The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention

Kathy Leadbitter, Catherine Aldred, Helen McConachie, Ann Le Couteur, Dharmi Kapadia, Tony Charman, Wendy Macdonald, Erica Salomone, Richard Emsley, Jonathan Green, PACT Consortium, Barbara Barrett, Sam Barron, Karen Beggs, Laura Blazey, Katy Bourne, Sarah Byford, Rachel Cole-Fletcher, Julia Collino, Ruth Colmer, Anna Cutress, Isobel Gammer, Clare Harrop, Tori Houghton, Pat Howlin, Kristelle Hudry, Sue Leach, Jessica Maxwell, Jeremy Parr, Andrew Pickles, Sarah Randles, Vicky Slonims, Carol Taylor, Kathryn Temple, Hannah Tobin, George Vamvakas, Lydia White, Kathy Leadbitter, Catherine Aldred, Helen McConachie, Ann Le Couteur, Dharmi Kapadia, Tony Charman, Wendy Macdonald, Erica Salomone, Richard Emsley, Jonathan Green, PACT Consortium, Barbara Barrett, Sam Barron, Karen Beggs, Laura Blazey, Katy Bourne, Sarah Byford, Rachel Cole-Fletcher, Julia Collino, Ruth Colmer, Anna Cutress, Isobel Gammer, Clare Harrop, Tori Houghton, Pat Howlin, Kristelle Hudry, Sue Leach, Jessica Maxwell, Jeremy Parr, Andrew Pickles, Sarah Randles, Vicky Slonims, Carol Taylor, Kathryn Temple, Hannah Tobin, George Vamvakas, Lydia White

Abstract

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up.

Keywords: Autism Spectrum Disorder; Family experience; Intervention; Parent; Quality of Life; Wellbeing.

Conflict of interest statement

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all individual participants included in the study.

