (May 2023) . - p.1079-1091 Mots-clés : autism,autism spectrum disorders,health check,health services,qualitative research Index. décimale : PER Périodiques Résumé : Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people.Lay abstractAutistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people?s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person?s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals. En ligne : https://doi.org/10.1177/13623613221132921 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=499

General health of adults with autism spectrum disorders – A whole country population cross-sectional study / Ewelina RYDZEWSKA in Research in Autism Spectrum Disorders, 60 (April 2019)  

Public ISBD [article]  inResearch in Autism Spectrum Disorders > 60 (April 2019) . - p.59-66 Titre : General health of adults with autism spectrum disorders – A whole country population cross-sectional study Type de document : Texte imprimé et/ou numérique Auteurs : Ewelina RYDZEWSKA, Auteur ; Laura A. HUGHES-MCCORMACK, Auteur ; Christopher GILLBERG, Auteur ; Angela HENDERSON, Auteur ; Cecilia MACINTYRE, Auteur ; Julie RINTOUL, Auteur ; Sally-Ann COOPER, Auteur Article en page(s) : p.59-66 Langues : Anglais (eng) Mots-clés : Autism spectrum disorder  Adults  General health status  Health inequalities  Observational study Index. décimale : PER Périodiques Résumé : Background General health status in adult populations with autism spectrum disorders has been little studied. We aimed to investigate general health status and predictors of poor health in adults with autism spectrum disorders compared with other adults. Method Whole country data were drawn from Scotland’s Census, 2011. We calculated and compared the frequencies of health status in adults with and without autism spectrum disorders. We then used logistic regressions to calculate odds ratios (OR) with 95% confidence intervals (95% CI) of autism predicting poor general health in the whole population, adjusted for age and gender, and OR (95% CI) of age and gender predicting poor general health within the autism spectrum disorders population. Results Autism spectrum disorders were reported for 6649/3,746,584 (0.2%) adults aged 25+years, of whom 46.8% (N?=?3111) had poor general health, compared with 23.7% (N?=?887,878) of other people. Poor health was common across the entire lifecourse for adults with autism spectrum disorders. Autism had OR?=?5.1 (4.9–5.4, 95% CI) for predicting poor general health, or OR?=?7.5 (6.9–8.2, 95% CI) when the interaction with age was included. Poorer health was more common at older age, and for women. Conclusions Poor general health merits attention across the full lifecourse for adults with autism. Health practitioners need to be alert to the burden of potential health problems to seek them out to be addressed, and so the health agenda can turn towards potential mechanisms for prevention and better support for adults who may call upon services for people with autism. En ligne : https://doi.org/10.1016/j.rasd.2019.01.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=387 [article] General health of adults with autism spectrum disorders – A whole country population cross-sectional study [Texte imprimé et/ou numérique] / Ewelina RYDZEWSKA, Auteur ; Laura A. HUGHES-MCCORMACK, Auteur ; Christopher GILLBERG, Auteur ; Angela HENDERSON, Auteur ; Cecilia MACINTYRE, Auteur ; Julie RINTOUL, Auteur ; Sally-Ann COOPER, Auteur . - p.59-66. Langues : Anglais (eng) in Research in Autism Spectrum Disorders > 60 (April 2019) . - p.59-66 Mots-clés : Autism spectrum disorder  Adults  General health status  Health inequalities  Observational study Index. décimale : PER Périodiques Résumé : Background General health status in adult populations with autism spectrum disorders has been little studied. We aimed to investigate general health status and predictors of poor health in adults with autism spectrum disorders compared with other adults. Method Whole country data were drawn from Scotland’s Census, 2011. We calculated and compared the frequencies of health status in adults with and without autism spectrum disorders. We then used logistic regressions to calculate odds ratios (OR) with 95% confidence intervals (95% CI) of autism predicting poor general health in the whole population, adjusted for age and gender, and OR (95% CI) of age and gender predicting poor general health within the autism spectrum disorders population. Results Autism spectrum disorders were reported for 6649/3,746,584 (0.2%) adults aged 25+years, of whom 46.8% (N?=?3111) had poor general health, compared with 23.7% (N?=?887,878) of other people. Poor health was common across the entire lifecourse for adults with autism spectrum disorders. Autism had OR?=?5.1 (4.9–5.4, 95% CI) for predicting poor general health, or OR?=?7.5 (6.9–8.2, 95% CI) when the interaction with age was included. Poorer health was more common at older age, and for women. Conclusions Poor general health merits attention across the full lifecourse for adults with autism. Health practitioners need to be alert to the burden of potential health problems to seek them out to be addressed, and so the health agenda can turn towards potential mechanisms for prevention and better support for adults who may call upon services for people with autism. En ligne : https://doi.org/10.1016/j.rasd.2019.01.004 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=387

