General Information on Transition
Transition for specific diagnoses
Adult health care information for specific diagnoses

General Information to Assist in a Health Care Visit with an Adult with Developmental Disability or Chronic Childhood-Onset Conditions:

Communication

• Patients with disabilities and complex communication needs.  Link to article
  • This article describes the varied communication profiles a practitioner is likely to encounter in patients with disabilities and the various types of augmentative and alternative forms of communication that might be used in such circumstances.

Information on Transition for Specific Diagnoses and Issues:

ADHD

• Treatment Strategies for Attention Deficit Hyperactivity Disorder (ADHD): From Childhood to Adolescence and Through the Transition Years. Jefferson B. Prince, MD; Peter S. Jensen, MD; Amy Vierhile, RN, MS, C-PNP; MedScape Educational Program, Oct 2006. Link

Autism Spectrum Disorders

• Clinical management of adolescents with autism.  Deokar AM, Huff MB, Omar HA. (2008) Pediatr Clin N Amer. 55:1147-1157.
• Life Journey through Autism: A guide for transition to adulthood. Organization for Autism Research, the Southwest Autism Research and Resource Center, and Danya International, Inc. (2006) www.researchautism.org/resources/reading/documents/TransitionGuide.pdf 

Congenital Heart Disease

• Review article: Transition of care from paediatric to adult services in cardiology.  Hudsmith LE, Thorne SA.  Arch Dis Child. 2007; 92?927-930.

Fragile X:

• THE ADOLESCENT & ADULT PROJECT - Smoothing the Transition to Successful Adulthood.  The National Fragile X Foundation.  Link to website.

HIV

• Transition from a pediatric HIV intramural clinical research program to adolescent and adult community-based care services: Assessing transition readiness.  Weiner L, Zobel M et al.  Soc Work Health Care. 2007; 46(1):1-19.

Organ Transplantation:

• Transition of cognitively delayed adolescent organ transplant recipients to adult care  Kaufman M.
  Pediatr Transplantation. 2006: 10: 413–417.  Link to abstract

Rheumatic Diseases:

• Transition of the adolescent patient with rheumatic disease: Issues to consider.  Tucker LB, Cabral DA.  Rhem Dis Clin North Am. 2007 Aug;33(3):661-672.

Sexuality:

• For Professionals:
  • Sexuality Issues and Gynecologic Care of Adolescents with Disabilities. Greydanus DE, Omar HA. Pediatr Clin N Am. 2008;55:1315-1335.
  • Sexuality of Children and Adolescents With Developmental Disabilities. Murphy NA, Elias ER.  The Council on Children With Disabilities. Pediatrics. 2006; 118: 398-403.
  • Sexuality in children and adolescents with disabilities.  Murphy NA, Young PC.  Devel Med Child Neurol. 2005; 47:640-644.
• For Families:
  • Sexuality: Your Sons and Daughters with Intellectual Disabilities.  By Karin Melberg Schwier and Dave Hingsburger, M.Ed.
  • Where Did I Come From? by Peter Mayle
  • What's Happening to Me?  by Peter Mayle

Spina Bifida:

• Improving Transition to Adulthood for Adolescents with Spina Bifida ; Nienke Dosa MD, MPH

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Information on Health Care for Adults with Specific Diagnoses:

Autism Spectrum Disorders:

• Adult outcome for children with autism.  Howlin P, Goode S et al.  (2004) Journal Child Psychol and Psychiatry.  45(2);212-229.

Cancer Survivors:

• Late Effects of Childhood Cancer Therapy.  Dickerman JD.  Pediatrics. 2007; 119(3):554-568.  Link
• Care of cancer survivors. Sunga AY, Eberl MM, et al.  Am Fam Physician. 2005;71:699-706,713-4.   Link
• Chronic health conditions in adult survivors of childhood cancer.  Oeffinger KC et al.  N Engl J Med. 2006:355(15):1572-1582.   Link
• Institute of Medicine - Childhood Cancer Survivorship: Improving Care and Quality of Life.  Link
• Longitudinal Cancer-related Health Care for Adult Survivors of Childhood Cancer.  Oeffinger KC.  Link
• Late Effects of Treatment for Cancer during Childhood and Adolescence.  Green DM.  Link
• Cardiovascular risk reduction in high risk populations. American Heart Association (AAP endorsed 2006) Link (Increased risk of accelerated atherosclerosis in post-cancer treatment survivors)
• Pregnancy Outcomes:
  • Pregnancy outcomes in female childhood and adolescent cancer survivors.  Mueller BA et al.  Arch Pediatr Adolesc Med. 2009;163(10):89-886.

Cerebral Palsy:

• The Adult with Cerebral Palsy. Rapp CE, Torres.  Arch Fam Med. 2000; 9:466-472.
• Health and well being of adults with cerebral palsy.  Liptak GS. Current Opin in Neurol. 2008;21(2):136-142. This article reviews what is known about the health and well being of adults with cerebral palsy.
• Cerebral palsy and aging. Haak P, Lenski M et al. Developmental Medicine & Child Neurology.
  Oct. 2009; 51(0):16-23. 
  

 

Cystic Fibrosis:

• Cystic Fibrosis Adult Care: Concensus Conference Report.  Chest. 2004  Marshall BC, Sufian B, et al. Link

Down Syndrome:

• Health care management for adults with Down syndrome.  Smith DS. Am Fam Physician. 2001 Sep 15;64(6):1031-8. Link to abstract  Link to article
• Health care concerns and guidelines for adults with Down syndrome.  van Allen MI et al.  Am J Med Genetics.  1999 Jun 25;89(2):100-10.  Link to abstract

Mental Retardation:

• Primary care of adults with mental retardation. Prater CD, Zylstra RG.  Am Fam Physician.  2006 Jun 15;73(12):2175-83. Link to abstract   Link to full article
• Mental retardation: What caregivers need to know.  Am Fam Physician.  2006. Link
• Concensus guidelines for primary care of adults with developmental disabilities.  Sullivan WF et al.  Can Fam Physician. 2006 Nov 1; 52(11):1410-1418. Link
• Aging with Mental Retardation: Increasing population of older adults with MR require health interventions and prevention strategies (review). Fisher K, Kettl P. Geriatrics. 60(4):26-9. Link
• Health Guidelines for Adults with an Intellectual Disability.  IASSID Publication. Link
• Health care decision-making by adults with mental retardation.  Cea CD, Fisher CB.  Mental Retardation. 2003. 41(2):78-87.
• Effective Communication
  • Top Ten Tips for Effective Consultation.  Perez W. Link
  • Clinical Communication in Intellectual Disability.  Thacker A.  Link

Phenylketonuria (PKU)

• Adolescence to Adulthood Health Focus - Phenylketonuria Link to word document

 

Spina Bifida:

• Health Care Issues for Adults with Spina Bifida

Sickle Cell Disease:

• Sickle cell disease.  Driscoll MC.  Pediatrics in Review.  28(7):259-268. 2007.

Turner Syndrome:

• Turner syndrome: Transition from pediatrics to adulthood. Rubin KR. Endocr Pract. 2008 Sep; 14(6):775-81.

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