Promoting Shared Decision Making to strengthen outcome of young children with Autism Spectrum Disorders: The role of staff competence

Research in Developmental Disabilities

Volumn 38, Issue 1, 2015, Pages 48-63

  Strauss, Kristin ^a   Benvenuto, Arianna ^b   Battan, Barbara ^b   Siracusano, Martina ^b   Terribili, Monica ^b   Curatolo, Paolo ^b   Fava, Leonardo ^a  

^a Umbrella Association for Treatment and Research in Autism and Related Conditions   (Italy)

^b UNIVERSITY OF ROME TOR VERGATA   (Italy)

Author keywords

Autism Spectrum Disorders; Early intervention; Shared Decision Making; Staff training; Treatment outcome

Indexed keywords

ADAPTIVE BEHAVIOR; ARTICLE; AUTISM; BEHAVIOR CHANGE; BEHAVIOR THERAPY; CHILD; CHILD PARENT RELATION; CLINICAL ARTICLE; COMMUNICATION SKILL; COMPETENCE; CONTROLLED STUDY; DECISION MAKING; DISEASE SEVERITY; EARLY INTENSIVE BEHAVIOR INTERVENTION; EARLY INTERVENTION; EXPLORATORY RESEARCH; FEMALE; HUMAN; INTERMETHOD COMPARISON; MALE; OUTCOME ASSESSMENT; PARENTAL ATTITUDE; PARENTAL STRESS; PROFESSIONAL COMPETENCE; SHARED DECISION MAKING; STAFF COMPETENCE; TREATMENT RESPONSE; CHILD DEVELOPMENT DISORDERS, PERVASIVE; CLINICAL COMPETENCE; EARLY CHILDHOOD INTERVENTION; EDUCATION; PARENT; PERSONNEL MANAGEMENT; PRESCHOOL CHILD; PROCEDURES; TREATMENT OUTCOME;

BEHAVIOR THERAPY; CHILD; CHILD DEVELOPMENT DISORDERS, PERVASIVE; CHILD, PRESCHOOL; CLINICAL COMPETENCE; DECISION MAKING; EARLY INTERVENTION (EDUCATION); FEMALE; HUMANS; MALE; PARENTS; STAFF DEVELOPMENT; TREATMENT OUTCOME;

EID: 84937108828     PISSN: 08914222     EISSN: 18733379     Source Type: Journal    
DOI: 10.1016/j.ridd.2014.11.016     Document Type: Article

References (89)

