Medical Home Bibliography
The National Center has compiled and organized all of the articles, policy statements and reports that have been developed on the Medical Home and the 7elements that ensure that care is accessible, family-centered, continuous, comprehensive, coordinated, compassionate and culturally competent.

General Medical Home Information

Impact on Care Givers and Families

Policy Statements

  • The pediatrician’s role in community pediatrics. Pediatrics. Elk Grove Village, IL: American Academy of Pediatrics; 1999. Available at: www.aap.org/policy/re9826.html
  • General principles in the care of children and adolescents with genetic disorders and otherchronic health conditions (RE9717). Pediatrics. Elk Grove Village, IL: American Academy of Pediatrics; 1997.
    Available at: www.aap.org/policy/re9717.html

Periodicals/Articles

  • State Policy Options to Establish Medical Homes for Children and Youth - Issue Report from the Association of State and Territorial Health Officials / January 2005 Available at: www.astho.org/pubs/ISSUEREPORTMedicalHomesforChildren72104.pdf
  • Cooley WC; American Academy of Pediatrics Committee on Children with Disabilities. Providing a Primary Care Medical Home For Children and Youth with Cerebral Palsy. Elk Grove Village, IL: American Academy of Pediatrics; 2004.
  • Cooley, CW. Redefining Primary Pediatric Care for Children with Special Health Care Needs: The Primary Care Medical Home Current Opinion in Pediatrics. December 2004;16(6):689-692
  • Cooley WC, McAllister JW, Sherrieb K, Clark RE. The medical home index: development and validation of a new practice-level measure of implementation of the medical homemodel. Ambulatory Pediatrics. 2003; Vol 3, No 4
  • Exceptional Parent. PO Box 2078, Marion, OH 43306-2178. Telephone: 877/372-7368
    Available at: www.eparent.com/
  • Kaczorowski J (ed.). Community pediatrics: Making child health at the community level an integral part of pediatric training and practice. Pediatrics 115(4, Suppl.):1119-1212 Available at: http://pediatrics.aappublications.org/
  • Kretzmann JP, McKnight JL. Building Communities From the Inside Out: A Path Toward Finding and Mobilizing
    A Community’s Assets.     Chicago, IL: ACTA Publications; 1993. (Distributed exclusively by: ACTA Publications,
    4848 N Clark St, Chicago, IL; 60640; 800/397-2282)
  • Mahoney, D. Medical Home Model Thrives at UCLA. Online Pediatric News; 2004:38:9
  • Martin JC, Avant RF, Bowman MA, Bucholtz JR, Dickinson JR, Evans KL, Green LA, Henley DE, Jones WA, Matheny SC, Nevin JE, Panther SL, Puffer JC, Roberts RG, Rodgers DV, Sherwood RA, Stange KC, Weber CW; Future of Family Medicine Project Leadership Committee. The Future of Family Medicine: A Collaborative Project of the Family Medicine Community. Annals of Family Medicine 2:S3-S32; 2004.
    Available at: www.annfammed.org/cgi/content/full/2/suppl_1/s3
  • McBurney PG, Simpson KN and Darden PM. Potential Cost Savings of Decreased Emergency Department Visits Through Increased Continuity in a Pediatric Medical Home. Ambulatory Pediatrics: Vol. 4, No. 3, pp. 204–208; 2004. Available at http://ampe.allenpress.com/ampeonline/?request=get-document&doi=10.1367/A03-069R.1
  • Nelson, CS, Higman, S, Sia, C, McFarlane, E, Fuddy, L, Duggan, A: Medical Homes for At-Risk Children: Parental Reports of Clinician- Parent Relationships, Anticipatory Guidance, and Behavior Changes. Pediatrics 115:48-56, January 2005.
  • Nickel, R.E., Cooley WC, McAllister JW, and Smason-Fang, L. Building Medical Homes for Children with
    Special Health Care Needs    . Infants and Young Children. Vol. 16, No. 4, pp. 331-341
  • Nickel RE, Desch LW. The Physician’s Guide to Caring for Children with Disabilities and Chronic Conditions.
    Baltimore, MD: Paul H Brookes Publishing Co. In press
  • Nyman R, Ireys H. 2004. Children with Special Health Care Needs: Building a Quality-of-Care Initiative. Washington, DC: Mathematica Policy Research, Inc. Available at: www.mathematica-mpr.com/publications/redirect_pubsdb.asp?strSite=pdfs/cshcn.pdf
  • Smith PJ, Santoli JM, Chu SY, Ochoa DQ, Rodewald LE. The Association Between Having a Medical Home and Vaccination Coverage Among Children Eligible for the Vaccines for Children Program. Pediatrics. 2005;116 130-139 Available at: http://pediatrics.aappublications.org/cgi/content/abstract/116/1/130?etoc
  • Spector ND, Kelly SF. Medical Home, Obesity, Acute Otitis Media, and Otitis Media with Effusion. Current Opinion in Pediatrics December 2004;16(6):706-722
  • Stagg EV. Medical Home Model Gains Momentum. AMA News. August. 9, 2004.
    Available at: www.ama-assn.org/amednews/2004/08/09/hlsb0809.htm

Accessibility

Policy Statements

  • American Academy of Pediatrics. The role of the pediatrician in implementing the Americans With Disabilities Act: subject review. Pediatrics. 1996;98(1):146-148. Available at: http://aappolicy.aappublications.org
  • American Academy of Pediatrics; Committee on Pediatric Emergency Medicine. The role of the pediatrician in rural EMSC. Pediatrics. 1998;101(5):941-943. Available at: www.aap.org/policy/re9744.html
  • American Academy of Pediatrics. Safe transportation of premature and low birth weight infants. Pediatrics. 2001. Available at: www.aap.org/policy/01351.html
  • American Academy of Pediatrics; Committee on Injury and Poison Prevention. School bus transportation of children with special needs. Pediatrics. 2001;108(2):516-518 Available at: www.aap.org/policy/0051.html
  • American Academy of Pediatrics; Committee on Injury and Poison Prevention. Transporting children with special health care needs. Pediatrics. 1999;104(4):988-992. Available at: www.aap.org/policy/re9852.html

Periodicals/Articles

Reports/Documents

  • Strategy to Ensure All Children Have Access to Care Moves Forward. LETTER FROM THE PRESIDENT. AAP News Vol. 22 No. 3 March 2003, p. 104 © 2003 American Academy of Pediatrics.
    Available at: www.aapnews.org/cgi/content/full/22/3/104

    Access to Insurance    - From the Commonwealth Fund
  • States Are Stretching Health Care Dollars in Imaginative Ways Stretching State Health Care Dollars During Difficult Economic Times: Overview. Sharon Silow-Carroll, M.B.A., M.S.W., and Tanya Alteras, M.P.P.,
    October 2004. Available at: www.cmwf.org/publications/publications_show.htm?doc_id=243623
  • Consumer-Directed Health Plans: Will Patients Get the Care They Need?Will Consumer-Directed Health Care Improve System Performance? Karen Davis, Ph.D., August 2004.
    Available at: www.cmwf.org/publications/publications_show.htm?doc_id=235864

