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| The Autistic Traits questionnaire is an [[additional assessments|additional assessment]] among adult [[cohort|Lifelines]] participants.\\ | The Autistic Traits questionnaire is an [[additional assessments|additional assessment]] among adult [[cohort|Lifelines]] participants.\\ |
| The digital questionnaire was developed at the initiative of the [[https://www.autismresearchcentre.com|Autism Research Center]] of Cambridge University (UK), in collaboration with the [[https://www.sarr.nl|Sarr (Parnassia group)]] in Rotterdam (NL).\\ | The digital questionnaire was developed at the initiative of the [[https://www.autismresearchcentre.com|Autism Research Center]] of Cambridge University (UK), in collaboration with the [[https://www.sarr.nl|Sarr (Parnassia group)]] in Rotterdam (NL).\\ |
| The questionnaire consists of the [[autism spectrum (AQ-10)|10-item]] adult version of the [[https://en.wikipedia.org/wiki/Autism-spectrum_quotient|Autism Spectrum Quotient]], plus some additional questions about participants' experience with [[informal care]] in general, and informal care of [[https://en.wikipedia.org/wiki/Autism_spectrum|autism spectrum disorder (ASD)]] patients in particular. | The questionnaire consists of the [[autism spectrum (AQ-10)|10-item]] adult version of the [[https://en.wikipedia.org/wiki/Autism-spectrum_quotient|Autism Spectrum Quotient]] (([[https://doi.org/10.1023/a:1005653411471|Baron-Cohen S, Wheelwright S, Skinner R, Martin J, Clubley E. The autism-spectrum quotient (AQ): evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians. J Autism Dev Disord. 2001 Feb;31(1):5-17. doi: 10.1023/a:1005653411471. Erratum in: J Autism Dev Disord 2001 Dec;31(6):603. PMID: 11439754]])), plus some additional questions about participants' experience with [[informal care]] in general, and informal care of [[https://en.wikipedia.org/wiki/Autism_spectrum|autism spectrum disorder (ASD)]] patients in particular. |
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| | The Autistic Traits variables are available for use for all researchers and can be requested through the catalogue. |
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| | When the AUTQ data has been used in your research, you will have to include the following reference: |
| | * [[https://doi.org/10.1038/s41467-020-17794-1|Warrier, V., Greenberg, D.M., Weir, E. et al. Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun 11, 3959 (2020). https://doi.org/10.1038/s41467-020-17794-1]] |
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| | Specifically, when the AQ has been used in your research, you will have to include the following reference: |
| | * [[https://10.1023/a:1005653411471|Baron-Cohen S, Wheelwright S, Skinner R, Martin J, Clubley E. The autism-spectrum quotient (AQ): evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians. J Autism Dev Disord. 2001 Feb;31(1):5-17. doi: 10.1023/a:1005653411471. Erratum in: J Autism Dev Disord 2001 Dec;31(6):603. PMID: 11439754.]] |
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| ===== Protocol & response ===== | ===== Protocol & response ===== |
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| The digital questionnaire was sent out between september and december 2019.\\ | The digital questionnaire was sent out between july and november 2019.\\ |
| ~110,000 adult Lifelines participants received the questionnaire, of which ~38,000 participants (35%) responded. | ~110,000 adult Lifelines participants received the questionnaire, of which ~39,000 participants (35%) responded. |
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| ===== Variables ===== | ===== Variables ===== |
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| The questionnaire consisted mainly of the [[Autism spectrum (AQ-10)|Autism Spectrum Quotient]].\\ | The questionnaire consisted mainly of the [[Autism spectrum (AQ-10)|Autism Spectrum Quotient]].\\ |
| In addition, non-binary [[sex & gender|gender]] was assessed.\\ | |
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| The following additional questions were asked about autism spectrum disorder: | The following additional questions were asked about Autism Spectrum Disorder: |