1. Abadin R.R. Parenting stress index. Professional manual 1999, Psychological Assessment Resources. Aschenbach, Odessa, FL. 3rd ed.
2. American Psychiatric Association Diagnostic and statistical manual of mental disorders 2013, American Psychiatric Publishing, Arlington, VA. 5th ed.
3. Benvenuto A., Moavero R., Alessandrelli R., Manzi B., Curatolo P. Syndromic autism: Causes and pathogenic pathways. World Journal of Pediatrics 2009, 5(3):169-176.
4. Benvenuto A., Battan B., Benassi F., Emberti Gialloretti L., Curatolo P. Effectiveness of community-based treatment on clinical outcome in children with autism spectrum disorders: An Italian prospective study. Developmental Neurorehabilitation 2014, 10.3109/17518423.2013.864716.
5. Brookman-Frazee L., Koegel R.L. Using parent/clinician partnerships in parent education programs for children with autism. Journal of Positive Behavior Interventions 2004, 6(4):195-213.
6. Brown H.K., Ouelette-Kuntz H., Hunter D., Kelley E., Cobigo V., Lam M. Beyond an autism diagnosis: Children's functional independence and parents' unmet needs. Journal of Autism and Developmental Disorders 2011, 41:1291-1302.
7. 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). Social Science and Medicine 1997, 44:681-692.
8. Charles C., Gafni A., Whelan T. Decision-making in the physician-patient encounter: Revisiting the shared treatment decision-making model. Social Science Medicine 1999, 49(5):651-661.
9. Charles C., Whelan T., Gafni A. What do we mean by partnership in making decisions about treatment?. BMJ 1999, 319:780-782.
10. Charman T., Jones C.R.G., Pickles A., Simonoff E., Baird G., Happe F. Defining the cognitive phenotype of autism. Brain Research 2011, 1380:10-21.
11. Chiri G., Warfield M.E. Unmet need and problems assessing core health care services for children with autism spectrum disorders. Mental and Child Health Journal 2012, 16(5):1081-1091.
12. Coonrod E., Marcus L. Psychoeducational profile-revised (PEP-3). Encyclopedia of autism spectrum disorders 2013, 2439-2444. Springer, New York. F.R. Volkmar (Ed.).
13. Deber R.B., Kraetschmer N., Irvine J. What role do patients wish to play in treatment decision making?. Archives of Internal Medicine 1996, 156:1414-1420.
14. Eapen V. Genetic basis of Autism: Is there a way forward?. Current Opinion in Psychiatry 2011, 24:226-236.
15. Eikeseth S. Outcome of comprehensive psycho-educational interventions for young children with autism. Research in Developmental Disabilities 2009, 30:158-178.
16. Eikeseth S., Hayward D., Gale C., Gitlesen J.P., Eldevik S. Intensity of supervision and outcome for preschool aged children receiving early and intensive behavioral interventions: A preliminary study. Research in Autism Spectrum Disorders 2009, 3(1):67-73.
17. Eldevik S., Hastings R.P., Hughes C., Jahr E., Eikeseth S., Cross S. Meta-analysis of early intensive behavioral intervention for children with autism. Journal of Clinical Child and Adolescent Psychology 2009, 38:439-450.
18. Eldevik S., Hastings R.P., Hughes C., Jahr E., Eikeseth S., Cross S. Using participant data to extend the evidence base for intensive behavioral intervention for children with autism. American Journal of Intellectual and Developmental Disability 2010, 115:381-405.
19. Eldevik S., Hastings R.P., Jahr E., Hughes J.C. Outcomes of behavioral intervention for children with autism in mainstream pre-school settings. Journal of Autism and Developmental Disorders 2012, 42(2):210-220.
20. Elwyn G., Edwards A., Kinnersley P., Grol R. Shared decision making and the concept of equipoise: The competence of involving patients in healthcare choices. British Journal of General Practice 2000, 50:892-897.
21. Elwyn G., Edwards A., Wensing M., Hood K., Atwell C., Grol R. Shared decision making: Developing the OPTION scale for measuring patient involvement. Quality and Safety in Health Care 2003, 12:93-99.
22. Elwyn G., Edwards A., Hood K., Robling M., Atwell C., Russell I., et al. Achieving involvement: Process outcomes from a cluster randomized trial of shared decision making skill development and use of risk communication aids in general practice. Family Practice 2004, 21:337-346.
23. Elwyn G., Hutchings H., Edwars A., Rapport F., Wensing M., Cheung W.Y., et al. The OPTION scale: Measuring the extent that clinicians involve patients in decision-making task. Health Expectations 2005, 8:34-42.
