Informatie voor onderzoekers

Information for researcher about working with our In Kaart data and a list of references.

Working with the data

Researchers can use pseudonymized In Kaart data for their research if the steering group of In Kaart approves a research proposal. We strive to review the request within 2 weeks after which the applicant will be informed of the decision. If the request is not approved, you might be requested to revise the proposal and resubmit. Once your data request is approved, researchers are asked to sign a data sharing agreement (DSA). Once we receive a signed data sharing agreement, data management will prepare a dataset. A typical data request takes approximately 2 weeks to prepare, but this depends on the complexity of the dataset and the availability of the In Kaart team. Please contact us through inkaart@vu.nl if you have any comments or questions.

Data common core

Here we describe the content of the baseline questionnaire (common core). For more detailed information please contact the In Kaart team: inkaart@vu.nl

Sections:

  • Personal Information: Relationship to child/individual represented, marital status, gender, IQ
  • Education: Current education, special education types, highest level of education completed, satisfaction with education
  • Family: Ethnicity, information about biological and caregiving parents, parents' employment status
  • Developmental Challenges: Diagnoses/suspected issues, background of concerns, *background of worries about the child’s development, received assistance, satisfaction with assistance, *limitations in daily life due to the developmental issue (IRS¹), *pro-social behavior, emotional problems, behavioral problems, hyperactivity, and peer problems (SDQ²), (suspected) diagnoses in family members, other diagnoses
  • What is Going Well: Open questions regarding support, learned skills, and strategies for handling difficult moments
  • *Diagnosis Information: Age at diagnosis, location and by whom the diagnosis was made
  • *Benefits of Diagnosis: Experienced benefits, positive aspects of the disorder
  • *Treatment and Support: Received treatments, medication usage, guidance, satisfaction with treatment, medication, and support
  • Physical Health: Height and weight, complaints and illnesses, health satisfaction, motor skills
  • Living Situation: Living conditions, type of accommodation, satisfaction with living situation
  • Happiness and Relationships: Quality of life (EQ5D3,4), satisfaction with relational status, **/****emotional and social loneliness (Loneliness Scale5), quality of life (Cantril Ladder6)
  • Daily Activities/Work: Employment/daily activities status, type of activity, satisfaction with work/daily activities, **sources of income
  • Advocacy: Membership in a patient organization or association
  • Tips for Others in Similar Situations (see: Tips van deelnemers | In Kaart - register voor en door mensen met ontwikkelingsproblemen.)

Specific Questionnaires within the Common Core

Participants who indicate having a diagnosis of X will automatically receive the specific X questionnaire. Additionally, participants can choose to fill out specific lists, if applicable.

Autism:

  • Autism Screening (AQ7)

DCD (Developmental Coordination Disorder):

  • Motor Functioning (*Little DCDQ 88,9, *CVO10,11, **ADC12), motor examination and outcome, concerns about motor skills (when and where first expressed), first noticeable abnormal motor behavior, problems with motor activities at home and/or school, impact of motor problems on academic performance and social functioning.
  • Treatment and Support (when first sought help, received treatments/care or support)
  • Sports Participation/Physical Activity (membership, type of sport, frequency, physical activity norms)

Visual Impairments:

  • Visual Function Examination (period/location of eye test, visual acuity, visual field, contrast sensitivity)
  • Eye Condition (type of condition, heredity, progression)
  • Screening (self-reported vision, Weiner scale – severity13)
  • Impact (IVI-2814)
  • Specific Care and Support (type of organization, duration)
  • Additional Questions (glasses/contact lenses, use of a cane/guide dog, special education)

ADHD:

  • Attention Problems, Hyperactive and Impulsive Behavior (*SWAN15 and **ADHD-RS16)

Dyslexia:

  • Reading Skills (READ questionnaire17)
  • Impact of Reading Problems (academic and emotional impact18)
  • Support (support for individuals with dyslexia by school, parents, teachers, peers)
  • Perceived Effects of Treatment

Intellectual Disabilities:

  • Personal Factors (*daily activities, type of care or support, role as a representative (MDS VB19)
  • Self-Determination (subscale of self-determination from the POS-A20)
  • Adaptive Functioning (communication, daily living skills, and social skills/relationships (Vineland3 short form21)

Developmental Language Disorder:

  • under construction

* Only for participants under 16
** Only for participants aged 16 and older
*** Only for participants who have reported having a diagnosis
**** Only for legal representatives