| | **Questions English** | **Questions Dutch** | **Code** | **Variable** | **Assessment** | **Age** | | | **Questions English** | **Questions Dutch** | **Code** | **Variable** | **Assessment** | **Age** | |
| | Are you diagnosed with autism? | Is bij u autisme vastgesteld? | autism_diagnosis_adu_q_2 | AUTISME11 | [[AUTQ]] | 18+ | | | Are you diagnosed with autism? | Is bij u autisme vastgesteld? | autism_diagnosis_adu_q_2 | AUTISME11 | [[AUTQ]] | 18+ | |
| | In what year where you diagnosed with autism? | In welk jaar is autisme bij u vastgesteld? | autism_diagnosis_adu_q_2_a | AUTISME12 | [[AUTQ]] | 18+ | | | In what year where you diagnosed with autism? | In welk jaar is autisme bij u vastgesteld? | autism_diagnosis_adu_q_2_a | AUTISME12 | [[AUTQ]] | 18+ | |
| | Do you have a biological first-degree relative who is diagnosed with autism? | Hebt u eerstegraads bloedverwanten (kinderen, ouders of broers/zussen) bij wie autisme is\\ vastgesteld? | autism_diagnosis_fam_q_1_a-e | AUTISME13A-E | [[AUTQ]] | 18+ | | | Do you have a biological first-degree relative (children, parents, siblings) who is diagnosed with autism? | Hebt u eerstegraads bloedverwanten (kinderen, ouders, broers/zussen) bij wie autisme is\\ vastgesteld? | autism_diagnosis_fam_q_1_a-e | AUTISME13A-E | [[AUTQ]] | 18+ | |
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| Furthermore, some questions were asked about informal care, in addition to 2 basic [[informal care]] questions: | |
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| | **Questions English** | **Questions Dutch** | **Code** | **Variable** | **Assessment** | **Age** | | |
| | Since when do you give informal care to your partner / father / mother / father-in-law / mother-in-law /son / daughter / son-in-law / daughter-in-law / brother / sister / friend/acquaintance / neighbour / someone else? (month) | Vanaf wanneer geeft u mantelzorg aan uw partner / vader / moeder / schoonvader / schoonmoeder / zoon / dochter / schoonzoon / schoondochter / broer / zus / vriend/kennis / buurman/buurvrouw / iemand anders? (maand) | care_start_adu_q_1_a1-a14 | INFCARE3A1-14 | [[AUTQ]] | 18+ | | |
| | Since when do you give informal care to [this person]? (year) | Vanaf wanneer geeft u mantelzorg aan [deze persoon]? (jaar) | care_start_adu_q_1_b1-b14 | INFCARE3B1-14 | [[AUTQ]] | 18+ | | |
| | can you indicate with a number between '0 to 100' how much of a burden it is to provide informal care to [this person]? The closer to '0 ', the less of a burden you think it is. | kunt u aangeven met een getal tussen '0 tot 100' hoe zwaar u het vindt om mantelzorg aan [deze persoon] te geven? 0 geeft aan dat u het geven van mantelzorg totaal niet zwaar vindt | care_burden_adu_q_1_a1-a14 | INFCARE5A-N | [[AUTQ]] | 18+ | | |
| | was there a period in which you could not do your normal duties (e.g. work, school, household) because you were providing care for [this person]? | hebt u een periode niet uw gebruikelijke taken (bijv. werk, school, huishouden) kunnen doen doordat u voor [deze persoon] zorgde? | care_burden_adu_q_1_b1-b14 | AUTISME14A-N | [[AUTQ]] | 18+ | | |
| | how much time do you need on average to care for [this person]? | hoeveel tijd hebt u gemiddeld nodig om voor [deze persoon] te zorgen? | care_time_adu_q_a1-a14 | AUTISME15A-N | [[AUTQ]] | 18+ | | |
| | (Beginning) dementia/memory problems / what is the cause of the need for help of [this person]? | (Beginnende) dementie/geheugenproblemen / Wat is de oorzaak van de hulpbehoefte van [deze persoon]? | recipient_cause_adu_q_1_a1-a14 | INFCARE14A1-A14 | [[AUTQ]] | 18+ | | |
| | Mental problems / what is the cause of the need for help of [this person]? | Psychische problemen / Wat is de oorzaak van de hulpbehoefte van [deze persoon]? | recipient_cause_adu_q_1_b1-b14 | INFCARE14B1-B14 | [[AUTQ]] | 18+ | | |
| | Physical problems / what is the cause of the need for help of [this person]? | Lichamelijke problemen / Wat is de oorzaak van de hulpbehoefte van [deze persoon]? | recipient_cause_adu_q_1_c1-c14 | INFCARE14C1-C14 | [[AUTQ]] | 18+ | | |
| | Mental disability / what is the cause of the need for help of [this person]? | Verstandelijke handicap / Wat is de oorzaak van de hulpbehoefte van [deze persoon]? | recipient_cause_adu_q_1_d1-d14 | INFCARE14D1-D14 | [[AUTQ]] | 18+ | | |
| | Behavioural problems / what is the cause of the need for help of [this person]? | Gedragsproblemen / Wat is de oorzaak van de hulpbehoefte van [deze persoon]? | recipient_cause_adu_q_1_e1-e14 | INFCARE14E1-E14 | [[AUTQ]] | 18+ | | |