Health Care Financing

Policy Statements

  • American Academy of Pediatrics, Committee on Child Health Financing. Guiding principles for managed care arrangements for the health care of newborns, infants, children, adolescents, and young adults . Pediatrics. 2000;105(1):132-135 Available at: www.aap.org/policy/re9932.html
  • American Academy of Pediatrics, Committee on Children With Disabilities. Managed care and children with special health care needs: a subject review. Pediatrics. 1997;Available at: www.aap.org/policy/re9814.html
  • American Academy of Pediatrics, Committee on Child Health Financing Medicaid Policy Statement Pediatrics. 2005; 116(1):274-280 Available at: http://aappolicy.aappublications.org/cgi/content/abstract/pediatrics;116/1/274
  • American Academy of Pediatrics, Committee on Child Health Financing. Principles of child health care financing. Pediatrics. 2003;112(4):997-999 Available at: http://pediatrics.aappublications.org/cgi/reprint/112/4/997.pdf
  • American Academy of Pediatrics, Committee on Child Health Financing. Scope of health care benefits for newborns, infants, children, adolescents, and young adults through age 21 years (RE9730). Pediatrics. 1997;100(6):1040-1041. Available at: www.aap.org/policy/re9730.html
Periodicals/Articles Reports/Documents
  • AAP Reports: 2001 Medicaid Reimbursement Reports (National & State).
    Available at: http://www.aap.org/research/medreim01.htm
  • The Center for Health Care Strategies (CHCS).
    Available at: http://www.chcs.org/info-url_nocat3961/info-url_nocat_show.htm?doc_id=206329
    Offers resources for designing, purchasing, and monitoring publicly funded
    managed care. These include resources for CHCS' Purchasing Institutes.
    CHCS Informed Purchasing resources are housed under the following categories.
    The following tools/reports/information are available.
    • Assessment Tools
    • Behavioral Health
    • Informed Purchasing Publication Series
    • State Medicaid Agencies
    • CHCS Purchasing Institute
    • Children's Health Care
    • Enrollment/Plan Exits
    • Finance
    • Oral Health
    • Performance Measurement and Quality Assurance
    • Pharmacy
    • State Medicaid/SCHIP Program Design -- General
    • Strategic Uses of Data
  • MCH Policy Research Center Publications.
    Available at: www.mchpolicy.org/publications/special.html
  • The Strengths and Weaknesses of Private Health Insurance for children with Special Health Care Needs.
    Available at: www.mchpolicy.org/publications/pdfs/phi.pdf
  • An Analysis of States' Capitation Methods and Pediatric Rates, 1997-2003. Available at: www.mchpolicy.org/publications/medicaid.html
  • Family Cost-Sharing for CSHCN in Employer-Based Managed Care Plans 1999-2001 Available at: www.mathematica-mpr.com/publications/PDFs/familycost.pdf
  • Mental Health Services for CSHCN in Commercial Managed Care, 1999-2001 Available at: www.mathematica-mpr.com/publications/PDFs/menhlthchil.pdf
  • Kaiser Report Examines Implications of Waiver Activity
    A March 2005 report of the Kaiser Commission on Medicaid and the Uninsured examines the policy implications of Medicaid Section 1115 waiver activity that has taken place in recent years. Since January 2001, 17 states have received approval for Section 1115 waivers, including Health Insurance Flexibility and Accountability (HIFA) waivers. Available at: www.kff.org/medicaid/7286.cfm
  • State Health Facts Online- Kaiser Family Foundation
    This new resource contains the latest state-level data on demographics, health, and health policy, including health coverage, access, financing, and state legislation. You can compare data for all states or look up an individual state profile. Available at: www.statehealthfacts.kff.org/

Rural Initiatives

Articles/Reports

  • Amundson B. Myth and reality in the rural health service crisis: facing up to community responsibilities. Journal of Rural Health. 1993;9:176-187. (Link is for ordering information only - no abstract provided.)
    Available at: www.nrharural.org/search/subj/Community1.html
  • Melzer SM, Grossman DC, Hart GL, Rosenblatt RA. Hospital services for rural children in Washington state. Pediatrics. 1997;99:196-203
    Available at: http://pediatrics.aappublications.org/cgi/reprint/99/2/196.pdf
  • Marcin J, Ellis J, and others. Using Telemedicine to Provide Pediatric Subspecialty Care to Children with Special Health Care Needs in an Underserved Rural Community. Pediatrics. 2004;113:1-6
  • Available at: http://pediatrics.aappublications.org/cgi/reprint/113/1/1.pdf
  • Moran CM, Hletko P, Darden P, Reigart JR. Transportation: A Barrier to Health Care for Rural Children? The Journal of the South Carolina Medical Association. 2003;99(9e)
    Available at:
    http://scmanet.hosting.cephiretech.net/New SCMA Journal/September 2003/Moran article.pdf
  • Randolph GD, Pathman DE. Trends in the rural-urban distribution of general pediatricians. Pediatrics. 2001;107 Available at: http://pediatrics.aappublications.org/cgi/reprint/107/2/e18.pdf
  • Health Care Delivery: Rural vs. Urban Communities. Developed by the American Medical Student Association (AMSA) Foundation's Generalist Physicians in Training project under a grant form the Robert Wood Johnson Foundation. Available at: www.amsa.org/programs/gpit/ruralurban.cfm
    • Why do underserved communities have problems retaining physicians?
    • How can students help improve health care delivery to underserved communities?
    • What are the special needs of rural and urban underserved communities?
    • How can students interested in primary care practice be better prepared for a rural or urban practice
Policy Statements

