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09-07-2020 | Original Paper

Connecting People with People: Diagnosing Persons with Fetal Alcohol Spectrum Disorder Using Telehealth

Auteurs: Lisa M. Whittingham, Kelly D. Coons-Harding

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 4/2021

Abstract

Fetal alcohol spectrum disorder (FASD) is a diagnostic term used to describe an array of structural, neurocognitive, and behavioral effects that result from prenatal alcohol exposure. While ongoing efforts have been made to increase the capacity of communities to provide early FASD diagnosis, there continues to be on-going challenges, particularly for remote and rural communities. Telehealth is the use of technology to connect communities at a distance and has been effectively used in medicine for several decades. This literature review describes the use of telehealth in FASD and other developmental disabilities and makes recommendations for how telehealth can be used to facilitate the assessment and diagnosis of FASD in rural and remote communities.

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Astley, S. J. (2004). Diagnostic guide for fetal alcohol spectrum disorders: The 4-digit diagnostic code (3rd ed.). Seattle: University of Washington Publication Services.

Astley, S. (2016). FAS Facial Photographic Analysis Software Version 2.1.0. Seattle: University of Washington Publication Services. Available at https://depts.washington.edu/fasdpn/pdfs/FAS_Instruction_Manual_v2.1.0-050616.pdf?fbclid=IwAR1cdsVVZXBCG8_JGGxRENkEsuAAWZMAtg-F_y3qqpz3SKsbB7bVICCkcrA.

Astley, S. J., & Clarren, S. K. (1999). Diagnostic guide for fetal alcohol syndrome and related conditions: The 4-digit diagnostic code. University of Washington.

Astley, S. J., & Clarren, S. K. (2004). Diagnostic guide for fetal alcohol syndrome and related conditions: The 4-digit diagnostic code (3rd ed.). Seattle: University of Washington Publication Services.

Barretto, A., Wacker, D. P., Harding, J., Lee, J., & Berg, W. K. (2006). Using telemedicine to conduct behavioral assessments. Journal of Applied Behavior Analysis, 39(3), 333–340. https://doi.org/10.1901/jaba.2006.173-04. CrossRefPubMedPubMedCentral

Benoit, T., Bowes, C., Bowman, N., Cantin, D., Chudley, A., Crolly, D., et al. (2002). Telemedicine diagnosis for fetal alcohol syndrome—The Manitoba experience. Paediatrics and Child Health, 7(3), 147–151. CrossRef

Benz, J., Rasmussen, C., & Andrew, G. (2009). Fetal alcohol spectrum disorder: History, challenges and future directions. Paediatrics and Child Health, 14(4), 231–237. CrossRef

Brown, J. D., & Bednar, L. M. (2004). Challenges of parenting children with a fetal alcohol spectrum disorder: A concept map. Journal of Family Social Work, 8(3), 1–18. https://doi.org/10.1300/J039v08n03_01. CrossRef

Burns, C. (2017). Alberta FASD assessment and diagnostic clinic waitlists: 2016 survey results. Cold Lake, AB: PolicyWise for Children & Families.

Burrows, S., Auger, N., Gamache, P., & Hamel, D. (2013). Leading causes of unintentional injury and suicide mortality in Canadian adults across the urban-rural continuum. Public Health Reports, 128, 443–453. https://doi.org/10.1177/003335491312800604. CrossRefPubMedPubMedCentral

Canadian Institute for Health Information. (2006). How healthy are rural Canadians? An assessment of their health status and health determinants. Ottawa, ON: Canadian Institute for Health Information. Retrieved from https://secure.cihi.ca/free_products/rural_canadians_2006_report_e.pdf.

