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Karen Kuhlthau, PhD
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Sociologist, Massachusetts General Hospital
Associate Professor, Harvard Medical School
Department: Pediatric Service
Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
Research Email: firstname.lastname@example.org
University of Michigan Medical School**, 1992, PhD
Keyword Medical Subject Headings:
Child Health Services
Health Services Needs and Demand
Publications (Pulled from Harvard Catalyst Profiles):
1. Kuhlthau K, Luff D, Delahaye J, Wong A, Yock T, Huang M, Park ER. Health-Related Quality of Life of Adolescent and Young Adult Survivors of Central Nervous System Tumors: Identifying Domains From a Survivor Perspective. J Pediatr Oncol Nurs. 2015 Nov; 32(6):385-93.
2. Yock TI, Bhat S, Szymonifka J, Yeap BY, Delahaye J, Donaldson SS, MacDonald SM, Pulsifer MB, Hill KS, DeLaney TF, Ebb D, Huang M, Tarbell NJ, Fisher PG, Kuhlthau KA. Quality of life outcomes in proton and photon treated pediatric brain tumor survivors. Radiother Oncol. 2014 Oct; 113(1):89-94.
3. Payakachat N, Tilford JM, Kuhlthau KA, van Exel NJ, Kovacs E, Bellando J, Pyne JM, Brouwer WB. Predicting health utilities for children with autism spectrum disorders. Autism Res. 2014 Dec; 7(6):649-63.
4. Kuhlthau KA, Mistry KB, Forrest CB, Dougherty D. Advancing the science of measurement in pediatric quality of care. Acad Pediatr. 2014 Sep-Oct; 14(5 Suppl):S1-3.
5. Hoefman R, Payakachat N, van Exel J, Kuhlthau K, Kovacs E, Pyne J, Tilford JM. Caring for a child with autism spectrum disorder and parents' quality of life: application of the CarerQol. J Autism Dev Disord. 2014 Aug; 44(8):1933-45.
6. Zuckerman KE, Lindly OJ, Bethell CD, Kuhlthau K. Family impacts among children with autism spectrum disorder: the role of health care quality. Acad Pediatr. 2014 Jul-Aug; 14(4):398-407.
7. Boudreau AA, Perrin JM, Goodman E, Kurowski D, Cooley WC, Kuhlthau K. Care coordination and unmet specialty care among children with special health care needs. Pediatrics. 2014 Jun; 133(6):1046-53.
8. Lavelle TA, Weinstein MC, Newhouse JP, Munir K, Kuhlthau KA, Prosser LA. Economic burden of childhood autism spectrum disorders. Pediatrics. 2014 Mar; 133(3):e520-9.
9. Kuhlthau KA, Warfield ME, Hurson J, Delahaye J, Crossman MK. Pediatric provider's perspectives on the transition to adult health care for youth with autism spectrum disorder: current strategies and promising new directions. Autism. 2015 Apr; 19(3):262-71.
10. McAllister JW, Cooley WC, Van Cleave J, Boudreau AA, Kuhlthau K. Medical home transformation in pediatric primary care--what drives change? Ann Fam Med. 2013 May-Jun; 11 Suppl 1:S90-8.
11. Pulcini CD, Kotelchuck M, Kuhlthau KA, Nozzolillo AA, Perrin JM. Potential savings from redetermining disability among children receiving supplemental security income benefits. Acad Pediatr. 2012 Nov-Dec; 12(6):489-94.
12. Arauz Boudreau AD, Van Cleave JM, Gnanasekaran SK, Kurowski DS, Kuhlthau KA. The medical home: relationships with family functioning for children with and without special health care needs. Acad Pediatr. 2012 Sep-Oct; 12(5):391-8.
13. Payakachat N, Tilford JM, Kovacs E, Kuhlthau K. Autism spectrum disorders: a review of measures for clinical, health services and cost-effectiveness applications. Expert Rev Pharmacoecon Outcomes Res. 2012 Aug; 12(4):485-503.