24. Fava L., Strauss K. Cross-setting complementary staff- and parent-mediated early intensive behavioral intervention for young children with autism: A research-based comprehensive approach. Research in Autism Spectrum Disorders 2011, 5:512-522.
25. Fava L., Strauss K. Response to early intensive behavioral intervention for autism - An umbrella approach to issues critical to treatment individualization. International Journal of Developmental Neuroscience 2014, 10.1016/j.ijdevneu.2014.05.004.
26. Fava L., Strauss K., Valeri G., D'Elia L., Arima S., Vicari S. The effectiveness of a cross-setting complementary staff-and parent-mediated early intensive behavioral intervention for young children with ASD. Research in Autism Spectrum Disorders 2011, 5:1479-1492.
27. Fombonne E. The prevalence of autism. JAMA: The Journal of the American Medical Association 2003, 289(1):87-89.
28. Fombonne E. Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders 2003, 33(4):365-382.
29. Fombonne E. Epidemiology of pervasive developmental disorders. Pediatric Research 2009, 65(6):591-598.
30. Gadow K.D., DeVincent C.J., Pomeroy J., Azizian A. Psychiatric symptoms in preschool children with PDD in clinic and comparison samples. Journal of Autism and Developmental Disorders 2004, 34:379-393.
31. Goossensen A., Zijlstra P., Koopmanschap M. Measuring shared decision making process in psychiatry: Skills versus patient satisfaction. Patient Education and Counseling 2007, 67(1):50-56.
32. Goss C., Moretti F., Mazzi M.A., Del Piccolo L., Rimondini M., Zimmermann C. Involving patients in decisions during psychiatric consultations. British Journal of Psychiatry 2008, 193:416-421.
33. Guimong A.B., Wilcox M.J., Lamorey S.G. The early intervention parenting self-efficacy scale (EIPSES) scale construction and initial psychometric evidence. Journal of Early Intervention 2008, 30(4):295-320.
34. Hastings R.P., Johnson E. Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders 2001, 31:327-336.
35. Hastings R.P., Symes M.D. Early intensive behavioral intervention for children with autism: Parental therapeutic self-efficacy. Research in Developmental Disabilities 2002, 23:332-341.
36. Hayward D., Eikeseth S., Gale C., Morgan S. Assessing progress during treatment for young children with autism receiving intensive behavioural interventions. Autism 2009, 13(6):613-633.
37. Hedges L., Olkin I. Statistical models for meta-analysis 1985, Academic Press, New York.
38. Hedges L.V., Shymansky J.A., Woodworth G. A practical guide to modern methods of meta-analysis. ERIC 1989, (Document Reproduction Service No. ED309952).
39. Herbert M.R., Russo J.P., Yang S., Roohi J., Blaxill M., Kahler S.G., et al. NeuroToxicology 2006, 27:671-684.
40. Howlin P., Magiati I., Charman T. Systematic review of early intensive behavioral interventions for children with autism. American Journal of Intellectual and Developmental Disabilities 2009, 114:23-41.
41. Ingersoll B., Schreibman L., Stahmer A. Brief report: Differential treatment outcomes for children with autistic spectrum disorder based on level of peer social avoidance. Journal of Autism and Developmental Disorders 2001, 31(3):343-349.
42. Isaksen J., Diseth T.H., Schjolberg S., Skjeldal O-.H. Autism spectrum disorders - Are they really epidemic?. European Journal of Pediatric Neurology 2013, 17:327-333.
43. Jacobson N.S., Truax P. Clinical significance: A statistical approach to defining meaningful change in psychotherapy research. Journal of Consulting and Clinical Psychology 1991, 59(1):12-19.
44. Joosten E.A.G., DeFuentes-Merillas L., de Weert G.H., Sensky T., van der Staak C.P.F., de Jong C.A.J. Systematic review of the effects of shared decision-making on patient satisfaction, treatment adherence and health status. Psychotherapy and Psychosomatics 2014, 77:219-226.
45. Jordan J.S., Ellis S., Chambers R. Defining shared decision making and concordance: Are they one and the same?. Postgraduate Medical Journal 2002, 78:383-384.
46. Joseph-Williams N., Edwards A., Elwyn G. Power imbalance prevents shared decision making. BMJ 2014, 10.1136/bmj.g3178.
47. Karst J.S., Van Hecke A.V. Parent and family impact of autism spectrum disorders: A review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review 2012, 15:247-277.