Continuous, Comprehensive, Coordinated Care

Policy Statements

Periodicals/Articles
  • Berman S, Rannie M, Moore L, Elias E, Dryer LJ, and Jones, MD. Utilization and Costs for Children Who Have Special Health Care Needs and Are Enrolled in a Hospital-Based Comprehensive Primary Care Clinic Pediatrics 2005;115 e637-e642 Available at: http://pediatrics.aappublications.org/cgi/content/abstract/115/6/e637?etoc
  • Broyles RS, Tyson JE, Heyne E, et al. Comprehensive follow-up care and life threatening illness among high-risk infants. JAMA. 2000;284:2070-2076
    Available at: http://jama.ama-assn.org/cgi/reprint/284/16/2070.pdf
  • Bradford R. Promoting inter-agency collaboration in child services. Child: Care, Health and Development; 1993:355-367
  • Christakis DA, Wright J, Zimmerman F, Bassett A, Connell F. Continuity of care is associated with high-quality care by parental report. Pediatrics. 2002;109:1-6
    Available at: http://pediatrics.aappublications.org/cgi/reprint/109/4/e54.pdf
  • Christakis DA, Mel L, Koepsell T, Zimmerman F, Connell F. Association of lower continuity of care with greater risk of emergency department use and hospitalization in children. Pediatrics. 2001;103:524-529
    Available at: http://pediatrics.aappublications.org/cgi/reprint/107/3/524.pdf
  • Christakis DA, Wright J, Koepsell T, Emerson S, Connell F. Is greater continuity of care associated with less emergency department utilization? Pediatrics. 1999;103:738-742
    Available at: http://pediatrics.aappublications.org/cgi/reprint/103/4/738.pdf
  • Desch LW, Nickel RE. The Physician’s Guide to Caring for Children with Disabilities and Chronic Conditions. Baltimore, MD: Pal H. Brookes Publishing Co; 2000: (800/638-3775) In press
  • Feeney D, Kaufman J. Caring for children with special health care needs. Caring Magazine. December 1994:12-16
  • Hack, C. Paradigms of care for children with special health care needs. Pediatric Annals. 1997;26:674-678
  • Hartman AF. Parent-to-parent support: a critical component of health care services for families.
    Issues in Comprehensive Pediatric Nursing    . 1992;15:55-67
  • Johnson C, Blasco P. Community resources for children with special needs. Pediatric Annals. 1997;26:679-686
  • Kee CC, Borchers L. Reducing Readmission Rates Through Discharge Interventions. Clinical Nurse Specialist. 1998;12(5):205
  • Liptak, G. Consultation with the specialist: home care for children who have chronic conditions. Pediatrics in Review. 1997;18:271-273 Available at:http://pedsinreview.aappublications.org/cgi/reprint/18/8/271.pdf
  • Liptak G, Burns C, Davidson P, McAnarney E. Effects of providing comprehensive ambulatory services to children with chronic conditions. Archives of Pediatrics and Adolescent Medicine. 1998;152:1003-1008
    Available at: http://archpedi.ama-assn.org/cgi/reprint/152/10/1003.pdf
  • Perrin J, Ireys H. The organization of services for chronically ill children and their families. Pediatric Clinics of North America. 1984;31:235-257
  • Porter S, Haynie M, Biecle T, Caldwell T, Palfrey J. Children and Youth Assisted by Medical Technology in Education Settings: Guidelines for Care. 2nd ed. Baltimore, MD: Paul H. Brookes Publishing Co; 1997 (800/638-3775)
  • Presler, B. Care coordination for children with special health care needs. Orthopaedic Nursing. 1998;March/April Supplement:45-51
  • Smith K, Layne M, Garell D. The impact of care coordination on children with special health care needs. Children’s Health Care. 1994;23:251-266
  • Stille, CJ; Antonelli, RC. Coordination of Care for Children with Special Health Care Needs Current Opinion in Pediatrics. December 2004;16(6):700-705
  • Wertz E. Children with special health care needs. In: Emergency Care for Children. Albany, NY: Delmar Thomson Learning; 2001:97-150
  • Wertz E. Children with special health care needs assisted by technology. In: Emergency Care for Children. Albany, NY: Delmar Thomson Learning; 2001:151-175
  • Wertz E. Interacting with parents and caregivers. In: Emergency Care for Children. Albany, NY: Delmar Thomson Learning; 2001:243-253
  • Zuckerman B, Stevens G, Inkelas M, et al. Prevalence and correlates of high-quality basic pediatric preventive care. Pediatrics. 2004;114(6): 1522-1529
Reports/Documents

  • Innovative Approaches for Improving Referral, Consultation, and Shared Management in Primary and Specialty Pediatric Care
    Washington, DC -- A new report from the Federal Expert Work Group on Pediatric Subspecialty Capacity and the MCH Policy Research Center profiles promising approaches to strengthen collaboration between primary and specialty pediatric care. The report, Promising Approaches for Improving the Interface between Primary and Specialty Pediatric Care, describes 10 real-world strategies to address referral, consultation, and shared management that can improve the availability of pediatric subspecialty care and enhance health outcomes for children.

    The Federal Expert Work Group on Pediatric Subspecialty Capacity was formed by the Maternal and Child Health Bureau in response to growing evidence that access to pediatric subspecialty care in many parts of the U.S. is worsening. The group has 3 main objectives: 1) define the scope of current and projected pediatric subspecialty capacity problems and their consequences; 2) identify promising approaches for improving shared management between pediatric subspecialists and medical homes, reimbursement, continuing education and training, and state/regional delivery system networks; and 3) develop recommendations and a tactical plan to improve access to subspecialty care. Available at:
    www.mchpolicy.org/documents/InterfacePromisingPracticesReport.pdf

  • MCHB and JSI Release Review of Care Coordination Activities of DSCSHN State Implementation Grantees
    Several of the health insurance and financing implementation grantees funded by the Division of Services for Children with Special Healthcare Needs (DSCSHN) of the Maternal Child Health Bureau (MCHB), had expressed an interest in examining care coordination models. An initial recommendation to review care coordination activities among these grantees sparked an interest to expand this review to all state implementation grantees. While a previous study had focused on the role of Title V in care coordination, there had never been a review of the role of state implementation grantees in this critical aspect of developing a system of care for CYSHCN.

    As part of their current contract with DSCSHN, John Snow, Inc. (JSI) was asked to develop a survey to capture the range of activities among the state implementation grantees. This report addresses all 6 of the Healthy People 2010 outcomes, through a survey of all MCHB State Implementation grantees. The survey focused on the care coordination activities of the grantees, such as methods of care coordination program development and implementation, methods of financing, and effectiveness of care coordination. Available at: www.medicalhomeinfo.org/publications/downloads/JSICCrpt2005.doc

  • 2006 Medicare Care Management Demonstration Project
    This 3 year demonstration was mandated under Section 649 of the MMA to promote the use of health information technology and improve the quality of care for beneficiaries. Doctors in small to medium sized practices who meet clinical performance measure standards will receive a bonus payment for managing the care of eligible Medicare beneficiaries. The demonstration will be implemented in California, Arkansas, Massachusetts and Utah.

  • 2001 Medicare Coordinated Care Demonstration
    This project tests whether providing coordinated care services to Medicare beneficiaries with complex chronic conditions can yield better patient outcomes without increasing program costs. Medicare will test the cost-effectiveness of paying for case management and disease management services under the Medicare Coordinated Care Demonstration. These coordinated care interventions will supplement routine care for chronically ill beneficiaries.

    Historically, a small proportion of Medicare fee-for-service beneficiaries has accounted for a disproportionate share of Medicare expenditures. These beneficiaries often suffer from one or more chronic illnesses and require repeated costly hospitalizations. They typically receive fragmented health care across multiple health care providers and multiple sites of care. Moreover, providers may not follow evidence-based guidelines, and patients may not know how to care best for themselves. As the population ages, the number of chronically ill beneficiaries is expected to grow dramatically, with serious implications for Medicare program costs.