14. Tilford JM, Payakachat N, Kovacs E, Pyne JM, Brouwer W, Nick TG, Bellando J, Kuhlthau KA. Preference-based health-related quality-of-life outcomes in children with autism spectrum disorders: a comparison of generic instruments. Pharmacoeconomics. 2012 Aug 1; 30(8):661-79.
15. Kirchhoff AC, Kuhlthau K, Pajolek H, Leisenring W, Armstrong GT, Robison LL, Park ER. Employer-sponsored health insurance coverage limitations: results from the Childhood Cancer Survivor Study. Support Care Cancer. 2013 Feb; 21(2):377-83.
16. Park ER, Kirchhoff AC, Zallen JP, Weissman JS, Pajolek H, Mertens AC, Armstrong GT, Robison LL, Donelan K, Recklitis CJ, Diller LR, Kuhlthau KA. Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage: implications for the Affordable Care Act. J Cancer Surviv. 2012 Sep; 6(3):251-9.
17. Van Cleave J, Kuhlthau KA, Bloom S, Newacheck PW, Nozzolillo AA, Homer CJ, Perrin JM. Interventions to improve screening and follow-up in primary care: a systematic review of the evidence. Acad Pediatr. 2012 Jul-Aug; 12(4):269-82.
18. Kuhlthau KA, Pulsifer MB, Yeap BY, Rivera Morales D, Delahaye J, Hill KS, Ebb D, Abrams AN, Macdonald SM, Tarbell NJ, Yock TI. Prospective study of health-related quality of life for children with brain tumors treated with proton radiotherapy. J Clin Oncol. 2012 Jun 10; 30(17):2079-86.
19. Houtrow AJ, Yock TI, Delahaye J, Kuhlthau K. The family impacts of proton radiation therapy for children with brain tumors. J Pediatr Oncol Nurs. 2012 May-Jun; 29(3):171-9.
20. Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. Health care transition for youth with special health care needs. J Adolesc Health. 2012 Sep; 51(3):213-9.
21. Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM. Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J. 2012 Feb; 16(2):297-305.
22. Katz ML, Laffel LM, Perrin JM, Kuhlthau K. Impact of type 1 diabetes mellitus on the family is reduced with the medical home, care coordination, and family-centered care. J Pediatr. 2012 May; 160(5):861-7.
23. Guzman MP, Jellinek M, George M, Hartley M, Squicciarini AM, Canenguez KM, Kuhlthau KA, Yucel R, White GW, Guzman J, Murphy JM. Mental health matters in elementary school: first-grade screening predicts fourth grade achievement test scores. Eur Child Adolesc Psychiatry. 2011 Aug; 20(8):401-11.
24. Kuhlthau KA. Measures of availability of health care services for children. Acad Pediatr. 2011 May-Jun; 11(3 Suppl):S42-8.
25. Kuhlthau K, Jellinek M, White G, Vancleave J, Simons J, Murphy M. Increases in behavioral health screening in pediatric care for Massachusetts Medicaid patients. Arch Pediatr Adolesc Med. 2011 Jul; 165(7):660-4.
26. Szilagyi PG, Kuhlthau KA. Children with special health care needs: a celebration of success! Acad Pediatr. 2011 Mar-Apr; 11(2):94-5.
27. Kuhlthau KA, Bloom S, Van Cleave J, Knapp AA, Romm D, Klatka K, Homer CJ, Newacheck PW, Perrin JM. Evidence for family-centered care for children with special health care needs: a systematic review. Acad Pediatr. 2011 Mar-Apr; 11(2):136-43.
28. Lipstein EA, Nabi E, Perrin JM, Luff D, Browning MF, Kuhlthau KA. Parents' decision-making in newborn screening: opinions, choices, and information needs. Pediatrics. 2010 Oct; 126(4):696-704.