| | Other / what is the cause of the need for help of [this person]? | Anders / Wat is de oorzaak van de hulpbehoefte van [deze persoon]? | recipient_cause_adu_q_1_f1-f14 | INFCARE14F1-F14 | [[AUTQ]] | 18+ | | |
| | Diabetes / which disease or disorder was the cause of the care requirements of [this person]? | Suikerziekte / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_a1-a14 | INFCARE15A1-A14 | [[AUTQ]] | 18+ | | |
| | (Effects of) a stroke, cerebral hemorrhage, cerebral infarction, TIA / which disease or disorder was the cause of the care requirements of [this person]? | (Gevolgen van) beroerte, hersenbloeding, herseninfarct of TIA / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_b1-b14 | INFCARE15B1-B14 | [[AUTQ]] | 18+ | | |
| | Heart failure / which disease or disorder was the cause of the care requirements of [this person]? | Hartfalen / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_c1-c14 | INFCARE15C1-C14 | [[AUTQ]] | 18+ | | |
| | Cancer (malignancy) / which disease or disorder was the cause of the care requirements of [this person]? | Een vorm van kanker (kwaadaardige aandoening) / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_d1-d14 | INFCARE15D1-D14 | [[AUTQ]] | 18+ | | |
| | Asthma, chronic bronchitis, lung emphysema, COPD / which disease or disorder was the cause of the care requirements of [this person]? | Astma, chronische bronchitis, longemfyseem of CARA/COPD / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_e1-e14 | INFCARE15E1-E14 | [[AUTQ]] | 18+ | | |
| | Depression / which disease or disorder was the cause of the care requirements of [this person]? | Depressie / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_m1-m14 | INFCARE15M1-M14 | [[AUTQ]] | 18+ | | |
| | Anxiety or panic disorder / which disease or disorder was the cause of the care requirements of [this person]? | Angst-/paniekstoornis / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_n1-n14 | INFCARE15N1-N14 | [[AUTQ]] | 18+ | | |
| | Dementia / which disease or disorder was the cause of the care requirements of [this person]? | Dementie / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_o1-o14 | INFCARE15O1-O14 | [[AUTQ]] | 18+ | | |
| | Kidney disease / which disease or disorder was the cause of the care requirements of [this person]? | Nierziekte / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_u1-u14 | INFCARE15U1-U14 | [[AUTQ]] | 18+ | | |
| | Autism/Autism spectrum disorder / which disease or disorder was the cause of the care requirements of [this person]? | Autisme/autisme spectrum stoornis / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_v1-v14 | INFCARE15V1-V14 | [[AUTQ]] | 18+ | | |
| | Rheumatism/joint problems / which disease or disorder was the cause of the care requirements of [this person]? | Reuma/gewrichtsklachten / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_w1-w14 | INFCARE15W1-W14 | [[AUTQ]] | 18+ | | |
| | Other / which disease or disorder was the cause of the care requirements of [this person]? | Anders / door welke ziekten en/of aandoeningen is de hulpbehoefte bij [deze persoon] veroorzaakt? | recipient_disorder_adu_q_1_t1-t14 | INFCARE15T1-T14 | [[AUTQ]] | 18+ | | |
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| | In addition, non-binary [[sex & gender|gender]] was assessed.\\ |
| | Furthermore, some questions were asked about [[informal care]]. |
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| | ===== Publications ===== |
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| | The following publications included results from AUTQ: |
| | * Warrier, V. et al (2020). Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun 11, 3959 |
| | * Warreman E.B. et al. (2023) [[https://journals.sagepub.com/doi/10.1177/13623613231155324|Psychological, behavioural and biological factors associated with gastrointestinal symptoms in autistic adults and adults with autistic traits]]. Autism 27(7):2173-2186 |
| | * Warreman E.B. et al. (2023) [[https://www.sciencedirect.com/science/article/pii/S2589537023003887?via%3Dihub|Psychological, behavioural, and physical aspects of caregiver strain in autism-caregivers: a cohort study]]. EClinicalMedicine 64:102211. |
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