48. Kasari C. Assessing change in early intervention programs for children with autism. Journal of Autism and Developmental Disorders 2002, 32:447-461.
49. Kasari C., Paparella T., Freeman S., Jahromi L.B. Language outcome in autism: Randomized comparison of joint attention and play interventions. Journal of Consulting and Clinical Psychology 2008, 76(1):125-137.
50. Kasari C., Gulsrud A., Freeman S., Paparella T., Hellemann G. Longitudinal follow-up of children with autism receiving targeted interventions on joint attention and play. Journal of the American Academy of Child and Adolescent Psychiatry 2012, 51(5):487-495.
51. Kiesler D.J., Auerbach S.M. Optimal matches of patient preferences for information, decision-making and interpersonal behavior: Evidence, models and interventions. Patient Education and Counseling 2006, 61:319-341.
52. Lecavalier L. Behavioral and emotional problems in young people with pervasive developmental disorders: Relative prevalence, effects of subject characteristics, and empirical classification. Journal of Autism and Developmental Disorders 2006, 36:1101-1114.
53. Leyfer O.T., Folstein S.E., Bacalman S., Davis N.O., Dinh E., Morgan J., et al. Comorbid psychiatric disorders in children with autism: Interview development and rates of disorder. Journal of Autism and Developmental Disorders 2006, 36:849-861.
54. Lipsey M.W., Wilson D.B. Practical meta-analysis 2001, Sage, Thousand Oaks, CA.
55. Lord C., Rutter M., LeCouteur A. Autism diagnostic interview-revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders 1994, 24:659-685.
56. Lord C., Rutter M., DiLavore P.C., Risi S., Gotham K., Bishop S.L. Autism diagnostic observation schedule, second edition (ADOS-2) manual (part 1): modules 1-4 2012, Western Psychological Services, Torrace, CA.
57. Love J.R., Carr J.E., Almason S.M., Petursdottir A.I. Early and intensive behavioral intervention for autism: A survey of clinical practices. Research in Autism Spectrum Disorders 2009, 3:421-428.
58. Magiati I., Moss J., Charman T., Howlin P. Patterns of change in children with Autism Spectrum Disorders who received community based comprehensive interventions in their pre-school years: A seven year follow-up study. Research in Autism Spectrum Disorders 2011, 5(3):1016-1027.
59. Makrygianni M.K., Reed P. A meta-analytic review of the effectiveness of behavioral early intervention programs for children with Autistic Spectrum Disorders. Research in Autism Spectrum Disorders 2010, 4:577-593.
60. Matson J.L., Smith K.R. Current status of intensive behavioral intervention for young children with autism and PDD-NOS. Research in Autism Spectrum Disorders 2008, 2:60-74.
61. McConachie H., Diggle T. Parent implemented early intervention for young children with autism spectrum disorders: A systematic review. Journal of Evaluation and Clinical Practice 2006, 13(1):120-129.
62. Moes D.R., Frea W.D. Contextualized behavioral support in early intervention for children with autism and their families. Journal of Autism and Developmental Disorders 2002, 32(6):519-533.
63. Newschaffer C.J.U., Croen L.A., Daniels J., Giarelli F., Grether J.K., Levy S.E., et al. The epidemiology of autism spectrum disorders. Annual Reviews in Public Health 2006, 28:235-258.
64. Osborne L.A., McHugh L., Sounders J., Reed P. Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders 2008, 38:1092-1103.
65. Pellerin M.A., Elwyn G., Rousseau M., Stacy D., Robitaille H., France L.F. Towards shared decision making: Using the OPTION scale to analyze resident-patient consultations in family practice. Academic Medicine 2011, 86(8):1010-1018.
66. Pituch K.A., Green V.A., Didden R., Lang R., O'Reilly M.F., Lancioni G.E., et al. Parent reported treatment priorities for children with autism spectrum disorders. Research in Autism Spectrum Disorders 2011, 5:135-143.
67. Portoghese C., Buttiglione M., De Giocomo A., Lafortezza M., Lecce A., Martinelli P., et al. Leiter-R versus developmental quotient for estimating cognitive function in preschoolers with pervasive developmental disorders. Neuropsychiatric Disease and Treatment 2010, 6:337-342.
68. Reichow B. Overview of meta-analyses on early behavioral intervention for young children with autism spectrum disorders. Journal of Autism and Developmental Disorders 2012, 42(4):512-520.