Caley, L. M., Winkelman, T., & Mariano, K. (2009). Problems expressed by caregivers of children with fetal alcohol spectrum disorder. International Journal of Nursing Terminologies and Classifications, 20(4), 181–188. https://doi.org/10.1007/s10803-017-3279-x. CrossRefPubMed

Chudley, A. E., Conry, J., Cook, J. L., Loock, C., Rosales, T., & LeBlanc, N. (2005). Fetal alcohol spectrum disorder: Canadian guidelines for diagnosis. Canadian Medical Association Journal, 172(5), S1–S21. CrossRef

Clark, M. L. E., Vinen, Z., Barbaro, J., & Dissanayake, C. (2018). School age outcomes for children diagnosed early and later with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(1), 92–102. https://doi.org/10.1007/s10803-017-3279-x. CrossRefPubMed

Cook, J. L., Green, C. R., Lilley, C. M., Anderson, S. M., Baldwin, M. E., & Chudley, A. E. (2016). Fetal alcohol spectrum disorder: A guideline for diagnosis across the lifespan. Canadian Medical Association Journal, 188(3), 191–197. https://doi.org/10.1503/cmaj.141593. CrossRefPubMed

Coons-Harding, K. D., Flannigan, K., Burns, C., Rajani, H., & Symes, B. (2019). Assessing for fetal alcohol spectrum disorder: A survey of assessment measures used in Alberta, Canada. The Journal of Population Therapeutics and Clinical Pharmacology, 26(1), e39–e55. https://doi.org/10.22374/1710-6222.26.1.4. CrossRefPubMed

Cox, L. V. (2016). FASD in a Canadian Aboriginal community context—An exploration of some ethical issues involving the access to FASD service delivery. In: Fetal alcohol spectrum disorders in adults: Ethical and legal perspectives (pp. 223–239). London: Springer.

DesMeules, M., Pong, R. W., Guernsey, J. R., Wang, F., Luo, W., & Dressler, M. P. (2012). Rural health status and determinants in Canada. In J. C. Kulig & A. M. Williams (Eds.), Health in rural Canada. Vancouver, BC: UBC Press.

Drago, A., Winding, T. N., & Antypa, N. (2016). Videoconferencing in psychiatry, a meta-analysis of assessment and treatment. European Psychiatry, 36, 29–37. https://doi.org/10.1016/j.eurpsy.2016.03.007. CrossRefPubMed

Ens, C. D., Hanlon-Dearman, A., Millar, M. C., & Longstaffe, S. (2010). Using telehealth for assessment for fetal alcohol spectrum disorder: The experience of two Canadian rural and remote communities. Telemedicine Journal and e-Health, 16(8), 872–877. https://doi.org/10.1089/tmj.2010.0070. CrossRefPubMed

Flannigan, K., Unsworth, K., & Harding, K. (2018). FASD prevalence in special populations. Retrieved from https://canfasd.ca/wp-content/uploads/2018/08/Prevalence-2-Issue-Paper-FINAL.pdf.

Gauthier, A. P., Lariviere, M., Pong, R., Snelling, S., & Young, N. (2012). Differences in occupational, transportation, domestic, and leisure-time physical activities: Do geographical location and socio-cultural status matter? Journal of Physical Activity and Health, 9(2), 163–172. https://doi.org/10.1123/jpah.9.2.163. CrossRefPubMed

Goh, Y. I., Chudley, A. E., Clarren, A. K., Koren, G., Orrbine, E., Rosales, T., et al. (2008). Development of Canadian screening tools for fetal alcohol spectrum disorder. The Canadian Journal of Clinical Pharmacology, 15, e344–e366. PubMed

Hanlon-Dearman, A., Edwards, C., Schwab, D., Millar, M. C., & Longstaffe, S. (2014). “Giving voice”: Evaluation of an integrated telehealth community care model by parents/guardians of children diagnosed with fetal alcohol spectrum disorder in Manitoba. Telehealth and e-Health. https://doi.org/10.1089/tmj.2013.0161. CrossRef

Heaton, L. (2006). Telehealth in indigenous communities in the Far North: Challenges for continued development. In M. Muero & E. Rice (Eds.), The internet and health care: Theory, research, and practice (pp. 335–356). Abingdon, OX: Routledge.

