Điều trị Vấn Đề Giấc Ngủ ở Trẻ Em có Chứng Rối Loạn Phổ Tự Kỷ và Các Tác Động Lan Tỏa đến Người Chăm Sóc

Journal of Autism and Developmental Disorders - Tập 45 - Trang 3613-3623 - 2015
J. Mick Tilford1,2, Nalin Payakachat2, Karen A. Kuhlthau3,4, Jeffrey M. Pyne5, Erica Kovacs6, Jayne Bellando7, D. Keith Williams8, Werner B. F. Brouwer9, Richard E. Frye7
1Department of Health Policy and Management, University of Arkansas for Medical Sciences, Little Rock, USA
2Division of Pharmaceutical Evaluation and Policy, University of Arkansas for Medical Sciences, Little Rock, USA
3Department of Pediatrics, Harvard Medical School, Boston, USA
4Center for Adolescent Health Policy, Massachusetts General Hospital, Boston, USA
5Center for Mental Healthcare and Outcomes Research, Central Arkansas Veterans Healthcare System and Psychiatric Research Institute, University of Arkansas for Medical Sciences, Little Rock, USA
6Department of Psychiatry, Columbia University Medical Center, New York, USA
7Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, USA
8Department of Biostatistics, University of Arkansas for Medical Sciences, Little Rock, USA
9Department of Health Policy and Management, Erasmus University, Rotterdam, The Netherlands

Tóm tắt

Các vấn đề về giấc ngủ ở trẻ em mắc chứng rối loạn phổ tự kỷ (ASD) thường bị đánh giá không đúng mức và chưa được điều trị hiệu quả. Việc xác định giá trị điều trị tính đến các tác động sức khỏe đến thành viên gia đình (tác động lan tỏa) có thể cải thiện sự hiệu quả về chi phí của các can thiệp nhằm cải thiện thói quen ngủ của trẻ. Một nghiên cứu đoàn hệ triển vọng (N = 224) đã được thực hiện với dữ liệu từ đăng ký và khảo sát qua bưu điện do người chăm sóc chính hoàn thành. Chúng tôi đã tính toán các kết quả về chất lượng cuộc sống cho trẻ và người chăm sóc chính liên quan đến các phương pháp điều trị cải thiện giấc ngủ cho trẻ dựa trên các thử nghiệm lâm sàng trước đó. Các tác động điều trị dự đoán cho melatonin và các can thiệp hành vi tương tự về độ lớn đối với trẻ và đối với người chăm sóc. Việc tính đến các tác động lan tỏa của người chăm sóc liên quan đến các phương pháp điều trị cho trẻ có ASD làm tăng lợi ích điều trị và cải thiện các chỉ số hiệu quả về chi phí.

Từ khóa

#rối loạn phổ tự kỷ #giấc ngủ #người chăm sóc #can thiệp hành vi #melatonin #hiệu quả chi phí