29. Kuhlthau K, Orlich F, Hall TA, Sikora D, Kovacs EA, Delahaye J, Clemons TE. Health-Related Quality of Life in children with autism spectrum disorders: results from the autism treatment network. J Autism Dev Disord. 2010 Jun; 40(6):721-9.
30. Oreskovic NM, Kuhlthau KA, Laraque D, Serwint JR, Schuster MA. Health care reform for children: views from the Academic Pediatric Association. Acad Pediatr. 2010 May-Jun; 10(3):153-4.
31. Arauz Boudreau AD, Fluet CF, Reuland CP, Delahaye J, Perrin JM, Kuhlthau K. Associations of providers' language and cultural skills with Latino parents' perceptions of well-child care. Acad Pediatr. 2010 May-Jun; 10(3):172-8.
32. Kuhlthau KA, Delahaye J, Erickson-Warfield M, Shui A, Crossman M, van der Weerd E. Health Care Transition Services for Youth With Autism Spectrum Disorders: Perspectives of Caregivers. Pediatrics. 2016 Feb; 137 Suppl 2:S158-66.
33. Perrin JM, Coury DL, Klatka K, Winklosky B, Wolfe A, Murray D, Kuhlthau KA. The Autism Intervention Research Network on Physical Health and the Autism Speaks Autism Treatment Network. Pediatrics. 2016 Feb; 137 Suppl 2:S67-71.
34. Broder-Fingert S, Shui A, Ferrone C, Iannuzzi D, Cheng ER, Giauque A, Connors S, McDougle CJ, Donelan K, Neumeyer A, Kuhlthau K. A Pilot Study of Autism-Specific Care Plans During Hospital Admission. Pediatrics. 2016 Feb; 137 Suppl 2:S196-204.
35. Iezzoni LI, Wint AJ, Kuhlthau KA, Boudreau AA. Adults' recollections and perceptions of childhood caregiving to a parent with significant physical disability. Disabil Health J. 2016 Apr; 9(2):208-17.
36. Tilford JM, Payakachat N, Kuhlthau KA, Pyne JM, Kovacs E, Bellando J, Williams DK, Brouwer WB, Frye RE. Treatment for Sleep Problems in Children with Autism and Caregiver Spillover Effects. J Autism Dev Disord. 2015 Nov; 45(11):3613-23.
37. Chien AT, Kuhlthau KA, Toomey SL, Quinn JA, Houtrow AJ, Kuo DZ, Okumura MJ, Van Cleave JM, Johnson CK, Mahoney LL, Martin J, Landrum MB, Schuster MA. Development of the Children With Disabilities Algorithm. Pediatrics. 2015 Oct; 136(4):e871-8.
38. Warfield ME, Crossman MK, Delahaye J, Der Weerd E, Kuhlthau KA. Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD). J Autism Dev Disord. 2015 Jul; 45(7):2209-17.
39. Ronis SD, Baldwin CD, Blumkin A, Kuhlthau K, Szilagyi PG. Patient-Centered Medical Home and Family Burden in Attention-Deficit Hyperactivity Disorder. J Dev Behav Pediatr. 2015 Jul-Aug; 36(6):417-25.
40. Pulcini CD, Perrin JM, Houtrow AJ, Sargent J, Shui A, Kuhlthau K. Examining Trends and Coexisting Conditions Among Children Qualifying for SSI Under ADHD, ASD, and ID. Acad Pediatr. 2015 Jul-Aug; 15(4):439-43.
41. Pulsifer MB, Sethi RV, Kuhlthau KA, MacDonald SM, Tarbell NJ, Yock TI. Early Cognitive Outcomes Following Proton Radiation in Pediatric Patients With Brain and Central Nervous System Tumors. Int J Radiat Oncol Biol Phys. 2015 Oct 1; 93(2):400-7.