    The Medicare Coordinated Care Demonstration, authorized by the Balanced Budget Act of 1997, will target beneficiaries with chronic conditions that represent high costs to the Medicare program, such as asthma, diabetes, congestive heart failure and related cardiac conditions, hypertension, coronary artery disease, cardiovascular and cerebrovascular conditions, chronic lung disease, cancer and other chronic conditions.

    Beneficiaries will receive comprehensive care planning, patient education, and ongoing monitoring between doctor visits to improve self-care, identify complications early, avoid costly hospitalizations, and better coordinate treatments and medications for multiple illnesses and conditions. In addition, some of the projects will offer participating beneficiaries additional benefits aimed at removing barriers to prompt medical care, such as coordinating with community-based services, transportation, assistance with medications, non-covered home visits, and medical equipment. Beneficiaries will not have out-of-pocket costs for the demonstration services.

Fifty-eight applicants submitted proposals by the October 11, 2000 application deadline. CMS announced the selection of 15 demonstration sites in January 2001.

The demonstration was implemented on a rolling basis starting April 1, 2002. All 15 demonstration sites are now in operation.

Screening and Surveillance

General Information
Policy Statements

Reports/Documents Hearing Screening
Policy Statements
  • American Academy of Pediatrics; Task Force on Newborn and Infant Hearing. Newborn and Infant Hearing Impairment: Detection and Intervention. Pediatrics. 1999; Pediatrics. 1999;103(2):527-530.
    Available at: www.aap.org/policy/re9846.html
Periodicals/Articles Reports/Documents
  • American Academy of Pediatrics; Joint Committee on Infant Hearing. Joint Committee on Infant Hearing. Principles and Guidelines for Early Hearing Detection and Intervention Programs. Pediatrics. 2000;106(4):798-817. Available at: www.aap.org/policy/infanthear.html
Vision Screening
Policy Statements
  • American Academy of Pediatrics; Committee on Practice and Ambulatory Medicine, Section on Ophthalmology, et al. Eye Examination in Infants, Children, and Young Adults by Pediatricians. Pediatrics. 2003;111(4):902-907
    Available at: www.aap.org/policy/s0208.html
Periodicals/Articles
  • Hartmann EE, Dobson V, Hainline L, et al. Preschool Vision Screening: Summary of a Task Force Report. Pediatrics. 2000;106(5):1105-1116
Newborn Metabolic/Genetic Screening
Policy Statements
  • American Academy of Pediatrics; Committee on Bioethics. Ethical Issues With Genetic Testing in Pediatrics. Pediatrics. 2001;107(6):1451-1455 Available at: www.aap.org/policy/re9924.html
  • American Academy of Pediatrics; Section on Endocrinology and Committee on Genetics, and American Thyroid Association Committee on Public Health. Newborn Screening for Congenital Hypothyroidism: Recommended Guidelines Pediatrics. Elk Grove Village, IL: American Academy of Pediatrics; 1993;91(6):1202-1209
    Available at: www.aap.org/policy/04407.html
Reports/Documents
  • Newborn Screening Task Force Report. Supplement to Pediatrics. 2000. Preface | Executive Summary | Report. Available at: www.pediatrics.org/
  • GAO Report on Newborn Screening: Characteristics of State Programs (March 2003)
    Available at: www.gao.gov/new.items/d03449.pdf

Transitions

Periodicals/Articles

  • Freeman JT. Sexuality and Disability Webliography: The Wellness and Disability Initiative of the British Columbia Coalition of People with Disabilities web-based bibliography; May 29, 2002.
    Available in both HTML and a 50 page PDF format, the webliography may be found at
    www.bccpd.bc.ca/i/pdf/WDI/Sex_DisabilityWebliog.pdf
  • Exceptional Parent. 877/372-7368, or Web site: www.eparent.com/subscribe/default.htm
  • Betz CL. Adolescent transitions: a nursing concern. Pediatric Nursing. 1998;24:23-30
  • Betz CL. Facilitating the transition of adolescents with chronic conditions from pediatric to adult health care and community settings. Pediatric Nursing. 1998;21:97-115
  • Bloomquist KB, Brown G, Peersen A, and Presler EP. Transition to Independence: Challenges for Young People with Disabilities and their Caregivers. Orthopedic Nursing. 1998:27-35
  • Blum RW. Transition to adult health care: setting the stage. Conference Proceedings. Journal of Adolescent Health. 1995;17:3-5
  • Blum RW, Garel D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the Society for Adolescent Medicine. Journal of Adolescent Health. 1993;14:570-576
  • Bowes G, Sinnema G, Suris J, Buhlmann U. Transition health services for youth with disabilities: a global perspective. Conference Proceedings. Journal of Adolescent Health. 1995;171:23-31
  • Franzini L, Marks E, Cromwell PF. Projected economic costs due to health consequences of teenagers' loss of confidentiality in obtaining reproductive health care services in Texas. Archives of Pediatrics and Adolescent Medicine. 2004;1589(12):1140-1146
  • Hallum A. Disability and the transition to adulthood: Issues for the disabled child, the family and the pediatrician. Current Problems in Pediatrics. 1995;25:12-50
  • Johnson C. Transition into adulthood. Pediatric Annals. 1995;24:269
  • McCabe M. Involving children and adolescents in medical decision making: developmental and clinical considerations. Journal of Pediatric Psychology. 1996;21:505-516 (Issues-oriented article that reviews the salient aspects of medical decision making by children and adolescents. Issues pertaining to informed consent, developmental level and clinical issues are discussed. Case examples are provided for illustration.)
  • Newacheck PW. Adolescents with special needs: prevalence, severity, and access to health services. Pediatrics. 1992;84:872-881
  • Newacheck PW, Strickland B, Skonkoff JP, et al. An epidemiological profile of children with special health care needs. Pediatrics. 1998;102:117-123
  • Powers L, Sowers J, Stevens T. An exploratory, randomized study of the impact of mentoring on the self-efficacy and community-based knowledge of adolescents with severe physical challenges. Journal of Rehabilitation. 1995; 33-41
  • Reid GJ, Irvine MJ, McCrindle BW, Sananes R, Ritvo PG, Siu SC, Webb GD. Prevalence and Correlates of Successful Transfer from Pediatric to Adult Health Care Among a Cohort of Young Adults with Complex Congenital Heart Defects. Pediatrics. 2004;113(3Pt1):e197-205
  • Rosen DS. Transition from pediatric to adult-oriented health care for the adolescent with chronic illness or disability. Adolescent Medicine: State of the Art Reviews. 1994;5:241-247
  • Rosen D. Between two worlds: bridging the cultures of child health and adult medicine.
    Journal of Adolescent Health. 1995;17:10-16
  • S. Todd Callahan, MD, MPH; William O. Cooper, MD, MPH Access to Health Care for Young Adults With Disabling Chronic Conditions Arch Pediatr Adolesc Med. 2006;160:178-182
  • Sawyer SM, Blair S, Bowes G. Chronic illness in adolescents: transfer or transition to adult services? Journal of Pediatric and Child Health. 1997;33:88-90
  • Sawyer, SM, Aroni RA. Self-Management in Adolescents with Chronic Illness. What does it mean and how can it be achieved? MJA 2005;183(8):405-409 Available at: www.mja.com.au/index.html
  • Scal P, Evans T, Blozis S, et al. Trends in transition from pediatric to adult health care services for young adults with chronic conditions. Journal of Adolescent Health. 1999;24:259-264
  • Schultz A, Liptak G. Helping adolescents who have disabilities negotiate transitions to adulthood. Issues in Comprehensive Pediatric Nursing. 1998;21:187-201
  • Transition of care: the role of the nurse practitioner: Diabetes Spectrum. 1998;11:186
  • Werner P. Primary care for persons with disabilities: family practice perspective. American Journal of Physical Medicine and Rehabilitation. 1997;76 (suppl) :S21-24
  • White P. Success on the road to adulthood. Pediatric Rheumatology. 1997;23:697-707
  • Whitehouse S, Paone M. Patients in transition: bridging the health care gap from youth to adulthood. Contemporary Pediatrics (Canada). 1998;December:13-16
Policy Statements Reports/Documents
  • Roulstone A, Gradwell L, Price J, Child L. How disabled people manage in the workplace. Published for the Foundation by The Policy Press (ISBN 1 86134) 5224 This study explored how disabled people get by in the workplace and looked at the nature of the support they require and receive.
    Available at: www.jrf.org.uk/knowledge/findings/socialcare/793.asp