Hildebrand, R., Chow, H., Williams, C., Nelson, M., & Wass, P. (2004). Feasibility of neuropsychological testing of older adults via videoconference: Implications for assessing the capacity for independent living. Journal of Telemedicine and Telecare, 10(3), 130–134. CrossRef

Hoyme, H. E., Kalberg, W. O., Elliott, A. J., Blankenship, J., Buckey, D., Marais, A. S., et al. (2016). Updated clinical guidelines for diagnosing fetal alcohol spectrum disorders. Pediatrics, 138(2), 1. https://doi.org/10.1542/peds.2015-4256. CrossRef

Innovation, Science and Economic Development Canada. (2019). High-speed access for all: Canada’s connectivity strategy. Ottawa, ON: Innovation, Science and Economic Development Canada. Retrieved from https://www.ic.gc.ca/eic/site/139.nsf/vwapj/ISEDC_19-170_Connectivity_Strategy_E_Web.pdf/$file/ISEDC_19-170_Connectivity_Strategy_E_Web.pdf.

International Telecommunication Union. (2018). Press release: UN Broadband Commission sets global broadband targets to bring online the world’s 3.8 billion not connected to the Internet: Broadband Commission for Sustainable Development launches 2025 targets to support “Connecting the Other Half”. Retrieved from https://www.itu.int/en/mediacentre/Pages/2018-PR01.aspx?fbclid=IwAR2APV0_1OLqQYy8MlPEuypCLAR0n_yhiNnOW66wymu3uFO5Rx12PGKEuGo.

Juárez, A. P., Weitlauf, A. S., Nicholson, A., Pasternak, A., Broderick, N., Hine, J., et al. (2018). Early identification of ASD through telemedicine: Potential value for underserved populations. Journal of Autism and Developmental Disorders, 48(8), 2601–2610. https://doi.org/10.1007/s10803-018-3524-y. CrossRefPubMedPubMedCentral

Koegel, L. K., Koegel, R. L., Ashbaugh, K., & Bradshaw, J. (2014). The importance of early identification and intervention for children with or at risk for autism spectrum disorder. International Journal of Speech-Language Pathology, 16(1), 50–56. https://doi.org/10.3109/17549507.2013.861511. CrossRefPubMed

Kondro, W. (2006). Health of rural Canadians lags behind urban counterparts. Canadian Medical Association Journal, 175(10), 1195. https://doi.org/10.1503/cmaj.061306. CrossRefPubMed

Kruse, C. S., Karem, P., Shifflett, K., Vegi, L., Ravi, K., & Brooks, M. (2018). Evaluating barriers to adopting telemedicine worldwide: A systematic review. Journal of Telemedicine and Telecare, 24(1), 4–12. https://doi.org/10.1177/1357633X110.1177/1357633X166740876674087. CrossRef

Kulig, J. C., & Williams, A. M. (Eds.). (2012). Health in rural Canada. Vancouver, BC: UBC Press.

Lange, S., Probst, C., Gmel, G., Rehm, J., Burd, L., & Popova, S. (2017). Global prevalence of Fetal Alcohol Spectrum Disorder among children and youth: A systematic review and meta-analysis. JAMA Pediatrics, 171(10), 948–956. https://doi.org/10.1001/jamapediatrics.2017.1919. CrossRefPubMedPubMedCentral

Lindgren, S., Wacker, D., Suess, A., Schieltz, K., Pelzel, K., Kopelman, T., et al. (2016). Telehealth and autism: Treating challenging behavior at lower cost. Pediatrics, 137(Supplement 2), S167–S175. https://doi.org/10.1542/peds.2015-2851O. CrossRefPubMedPubMedCentral

Loue, S., & Quill, B. E. (Eds.). (2001). Handbook of rural health. New York: Kluwer Academic/Plenum Publishers.