42. Isong IA, Zuckerman KE, Rao SR, Kuhlthau KA, Winickoff JP, Perrin JM. Association between parents' and children's use of oral health services. Pediatrics. 2010 Mar; 125(3):502-8.
43. Witt WP, Kahn R, Fortuna L, Winickoff J, Kuhlthau K, Pirraglia PA, Ferris T. Psychological distress as a barrier to preventive healthcare among U.S. women. J Prim Prev. 2009 Sep; 30(5):531-47.
44. Cooley WC, McAllister JW, Sherrieb K, Kuhlthau K. Improved outcomes associated with medical home implementation in pediatric primary care. Pediatrics. 2009 Jul; 124(1):358-64.
45. Oreskovic NM, Winickoff JP, Kuhlthau KA, Romm D, Perrin JM. Obesity and the built environment among Massachusetts children. Clin Pediatr (Phila). 2009 Nov; 48(9):904-12.
46. Oreskovic NM, Kuhlthau KA, Romm D, Perrin JM. Built environment and weight disparities among children in high- and low-income towns. Acad Pediatr. 2009 Sep-Oct; 9(5):315-21.
47. Newacheck PW, Houtrow AJ, Romm DL, Kuhlthau KA, Bloom SR, Van Cleave JM, Perrin JM. The future of health insurance for children with special health care needs. Pediatrics. 2009 May; 123(5):e940-7.
48. Wexler T, Gunnell L, Omer Z, Kuhlthau K, Beauregard C, Graham G, Utz AL, Biller B, Nachtigall L, Loeffler J, Swearingen B, Klibanski A, Miller KK. Growth hormone deficiency is associated with decreased quality of life in patients with prior acromegaly. J Clin Endocrinol Metab. 2009 Jul; 94(7):2471-7.
49. Zuckerman KE, Boudreau AA, Lipstein EA, Kuhlthau KA, Perrin JM. Household language, parent developmental concerns, and child risk for developmental disorder. Acad Pediatr. 2009 Mar-Apr; 9(2):97-105.
50. Lipstein EA, Perrin JM, Kuhlthau KA. School absenteeism, health status, and health care utilization among children with asthma: associations with parental chronic disease. Pediatrics. 2009 Jan; 123(1):e60-6.
51. Kuhlthau K, Kahn R, Hill KS, Gnanasekaran S, Ettner SL. The well-being of parental caregivers of children with activity limitations. Matern Child Health J. 2010 Mar; 14(2):155-63.
52. Gnanasekaran SK, Boudreau AA, Soobader MJ, Yucel R, Hill K, Kuhlthau K. State policy environment and delayed or forgone care among children with special health care needs. Matern Child Health J. 2008 Nov; 12(6):739-46.
53. Homer CJ, Klatka K, Romm D, Kuhlthau K, Bloom S, Newacheck P, Van Cleave J, Perrin JM. A review of the evidence for the medical home for children with special health care needs. Pediatrics. 2008 Oct; 122(4):e922-37.
54. Toomey SL, Finkelstein J, Kuhlthau K. Does connection to primary care matter for children with attention-deficit/hyperactivity disorder? Pediatrics. 2008 Aug; 122(2):368-74.
55. Tang MH, Hill KS, Boudreau AA, Yucel RM, Perrin JM, Kuhlthau KA. Medicaid managed care and the unmet need for mental health care among children with special health care needs. Health Serv Res. 2008 Jun; 43(3):882-900.
56. Kuhlthau K, Hill K, Fluet C, Meara E, Yucel RM. Correlates of therapy use and expenditures in children in the United States. Dev Neurorehabil. 2008 Apr-Jun; 11(2):115-23.
57. Perrin JM, Kuhlthau K, Chughtai A, Romm D, Kirschner BS, Ferry GD, Cohen SA, Gold BD, Heyman MB, Baldassano RN, Winter HS. Measuring quality of life in pediatric patients with inflammatory bowel disease: psychometric and clinical characteristics. J Pediatr Gastroenterol Nutr. 2008 Feb; 46(2):164-71.