Compassionate Care

Periodicals/ Articles

  • Baumann AO, Deber RB, Silverman BE, Mallette, CM. Who cares? Who cures? The ongoing debate in the provision of health care. Journal of Advanced Nursing. 1998; 28(5): 1040-5.
  • Bensing J. Doctor-patient communication and the quality of care. Soc Sci Med. 1991; 32: 1301-1310.
  • Brock CD., Salinsky JV. Empathy: an essential skill for understanding the physician-patient relationship in clinical practice. Family Medicine. 1993;25(4): 245-8
  • Buller MK, Buller DB. Physicians’ communication style and patient satisfaction. Journal of Health and Social Behavior. 1987;28:375-388
  • Carmel S., Glick SM. Compassionate-empathic physicians: personality traits and social organizational factors that enhance or inhabit this behavior pattern. Social Science & Medicine. 1996; 43(8): 1253-61.
  • Emanuel EJ., Dubler NN. Preserving the physician-patient relationship in the era of managed care. JAMA.
    1995;273(4):323-9
  • Farber NJ, Novack DH, O'Brien, MK. Love, boundaries and the patient-physician relationship. Archives of Internal Medicine. 1997; 157(20): 2291-4
    Available at: http://archinte.ama-assn.org/cgi/content/abstract/157/20/2291
  • Fricchione GL. Illness and the Origin of Caring. The Journal of Medical Humanities. 1993;14:15-20
  • Fishbein, RH. Scholarship, humanism, and the young physician. Academic Medicine. 1999;74(6):646-61
    Available at: http://intl.academicmedicine.org/cgi/content/abstract/74/6/646
  • Gianakos D. Empathy Revisited. Archives of Internal Medicine. 1996; 156: 135-136
  • Graber DR, Mitcham MD. Compassionate clinicians: take patient care beyond the ordinary. Holist Nurs
    Pract    . 2004;18(2):87-94
  • Lee, S. Back, Anthony L, Block, Susan D.and Stewart, Susan K. Enhancing Physician-Patient Communication Hematology. 2002;464-483 Available at: www.asheducationbook.org/cgi/content/abstract/2002/1/464
  • Lown, B, M.D. The Lost Art of Healing: Practicing Compassion in Medicine. Ballantine Books. 1999;
    First Ball edition. Available at: www.irmc.org/body.cfm?id=357
  • Martin, Randolph P. President’s message an “A” and four “C”s American Society of Echocardiography. 2003;16:7.
  • Meier DE, Back AL, Morrison RS.The inner life of physicians and care of the seriously ill. JAMA. 2003;286(23):3007-14
  • Spiro H. What is empathy and can it be taught? Annals of Internal Medicine. 1992;116(10):843-6
  • Squier RW. A model of empathic understanding and adherence to treatment regimens in practitioner-patient
    relationships. Soc Sci Med. 1990;30(3):325-39
  • Skotko B. Mothers of Children With Down Syndrome Reflect on Their Postnatal Support. Pediatrics. 2005;115(1):64-77 Available at: http://pedatrics.aappublications.org
  • Wessel, Morris A. The Role of the Primary Pediatrician When a Child Dies Arch Pediatr Adolesc Med. 1998;152:837-838 Available at: http://archpedi.ama-assn.org/cgi/content/full/152/9/837
  • Zinn W. The empathic physician. Archives of Internal Medicine. 1993;153(3):306-12
    Available at: http://archinte.ama-assn.org/cgi/content/abstract/153/3/306

    Articles from the Internet
  • Listen to the patient... Real Health Daily Dose - April 4, 2003.
    Available at: www.realhealthnews.com/dailydose/dd200304/dd20030404b.html
  • Teaching Doctors to Talk - Medical Breakthroughs - Reported by Ivanhoe - January 27, 2003.
    Available at: www.ivanhoe.com/channels/p_channelstory.cfm?storyid=5276
  • An Inside Look at the Role of a Pediatric Oncology Nurse Practitioner -By Susan Wessllng, On Call Magazine - June/July, 2004. Available at: www.medicalhomeinfo.org/

Reports/Documents
Children's Compassionate Care Act 2003 - In the Senate of the United States September 17, 2003 - A Bill to improve the palliative and end-of-life care provided to children with life-threatening conditions, and for other purposes. Available at: www.theorator.com/bills108/s1629.html

Compassionate Care in the ICU - Practitioners witness death on a regular basis in the intensive care unit. For that reason, one might think that they would be comfortable talking with patients and families about end-of-life issues. Ironically, this is not the case. The program features interviews with six thought leaders in compassionate care.
Available at: www.webcaststation.com/Professional.htm

Defining the Patient-Physician Relationship for the 21st Century
This document reflects the conferees’ beliefs about what constitutes an ideal patient physician relationship. It specifically does not address barriers to reaching that ideal or strategies for overcoming those barriers.
That remains the continuing task for all of us.
Available at: www.patient-physician.com/docs/PatientPhysician.pdf