Mortality in 787,666 school pupils with and without autism: A cohort study / Gillian S. SMITH in Autism, 25-1 (January 2021)  

Public ISBD [article]  inAutism > 25-1 (January 2021) . - p.300-304 Titre : Mortality in 787,666 school pupils with and without autism: A cohort study Type de document : Texte imprimé et/ou numérique Auteurs : Gillian S. SMITH, Auteur ; Michael FLEMING, Auteur ; Deborah KINNEAR, Auteur ; Angela HENDERSON, Auteur ; Jill P PELL, Auteur ; Craig MELVILLE, Auteur ; Sally-Ann COOPER, Auteur Article en page(s) : p.300-304 Langues : Anglais (eng) Mots-clés : adolescents  autism spectrum disorders  death  mortality  prevalence  risk factor epidemiology  school-age children Index. décimale : PER Périodiques Résumé : There are few studies on the deaths of children and young people with autism; some studies on children and adults combined suggest that those with autism may have higher death rates than other people. More children are diagnosed with autism than in the past, suggesting that there are now more children with milder autism who have the diagnosis than in the past, so studies in the past might not apply to the current generation of children and young people diagnosed with autism. We examined the rates of death in children and young people in Scotland using recorded information in Scotland's annual pupil census, linked to the National Records of Scotland deaths register, between 2008 and 2015. In total, 9754 (1.2%) out of 787,666 pupils had autism. Six pupils with autism died in the study period, compared with 458 other pupils. This was equivalent to 16 per 100,000 for pupils with autism and 13 per 100,000 pupils without autism; hence, the rate of death was very similar. In the pupils with autism, the most common causes of death were diseases of the nervous system, whereas they were from external causes in the comparison pupils. The autism group had some deaths due to epilepsy which might have been prevented by good quality care. We cautiously conclude that the death rate in the current generation of children and young adults with autism is no higher than for other children, but that even in this high-income country, some deaths could be prevented by high quality care. En ligne : http://dx.doi.org/10.1177/1362361320944037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437 [article] Mortality in 787,666 school pupils with and without autism: A cohort study [Texte imprimé et/ou numérique] / Gillian S. SMITH, Auteur ; Michael FLEMING, Auteur ; Deborah KINNEAR, Auteur ; Angela HENDERSON, Auteur ; Jill P PELL, Auteur ; Craig MELVILLE, Auteur ; Sally-Ann COOPER, Auteur . - p.300-304. Langues : Anglais (eng) in Autism > 25-1 (January 2021) . - p.300-304 Mots-clés : adolescents  autism spectrum disorders  death  mortality  prevalence  risk factor epidemiology  school-age children Index. décimale : PER Périodiques Résumé : There are few studies on the deaths of children and young people with autism; some studies on children and adults combined suggest that those with autism may have higher death rates than other people. More children are diagnosed with autism than in the past, suggesting that there are now more children with milder autism who have the diagnosis than in the past, so studies in the past might not apply to the current generation of children and young people diagnosed with autism. We examined the rates of death in children and young people in Scotland using recorded information in Scotland's annual pupil census, linked to the National Records of Scotland deaths register, between 2008 and 2015. In total, 9754 (1.2%) out of 787,666 pupils had autism. Six pupils with autism died in the study period, compared with 458 other pupils. This was equivalent to 16 per 100,000 for pupils with autism and 13 per 100,000 pupils without autism; hence, the rate of death was very similar. In the pupils with autism, the most common causes of death were diseases of the nervous system, whereas they were from external causes in the comparison pupils. The autism group had some deaths due to epilepsy which might have been prevented by good quality care. We cautiously conclude that the death rate in the current generation of children and young adults with autism is no higher than for other children, but that even in this high-income country, some deaths could be prevented by high quality care. En ligne : http://dx.doi.org/10.1177/1362361320944037 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=437

Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population / E. RYDZEWSKA in Autism, 23-5 (July 2019)  

Public ISBD [article]  inAutism > 23-5 (July 2019) . - p.1201-1209 Titre : Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population Type de document : Texte imprimé et/ou numérique Auteurs : E. RYDZEWSKA, Auteur ; L. A. HUGHES-MCCORMACK, Auteur ; C. GILLBERG, Auteur ; A. HENDERSON, Auteur ; C. MACINTYRE, Auteur ; J. RINTOUL, Auteur ; Sally-Ann COOPER, Auteur Article en page(s) : p.1201-1209 Langues : Anglais (eng) Mots-clés : autism  children  comorbidities  hearing  mental health  physical disability  vision  young people Index. décimale : PER Périodiques Résumé : This study investigated the comorbid conditions in a whole country population of children/young people aged 0-24 years with and without autism. Data were drawn from Scotland's Census 2011. We calculated the percentage with autism, their extent of comorbid conditions, odds ratio (with 95% confidence intervals) of autism predicting comorbidities, adjusted for age and gender, and odds ratio for age and gender predicting comorbidities within the cohort with autism. A total of 25,063/1,548,819 (1.6%) had autism: 19,880 (79.3%) males and 5183 (20.7%) females. Autism had an odds ratio of 5.4 (5.1-5.6) for predicting deafness/partial hearing loss, odds ratio of 8.9 (8.1-9.7) for blindness/partial sight loss, odds ratio of 49.7 (38.1-64.9) for intellectual disabilities, odds ratio of 15.7 (13.4-18.5) for mental health conditions, odds ratio of 15.8 (14.1-17.8) for physical disability and odds ratio of 3.9 (3.8-4.0) for other conditions. Females with autism were more likely to have each additional condition than males, including intellectual disabilities, suggesting they may have more severe autism than males and adding evidence that autism may be currently underdiagnosed in more intellectually able females. These conditions are disabling and have a significant impact on long-term quality of life; their coexistence with autism adds extra complexity. It is important to raise clinicians' awareness of this extent of comorbidity, and to have accurate prevalence data to plan prevention and intervention measures, and to follow health inequality trends. En ligne : http://dx.doi.org/10.1177/1362361318791279 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=401 [article] Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population [Texte imprimé et/ou numérique] / E. RYDZEWSKA, Auteur ; L. A. HUGHES-MCCORMACK, Auteur ; C. GILLBERG, Auteur ; A. HENDERSON, Auteur ; C. MACINTYRE, Auteur ; J. RINTOUL, Auteur ; Sally-Ann COOPER, Auteur . - p.1201-1209. Langues : Anglais (eng) in Autism > 23-5 (July 2019) . - p.1201-1209 Mots-clés : autism  children  comorbidities  hearing  mental health  physical disability  vision  young people Index. décimale : PER Périodiques Résumé : This study investigated the comorbid conditions in a whole country population of children/young people aged 0-24 years with and without autism. Data were drawn from Scotland's Census 2011. We calculated the percentage with autism, their extent of comorbid conditions, odds ratio (with 95% confidence intervals) of autism predicting comorbidities, adjusted for age and gender, and odds ratio for age and gender predicting comorbidities within the cohort with autism. A total of 25,063/1,548,819 (1.6%) had autism: 19,880 (79.3%) males and 5183 (20.7%) females. Autism had an odds ratio of 5.4 (5.1-5.6) for predicting deafness/partial hearing loss, odds ratio of 8.9 (8.1-9.7) for blindness/partial sight loss, odds ratio of 49.7 (38.1-64.9) for intellectual disabilities, odds ratio of 15.7 (13.4-18.5) for mental health conditions, odds ratio of 15.8 (14.1-17.8) for physical disability and odds ratio of 3.9 (3.8-4.0) for other conditions. Females with autism were more likely to have each additional condition than males, including intellectual disabilities, suggesting they may have more severe autism than males and adding evidence that autism may be currently underdiagnosed in more intellectually able females. These conditions are disabling and have a significant impact on long-term quality of life; their coexistence with autism adds extra complexity. It is important to raise clinicians' awareness of this extent of comorbidity, and to have accurate prevalence data to plan prevention and intervention measures, and to follow health inequality trends. En ligne : http://dx.doi.org/10.1177/1362361318791279 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=401