Makela, M., Kapasi, A., Pei, J., & McFarlane, A. (2018). Supporting employment in individuals with FASD: A guide for employment professionals and final report. Edmonton, AB: PolicyWise for Children & Families in collaboration with the Canada FASD Research Network and the University of Alberta. Retrieved from https://canfasd.ca/wp-content/uploads/2018/09/Guide-and-Final-Report-Supporting-Employment-Success-in-FASD.pdf.

May, P. A., de Vries, M. M., Marais, A. S., Kalberg, W. O., Adnams, C. M., Hasken, J. M., et al. (2016). The continuum of fetal alcohol spectrum disorders in four rural communities in South Africa: Prevalence and characteristics. Drug and Alcohol Dependence. https://doi.org/10.1016/j.drugalcdep.2015.12.023. CrossRefPubMedPubMedCentral

McFarlane, A. (2011). Fetal alcohol spectrum disorder in adults: Diagnosis and assessment by a multidisciplinary team in a rural area. Canadian Journal of Rural Medicine, 16(1), 25–30.

McFarlane, A., & Rajani, H. (2007). Rural FASD diagnostic services model: Lakeland Centre for fetal alcohol spectrum disorder. Canadian Journal of Clinical Pharmacology, 14(3), e301–e306.

Mela, M., McFarlane, A., Sajobi, T. T., & Rajani, H. (2013). Clinical correlates of fetal alcohol spectrum disorder among diagnosed individuals in a rural diagnostic clinic. Journal of Population Therapeutics and Clinical Pharmacology, 20(3), e250–e258. PubMed

Mersky, J. P., & Janczewski, C. (2013). Adult well-being of foster care alumni: Comparisons to other child welfare recipients and a non-child welfare sample in a high-risk, urban setting. Children and Youth Services Review, 35(3), 367–376. CrossRef

Montani, C., Kleintovsky, K., Tyrell, J., Ploton, L., Coutturier, P., & Franco, A. (1998). Feasibility of psychological consultation with demented patients. Journal of Telemedicine and Telehealthcare, 4, 239–242. CrossRef

Myers, K. M., Sulzbacher, S., & Melzer, S. M. (2004). Telepsychiatry with children and adolescents: Are patients comparable to those evaluated in usual outpatient care? Telemedicine Journal & E-Health, 10(3), 278–285. CrossRef

Myers, K. M., Valentine, J. M., & Melzer, S. M. (2008). Child and adolescent telepsychiatry: Utilization and satisfaction. Telemedicine and e-Health, 14(2), 131–137. https://doi.org/10.1089/tmj.2007.0035. CrossRefPubMed

O’Connor, M. J., Portnoff, L. C., Lebsack-Coleman, M., & Dipple, K. M. (2019). Suicide risk in adolescents with fetal alcohol spectrum disorders. Birth Defects Research. https://doi.org/10.1002/bdr2.1465. CrossRefPubMedPubMedCentral

Ouellette-Kuntz, H. (2012). Experiences of young adults with intellectual disabilities in small town and rural Ontario (Doctoral Dissertation). Kingston, ON: Queen's University.

Pei, J., Carlson, E., Poth, C., Joly, V., Patricny, N., & Mattson, D. (2018). Creating intersections: A systematic and person-centred harmonizing framework for housing individuals with fetal alcohol spectrum disorder. Edmonton, AB: Canada FASD Research Network in collaboration with the University of Alberta. Retrieved from https://canfasd.ca/wp-content/uploads/2019/03/FASD-X-Housing-Pei-2018_Amended-March-04-2019.pdf.