Culturally Effective Care

Periodicals/Articles

  • Anderson PP. Issues in serving culturally diverse families of young children with disabilities. Early Child Development and Care. 1989;50:167-188
  • Atkin K. Health, illness, disability and Black minorities: a speculative critique of pre- sent day discourse. Disability, Handicap & Society. 1991;6:37-47
  • Beach MC, Price EG, Gary TL, et al. Cultural competence: A systematic review of health care provider educational interventions. Medical Care. 2005;43(4):356-373
  • Becerra R, lnglehart A. Folk medicine use: diverse populations in a metropolitan area. Social Work in Health Care. 1995;21:37-51
  • Chan S. Families with Asian roots. In: Lynch BW, Hanson MJ, eds. Developing Cross-Cultural Competence: A Guide For Working With Young Children and Their Families.
    Baltimore, MD: Paul H. Brookes; 1992: 181-257
  • Chao CM. The inner heart: therapy with Southeast Asian families. In: Vargas LA, Koss-Chioino JD, eds. Working with cultures: Psychotherapeutic Interventions With
    Ethnic Minority Children and Adolescents. San Francisco: Jossey-Bass; 157-181
  • Dulan JR, Blacher J. African American families, religion, and disability: A conceptual framework. Mental Retardation. 1995;33:226-238
  • Dunn AM. Culture competence and the primary care provider. Journal of Pediatric Health Care. 2002;16:105-111
  • D'Avanzo CE. Bridging the cultural gap with Southeast Asians. MCN. 1992;17:204-208
  • Flores G, Laws MB, Mayo SJ, et al. Errors in medical interpretation and their potential clinical consequences in pediatric encounters. Pediatrics. 2003;111:6-14
  • Garret MT, Myers IE. The rule of opposites: A paradigm for counseling Native Americans.
  • Journal of Multicultural Counseling and Development. 1996;24:89-104
  • Groce NE, Zola IK. Multiculturalism, chronic illness, and disability. Pediatrics. 1993;91:1048-1055
  • Hampers L, Cha S, Gutglass DJ, Binns HJ, Krug SE. Language barriers and resource utilization in a pediatric
    emergency department. Pediatrics. 1999;103:1253-1256
  • Harrison DF, Wodarski JS, Thyer BA. Cultural Diversity and Social Work Practice. Springfield, IL: Charles
    Thomas; 1992:981
  • Harry B. Parental visions of "una vida nor- mal/normal life": Cultural variations on a theme. In: LH Meyer,
    HS Park, Grenot-Scheyer M, 1S Schwartz, Harry B, eds. Making Friends. Baltimore, MD: Paul H. Brookes; 47-62
  • Harry B, Kalyanpur M. Cultural under-pinnings of special education: Implications for professional interactions
    with culturally diverse families. Disability & Society. 1994;9:145-165
  • Heller T, Markwardt R, Rowitz L, Farber B. Adaptation of Hispanic families to a member with mental retardation.
    American Journal on Mental Retardation    . 1994;99:289-300
  • Hmong Family. Hmong family prevents forced surgery on son. Omaha World-Herald. I99I;16
  • Hughes S. Serving culturally diverse families of infants and toddlers with disabilities. Infant-Toddler Intervention. 1992;2:169-177
  • Joe JR, Malach RS. Families with Native American roots. In: Lynch EW, Hanson MJ, eds. Developing
    Cross-Cultural Competence. Baltimore, MD: Paul H. Brookes; 127-164
  • Kemp C. Cambodian refugee health care beliefs and practices. Journal of Community Mental Health Nursing. 1985;2:41-52
  • Krajewski-Jarnie E. Folk-healing among Mexican-American families as a consideration in the delivery of child welfare and child health care services. Child Welfare. 1991;70:157-167
  • Lowenthal B. Training early interventionists to work with culturally diverse families. Infant-Toddler Intervention. 1996;6:145-152
  • McCormack GL. Culture and communication in the treatment planning for occupation al therapy with
    minority patients. Occupational Therapy in Health Care. 1987;49:17-36
  • McCubbin IL, Thompson EA, Thompson AI, McCubbin MA, Kaston AJ. Culture, ethnicity, and the family: Critical factors in childhood chronic illnesses and disabilities. Pediatrics. 1993;91:1063-1069
  • Risser A, Mazur L. Use of folk remedies in a Hispanic population. Archives of Pediatrics and Adolescent Medicine. 1995;149:978. Available at: http://archpedi.ama-assn.org/cgi/reprint/157/4/393.pdf
  • Satcher D. Our commitment to eliminate racial and ethnic health disparities. Yale Journal of Health Policy, Law and Ethics, 2001. Available at: www.yale.edu/yjhple/volume_1/pdf/001%20(satcher).pdf
  • Shields, M K M.P.A., and Behrman, R E, M.D.Children of Immigrant Families: Analysis and Recommendations The Future of Children. 2004;14(2) Available at: www.futureofchildren.org/usr_doc/Children_of_Immigrant_Families.pdf
  • Shenkman E, Vogel B, Brooks R, Wegener DH, Naff R. Race and ethnicity and the identification of special needs children. Health Care Financing Review. 2001;23:35-51. Available at: www.cms.hhs.gov/review/01winter/shenkman.pdf
  • Sontag JC, Schacht R. Family diversity and patterns of services utilization in early intervention. Journal of Early Intervention. 1993;17:431-444. Available at: http://alliedhealth.lsuhsc.edu/jei/
    Stevens G, Mistry R, Zuckerman B, et al. The parent-provider relationship: Does race/ethnicity concordance or discordance influence parent reports of the receipt of high quality basic pediatric preventive services? Journal of Urban Health: Bulletin of the New York Academy of Medicine. 2005;82(4):560-574
  • Tom KS. Echoes from old China. Honolulu: University of Hawaii Press. 1989
  • Willis W. Families with African-American roots. In: Lynch EW, Hansen MJ, eds. Developing Cross-Cultural Competence. Baltimore, MD: Paul H Brookes; 1992:121-150