69. Reichow B., Wolery M. Comprehensive synthesis of early intensive behavioral interventions for young children with autism based on the UCLA Young Autism Project model. Journal of Autism and Developmental Disorders 2009, 39:23-41.
70. Rogers S.J., Vismara L.A. Evidence-based comprehensive treatments for early autism. Journal of Clinical Child & Adolescent Psychology 2008, 37(1):8-398.
71. Rutter M. Genetic studies of autism: from the 1970s into the Millennium. Journal of Abnormal Child Psychology 2000, 28(1):3-14.
72. Sallows G.O., Graupner T.D. Intensive behavioral treatment for children with autism: Four-year outcome and predictors. American Journal of Mental Retardation 2005, 110:417-438.
73. Schopler E., Lansing M.D., Reichler R.J., Marcus L.M. Psychoeducational profile: third edition (PEP-3) 2004, Pro-Ed, Austin, TX.
74. Sherer M.R., Schreibman L. Individual behavioral profiles and predictors of treatment effectiveness for children with autism. Journal of Consulting and Clinical Psychology 2005, 73(3):525-538.
75. Simonoff E., Pickles A., Charman T., Chandler S., Loucas T., Baird G. Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population derived sample. Journal of the American Academy of Child and Adolescent Psychiatry 2008, 47:921-929.
76. Solish A., Perry A. Parents' involvement in their children's behavioral intervention programs: Parent and therapist perspectives. Research in Autism Spectrum Disorders 2008, 2:728-738.
77. Sparrow S.S. Vineland adaptive behavior scales. Encyclopedia of clinical neuropsychology 2011, 2618-2621. Springer, New York. J.S. Kreutzer, J. DeLuca, B. Caplan (Eds.).
78. Sparrow S.S., Cicchetti D.V., Balla D.A. Vineland Adaptive Behavior Scales (2nd ed.) survey forms manual 2005, American Guidance Service, Circle Pines, MN.
79. Spreckley M., Boyd R. Efficacy of applied behavioral intervention in preschool children with autism for improving cognitive, language, and adaptive behavior: A systematic review and meta-analysis. Journal of Pediatrics 2009, 154:338-344.
80. Stahmer A.C., Schreibman L., Cunningham A.B. Towards a technology of treatment individualization for young children with autism spectrum disorders. Brain Research 2011, 1380:229-239.
81. Strauss K., Vicari S., Valeri G., D'Elia L., Arima S., Fava L. Parent inclusion in early intensive behavioral intervention: The influence of parental stress, parent treatment fidelity and parent-mediated generalization of behavior targets on child outcomes. Research in Developmental Disabilities 2012, 33:688-703.
82. Strauss K., Mancini F., the SPC group, Fava L. Parent inclusion in early intensive behavior interventions for young children with ASD: A synthesis of meta-analyses from 2009 to 2011. Research in Developmental Disabilities 2013, 34:2967-2985.
83. Turnbull A.P., Blue-Banning M., Turbiville V., Park J. From parent education to partnership education: A call for a transformed focus. Topics in Early Childhood Special Education 1999, 19(3):164-172.
84. Villa S., Micheli E., Villa L., Pastore V., Crippa A., Molteni M. Further empirical data on the psychoeducational profile-revised (PEP-R): Reliability and validation with the Vineland adaptive behavior scales. Journal of Autism and Developmental Disorders 2010, 40(3):334-341.
85. Viruès-Ortega J. Applied behavior analytic intervention for autism in early childhood: Meta-analysis, meta-regression and dose-response meta-analysis of multiple outcomes. Clinical Psychology Review 2010, 30:387-399.
86. Warren Z., McPheeters M.L., Sathe N., Foss-Feig J.H., Glasser A., Veenstra-VanderWeele J. A systematic review of early intensive interventions for autism spectrum disorder. Pediatrics 2011, 127:1303-1311.
87. Weiss M.J. Differential rates of skill acquisition and outcomes of early intensive behavioral intervention for autism. Behavioral Intervention 1999, 14:3-22.
88. Witwer A.N., Lecavalier L. Validity of autism spectrum disorder subtypes. Journal of Autism and Developmental Disorders 2008, 38:1611-1624.
89. Zachor D.A., Curatolo P. Recommendation for early diagnosis and intervention in autism spectrum disorders: An Italian-Israeli consensus conference. European Journal of Pediatric Neurology 2014, 18(2):107-118.