Tài liệu tham khảo

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev). Washington, DC: American Psychiatric Association. Arnold, L. E., Vitiello, B., McDougle, C., Scahill, L., Shah, B., Gonzalez, N. M., et al. (2003). Parent-defined target symptoms respond to risperidone in RUPP autism study: customer approach to clinical trials. Journal of the American Academy of Child and Adolescent Psychiatry, 42, 1443–1450. Basu, A., Dale, W., Elstein, A., & Meltzer, D. (2010). A Time Tradeoff Method for Eliciting Partner’s Quality of Life due to Patient’s Health States in Prostate Cancer. Medical Decision Making, 30, 355–365. Basu, A., & Manca, A. (2012). Regression estimators for generic health-related quality of life and quality-adjusted life years. Medical Decision Making, 32, 56–69. Basu, A., & Meltzer, D. (2005). Implications of spillover effects within the family for medical cost-effectiveness analysis. Journal of Health Economics, 24, 751–773. Bayley, N. (2006). Bayley scales of infant and toddler development–third edition. San Antonio, TX: Harcourt Assessment. Brazier, J. E., & Roberts, J. (2004). The estimation of a preference-based measure of health from the SF-12. Medical Care, 42, 851–859. Brazier, J. E., Yang, Y., Tsuchiya, A., & Rowen, D. L. (2010). A review of studies mapping (or cross walking) non-preference based measures of health to generic preference-based measures. The European Journal of Health Economics, 11, 215–225. Brouwer, W., van Exel, N., & Tilford, J. (2009). Incorporating caregiver and family effects in economic evaluations of child health. In W. J. Ungar (Ed.), Economic evaluation in child health (pp. 55–76). New York: Oxford University Press. Brouwer, W. B. F., van Exel, N. J. A., van Gorp, B., & Redekop, W. K. (2006). The CarerQol instrument: A new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Quality of Life Research, 15, 1005–1021. Bureau of Labor Statistics, U. S. D. o. L. (2014). American time use survey—2013 results (Rep. No. USDL-14-1137). http://www.bls.gov/news.release/pdf/atus.pdf Cortesi, F., Giannotti, F., Sebastiani, T., Panunzi, S., & Valente, D. (2012). Controlled-release melatonin, singly and combined with cognitive behavioural therapy, for persistent insomnia in children with autism spectrum disorders: A randomized placebo-controlled trial. Journal of Sleep Research, 21, 700–709. Coury, D. L., Ashwood, P., Fasano, A., Fuchs, G., Geraghty, M., Kaul, A., et al. (2012). Gastrointestinal conditions in children with autism spectrum disorder: Developing a research agenda. Pediatrics, 130, S160–S168. Feeny, D., Furlong, W., Torrance, G. W., Goldsmith, C. H., Zhu, Z., DePauw, S., et al. (2002). Multiattribute and single-attribute utility functions for the Health Utilities Index Mark 3 system. Medical Care, 40, 113–128. Glasgow, R. E., Doria-Rose, V. P., Khoury, M. J., Elzarrad, M., Brown, M. L., & Stange, K. C. (2013). Comparative effectiveness research in cancer: What has been funded and what knowledge gaps remain? Journal of the National Cancer Institute, 105, 766–773. Glasgow, R. E., & Emmons, K. M. (2007). How can we increase translation of research into practice? Types of evidence needed. Annual Review of Public Health, 28, 413–433. Glasgow, R. E., & Steiner, J. F. (2012). Comparative effectiveness research to accelerate translation: Recommendations for an emerging field of science. In R. C. Brownson, G. A. Colditz, & E. K. Proctor (Eds.), Dissemination and implementation research in health (pp. 72–92). New York, NY: Oxford University Press. Gold, M., Siegel, J., Russell, L., & Weinstein, M. (1996). Cost effectiveness in health and medicine. New York, NY: Oxford University Press. Goldman, S. E., McGrew, S., Johnson, K. P., Richdale, A. L., Clemons, T., & Malow, B. A. (2011). Sleep is associated with problem behaviors in children and adolescents with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 1223–1229. Hoefman, R. J., van, E. J., Rose, J. M., van de Wetering, E. J., & Brouwer, W. B. (2014). A