  • Yu SM, Nyman RM, Kogan MD, et al. Parent's Language of Interview and Access to Care for Children with Special Health Care Needs. Ambulatory Pediatrics. 2004;4(2):181-187 Available at: http://ampe.allenpress.com/pdfserv/10.1367/A03-094R.1
  • Yu SM, Huang ZJ, Schwalber RH, et al. Parental awareness of health and community resources among immigrant families. Maternal and Child Health Journal. 2005;9(1):27-34
  • Zhihuan J, Yu SM, Ledsky R. Health status and health service access and use among children in U.S. immigrant families. American Journal of Public Health. 2006;96(4):634-640. Abstract available at: www.ajph.org/cgi/content/abstract/96/4/634
Policy Statements
  • American Academy of Pediatrics; Committee on Pediatric Workforce. Culturally effective pediatric care: education and training issues (RE9753). Pediatrics. 1999;103(1):167-170
    Available at: www.aap.org/policy/re9753.html
  • American Academy of Pediatrics; Committee on Pediatric Workforce. Ensuring Culturally Effective Pediatric Care: Implications for Education and Health Policy. 2004;114 (6)::1677-1685
    Available at: http://pediatrics.aappublications.org/cgi/content/full/114/6/1677
Reports/Documents
  • A Practical Guide for Implementing the Recommended National Standards for Culturally and Linguistically
    Appropriate Services in Health Care. Office of Minority Health, U.S. Department of Health and Human Services; 2001.
    Available at: www.omhrc.gov/clas/guide2a.asp
  • Assessment of the Total Benefits and Cost of Implementing Executive Order No 13116: Improving Access to Services for Persons with Limited English Proficiency,
    U.S. Office of Management and Budget Report to Congress; 2002. Available at: www.whitehouse.gov/omb/inforeg/regpol-reports_congress.html
  • Shone LP, Dick AW, Klein JD, et al. Reduction in racial and ethnic disparities after enrollment in the State Children's Health Insurance Program. Pediatrics Electronic Pages.
    2005;115(6):e697-e705 Abstract available at http://pediatrics.aappublications.org/cgi/content/abstract/115/6/e697
  • Swabey L, Thiel de Bocanegra H, Gany F, and Morrison R. An Introduction to Medical Interpreting: A Trainer's Manual. NY Task Force on Immigrant Health, NY University School
    of Medicine, 1997. Contact New York Task Force on Immigrant Health at 2-2-263-8783.
  • Torres B. Best Practice Recommendations for Hospital-Based Interpreter Services. Massachusetts Department of Public Health, Office of Minority Health, 2001.
    Available at: www.mass.gov/dph/omh/interp/interpreter.htm
  • Durham M, Madansky D, Lowell M, et al. Establishing Interpreter Services in Health Care Settings. Amherst, MA: Diversity Resources; 2001. Contact Diversity Resources at 1-800-865-5549.
  • Models for the Provision of Language Access in Health Care Settings. The National Council on Interpreting in Healthcare Working Papers Series; 2002. Available at: www.ncihc.org
  • Youdelman M, Perkins J. Providing Language Interpretation Services in Health Care Setting: Examples from the Field. The Commonwealth Fund; 2002. Available at: www.cmwf.org
  • The Role of the Health Care Interpreter: An Evolving Dialogue. The National Council on Interpreting in Healthcare Working Papers Series; 2001. Available at: www.ncihc.org
  • The Terminology of Health Care Interpreting: Glossary of Terms. The National Council on Interpreting in Healthcare Working Papers Series, Volume 3; 2001. Available at: www.ncihc.org
  • Bridging the Language Gap: How to Meet the Need for Interpreters in Minnesota, Interpreter Standards Advisory Committee. University of Minnesota and the Minnesota State Colleges and Universities Systems; 1998. Available at: www.cce.umn.edu/creditcourses/pti/
  • 2002 National Survey of Latinos
    The Kaiser Foundation conducted a survey of Latino communities which noted that three in 10 Latinos cite communication problems with providers due to language barriers - including 12% who say this has been a major problem for them in the past year. The survey indicates that 18% of Latinos also have difficulty getting care because of their race or ethnic background. More than 20% of respondents said they have problems paying medical bills, and one-fifth have delayed seeking care due to costs.
    Available at: www.kff.org/kaiserpolls/20021217a-index.cfm
  • National Survey of Physicians Part I: Doctors on Disparities in Medical Care " Selected findings from the Kaiser Family Foundation’s forthcoming National Survey of Physicians reveal that most physicians are aware of racial disparities in medical treatment for specific conditions, but they don’t believe it is a widespread problem." Kaiser Family Foundation, March 2002.
    Available at: www.kff.org/minorityhealth/20020321a-index.cfm
  • Youdelman M, Perkins J. Providing Language Interpretation Services in Health Care Settings: Examples from the Field. Published by The Commonwealth Fund; 2002. (#541)
    Available at: www.cmwf.org/programs/minority/youdelman_languageinterp_541.pdf
  • Reducing Health Disparities Through a Focus on Communities " The report presents evidence from research and practice of the key role that neighborhood factors play in determining health outcomes and explores the relationship between the communities in which people live and their health." PolicyLink, November 2002.
    Available at: www.policylink.org/Research/HealthDisparities/
  • Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care " Report from the Institute of Medicine, March 2002, supporting the long-held perception that minorities tend to receive lower-quality health care than whites, even when insurance status, income, age and severity of conditions are comparable. "
    Available at: www4.nationalacademies.org/onpi/webextra.nsf/web/minority?OpenDocument

