Acceptability and Implementation of a Primary Care Health Check for Autistic People: Findings From Evaluation Questionnaires and Interviews / Hannah MERRICK in Autism, 30-8 (August 2026)  

Public ISBD [article]  inAutism > 30-8 (August 2026) . - p.1955-1970 Titre : Acceptability and Implementation of a Primary Care Health Check for Autistic People: Findings From Evaluation Questionnaires and Interviews Type de document : texte imprimé Auteurs : Hannah MERRICK, Auteur ; Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; Tracy FINCH, Auteur ; Sarah AL-ASHMORI, Auteur ; Ruby HERRINGTON, Auteur ; Clare SCARLETT, Auteur ; Carole BUCKLEY, Auteur ; Sally-Ann COOPER, Auteur ; Cristina FERNANDEZ-GARCIA, Auteur ; Shona HAINING, Auteur ; Rhianna LEES, Auteur ; Nicholas LENNOX, Auteur ; Sebastian MOSS, Auteur ; Tim NICHOLLS, Auteur ; Christina NICOLAIDIS, Auteur ; Malcolm OSBORNE, Auteur ; Dora M. RAYMAKER, Auteur ; Tomos ROBINSON, Auteur ; Anna URBANOWICZ, Auteur ; James M.S. WASON, Auteur ; Colin WILSON, Auteur ; Jeremy R. PARR, Auteur Article en page(s) : p.1955-1970 Langues : Anglais (eng) Mots-clés : acceptability  autism  health checks  implementation  primary care Index. décimale : PER Périodiques Résumé : Autistic people experience higher rates of physical and mental health conditions and face barriers to accessing healthcare. This study evaluated the acceptability and implementation of a co-designed primary care health check for autistic people (18 years+), delivered within a randomised controlled trial in Northern England investigating clinical and cost-effectiveness. Following health checks, all autistic people, carers/supporters, and clinicians were invited to complete evaluation questionnaires and a subset invited for an interview. Eighty-one autistic people, 11 carers/supporters, and 18 clinicians returned questionnaires and were descriptively analysed; 44 participants were interviewed. Findings demonstrated that the pre-appointment questionnaire and health check appointment were reported to be acceptable, valued and beneficial by all groups. Carers/supporters reported positive impacts of their role in reducing anxiety and supporting communication. Interview analysis, informed by Normalisation Process Theory, highlighted important factors to consider for implementation of the health check at scale. This included the importance of providing clear guidance and resources ahead of the health check and ensuring enough funding and capacity in primary care. Health checks can be delivered to autistic people in local neighbourhoods to address heath inequalities. Health checks require adequate resources, staff training, and integration into care systems to ensure successful implementation and sustainability.Lay Abstract Improving healthcare for autistic people: a study of a new primary care health checkAutistic people often face more health problems and shorter average life expectancy compared to non-autistic people. They can also find it harder to access healthcare that meets their needs. To help with this, researchers developed a new health check specifically for autistic people to be used in general practice settings. This health check included a pre-appointment questionnaire to help prepare for the visit and a longer appointment with a trained clinician. This study looked at how acceptable the health check was for autistic people, their carers/supporters, and clinicians, and what factors will help it work well in practice. It used questionnaires and interviews to collect views from autistic people who received the health check, clinicians who delivered it, and carers/supporters who attended the appointment. Most autistic people thought the health check was helpful and they would attend one again. The pre-appointment questionnaire helped people share important information, although some found it difficult to complete and some people needed support to complete it. Carers/supporters also found the process helpful in supporting the autistic adult and improving communication. Clinicians said they were able to put adjustments in place, use the clinician health check template, and found the extra time and structure the health check provided useful. However, they mentioned needing more resources and support to make it work in everyday practice. The interviews showed that autistic people, carers/supporters, and clinicians thought the health check is a good idea and should be offered more widely. It is important to make sure autistic people understand what to expect from the health check and that they can ask for adjustments to meet their needs. For the health check to work well long term, general practice settings will need funding, staff training in autism awareness, and clear systems for delivering the