58. Perrin JM, Romm D, Bloom SR, Homer CJ, Kuhlthau KA, Cooley C, Duncan P, Roberts R, Sloyer P, Wells N, Newacheck P. A family-centered, community-based system of services for children and youth with special health care needs. Arch Pediatr Adolesc Med. 2007 Oct; 161(10):933-6.
59. Hill KS, Freeman LC, Yucel RM, Kuhlthau KA. Unmet need among children with special health care needs in Massachusetts. Matern Child Health J. 2008 Sep; 12(5):650-61.
60. Perrin JM, Fluet CF, Honberg L, Anderson B, Wells N, Epstein S, Allen D, Tobias C, Kuhlthau KA. Benefits for employees with children with special needs: findings from the collaborative employee benefit study. Health Aff (Millwood). 2007 Jul-Aug; 26(4):1096-103.
61. Witt WP, Fortuna L, Wu E, Kahn RS, Winickoff JP, Pirraglia PA, Ferris TG, Kuhlthau K. Children's use of motor vehicle restraints: maternal psychological distress, maternal motor vehicle restraint practices, and sociodemographics. Ambul Pediatr. 2006 May-Jun; 6(3):145-51.
62. Ferris TG, Kuhlthau K, Ausiello J, Perrin J, Kahn R. Are minority children the last to benefit from a new technology? Technology diffusion and inhaled corticosteriods for asthma. Med Care. 2006 Jan; 44(1):81-6.
63. Kuhlthau K, Ferris TG, Davis RB, Perrin JM, Iezzoni LI. Pharmacy-and diagnosis-based risk adjustment for children with Medicaid. Med Care. 2005 Nov; 43(11):1155-9.
64. Blumenthal D, Weissman JS, Wachterman M, Weil E, Stafford RS, Perrin JM, Ferris TG, Kuhlthau K, Kaushal R, Iezzoni LI. The who, what, and why of risk adjustment: a technology on the cusp of adoption. J Health Polit Policy Law. 2005 Jun; 30(3):453-73.
65. Kuhlthau K, Hill KS, Yucel R, Perrin JM. Financial burden for families of children with special health care needs. Matern Child Health J. 2005 Jun; 9(2):207-18.
66. Perrin JM, Fluet C, Kuhlthau KA, Anderson B, Wells N, Epstein S, Allen D, Tobias C. Benefits for employees with children with ADHD: findings from the Collaborative Employee Benefit Study. J Dev Behav Pediatr. 2005 Feb; 26(1):3-8.
67. Kuhlthau K, Nyman RM, Ferris TG, Beal AC, Perrin JM. Correlates of use of specialty care. Pediatrics. 2004 Mar; 113(3 Pt 1):e249-55.
68. Kuhlthau K, Ferris TG, Iezzoni LI. Risk adjustment for pediatric quality indicators. Pediatrics. 2004 Jan; 113(1 Pt 2):210-6.
69. Beal AC, Kuhlthau K, Perrin JM. Breastfeeding advice given to African American and white women by physicians and WIC counselors. Public Health Rep. 2003 Jul-Aug; 118(4):368-76.
70. Perrin JM, Kuhlthau KA, Gortmaker SL, Beal AC, Ferris TG. Generalist and subspecialist care for children with chronic conditions. Ambul Pediatr. 2002 Nov-Dec; 2(6):462-9.
71. Kuhlthau KA, Beal AC, Ferris TG, Perrin JM. Comparing a diagnosis list with a survey method to identify children with chronic conditions in an urban health center. Ambul Pediatr. 2002 Jan-Feb; 2(1):58-62.
72. Kuhlthau KA, Perrin JM. Child health status and parental employment. Arch Pediatr Adolesc Med. 2001 Dec; 155(12):1346-50.