Family-Centered Care

Policy Statements

  • American Academy of Pediatrics, Committee on Hospital Care Family-centered care and the pediatrician's role. Pediatrics. 2003;112(3):691-696
    Available at: www.aap.org/policy/s050139.html
  • American Academy of Pediatrics, Committee on Children With Disabilities. Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability (RE0049). Pediatrics. 2001;107(3):598-601
    Available at: www.aap.org/policy/re0049.html
  • American Academy of Pediatrics, Committee on Children With Disabilities. Role of the pediatrician in family-centered early intervention services (RE0037). Pediatrics. 2001;107(5):1155-1157
    Available at: www.aap.org/policy/re0037.html
  • American Academy of Pediatrics, Committee on Early Childhood and Adoption, and Dependent Care. The pediatrician's role in family support programs. Pediatrics. 2001;107(1):195-197
    Available at: www.aap.org/policy/re0022.html
Periodicals/Articles
  • Ahmann E. Family-centered care: shifting orientation. Pediatric Nursing. 1994;20-2:113-133
  • Arango P, Bishop KK, Taylor MS. Partnership at work: lessons learned from programs and practices of families, professionals and communities. Partnerships for Change. 1997. (To order, call 802/656-8800).
  • Eckle N, MacLean S. Assessment of family-centered care policies and practices for pediatric patients in nine US emergency departments. Journal of Emergency Nursing. 2001;27:238-245.
  • Gill KM. Nurses’ attitudes toward parent participation: personal and professional characteristics. CHC. 1987;15-3:149-151
  • Hanson JL, Johnson BH, Jeppson ES, Thomas J, & Hall JH. Hospitals Moving Forward with Family-Centered Care. Institute for Family-Centered Care. 1994 (To order, call 301/652-0281).
  • Hostler SL. Family-centered care. Pediatrics Clinics of North America. 1991;38-6:1545-1560
  • Johnson BH, Webster PD, et al, eds. Collaborative Design Planning. Bethesda, MD: The Institute for Family-Centered Care; 1999
  • Johnson BH, Webster PD, et al, eds. Developing Family-Centered Vision, Mission and Philosophy of Care Statements. Bethesda, MD: The Institute for Family-Centered Care; 1999
  • Nelson CS, Higman SM, Sia C, McFarlane E, Fuddy L and Duggan AK. Medical Homes for At-Risk Children: Parental Reports of Clinician-Parent Relationships, Anticipatory Guidance, and Behavior Changes Pediatrics. 2005;115:48-56 Available at: http://pediatrics.aappublications.org/cgi/content/full/115/1/48
  • Skotko B. Mothers of Children With Down Syndrome Reflect on Their Postnatal Support. Pediatrics. 2005;115(1):64-77
    Available at: http://pedatrics.aappublications.org
Reports/Documents
  • Kannel S, Perry M. Child Development and Medicaid: Attitudes of Mothers with Young Children Enrolled in Medicaid. Published by the Commonwealth Fund, March 2001. (#448).
    Available at: www.cmwf.org/programs/child/kannel_medfocusgroups_448.pdf
  • The Grandparent's and Other Relative Caregiver's Guide to Raising Children with Disabilities- This Children's Defense Fund guide for kinship caregivers and others answers questions about available federal programs, eligibility requirements and how to enroll children. To order a free copy call 202-662-3568 or e-mail: childwelfare@childrensdefense.org.
    Available at: www.childrensdefense.org/pdf/healthyties_cg.pdf
  • O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, and Wood E. The Health and Well-Being of Caregivers of Children With Cerebral Palsy. Pediatrics 2005;115 e626-e636 Abstract Available at: http://pediatrics.aappublications.org/cgi/content/abstract/115/6/e626?etoc
  • Family Cost-Sharing for CSHCN in Employer-Based Managed Care Plans 1999-2001 Mathematica Policy Research, Inc, February 2004. Available at: www.mathematica-mpr.com
  • Patterns of Insurance Coverage Within Families with Children
    Using the 1996 Medical Expenditure Panel Survey, this article examines patterns of health insurance within families with children, determining that 3.2 million families are uninsured and another 4.5 million families are only partially insured. January 2001. Available at: www.cmwf.org/publications/publications_show.htm?doc_id=221511
  • Bethell C, et al. Partnering with Parents to Promote the Healthy Development of Young Children Enrolled in Medicaid. Published by the Commonwealth Fund. September 2002. (#570).
    Available at: www.cmwf.org/programs/child/bethell_partnering_570.pdf
Quality of Care
  • The State of Health Care Quality 2003. This report shows that the nation’s health care system is riddled with "quality gaps" that prevent millions of Americans from receiving "best practice"care. NCQA, September 2003.
    Available at: www.ncqa.org/Communications/News/sohc2003.htm
  • Committee on Evaluation of Children's Health, National Research Council. Children's Health, the Nation's Wealth: Assessing and Improving Child Health. June 24, 2004. This report provides a detailed examination of the information about children's health that is needed to help policy makers and program providers at the federal, state, and local levels.
    Available at: www.iom.edu/report.asp?id=21082
  • Committee on Identifying Priority Areas for Quality Improvement. Priority Areas for National Action: Transforming Health Care Quality. In this report, the committee recommends a set of 20 priority areas that the U.S. Department of Health and Human Services (DHHS) and other groups in the public and private sectors should focus on to improve the quality of health care delivered to all Americans. National Academy Press, March 2003.
    Available at: www.nap.edu/books/0309085438/html/
  • Committee on Rapid Advance Demonstration Projects: Health Care Finance and Delivery Systems. Fostering Rapid Advances in Health Care: Learning from System Demonstrations. Focuses on redesigning primary care and care for those with chronic conditions, creating an information and communications technology infrastructure, making health insurance coverage available and affordable at the state level, and reforming malpractice to make it patient-centered, safety focused and non judicial. National Academy Press, March 2002.
    Available at: www.nap.edu/books/0309087074/html/
  • Committee on Quality of Health Care in America. To Err is Human: Building a Safer Health System. This document is the first in a series of publications from the Quality of Health Care in America. Institute of Medicine, 1999. Available at: www.nap.edu/books/0309068371/html/
  • Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Provides a detailed review of literature on the quality of care. National Academy Press, March 2001. Available at: www.nap.edu/books/0309072808/html/
  • Cubanski J and Kline J. Improving Health Care Quality: Can Federal Efforts Lead the Way?
    This issue brief addresses proposals to improve health care quality. Commonwealth Fund, April 2002.
  • Davis K. The Quality of American Health: Can We Do More? President's Message Report on current state of the quality of care debate. Commonwealth Fund, April 2000.
  • Davis K, Schoenbaum SC, Collins KS, Tenney K, Hughes DL, and Audet AJ. Room for Improvement: Patients Report on the Quality of Their Health Care. Report reveals that an e stimated 8.1 million households have experienced a medical or prescription drug error that turned out to be very serious. The Commonwealth Fund, April 2002.
  • Leatherman S, and McCarthy D. Quality of Health Care for Children and Adolescents: A Chartbook. Commonwealth Fund. April 2004.
  • Leape LL, Berwick DM. Five years after To Err Is Human: What have we learned? Journal of the American Medical Association. 2005 May 18;293(19):2384-2390
  • McGlynn EA, Asch SM, Adams J, Keesey J, Hicks J, DeCristofaro A and Kerr EA. The Quality of Health Care Delivered to Adults in the United States. New England Journal of Medicine, June 2003.
    Available at: http://content.nejm.org
  • Minkovitz CS, Hughart N, Strobino D. 2003. A practice-based intervention to enhance quality of care in the
    first 3 years of life: The Healthy Steps for Young Children Program. JAMA, The Journal of the American
    Medical Association 17(23):3081-3091.
  • Zuckerman B, Stevens G, Inkelas M, et al. 2004. Prevalence and correlates of high-quality basic pediatric preventive care. Pediatrics 114(6):1522-1529.
  • The National Healthcare Quality Report. The report includes a broad set of performance measures that can
    serve as baseline views of the quality of health care. The report presents data on the quality of services for
    seven clinical conditions, including cancer, diabetes, end-stage renal disease, heart disease, HIV and AIDS,
    mental health, and respiratory disease. Agency for Healthcare Research and Quality (AHRQ), December 2003.
    Available at: www.qualitytools.ahrq.gov/qualityreport/download_report.aspx
  • Report to the Congress: Applying Quality Improvement Standards in Medicare. This report focuses on quality improvement standards and assumes that quality assurance standards will remain in force. Medicare
    Payment Advisory Commission (MedPAC), January 2002.
    Available at: www.medpac.gov/publications/congressional_reports/jan2002_QualityImprovement.pdf

    Other Publications and Journal Article from the Commonwealth Fund are
    available at: http://www.cmwf.org/publications/publications_list.htm?attrib_id=11997&portal=yes&attrib_filter=1

Healthy People 2010

Healthy People 2010 represents an extensive document designed to achieve family-centered, culturally-competent, comprehensive, and coordinated systems of services for all children and youth with special health needs,in every community, by the year 2010.

President's New Freedom Initiative
Fulfilling America's Promise to Americans with Disabilities

The New Freedom Initiative is a comprehensive plan that represents an important step in working to ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, make choices about their daily lives and participate fully in community
life. The Initiative's goals are to:

  • Increase access to assistive and universally designed technologies;
  • Expand educational opportunities;
  • Promote home ownership;
  • Integrate Americans with disabilities into the workforce;
  • Expand transportation options; and
  • Promote full access to community life

Available at: www.hhs.gov/newfreedom

DELIVERING ON THE PROMISE - REPORT OF FEDERAL AGENCIES' ACTIONS TO
ELIMINATE BARRIERS AND PROMOTE COMMUNITY INTEGRATION
Available at: www.hhs.gov/newfreedom/final/

National Survey of Children with Special Health Care Needs

http://www.medicalhomeinfo.org/publications/bibliography.html

Last Updated March 23, 2007