discrete choice experiment to obtain a tariff for valuing informal care situations measured with the CarerQol instrument. Medical Decision Making, 34, 84–96. Horsman, J., Furlong, W., Feeny, D., & Torrance, G. (2003). The Health Utilities Index (HUI(R)): Concepts, measurement properties and applications. Health and Quality of Life Outcomes, 1, 54. Johnson, J. A., Coons, S. J., Ergo, A., & Szava-Kovats, G. (1998). Valuation of EuroQOL (EQ-5D) health states in an adult US sample. Pharmacoeconomics, 13, 421–433. Kaplan, R., & Anderson, J. (1996). The general health policy model: An integrated approach. In B. Spiker (Ed.), Quality of life and pharmacoeconomics in clinical trials (2nd ed., pp. 309–322). Philadelphia, PA: Lippincott-Raven Publishers. Kelly, A., Haddix, A., Scanlon, K., Helmick, C., & Mulinare, J. (1996). Cost-effectiveness of strategies to prevent neural tube defects. In J. E. Siegel, L. B. Russell, M. C. Weinstein, & M. R. Gold (Eds.), Cost-effectiveness in health and medicine (pp. 312–349). New York, Oxford: Oxford University Press. Krakowiak, P., Goodlin-Jones, B., Hertz-Picciotto, I., Croen, L. A., & Hansen, R. L. (2008). Sleep problems in children with autism spectrum disorders, developmental delays, and typical development: A population-based study. Journal of Sleep Researh, 17, 197–206. Levy, S. E., Giarelli, E., Lee, L. C., Schieve, L. A., Kirby, R. S., Cunniff, C., et al. (2010). Autism spectrum disorder and co-occurring developmental, psychiatric, and medical conditions among children in multiple populations of the United States. Journal of Developmental and Behavioral Pediatrics, 31, 267–275. Lichstein, K. L., Stone, K. C., Donaldson, J., Nau, S. D., Soeffing, J. P., Murray, D., et al. (2006). Actigraphy validation with insomnia. Sleep, 29, 232–239. Malow, B., Adkins, K., McGrew, S., Wang, L., Goldman, S., Fawkes, D., et al. (2012a). Melatonin for sleep in children with autism: A controlled trial examining dose, tolerability, and outcomes. Journal of Autism and Developmental Disorders, 42, 1729–1737. Malow, B. A., Adkins, K. W., Reynolds, A., Weiss, S. K., Loh, A., Fawkes, D., et al. (2014). Parent-based sleep education for children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44, 216–228. Malow, B. A., Byars, K., Johnson, K., Weiss, S., Bernal, P., Goldman, S. E., et al. (2012b). A practice pathway for the identification, evaluation, and management of insomnia in children and adolescents with autism spectrum disorders. Pediatrics, 130, S106–S124. Meltzer, D., & Smith, P. (2012). Theoretical issues relevant to the economic evaluation of health technologies. In M. V. Pauly, T. G. McGuire, & P. P. Barros (Eds.), Handbook of health economics (Vol. 2, pp. 433–470). Oxford, UK: North Holland. Mullen, E. (1997). Mullen Scales of early learning. Los Angeles, CA: Western Psychological Services. Owens, J. A., Spirito, A., & McGuinn, M. (2000). The Children’s Sleep Habits Questionnaire (CSHQ): Psychometric properties of a survey instrument for school-aged children. Sleep, 23, 1043–1051. Payakachat, N., Tilford, J. M., Kovacs, E., & Kuhlthau, K. (2012). Autism spectrum disorders: A review of measures for clinical, health services and cost-effectiveness applications. Expert Review of Pharmacoeconomics & Outcomes Research, 12, 485–503. Payakachat, N., Tilford, J. M., Kuhlthau, K. A., van Exel, N. J., Kovacs, E., Bellando, J., et al. (2014). Predicting health utilities for children with autism spectrum disorders. Autism Research, 7, 649–663. Petrou, S., & Kupek, E. (2009). Estimating preference-based Health Utilities Index Mark 3 utility scores for childhood conditions in England and Scotland. Medical Decision Making, 29, 291–303. Pregibon, D. (1980). Goodness of link tests for generalilzed linear models. Applied Statistics, 29, 15–24. Prosser, L. A., Hammitt, J. K., & Keren, R. (2007). Measuring health preferences for use in cost-utility and cost-benefit analyses of interventions in children: Theoretical