References

  1. Fabiano, G. A., Pelham, J., William, E., Waschbusch, D. A., Gnagy, E. M., Lahey, B. B., Chronis, A. M., & Burrows- MacLean, L. (2006). A practical measure of impairment: Psychometric properties of the impairment rating scale in samples of children with attention deficit hyperactivity disorder and two school-based samples. Journal of Clinical Child and Adolescent Psychology, 35(3), 369–385. https:// doi.org/10.1207/s15374424jccp3503_3  
  2. Goodman, R. (1997). Strengths and Difficulties Questionnaire (SDQ) [Database record]. PsycTESTS.
  3. Ravens-Sieberer U, Wille N, Badia X, Bonsel G, Burström K, Cavrini G, Devlin N, Egmar AC, Gusi N, Herdman M, Jelsma J, Kind P, Olivares PR, Scalone L, Greiner W. Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study. Qual Life Res. 2010 Aug;19(6):887-97. doi: 10.1007/s11136-010-9649-x.
  4. Feng YS, Kohlmann T, Janssen MF, Buchholz I. Psychometric properties of the EQ-5D-5L: a systematic review of the literature. Qual Life Res. 2021 Mar;30(3):647-673. doi: 10.1007/s11136-020-02688-y.
  5. Jong Gierveld, J. de, en T. van Tilburg (1999). Manual of the Loneliness Scale. Vrije Universiteit Amsterdam (PDF and online version). http://home.fsw.vu.nl/tg.van.tilburg/manual_loneliness_scale_1999.html
  6. Cantril, H. (1965). The pattern of human concerns. Rutgers University Press.
  7. Hoekstra, R. A., Vinkhuyzen, A. A. E., Wheelwright, S., Bartels, M., Boomsma, D. I., Baron-Cohen, S., Posthuma, D., & Van Der Sluis, S. (2011). Journal of Autism and Developmental Disorders, 41(5), 589–596.
  8. Cantell, M., Houwen, S., & Schoemaker, M. (2019). Age-related validity and reliability of the dutch little developmental coordination disorder questionnaire (LDCDQ-NL). Research in Developmental Disabilities, 84, 28-35.
  9. Rihtman, T., Wilson, B. N., & Parush, S. (2011). Development of the Little Developmental Coordination Disorder Questionnaire for preschoolers and preliminary evidence of its psychometric properties in Israel. Research in Developmental Disabilities, 32(4), 1378-1387.
  10. Schoemaker MM, Flapper BCT, Reinders-Messelink HA, De Kloet A. Validity of the Motor Observation Questionnaire for Teachers as a screening instrument for children at risk for Developmental Coordination Disorder (2008). Human Movement Science, 27, 190-199.
  11. Wilson, B. N., Crawford, S. G., Green, D., Roberts, G., Aylott, A., & Kaplan, B. J. (2009). Psychometric properties of the revised developmental coordination disorder questionnaire. Physical & Occupational Therapy in Pediatrics, 29(2), 182-202.
  12. Kirby, A., Edwards, L., Sugden, D., & Rosenblum, S. (2010). The development and standardization of the adult developmental co-ordination disorders/dyspraxia checklist (ADC). Research in Developmental Disabilities, 31(1), 131-139.
  13. Weiner, A. (1991). The social support networks of blind and visually impaired young adults (Doctoral dissertation, Columbia University).
  14. Ecosse L. Lamoureux, Julie F. Pallant, Konrad Pesudovs, Jennifer B. Hassell, Jill E. Keeffe; The Impact of Vision Impairment Questionnaire: An Evaluation of Its Measurement Properties using Rasch Analysis. Invest. Ophthalmol. Vis. Sci. 2006;47(11):4732-4741. doi: https://doi.org/10.1167/iovs.06-0220.
  15. Swanson JM, Schuck S, Porter MM, Carlson C, Hartman CA, Sergeant JA, Clevenger W, Wasdell M, McCleary R, Lakes K (2012) Categorical and dimensional definitions and evaluations of symptoms of ADHD: history of the SNAP and the SWAN rating scales. Int J Educ Psychol Assess 10(1):51–70
  16. Zelfrapportagevragenlijst voor Aandachtsproblemen en Hyperactiviteit voor volwassenheid en kindertijd (ZVAH). J.J.S. Kooij en Buitelaar, 1997. In: J.J.S. Kooij, ADHD bij volwassenen. Diagnostiek en behandeling, 3e druk. Pearson Assessment and Information BV, 2010.
  17. Bazen, L, de Bree, E. H., van den Boer, M., & de Jong (submitted). Perceived Consequences of Dyslexia: The Influence of Person and Environmental Factors
  18. van Bergen, E., van Zuijen, T.L., Bishop, D.V.M., & de Jong, P.F. (2017). Why are home-literacy environment and children’s reading skills associated? What parental skills reveal. Reading Research Quarterly, 52(2), 147-160. DOI: 10.1002/rrq.160
  19. Ras, R., Embregts, P. J. C. M., Mergler, S., & Schuengel, C. (2020). Minimale Dataset voor mensen met verstandelijke beperkingen: Evaluatie. Vrije Universiteit.
  20. POS-A Claes, C., Mostert, R., Moonen, L., Van Loon, J., & Schalock, R. (2014). POS-CA. Persoonlijke Ondersteuningsuitkomsten Schaal voor kinderen en jongeren. Arduin; Universiteit Gent.
  21. Farmer, C., Adedipe, D., Bal, V. H., Chlebowski, C., & Thurm, A. (2020). Concordance of the Vineland Adaptive Behavior Scales, second and third editions. Journal of intellectual disability research : JIDR, 64(1), 18–26. https://doi.org/10.1111/jir.12691

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