Parent-reported shared decision making: Autism spectrum disorder and other neurodevelopmental disorders

Journal of Developmental and Behavioral Pediatrics

Volumn 37, Issue 1, 2016, Pages 20-32

  Hubner, Lauren M ^a   Feldman, Heidi M ^a   Huffman, Lynne C ^a  

^a LUCILE PACKARD CHILDREN S HOSPITAL   (United States)

Author keywords

Autism; Children with special health care needs; Medical home; Shared decision making

Indexed keywords

ADOLESCENT; AUTISM SPECTRUM DISORDER; CEREBRAL PALSY; CHILD; COMORBIDITY; DECISION MAKING; DOWN SYNDROME; FEMALE; HEALTH CARE SURVEY; HUMAN; MALE; PARENT; PATIENT CARE; PRESCHOOL CHILD; STATISTICS AND NUMERICAL DATA;

ADOLESCENT; AUTISM SPECTRUM DISORDER; CEREBRAL PALSY; CHILD; CHILD, PRESCHOOL; COMORBIDITY; DECISION MAKING; DOWN SYNDROME; FEMALE; HEALTH CARE SURVEYS; HUMANS; MALE; PARENTS; PATIENT-CENTERED CARE;

EID: 84952324547     PISSN: 0196206X     EISSN: 15367312     Source Type: Journal    
DOI: 10.1097/DBP.0000000000000242     Document Type: Article

References (53)

1. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med. 1997;44:681-692.
2. Fiks AG, Localio AR, Alessandrini EA, et al. Shared decisionmaking in pediatrics: a national perspective. Pediatrics. 2010; 126:306-314.
3. Strull WM, Lo B, Charles G. Do patients want to participate in medical decision making? JAMA. 1984;252:2990-2994.
4. Golnik A, Maccabee-Ryaboy N, Scal P, et al. Shared decision making: improving care for children with autism. Intellect Dev Disabil. 2012;50:322-331.
5. Merenstein D, Diener-West M, Krist A, et al. An assessment of the shared-decision model in parents of children with acute otitis media. Pediatrics. 2005;116:1267-1275.
6. Wilson SR, Strub P, Buist AS, et al. Shared treatment decision making improves adherence and outcomes in poorly controlled asthma. Am J Respir Crit Care Med. 2010;181:566-577.
7. Greenfield S, Kaplan SH, Ware JE Jr, et al. Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med. 1988;3:448-457.
8. Lipstein EA, Brinkman WB, Britto MT. What is known about parents' treatment decisions? A narrative review of pediatric decision making. Med Decis Making. 2012;32:246-258.
9. Frosch DL, Kaplan RM. Shared decision making in clinical medicine: past research and future directions. Am J Prev Med. 1999;17:285-294.
10. Whitney SN. A new model of medical decisions: exploring the limits of shared decision making. Med Decis Making. 2003;23: 275-280.
11. Institute of Medicine, Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001. Available at: https://iom.nationalacademies.org/Reports/2001/Crossing-the-Quality-Chasm-A-New-Health-System-for-the-21st-Century. aspx. Accessed November 23, 2015.
12. Patient Protection and Affordable Care Act. Public Law: 111-148. Washington, DC: United States of America 111th Congress; 2010.
13. Smalley LP, Kenney MK, Denboba D, et al. Family perceptions of shared decision-making with health care providers: results of the National Survey of Children with Special Health Care Needs, 2009- 2010. Matern Child Health J. 2014;18:1316-1327.
14. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics. 1998;102:137-140.
15. US Department of Health and Human Services Health Resources and Service Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2009-2010. Rockville, Maryland: U.S. Department of Health and Human Services; 2013.
16. Vohra R, Madhavan S, Sambamoorthi U, et al. Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism. 2014;10:815-826.
17. Zuckerman KE, Lindly OJ, Bethell CD, et al. Family impacts among children with autism spectrum disorder: the role of health care quality. Acad Pediatr. 2014;14:398-407.
18. Carbone PS, Murphy NA, Norlin C, et al. Parent and pediatrician perspectives regarding the primary care of children with autism spectrum disorders. J Autism Dev Disord. 2013;43:964-972.
19. Myers SM, Johnson CP. Management of children with autism spectrum disorders. Pediatrics. 2007;120:1162-1182.
20. Novak I, McIntyre S, Morgan C, et al. A systematic review of interventions for children with cerebral palsy: state of the evidence. Dev Med Child Neurol. 2013;55:885-910.
21. Bull MJ. Health supervision for children with Down syndrome. Pediatrics. 2011;128:393-406.
22. Kogan MD, Strickland BB, Blumberg SJ, et al. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics. 2008;122:e1149-e1158.
23. Liptak GS, Orlando M, Yingling JT, et al. Satisfaction with primary health care received by families of children with developmental disabilities. J Pediatr Health Care. 2006;20:245-252.
24. Brachlow AE, Ness KK, McPheeters ML, et al. Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health. Arch Pediatr Adolesc Med. 2007;161: 399-405.
25. Golnik A, Ireland M, Borowsky IW. Medical homes for children with autism: a physician survey. Pediatrics. 2009;123:966-971.
26. Heidgerken AD, Geffken G, Modi A, et al. A survey of autism knowledge in a health care setting. J Autism Dev Disord. 2005;35: 323-330.
27. Medical Home Initiatives for Children With Special Needs Project Advisory Committee, American Academy of Pediatrics. The medical home. Pediatrics. 2002;110:184-186.
28. Knapp C, Woodworth L, Fernandez-Baca D, et al. Factors associated with a patient-centered medical home among children with behavioral health conditions. Matern Child Health J. 2013;17:1658-1664.
29. Strickland B, McPherson M, Weissman G, et al. Access to the medical home: results of the National Survey of Children with Special Health Care Needs. Pediatrics. 2004;113:1485-1492.
30. Cheak-Zamora NC, Farmer JE. The impact of the medical home on access to care for children with autism spectrum disorders. J Autism Dev Disord. 2015;45:636-644.
31. Nageswaran S, Silver EJ, Stein RE. Association of functional limitation with health care needs and experiences of children with special health care needs. Pediatrics. 2008;121:994-1001.
32. Boulet SL, Boyle CA, Schieve LA. Health care use and health and functional impact of developmental disabilities among US children, 1997-2005. Arch Pediatr Adolesc Med. 2009;163:19-26.
33. Centers for Disease Control and Prevention, National Center for Health Statistics, State and Local Area Integrated Telephone Survey. 2009-2010 National Survey of Children with Special Health Care Needs Frequently Asked Questions; Atlanta, GA: Centers for Disease Control and Prevention; December 2011. Available at http://www.cdc.gov/nchs/slaits/cshcn.htm. Accessed January 10, 2014.
34. Bethell CD, Read D, Stein RE, et al. Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambul Pediatr. 2002;2:38-48.
35. Child and Adolescent Health Measurement Initiative (CAHMI). 2009-2010 NS-CSHCN Indicator and Outcome Variables SPSS Codebook, Version
36. Portland, OR: Data Resource Center for Child and Adolescent Health; 2012. Available at: www. childhealthdata.org. Accessed December 5, 2013.
37. Butler AM, Elkins S, Kowalkowski M, et al. Shared decision making among parents of children with mental health conditions compared to children with chronic physical conditions. Matern Child Health. 2015;19:410-418.
38. Moses LE, Emerson JD, Hosseini H. Analyzing data from ordered categories. N Engl J Med. 1984;311:442-448.
39. Strickland BB, Singh GK, Kogan MD, et al. Access to the medical home: new findings from the 2005-2006 National Survey of Children with Special Health Care Needs. Pediatrics. 2009;123: e996-e1004.
40. Golnik A, Scal P, Wey A, et al. Autism-specific primary care medical home intervention. J Autism Dev Disord. 2012;42:1087-1093.
41. Fiks AG, Mayne S, Localio AR, et al. Shared decision making and behavioral impairment: a national study among children with special health care needs. BMC Pediatr. 2012;12:153.
42. Chiri G, Warfield ME. Unmet need and problems accessing core health care services for children with autism spectrum disorder. Matern Child Health J. 2012;16:1081-1091.
43. Zablotsky B, Pringle BA, Colpe LJ, et al. Service and treatment use among children diagnosed with autism spectrum disorders. J Dev Behav Pediatr. 2015;36:98-105.
44. Carbone PS, Behl DD, Azor V, et al. The medical home for children with autism spectrum disorders: parent and pediatrician perspectives. J Autism Dev Disord. 2010;40:317-324.
45. Huffman LC, Sutcliffe TL, Tanner IS, et al. Management of symptoms in children with autism spectrum disorders: a comprehensive review of pharmacologic and complementaryalternative medicine treatments. J Dev Behav Pediatr. 2011;32: 56-68.
46. Hanson E, Kalish LA, Bunce E, et al. Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder. J Autism Dev Disord. 2007;37:628-636.
47. Akins RS, Krakowiak P, Angkustsiri K, et al. Utilization patterns of conventional and complementary/alternative treatments in children with autism spectrum disorders and developmental disabilities in a population-based study. J Dev Behav Pediatr. 2014; 35:1-10.
48. Miller F. Cerebral Palsy. Etiology, Epidemiology, Pathology, and Diagnosis. Ch 2. 1st ed. New York, NY: Springer-Verlag; 2005: 27-50.
49. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators; Centers for Disease Control and Prevention. Prevalence of autism spectrum disorders - Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR Surveill Summ. 2012;61:1-19.
50. McIntyre S, Morgan C, Walker K, et al. Cerebral palsy - don't delay. Dev Disabil Res Rev. 2011;17:114-129.
51. Schieve LA, Rice C, Yeargin-Allsopp M, et al. Parent-reported prevalence of autism spectrum disorders in US-born children: an assessment of changes within birth cohorts from the 2003 to the 2007 National Survey of Children's Health. Matern Child Health J. 2012;16(suppl 1):S151-S157.
52. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37:126-139.
53. Owens JA, Spirito A, McGuinn M. The Children's Sleep Habits Questionnaire (CSHQ): psychometric properties of a survey instrument for school-aged children. Sleep. 2000;23:1043-1051.