Pei, J., Denys, K., Hughes, J., & Rasmussen, C. (2011). Mental health issues in fetal alcohol spectrum disorder. Journal of Mental Health, 20(5), 438–448. https://doi.org/10.3109/09638237.2011.577113. CrossRefPubMed

Pei, J., Tremblay, M., McNeil, A., Poole, N., & McFarlane, A. (2017). Neuropsychological aspects of prevention and intervention for FASD in Canada. Journal of Pediatric Neuropsychology, 3(1), 25–37. https://doi.org/10.1007/s40817-016-0020-1. CrossRef

Pignatiello, A., Teshima, J., Boydell, K. M., Minden, D., Volpe, T., & Braunberger, P. G. (2011). Child and youth telepsychiatry in rural and remote primary care. Child and Adolescent Psychiatric Clinics, 20(1), 13–28. https://doi.org/10.1016/j.chc.2010.08.008. CrossRef

Pitblado, J. R., & Pong, R. W. (1999). Geographic distribution of physicians in Canada. Sudbury, ON: Centre for Rural and Northern Health Research, Laurentian University.

Popova, S., Lange, S., Probst, C., Gmel, G., & Rehm, J. (2018). Global prevalence of alcohol use and binge drinking during pregnancy, and Fetal Alcohol Spectrum Disorder. Biochemistry and Cell Biology, 96(2), 237–240. https://doi.org/10.1139/bcb-2017-0077. CrossRefPubMed

Roozen, S., Peters, G. J. Y., Kok, G., Townend, D., Nijhuis, J., & Curfs, L. (2016). Worldwide prevalence of Fetal Alcohol Spectrum Disorders: A systematic literature review including meta-analysis. Alcoholism: Clinical and Experimental Research, 40(1), 18–32. CrossRef

Salmon, J. (2008). Fetal alcohol spectrum disorder: New Zealand birth mothers' experiences. Canadian Journal of Clinical Pharmacology, 15(2), e191–e213.

Salmon, A., & Clarren, S. K. (2011). Developing effective, culturally appropriate avenues to FASD diagnosis and prevention in northern Canada. International Journal of Circumpolar Health, 70(4), 428–433. https://doi.org/10.3402/ijch.v70i4.17844. CrossRefPubMed

Sanders, J. L., & Buck, G. (2010). A long journey: Biological and non-biological parents' experiences raising children with FASD. Journal of Population Therapeutics and Clinical Pharmacology, 17(2), e308–e322.

Stainbrook, J. A., Weitlauf, A. S., Juárez, A. P., Taylor, J. L., Hine, J., Broderick, N., et al. (2018). Measuring the service system impact of a novel telediagnostic service program for young children with autism spectrum disorder. Autism. https://doi.org/10.1177/1362361318787797. CrossRefPubMed

Streissguth, A. P., Barr, H. M., Kogan, J., & Bookstein, F. L. (1996). Understanding the occurrence of secondary disabilities in clients with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). Seattle: University of Washington Publication Services.

Streissguth, A. P., Barr, H., Kogan, J., & Bookstein, F. (1997). Primary and secondary disabilities in fetal alcohol syndrome. In A. P. Streissguth & J. Kanter (Eds.), The challenge of fetal alcohol syndrome: Overcoming secondary disabilities (pp. 25–39). Seattle, WA: University of Washington Press.

Streissguth, A. P., Bookstein, F. L., Barr, H. M., Sampson, P. D., O’Malley, K., & Kogan Young, J. (2004). Risk factors for adverse life outcomes in fetal alcohol syndrome and fetal alcohol effects. Journal of Developmental & Behavioral Pediatrics, 25(4), 228–238. CrossRef

Sulzbacher, S., Mas, J., Larson, E. H., & Shurtleff, D. B. (2003). Pediatric tele-health consultation to rural schools and clinics in the Pacific Northwest. Journal of Special Education Technology, 19(1), 35–41. https://doi.org/10.1177/016264340401900103. CrossRef

Sutherland, R., Trembath, D., & Roberts, J. (2018). Telehealth and autism: A systematic search and review of the literature. International Journal of Speech-Language Pathology, 20(3), 324–336. https://doi.org/10.1080/17549507.2018.1465123. CrossRefPubMed