References

    1. Bayat M. Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research. 2007;51:702–714. doi: 10.1111/j.1365-2788.2007.00960.x.
    1. Bölte S, de Schipper E, Robison JE, Wong VC, Selb M, Singhal N, et al. Classification of functioning and impairment: the development of ICF core sets for autism spectrum disorder. Autism Research. 2014;7(1):167–171. doi: 10.1002/aur.1335.
    1. Burgess AF, Gutstein SE. Quality of life for people with autism: Raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health. 2007;12(2):80–86. doi: 10.1111/j.1475-3588.2006.00432.x.
    1. Burnham Riosa P, Chan V, Maughan A, Stables V, Albaum C, Weiss JA. Remediating deficits or increasing strengths in autism spectrum disorder research: A content analysis. Advances in neurodevelopmental Disorders. 2017
    1. De Schipper E, Mahdi S, de Vries P, Granlund M, Holmann M, Karande S, et al. Functioning and disability in Autism Spectrum Disorder: A worldwide survey of experts. Autism Research. 2016;9(9):959–969. doi: 10.1002/aur.1592.
    1. Department of Health, UK (2017). The NHS outcomes framework 2016–2017. Retrieved from: .
    1. Dykens EM, Fisher MH, Lounds Taylor J, Lambert W, Miodrag N. Reducing distress in mothers of children with autism and other disabilities: A randomized trial. Pediatrics. 2014;134:e454–e463. doi: 10.1542/peds.2013-3164.
    1. Eapen V, Crncec R, Walter A, Ping Tay K. Conceptualisation and development of a quality of life measure for parents of children with autism spectrum disorder. Autism Research and Treatment. 2014
    1. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment. 2001;5(4):1–157. doi: 10.3310/hta5040.
    1. Estes A, Munson J, Rogers SJ, Greenson J, Winter J, Dawson G. Long-term outcomes of early intervention in 6-year-old children with Autism Spectrum Disorder. Journal of American Academy Child Adolescent Psychiatry. 2015;54(7):580–587. doi: 10.1016/j.jaac.2015.04.005.
    1. Giallo R, Wood CE, Jellett R, Porter R. Fatigue, wellbeing and parental self-efficacy in mothers of children with an Autism Spectrum Disorder. Autism: The International Journal of Research and Practice. 2011;17(4):465–480. doi: 10.1177/1362361311416830.
    1. Glaser BG, Strauss AL. The Discovery of Grounded Theory: Strategies for Qualitative Research. New York: Aldine De Gruyter; 1967.
    1. Goldberg D. General health questionnaire (GHQ-12) Windsor: Nfer-Nelson; 1992.
    1. Grange A, Bekker H, Noyes J, Langley P. Adequacy of health-related quality of life measures in children under 5 years old: systematic review. Journal of Advanced Nursing. 2007;59(3):197–220. doi: 10.1111/j.1365-2648.2007.04333.x.
    1. Green J, Charman T, McConachie H, Aldred C, Slonims V, Howlin P, et al. Parent-mediated communication-focused treatment in children with autism (PACT): a randomised controlled trial. The Lancet. 2010;375(9732):2152–2160. doi: 10.1016/S0140-6736(10)60587-9.
    1. Hastings RP, Petalas MA, Jones L, Totsika V. Systems analysis of associations over time between maternal and sibling well-being and behavioral and emotional problems of children with autism. Research in Autism Spectrum Disorders. 2014;8:1516–1520. doi: 10.1016/j.rasd.2014.07.012.
    1. Hayes SA, Watson SL. The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders. 2013;43:629–642. doi: 10.1007/s10803-012-1604-y.
    1. Iemmi, V., Knapp, M., & Ragan, I. (2017). The Autism Dividend: Reaping the Rewards of Better Investment. London, UK: London School of Economics and Political Science. Retrieved from .
    1. Jonsson U, Olsson NC, Bölte S. Can findings from randomized controlled trials of social skills training in autism spectrum disorder be generalized? The neglected dimension of external validity. Autism: The International Journal of Research and Practice. 2016;2(3):295–305. doi: 10.1177/1362361315583817.
    1. Kaminsky L, Dewey D. Psychosocial adjustment in siblings with autism. Journal of Child Psychology & Psychiatry. 2002;43(2):225–232. doi: 10.1111/1469-7610.00015.
    1. Kasari C. Update on behavioral interventions for autism and developmental disabilities. Current Opinion in Neurology. 2015;28(2):124–129. doi: 10.1097/WCO.0000000000000185.
    1. Kasari C, Gulsrud A, Freeman S, Paparella T, Helleman G. Longitudinal follow up of children with autism receiving targeted interventions on joint attention and play. Journal of American Academy of Child & Adolescent Psychiatry. 2012;51(5):487–495. doi: 10.1016/j.jaac.2012.02.019.
    1. Kasari C, Gulsrud AC, Wong CS, Kwon S, Locke J. Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. Journal of Autism & Developmental Disorders. 2010;40:1045–1056. doi: 10.1007/s10803-010-0955-5.
    1. Lord C, Risi S, Lambrecht L, Cook EH, Leventhal BL, DiLavore PC, et al. The autism diagnostic observation schedule-generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders. 2000;30(3):205–223. doi: 10.1023/A:1005592401947.
    1. Lord C, Rutter M, Le Couteur A. Autism diagnostic interview—revised: a revised version of a diagnostic interview for caregivers of individuals with possible pervasive development disorders. Journal of Autism & Developmental Disorders. 1994;24:659–685. doi: 10.1007/BF02172145.
    1. Marshall, S. S., Haywood, K. L., & Fitzpatrick, R. (2005). Patient involvement and collaboration in shared decision-making: a structured review to inform chronic disease management Report from the Patient-reported Health Instruments Group to the Department of Health. Retrieved from .
    1. McConachie H, Parr JR, Glod M, Hanratty J, Livingstone N, Oono IP, et al. Systematic review of tools to measure outcomes for young children with autism spectrum disorder. Health Technology Assessment. 2015;19(41):1–506. doi: 10.3310/hta19410.
    1. McCrimmon AW, Montgomery JM. Resilience-based perspectives for autism spectrum disorder. In: Prince-Embury S, Saklofske DH, editors. Resilience interventions for youth in diverse populations. New York: Springer; 2014. pp. 375–396.
