Literature DB >> 19841113

Who will care for me next? Transitioning to adulthood with hydrocephalus.

Tamara D Simon1, Sara Lamb, Nancy A Murphy, Bonnie Hom, Marion L Walker, Edward B Clark.   

Abstract

OBJECTIVES: Hydrocephalus is a prototypical chronic condition that follows children into adulthood. The objectives of this study were to (1) review how the health care needs of young adults with hydrocephalus are not being met, (2) estimate the numbers of adults with childhood-onset hydrocephalus, (3) describe a novel program to provide care for young adults with hydrocephalus and other chronic pediatric conditions, and (4) propose national strategies to promote successful hydrocephalus transition care.
RESULTS: Adults with hydrocephalus need continuous access to expert surgical and medical providers. Existing care models fail to meet this need. The number of young adults who have hydrocephalus, are aged 18 to 35 and need treatment in the United States is predicted to exceed 40000 annually within the next 2 decades. We are developing integrated teams of pediatric and adult medical and surgical specialists to provide continuous, coordinated, comprehensive care for individuals with hydrocephalus in a pediatric setting. This setting will train our future physician workforce on optimal transition care. Coordinated national efforts are also needed.
CONCLUSIONS: Providers need to implement appropriate management and transition care for individuals with hydrocephalus. We must work at local and national levels to transform the care model, improve the quality of health care delivery, and improve outcomes for young adults with hydrocephalus.

Entities:  

Mesh:

Year:  2009        PMID: 19841113      PMCID: PMC2895548          DOI: 10.1542/peds.2008-3834

Source DB:  PubMed          Journal:  Pediatrics        ISSN: 0031-4005            Impact factor:   7.124


  59 in total

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2.  The electronic disability record: purpose, parameters, and model use case.

Authors:  Bengisu Tulu; Thomas A Horan
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3.  Improving transition from pediatric to adult cystic fibrosis care: lessons from a national survey of current practices.

Authors:  Suzanne Elizabeth McLaughlin; Marie Diener-West; Alka Indurkhya; Haya Rubin; Rebekah Heckmann; Michael Patrick Boyle
Journal:  Pediatrics       Date:  2008-05       Impact factor: 7.124

4.  Issues of medical management in adults with spina bifida.

Authors:  G V McDonnell; J P McCann
Journal:  Childs Nerv Syst       Date:  2000-04       Impact factor: 1.475

5.  Hydrocephalus and the reproductive health of women: the medical implications of maternal shunt dependency in 70 women and 138 pregnancies.

Authors:  A M Liakos; N K Bradley; G Magram; C Muszynski
Journal:  Neurol Res       Date:  2000-01       Impact factor: 2.448

6.  Why do adults with spina bifida and hydrocephalus die? A clinic-based study.

Authors:  G V McDonnell; J P McCann
Journal:  Eur J Pediatr Surg       Date:  2000-12       Impact factor: 2.191

7.  Priorities for hydrocephalus research: report from a National Institutes of Health-sponsored workshop.

Authors:  Michael A Williams; James P McAllister; Marion L Walker; Dory A Kranz; Marvin Bergsneider; Marc R Del Bigio; Laurel Fleming; David M Frim; Katrina Gwinn; John R W Kestle; Mark G Luciano; Joseph R Madsen; Mary Lou Oster-Granite; Giovanna Spinella
Journal:  J Neurosurg       Date:  2007-11       Impact factor: 5.115

8.  Hospital care for children with hydrocephalus in the United States: utilization, charges, comorbidities, and deaths.

Authors:  Tamara D Simon; Jay Riva-Cambrin; Raj Srivastava; Susan L Bratton; J Michael Dean; John R W Kestle
Journal:  J Neurosurg Pediatr       Date:  2008-02       Impact factor: 2.375

9.  A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs.

Authors:  John B Gordon; Holly H Colby; Tera Bartelt; Debra Jablonski; Mary L Krauthoefer; Peter Havens
Journal:  Arch Pediatr Adolesc Med       Date:  2007-10

10.  Practice-linked online personal health records for type 2 diabetes mellitus: a randomized controlled trial.

Authors:  Richard W Grant; Jonathan S Wald; Jeffrey L Schnipper; Tejal K Gandhi; Eric G Poon; E John Orav; Deborah H Williams; Lynn A Volk; Blackford Middleton
Journal:  Arch Intern Med       Date:  2008-09-08
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  13 in total

1.  Can the Medical Home eliminate racial and ethnic disparities for transition services among Youth with Special Health Care Needs?

Authors:  Nicole E Richmond; Tri Tran; Susan Berry
Journal:  Matern Child Health J       Date:  2012-05

2.  A Systematic Review of Transition Readiness in Youth with Chronic Disease.

Authors:  Maureen Varty; Lori L Popejoy
Journal:  West J Nurs Res       Date:  2019-09-18       Impact factor: 1.967

3.  Adults with chronic health conditions originating in childhood: inpatient experience in children's hospitals.

Authors:  Denise M Goodman; Matthew Hall; Amanda Levin; R Scott Watson; Roberta G Williams; Samir S Shah; Anthony D Slonim
Journal:  Pediatrics       Date:  2011-06-27       Impact factor: 7.124

4.  Living with the cerebellar mutism syndrome: long-term challenges of the diagnosis.

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Journal:  Acta Neurochir (Wien)       Date:  2020-07-03       Impact factor: 2.216

Review 5.  Pediatric hospital medicine and children with medical complexity: past, present, and future.

Authors:  Tamara D Simon; Sanjay Mahant; Eyal Cohen
Journal:  Curr Probl Pediatr Adolesc Health Care       Date:  2012-05

Review 6.  Children with medical complexity: an emerging population for clinical and research initiatives.

Authors:  Eyal Cohen; Dennis Z Kuo; Rishi Agrawal; Jay G Berry; Santi K M Bhagat; Tamara D Simon; Rajendu Srivastava
Journal:  Pediatrics       Date:  2011-02-21       Impact factor: 7.124

7.  Adult long-term outcome of patients after congenital hydrocephalus shunt therapy.

Authors:  M Preuss; A Kutscher; R Wachowiak; A Merkenschlager; M K Bernhard; M Reiss-Zimmermann; J Meixensberger; U Nestler
Journal:  Childs Nerv Syst       Date:  2014-10-17       Impact factor: 1.475

8.  Skin Ulcers and Mortality Among Adolescents and Young Adults With Spina Bifida in South Carolina During 2000-2010.

Authors:  Bo Cai; Suzanne McDermott; Yinding Wang; Julie A Royer; Joshua R Mann; James W Hardin; Orgul Ozturk; Lijing Ouyang
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9.  Parents' perception of self-advocacy of children with myositis: an anonymous online survey.

Authors:  James D Katz; Gulnara Mamyrova; Shilpi Agarwal; Olcay Y Jones; Harriet Bollar; Adam M Huber; Lisa G Rider; Patience H White
Journal:  Pediatr Rheumatol Online J       Date:  2011-06-07       Impact factor: 3.054

10.  Transitioning in hydrocephalus: Current practices in Canadian Paediatric Neurosurgery centres.

Authors:  Navneet Singh; Patrick J McDonald
Journal:  Paediatr Child Health       Date:  2018-03-19       Impact factor: 2.253

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