73. Kuhlthau K, Ferris TG, Beal AC, Gortmaker SL, Perrin JM. Who cares for medicaid-enrolled children with chronic conditions? Pediatrics. 2001 Oct; 108(4):906-12.
74. Ferris TG, Kuhlthau K. Why should pediatricians be concerned about risk adjustment? Ambul Pediatr. 2001 Jul-Aug; 1(4):225-6.
75. Cooper WO, Kuhlthau K. Evaluating medicaid managed care programs for children. Ambul Pediatr. 2001 Mar-Apr; 1(2):112-6.
76. Ettner SL, Kuhlthau K, McLaughlin TJ, Perrin JM, Gortmaker SL. Impact of expanding SSI on Medicaid expenditures of disabled children. Health Care Financ Rev. 2000; 21(3):185-201.
77. Thyen U, Kuhlthau K, Perrin JM. Employment, child care, and mental health of mothers caring for children assisted by technology. Pediatrics. 1999 Jun; 103(6 Pt 1):1235-42.
78. Perrin JM, Kuhlthau K, McLaughlin TJ, Ettner SL, Gortmaker SL. Changing patterns of conditions among children receiving Supplemental Security Income disability benefits. Arch Pediatr Adolesc Med. 1999 Jan; 153(1):80-4.
79. Kuhlthau K, Perrin JM, Ettner SL, McLaughlin TJ, Gortmaker SL. High-expenditure children with Supplemental Security Income. Pediatrics. 1998 Sep; 102(3 Pt 1):610-5.
80. Kuhlthau K, Walker DK, Perrin JM, Bauman L, Gortmaker SL, Newacheck PW, Stein RE. Assessing managed care for children with chronic conditions. Health Aff (Millwood). 1998 Jul-Aug; 17(4):42-52.
81. Perrin JM, Ettner SL, McLaughlin TJ, Gortmaker SL, Bloom SR, Kuhlthau K. State variations in supplemental security income enrollment for children and adolescents. Am J Public Health. 1998 Jun; 88(6):928-31.
82. Perrin JM, Kuhlthau K, Walker DK, Stein RE, Newacheck PW, Gortmaker SL. Monitoring health care for children with chronic conditions in a managed care environment. Matern Child Health J. 1997 Mar; 1(1):15-23.
83. Newacheck PW, Stein RE, Walker DK, Gortmaker SL, Kuhlthau K, Perrin JM. Monitoring and evaluating managed care for children with chronic illnesses and disabilities. Pediatrics. 1996 Nov; 98(5):952-8.
84. Howland J, Mangione TW, Kuhlthau K, Bell N, Heeren T, Lee M, Levine S. Work-site variation in managerial drinking. Addiction. 1996 Jul; 91(7):1007-17.
85. Mason KO, Kuhlthau K. The perceived impact of child care costs on women's labor supply and fertility. Demography. 1992 Nov; 29(4):523-43.
86. Van Cleave J, Boudreau AA, McAllister J, Cooley WC, Maxwell A, Kuhlthau K. Care coordination over time in medical homes for children with special health care needs. Pediatrics. 2015 Jun; 135(6):1018-26.
87. Kirchhoff AC, Parsons HM, Kuhlthau KA, Leisenring W, Donelan K, Warner EL, Armstrong GT, Robison LL, Oeffinger KC, Park ER. Supplemental security income and social security disability insurance coverage among long-term childhood cancer survivors. J Natl Cancer Inst. 2015 Jun; 107(6):djv057.
88. Park ER, Kirchhoff AC, Perez GK, Leisenring W, Weissman JS, Donelan K, Mertens AC, Reschovsky JD, Armstrong GT, Robison LL, Franklin M, Hyland KA, Diller LR, Recklitis CJ, Kuhlthau KA. Childhood Cancer Survivor Study participants' perceptions and understanding of the Affordable Care Act. J Clin Oncol. 2015 Mar 1; 33(7):764-72.
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