Temple, V., Drummond, C., Valiquette, S., & Jozsvai, E. (2010). A comparison of intellectual assessments over video conferencing and in-person for individuals with ID: Preliminary data. Journal of Intellectual Disability Research, 54(6), 573–577. https://doi.org/10.1111/j.1365-2788.2010.01282.x. CrossRefPubMed

Tenforde, A. S., Hefner, J. E., Kodish-Wachs, J. E., Iaccarino, M. A., & Paganoni, S. (2017). Telehealth in physical medicine and rehabilitation: A narrative review. American Academy of Physical Medicine & Rehabilitation, 9(5), S51–S58. https://doi.org/10.1016/j.pmrj.2017.02.013. CrossRef

Thanh, N. X., & Jonsson, E. (2016). Life expectancy of people with fetal alcohol syndrome. Journal of Population Therapeutics and Clinical Pharmacology, 23(1), e53–e59. PubMed

Tough, S. C., Ediger, K., Hicks, M., & Clarke, M. (2008). Rural-urban differences in provider practice related to preconception counselling and fetal alcohol spectrum disorder. Canadian Journal of Rural Medicine, 13(4), 180–188. PubMed

Tulu, B., Chatterjee, S., & Laxminarayan, S. (2005). A taxonomy of telemedicine efforts with respect to applications, infrastructure, delivery tools, type of setting and purpose. In Proceedings of the 38th annual hawaii international conference on system sciences (pp. 147b–147b). Big Island, HI: Institute of Electrical and Electronics Engineers.

Viljoen, D., Croxford, J., Gossage, J. P., Kodituwakku, P. W., & May, P. A. (2002). Characteristics of mothers of children with fetal alcohol syndrome in the Western Cape province of South Africa: A case control study. Journal of Studies on Alcohol and Drugs, 63(1), 6–17.

Wacker, D. P., Lee, J. F., Dalmau, Y. C. P., Kopelman, T. G., Lindgren, S. D., Kuhle, J., et al. (2013). Conducting functional analyses of problem behavior via telehealth. Journal of Applied Behavior Analysis, 46(1), 31–46. https://doi.org/10.1002/jaba.29. CrossRefPubMedPubMedCentral

Wass, M. (2016). Clinical telehealth summative report: Use of telehealth in a pediatric ambulatory clinic setting. Edmonton, AB: Alberta Health Services.

Watson, S. L., Hayes, S. A., Coons, K. D., & Radford-Paz, E. (2013). Autism spectrum disorder and fetal alcohol spectrum disorder. Part II: A qualitative comparison of parenting stress. Journal of Intellectual & Developmental Disability, 38(2), 105–113. https://doi.org/10.3109/13668250.2013.788137. CrossRef

Watson, S. L., Hayes, S. A., & Radford-Paz, E. (2011). "Diagnose me please!" A review of research about the journey and initial impact of parents seeking a diagnosis of developmental disability for their child. International Review of Research on Developmental Disabilities, 41, 31–71. https://doi.org/10.1016/B978-0-12-386495-6.00002-3. CrossRef

White, E. (2019). Feds promising broadband across Canada, but some say it’s not even realistic for northern Ontario. CBC News. Retrieved from https://www.cbc.ca/news/canada/sudbury/high-speed-internet-northern-ontario-1.5223122?fbclid=IwAR0Kge1_YnN0pHVF6ELEqBZwCFsRDzeSf34xysKxwJGKKzgnIfQUABydobk.

Titel: Connecting People with People: Diagnosing Persons with Fetal Alcohol Spectrum Disorder Using Telehealth
Auteurs: Lisa M. Whittingham
Kelly D. Coons-Harding
Publicatiedatum: 09-07-2020
Uitgeverij: Springer US
Gepubliceerd in: Journal of Autism and Developmental Disorders / Uitgave 4/2021
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI: https://doi.org/10.1007/s10803-020-04607-z

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