and methodological considerations. Pharmacoeconomics, 25, 713–726. Prosser, L. A., Lamarand, K., Gebremariam, A., & Wittenberg, E. (2015). Measuring family HRQoL spillover effects using direct health utility assessment. Medical Decision Making, 35, 81–93. Pullenayegum, E. M., Tarride, J. E., Xie, F., Goeree, R., Gerstein, H. C., & O’Reilly, D. (2010). Analysis of health utility data when some subjects attain the upper bound of 1: Are Tobit and CLAD models appropriate? Value in Health, 13, 487–494. Pyne, J. M., Sieber, W. J., David, K., Kaplan, R. M., Hyman, R. M., & Keith, W. D. (2003). Use of the quality of well-being self-administered version (QWB-SA) in assessing health-related quality of life in depressed patients. Journal of Affective Disorders, 76, 237–247. Radloff, L. S. (1977). The CES-D Scale: A self-report Depression Scale for research in the general population. Applied Psychological Measurement, 1, 385–401. Ramsey, J. (1969). Tests for specification error in classical linear least squares regression analysis. Journal of the Royal Statisical Society Series B, 31, 350–371. Reed, H. E., McGrew, S. G., Artibee, K., Surdkya, K., Goldman, S. E., Frank, K., et al. (2009). Parent-based sleep education workshops in autism. Journal of Child Neurology, 24, 936–945. Reynolds, A. M., & Malow, B. A. (2011). Sleep and autism spectrum disorders. Pediatric Clinic of North America, 58, 685–698. Rossignol, D. A., & Frye, R. E. (2011). Melatonin in autism spectrum disorders: A systematic review and meta-analysis. Developmental Medicine and Child Neurology, 53, 783–792. Shumway, S., Farmer, C., Thurm, A., Joseph, L., Black, D., & Golden, C. (2012). The ADOS calibrated severity score: Relationship to phenotypic variables and stability over time. Autism Research, 5, 267–276. Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of American Academy of Child Adolescent Psychiatry, 47, 921–929. Smith-Olinde, L., Grosse, S. D., Olinde, F., Martin, P. F., & Tilford, J. M. (2008). Health state preference scores for children with permanent childhood hearing loss: A comparative analysis of the QWB and HUI3. Quality of Life Research, 17, 943–953. Swanson, L. M., Arnedt, J. T., Rosekind, M. R., Belenky, G., Balkin, T. J., & Drake, C. (2011). Sleep disorders and work performance: Findings from the 2008 National Sleep Foundation Sleep in America poll. Journal of Sleep Research, 20, 487–494. The National Institute for Health and Care Excellence. (2013). Guide to the methods of technology appraisal 2013 London. England: The National Institute for Health and Care Excellence. Tilford, J. M. & Payakachat, N. (2014). Progress in measuring family spillover effects for economic evaluations. Expert Review of Pharmacoeconomics & Outcomes Research, 16, 1–4. Tilford, J. M., Payakachat, N., Kovacs, E., Pyne, J. M., Brouwer, W., Nick, T. G., et al. (2012). Preference-based health-related quality-of-life outcomes in children with autism spectrum disorders: A comparison of generic instruments. Pharmacoeconomics, 30, 661–679. Ungar, W., & Gerber, A. (2010). The uniqueness of child health and challenges to measuring costs and consequences. In W. Ungar (Ed.), Economic evaluation in child health. New York: Oxford University Press. Weinstein, M., Siegel, J., Gold, M., Kamlet, M., & Russell, L. (1996). Recommendations of the panel on cost-effectiveness in health and medicine. The Journal of the American Medical Association, 276, 1253–1258. Wittenberg, E., & Prosser, L. (2013). Disutility of illness for caregivers and families: A systematic review of the literature. Pharmacoeconomics, 31, 489–500. Yang, Y., Brazier, J., & Tsuchiya, A. (2014). Effect of adding a sleep dimension to the EQ-5D descriptive system: A “bolt-on” experiment. Medical Decision Making, 34, 42–53. Zablotsky, B., Anderson, C., & Law, P. (2013). The association between child autism symptomatology, maternal quality of life, and risk for depression. Journal of Autism and Developmental Disorders, 43, 1946–1955.