health checks. En ligne : https://dx.doi.org/10.1177/13623613261433106 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590 [article] Acceptability and Implementation of a Primary Care Health Check for Autistic People: Findings From Evaluation Questionnaires and Interviews [texte imprimé] / Hannah MERRICK, Auteur ; Helen TAYLOR, Auteur ; Barry INGHAM, Auteur ; Tracy FINCH, Auteur ; Sarah AL-ASHMORI, Auteur ; Ruby HERRINGTON, Auteur ; Clare SCARLETT, Auteur ; Carole BUCKLEY, Auteur ; Sally-Ann COOPER, Auteur ; Cristina FERNANDEZ-GARCIA, Auteur ; Shona HAINING, Auteur ; Rhianna LEES, Auteur ; Nicholas LENNOX, Auteur ; Sebastian MOSS, Auteur ; Tim NICHOLLS, Auteur ; Christina NICOLAIDIS, Auteur ; Malcolm OSBORNE, Auteur ; Dora M. RAYMAKER, Auteur ; Tomos ROBINSON, Auteur ; Anna URBANOWICZ, Auteur ; James M.S. WASON, Auteur ; Colin WILSON, Auteur ; Jeremy R. PARR, Auteur . - p.1955-1970. Langues : Anglais (eng) in Autism > 30-8 (August 2026) . - p.1955-1970 Mots-clés : acceptability  autism  health checks  implementation  primary care Index. décimale : PER Périodiques Résumé : Autistic people experience higher rates of physical and mental health conditions and face barriers to accessing healthcare. This study evaluated the acceptability and implementation of a co-designed primary care health check for autistic people (18 years+), delivered within a randomised controlled trial in Northern England investigating clinical and cost-effectiveness. Following health checks, all autistic people, carers/supporters, and clinicians were invited to complete evaluation questionnaires and a subset invited for an interview. Eighty-one autistic people, 11 carers/supporters, and 18 clinicians returned questionnaires and were descriptively analysed; 44 participants were interviewed. Findings demonstrated that the pre-appointment questionnaire and health check appointment were reported to be acceptable, valued and beneficial by all groups. Carers/supporters reported positive impacts of their role in reducing anxiety and supporting communication. Interview analysis, informed by Normalisation Process Theory, highlighted important factors to consider for implementation of the health check at scale. This included the importance of providing clear guidance and resources ahead of the health check and ensuring enough funding and capacity in primary care. Health checks can be delivered to autistic people in local neighbourhoods to address heath inequalities. Health checks require adequate resources, staff training, and integration into care systems to ensure successful implementation and sustainability.Lay Abstract Improving healthcare for autistic people: a study of a new primary care health checkAutistic people often face more health problems and shorter average life expectancy compared to non-autistic people. They can also find it harder to access healthcare that meets their needs. To help with this, researchers developed a new health check specifically for autistic people to be used in general practice settings. This health check included a pre-appointment questionnaire to help prepare for the visit and a longer appointment with a trained clinician. This study looked at how acceptable the health check was for autistic people, their carers/supporters, and clinicians, and what factors will help it work well in practice. It used questionnaires and interviews to collect views from autistic people who received the health check, clinicians who delivered it, and carers/supporters who attended the appointment. Most autistic people thought the health check was helpful and they would attend one again. The pre-appointment questionnaire helped people share important information, although some found it difficult to complete and some people needed support to complete it. Carers/supporters also found the process helpful in supporting the autistic adult and improving communication. Clinicians said they were able to put adjustments in place, use the clinician health check template, and found the extra time and structure the health check provided useful. However, they mentioned needing more resources and support to make it work in everyday practice. The interviews showed that autistic people, carers/supporters, and clinicians thought the health check is a good idea and should be offered more widely. It is important to make sure autistic people understand what to expect from the health check and that they can ask for adjustments to meet their needs. For the health check to work well long term, general practice settings will need funding, staff training in autism awareness, and clear systems for delivering the health checks. En ligne : https://dx.doi.org/10.1177/13623613261433106 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=590

Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults / Christina NICOLAIDIS in Autism, 30-10 (October 2026)  

Public ISBD [article]  inAutism > 30-10 (October 2026) . - p.2628-2647 Titre : Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults Type de document : texte imprimé Auteurs : Christina NICOLAIDIS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Mirah SCHARER, Auteur ; Joelle MASLAK, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Willi HORNER-JOHNSON, Auteur ; Julia LOVE, Auteur ; Dora M. RAYMAKER, Auteur ; Andrea JOYCE, Auteur ; Shannon DES ROCHES ROSA, Auteur ; Grace A. HERBERT, Auteur ; Julie Lounds TAYLOR, Auteur ; Liu-Qin YANG, Auteur ; Katherine MCDONALD, Auteur ; Zack SIDDEEK, Auteur ; Steven K. KAPP, Auteur ; Emanuel FROWNER, Auteur ; Ivanova SMITH, Auteur ; Anna Furra WALLINGTON, Auteur ; K.J. FLORES, Auteur ; Noah KAUFMAN, Auteur ; Clarissa KRIPKE, Auteur ; Joseph VERA, Auteur ; Vivian D. GRILLO, Auteur ; Finn GARDINER, Auteur Article en page(s) : p.2628-2647 Langues : Anglais (eng) Mots-clés : adults  populations  outcome measurement  methods  community based participatory research  participatory methods  longitudinal research  health services  contexts Index. décimale : PER Périodiques Résumé : Adult autism services research is plagued by methodological challenges, including difficulty obtaining representative or heterogeneous samples and a frequent mismatch between experimental methodologies and real-world settings. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Outcomes Project used a community-based participatory research (CBPR) approach to (a) create the AASPIRE Measurement Toolkit – a set of self- and caregiver-reported accessible outcome measures to evaluate health and social services and (b) explore factors predicting changes in outcomes. We previously used a CBPR-nested Delphi process to identify high-priority outcomes and adapted or created instruments to measure them. We conducted a longitudinal survey to validate these measures in a pragmatic sample of autistic adults with subcohorts from two health care systems, two disability service systems, and the larger autistic community in the United States. This article (a) describes our study methods and the sample’s baseline characteristics and (b) compares characteristics among participants in the separate subcohorts and sites. We collected baseline data from 870 participants. Follow-up response rates were >80% for the second and third time points. The sample includes strong heterogeneity. As expected, sample characteristics differed markedly between the three subcohorts. Lessons from our experience may help other researchers devise strategies to effectively recruit heterogeneous samples of autistic adults across various settings.Lay Abstract There are many challenges that can get in the way of doing good research on autism in adulthood. Examples of these types of challenges include the following: (a) it can be hard to include autistic people with a wide range of characteristics in research studies and (b) traditional research may come up with results that do not really apply to people in the real world. Academic Autism Spectrum Partnership in Research and Education (AASPIRE) is a group of academics and autistic community members who work together as equal partners. We are creating the AASPIRE Measurement Toolkit, an accessible set of survey measures about the health and life outcomes most important to autistic adults. In an earlier part of the project, we worked together to create the measures in the Toolkit. Now we are doing a big survey study to test the new measures and look at what predicts changes in outcomes over time. This article describes our study methods and the characteristics of the people in the sample. It also compares basic information about people recruited to the study from different places, using different methods. We recruited 870 autistic adults from two health care centers (the health care subgroup); two disability services systems (the disability subgroup); and the broader autistic community. We collected data from each person three times over 12 to 18 months. Over 80% of study participants did the follow-up surveys. People in the study had a wide range of personal and disability-related characteristics. As we predicted, the three subgroups were really different from each other. Even the two sites within the subgroups were a bit different. This serves as a warning to researchers: results that come from people recruited from one setting may not apply to people in other settings. It also shows how using multiple different strategies at the same time can increase the diversity in study samples. En ligne : https://dx.doi.org/10.1177/13623613261476381 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593 [article] Addressing Common Problems in Autism Research: Cohort Development and Sample Description for a Participatory, Real-World, Longitudinal Study of Outcomes in Autistic Adults [texte imprimé] / Christina NICOLAIDIS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Mirah SCHARER, Auteur ; Joelle MASLAK, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Willi HORNER-JOHNSON, Auteur ; Julia LOVE, Auteur ; Dora M. RAYMAKER, Auteur ; Andrea JOYCE, Auteur ; Shannon DES ROCHES ROSA, Auteur ; Grace A. HERBERT, Auteur ; Julie Lounds TAYLOR, Auteur ; Liu-Qin YANG, Auteur ; Katherine MCDONALD, Auteur ; Zack SIDDEEK, Auteur ; Steven K. KAPP, Auteur ; Emanuel FROWNER, Auteur ; Ivanova SMITH, Auteur ; Anna Furra WALLINGTON, Auteur ; K.J. FLORES, Auteur ; Noah KAUFMAN, Auteur ; Clarissa KRIPKE, Auteur ; Joseph VERA, Auteur ; Vivian D. GRILLO, Auteur ; Finn GARDINER, Auteur . - p.2628-2647. Langues : Anglais (eng) in Autism > 30-10 (October 2026) . - p.2628-2647 Mots-clés : adults  populations  outcome measurement  methods  community based participatory research  participatory methods  longitudinal research  health services  contexts Index. décimale : PER Périodiques Résumé : Adult autism services research is plagued by methodological challenges, including difficulty obtaining representative or heterogeneous samples and a frequent mismatch between experimental methodologies and real-world settings. The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) Outcomes Project used a community-based participatory research (CBPR) approach to (a) create the AASPIRE Measurement Toolkit – a set of self- and caregiver-reported accessible outcome measures to evaluate health and social services and (b) explore factors predicting changes in outcomes. We previously used a CBPR-nested Delphi process to identify high-priority outcomes and adapted or created instruments to measure them. We conducted a longitudinal survey to validate these measures in a pragmatic sample of autistic adults with subcohorts from two health care systems, two disability service systems, and the larger autistic community in the United States. This article (a) describes our study methods and the sample’s baseline characteristics and (b) compares characteristics among participants in the separate subcohorts and sites. We collected baseline data from 870 participants. Follow-up response rates were >80% for the second and third time points. The sample includes strong heterogeneity. As expected, sample characteristics differed markedly between the three subcohorts. Lessons from our experience may help other researchers devise strategies to effectively recruit heterogeneous samples of autistic adults across various settings.Lay Abstract There are many challenges that can get in the way of doing good research on autism in adulthood. Examples of these types of challenges include the following: (a) it can be hard to include autistic people with a wide range of characteristics in research studies and (b) traditional research may come up with results that do not really apply to people in the real world. Academic Autism Spectrum Partnership in Research and Education (AASPIRE) is a group of academics and autistic community members who work together as equal partners. We are creating the AASPIRE Measurement Toolkit, an accessible set of survey measures about the health and life outcomes most important to autistic adults. In an earlier part of the project, we worked together to create the measures in the Toolkit. Now we are doing a big survey study to test the new measures and look at what predicts changes in outcomes over time. This article describes our study methods and the characteristics of the people in the sample. It also compares basic information about people recruited to the study from different places, using different methods. We recruited 870 autistic adults from two health care centers (the health care subgroup); two disability services systems (the disability subgroup); and the broader autistic community. We collected data from each person three times over 12 to 18 months. Over 80% of study participants did the follow-up surveys. People in the study had a wide range of personal and disability-related characteristics. As we predicted, the three subgroups were really different from each other. Even the two sites within the subgroups were a bit different. This serves as a warning to researchers: results that come from people recruited from one setting may not apply to people in other settings. It also shows how using multiple different strategies at the same time can increase the diversity in study samples. En ligne : https://dx.doi.org/10.1177/13623613261476381 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=593

Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities / Dora M. RAYMAKER in Autism, 21-8 (November 2017)  

Public ISBD [article]  inAutism > 21-8 (November 2017) . - p.972-984 Titre : Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities Type de document : texte imprimé Auteurs : Dora M. RAYMAKER, Auteur ; Katherine E. MCDONALD, Auteur ; Elesia ASHKENAZY, Auteur ; Martha GERRITY, Auteur ; Amelia M. BAGGS, Auteur ; Clarissa KRIPKE, Auteur ; Sarah HOURSTON, Auteur ; Christina NICOLAIDIS, Auteur Année de publication : 2017 Article en page(s) : p.972-984 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist?Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n=74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n=67)), concern about cost (30% (n=62)), facilities causing sensory issues 30% ((n=62)), and difficulty communicating with providers (29% (n=61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2 0.8, p?< 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them. En ligne : https://doi.org/10.1177/1362361316661261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=320 [article] Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities [texte imprimé] / Dora M. RAYMAKER, Auteur ; Katherine E. MCDONALD, Auteur ; Elesia ASHKENAZY, Auteur ; Martha GERRITY, Auteur ; Amelia M. BAGGS, Auteur ; Clarissa KRIPKE, Auteur ; Sarah HOURSTON, Auteur ; Christina NICOLAIDIS, Auteur . - 2017 . - p.972-984. Langues : Anglais (eng) in Autism > 21-8 (November 2017) . - p.972-984 Index. décimale : PER Périodiques Résumé : Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist?Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n=74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n=67)), concern about cost (30% (n=62)), facilities causing sensory issues 30% ((n=62)), and difficulty communicating with providers (29% (n=61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2 0.8, p?< 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them. En ligne : https://doi.org/10.1177/1362361316661261 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=320

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 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 M. 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] / 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 M. 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

Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" / Christina NICOLAIDIS in Autism, 29-8 (August 2025)  