The Prevalence and Incidence of Mental Ill-Health in Adults with Autism and Intellectual Disabilities / Craig MELVILLE in Journal of Autism and Developmental Disorders, 38-9 (October 2008)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 38-9 (October 2008) . - p.1676-1688 Titre : The Prevalence and Incidence of Mental Ill-Health in Adults with Autism and Intellectual Disabilities Type de document : Texte imprimé et/ou numérique Auteurs : Craig MELVILLE, Auteur ; Sally-Ann COOPER, Auteur ; Jill MORRISON, Auteur ; Elita SMILEY, Auteur ; Linda ALLAN, Auteur ; Alison JACKSON, Auteur ; Janet FINLAYSON, Auteur ; Dipali MANTRY, Auteur Année de publication : 2008 Article en page(s) : p.1676-1688 Langues : Anglais (eng) Mots-clés : Intellectual-disabilities Autism Mental-ill-health Psychiatry Epidemiology Psychiatric-classification Index. décimale : PER Périodiques Résumé : The prevalence, and incidence, of mental ill-health in adults with intellectual disabilities and autism were compared with the whole population with intellectual disabilities, and with controls, matched individually for age, gender, ability-level, and Down syndrome. Although the adults with autism had a higher point prevalence of problem behaviours compared with the whole adult population with intellectual disabilities, compared with individually matched controls there was no difference in prevalence, or incidence of either problem behaviours or other mental ill-health. Adults with autism who had problem behaviours were less likely to recover over a two-year period than were their matched controls. Apparent differences in rates of mental ill-health are accounted for by factors other than autism, including Down syndrome and ability level. En ligne : http://dx.doi.org/10.1007/s10803-008-0549-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=604 [article] The Prevalence and Incidence of Mental Ill-Health in Adults with Autism and Intellectual Disabilities [Texte imprimé et/ou numérique] / Craig MELVILLE, Auteur ; Sally-Ann COOPER, Auteur ; Jill MORRISON, Auteur ; Elita SMILEY, Auteur ; Linda ALLAN, Auteur ; Alison JACKSON, Auteur ; Janet FINLAYSON, Auteur ; Dipali MANTRY, Auteur . - 2008 . - p.1676-1688. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 38-9 (October 2008) . - p.1676-1688 Mots-clés : Intellectual-disabilities Autism Mental-ill-health Psychiatry Epidemiology Psychiatric-classification Index. décimale : PER Périodiques Résumé : The prevalence, and incidence, of mental ill-health in adults with intellectual disabilities and autism were compared with the whole population with intellectual disabilities, and with controls, matched individually for age, gender, ability-level, and Down syndrome. Although the adults with autism had a higher point prevalence of problem behaviours compared with the whole adult population with intellectual disabilities, compared with individually matched controls there was no difference in prevalence, or incidence of either problem behaviours or other mental ill-health. Adults with autism who had problem behaviours were less likely to recover over a two-year period than were their matched controls. Apparent differences in rates of mental ill-health are accounted for by factors other than autism, including Down syndrome and ability level. En ligne : http://dx.doi.org/10.1007/s10803-008-0549-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=604

The relationship between symptoms of autism spectrum disorder and visual impairment among adults with intellectual disability / R. KIANI in Autism Research, 12-9 (September 2019)  

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