    1. Morris C, Gibbons E, Fitzpatrick R. Child and Parent Reported Outcome Measures: A Scoping Report Focusing on Feasibility for Routine Use in the NHS. Report to the Department of Health. Oxford: University of Oxford; 2009.
    1. Morris C, Janssens A, Allard A, Thompson-Coon J, Schilling V, Tomlinson R, et al. Informing the NHS Outcomes Framework: Evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting. Health Services & Delivery Research. 2014
    1. Morris C, Janssens A, Shilling V, Allard A, Fellowes A, Tomlinson R, et al. Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures. Health and Quality of Life Outcomes. 2015;13:87. doi: 10.1186/s12955-015-0284-7.
    1. Mullen EM. Mullen scales of early learning. Circle Pines, MN: American Guidance Service; 1995.
    1. National Institute for Health and Care Excellence (2013). Guide to the methods of technology appraisal 2013. Retrieved (2017, July 2) from: .
    1. National Institutes of Health (2017). Promis: Dynamic Tools to Measure Health Outcomes from the Patient Perspective. Retrieved from: .
    1. Oono IP, Honey EJ, McConachie H. Parent-mediated early intervention for young children with autism spectrum disorders (ASD) Cochrane Database of Systematic Reviews. 2013
    1. Payakachat N, Tilford JM, Kovacs E, Kuhlthau K. Autism spectrum disorders: A review of measures for clinical, health services and cost–effectiveness applications. Expert Review of Pharmacoeconomics & Outcomes Research. 2012;12(4):485–503. doi: 10.1586/erp.12.29.
    1. Pellicano E, Dinsmore A, Charman T. What should autism research focus upon? Community views and priorities from the United Kingdom. Autism: The International Journal of Research and Practice. 2014;18(7):756–770. doi: 10.1177/1362361314529627.
    1. Pickles, A., Harris, V., Green, J., Aldred, C., McConachie, H., Slonims, V., et al. (2015). Treatment mechanism in the MRC Pre-school Autism Communication Trial: Implications for study design and parent-focussed therapy for children. Journal of Child Psychology and Psychiatry, 56(2), 162–170.
    1. Pickles A, Le Couteur A, Leadbitter K, Salomone E, Cole-Fletcher R, Tobin H, et al. Parent-mediated social communication therapy for young children with autism (PACT): long-term follow-up of a randomised controlled trial. The Lancet. 2016;388:2501–2509. doi: 10.1016/S0140-6736(16)31229-6.
    1. Quintero N, McIntyre LL. Sibling adjustment and maternal well-being: An examination of families with and without a child with an autism spectrum disorder. Focus on Autism and Other Developmental Disabilities. 2010;25(1):37–46. doi: 10.1177/1088357609350367.
    1. Rahman A, Divan G, Hamdani SU, Vajaraktar V, Taylor C, Leadbitter K, et al. Effectiveness of the parent-mediated intervention for children with autism spectrum disorder in south Asia in India and Pakistan (PASS): A randomised controlled trial. Lancet Psychiatry. 2016;3(2):128–136. doi: 10.1016/S2215-0366(15)00388-0.
    1. Rodrigue JR, Geffken GR, Morgan SB. Perceived competence and behavioral adjustment of siblings of children with autism. Journal of Autism and Developmental Disorders. 1993;23(4):665–674. doi: 10.1007/BF01046108.
    1. Ross P, Cuskelly M. Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual & Developmental Disability. 2006;31(2):77–86. doi: 10.1080/13668250600710864.
    1. Solans M, Pane S, Estrada M-D, Serra-Sutton V, Berra S, Herdman M, et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value in Health. 2008;11(4):742–764. doi: 10.1111/j.1524-4733.2007.00293.x.
    1. Sonuga Barke EJ, Brandeis D, Cortese S, Daley D, Ferrin M, Holtman M, et al. Nonpharmacological interventions for ADHD: systematic review and meta-analyses of randomized controlled trials of dietary and psychological treatments. American Journal of Psychiatry. 2013;170(3):275–289. doi: 10.1176/appi.ajp.2012.12070991.
    1. Sparrow SS, Cicchetti DV, Balla DA. Vineland Adaptive Behavior Scales: Second Edition. Livonia, MN: Pearson Assessments; 2006.
    1. Stevens K. Valuation of the Child Health Utility 9D Index. PharmacoEconomics. 2012;30(8):729–747. doi: 10.2165/11599120-000000000-00000.
    1. Tait L, Lester H. Encouraging user involvement in mental health services. Advances in Psychiatric Treatment. 2005;11:168–175. doi: 10.1192/apt.11.3.168.
    1. Tennant R, Hiller L, Fishwick R, Platt S, Joseph S, Weich S, et al. The Warwick-Edinburgh mental well-being scale (WEMWBS): Development and UK validation. Health and Quality of Life Outcomes. 2007;5(1):63. doi: 10.1186/1477-7525-5-63.
    1. Tint A, Weiss JA. Family wellbeing of individuals with autism spectrum disorder: A scoping review. Autism: The International Journal of Research and Practice. 2016;20(3):262–275. doi: 10.1177/1362361315580442.
    1. Totsika V, Hastings RP, Emerson E, Lancaster GA, Berridge GM, Vagenas D. Is there a bidirectional relationship between maternal well-being and child behavior problems in autism spectrum disorders? Longitudinal analysis of a population-defined sample of young children. Autism Research. 2013;6(3):201–211. doi: 10.1002/aur.1279.
    1. Tsai H-WJ, Cebula K, Fletcher-Watson S. Influences on the psychosocial adjustment of siblings of children with Autism Spectrum Disorder in Taiwan and the United Kingdom. Research in Autism Spectrum Disorders. 2016;32:115–129. doi: 10.1016/j.rasd.2016.09.007.
    1. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care. 2001;39(8):800–812. doi: 10.1097/00005650-200108000-00006.
    1. Wille N, Badia X, Bonsel G, Burstrom K, Cavrini G, Devlin N, et al. Development of the EQ-5D-Y: a child-friendly version of the EQ-5D. Quality of Life Research. 2010;19:875–886. doi: 10.1007/s11136-010-9648-y.
    1. Zaidman-Zait A, Mirenda P, Duku E, Szatmari P, Georgiades S, Volden J, et al. Examination of bidirectional relationships between parent stress and two types of problem behaviour in children with autism spectrum disorder. Journal of Autism & Developmental Disorders. 2014;44(8):1908–1917. doi: 10.1007/s10803-014-2064-3.

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