Public ISBD [article]  inAutism > 29-8 (August 2025) . - p.1959-1972 Titre : Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" Type de document : texte imprimé Auteurs : Christina NICOLAIDIS, Auteur ; Mirah SCHARER, Auteur ; Dora M. RAYMAKER, Auteur ; Joseph VERA, Auteur ; Todd EDWARDS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Joelle MASLAK, Auteur ; Liu-Qin YANG, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Steven K. KAPP, Auteur ; Andrea JOYCE, Auteur ; Anna WALLINGTON, Auteur ; null NULL, Auteur Article en page(s) : p.1959-1972 Langues : Anglais (eng) Mots-clés : autistic adults  Delphi method  community-based participatory research  patient-reported outcome measures Index. décimale : PER Périodiques Résumé : People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract Why was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251322082 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564 [article] Consensus on high-priority outcomes to be used in the evaluation of services for autistic adults: Results from a "CBPR-Nested Delphi Process" [texte imprimé] / Christina NICOLAIDIS, Auteur ; Mirah SCHARER, Auteur ; Dora M. RAYMAKER, Auteur ; Joseph VERA, Auteur ; Todd EDWARDS, Auteur ; Ian MOURA, Auteur ; Mary BAKER-ERICZEN, Auteur ; Joelle MASLAK, Auteur ; Liu-Qin YANG, Auteur ; Rachel KRIPKE-LUDWIG, Auteur ; Steven K. KAPP, Auteur ; Andrea JOYCE, Auteur ; Anna WALLINGTON, Auteur ; null NULL, Auteur . - p.1959-1972. Langues : Anglais (eng) in Autism > 29-8 (August 2025) . - p.1959-1972 Mots-clés : autistic adults  Delphi method  community-based participatory research  patient-reported outcome measures Index. décimale : PER Périodiques Résumé : People are increasingly recognizing the need for service interventions to improve the lives of autistic adults. However, less is known about how to best evaluate such services. We aimed to identify (1) which self-reported outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) what survey instruments would be needed to measure them. We nested a traditional researcher-driven "Delphi process" within our community-based participatory research approach in what we are calling a "CBPR-Nested Delphi Process." The process allowed us to reach a full consensus among 53 experts with professional and lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers. The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available instruments to measure these outcomes would need adaptations to be used with autistic adults (or proxies). Researchers and service providers should consider targeting interventions to these measurable outcomes and evaluating them using instruments that have been co-developed with autistic adults.Lay abstract Why was this project done?People are starting to recognize the need for services to improve the lives of autistic adults. But less is known about how to best evaluate such services.What were the goals of the project?To identify (1) which outcomes are most important to measure when evaluating the effectiveness of services for autistic adults and (2) how we can successfully measure them using surveys.What did the researchers do?We used a method called a "Delphi process" that gets input from lots of different experts. We used that method inside our own long-standing community-based participatory research (CBPR) process so that we could share power between the academic and community members of our team. We reached a full consensus (agreement) among 53 experts. These experts had professional and/or lived experience as autistic adults, family members, health and disability service providers, autism community leaders, and researchers.What does this study add?The final list of outcomes included quality of life, overall health, emotional wellbeing, anxiety, depression, suicidality, autistic burnout, social support, employment satisfaction, community participation, self-determination, access to communication, activities of daily living, satisfaction with social services, and satisfaction with healthcare services. Experts felt almost all available surveys that try to measure these outcomes would need adaptations to be used with autistic adults (or if needed, with their caregivers).What are the implications?Researchers and service providers should consider targeting services to these outcomes. They should evaluate the effectiveness of services using surveys that have been created with and for autistic adults. En ligne : https://journals.sagepub.com/doi/abs/10.1177/13623613251322082 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=564

Development and psychometric testing of the AASPIRE Adult Autism Healthcare Provider Self-Efficacy Scale / Christina NICOLAIDIS in Autism, 25-3 (April 2021)  

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Factors Influencing the Use of Cognitive-Behavioral Therapy with Autistic Adults: A Survey of Community Mental Health Clinicians / Brenna B. MADDOX in Journal of Autism and Developmental Disorders, 49-11 (November 2019)  

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"I wouldn't know where to start": Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults / Brenna B. MADDOX in Autism, 24-4 (May 2020)  

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Influences on suicidality and suicide-prevention needs for the autistic community: Qualitative insights from multiple perspectives / Anne V. KIRBY in Autism, 30-1 (January 2026)  

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Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research / Hillary K. SCHILTZ in Autism Research, 17-4 (April 2024)  

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œ[I] don’t wanna just be like a cog in the machine : Narratives of autism and skilled employment / Dora M. RAYMAKER in Autism, 27-1 (January 2023)  

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Psychometric testing of a set of patient-reported instruments to assess healthcare interventions for autistic adults / Christina NICOLAIDIS in Autism, 25-3 (April 2021)  

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“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum / Christina NICOLAIDIS in Autism, 19-7 (October 2015)  

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A Systematic Review of What Barriers and Facilitators Prevent and Enable Physical Healthcare Services Access for Autistic Adults / David MASON in Journal of Autism and Developmental Disorders, 49-8 (August 2019)  

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The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants / Christina NICOLAIDIS in Autism, 23-8 (November 2019)  

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