The Challenges of Transitioning to Adult Care

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With advances in diagnosis and treatment since the 1950s, the majority of individuals with hydrocephalus are transitioning into adulthood. This transition comes with significant challenges: teens and young adults in our community face difficulty finding a neurologist or neurosurgeon willing to manage their care.

The medical community is now taking notice of the large disparity between child and adult care. Joseph H. Piatt Jr., MD is a member of HA’s medical advisory board and a pediatric neurosurgeon at A. I. duPont Hospital for Children in Wilmington, Delaware. Dr. Piatt recently published an article in the Journal of Neuroscience highlighting the issues of medical care in the adult hydrocephalus population, specifically adults who have spina bifida with hydrocephalus.

Dr. Piatt looked at admission rates, hospital costs, and complication rates for adult patients who have spina bifida with hydrocephalus. The data for the study was extracted from Nationwide Inpatient Sample (NIS). Dr. Piatt’s results showed an increasing trend in hospital admission rates and costs, emphasizing the frequent complications experienced by hydrocephalus patients and outlining why it is so important that they have access to proper long term care. Dr. Piatt also found alarming discrepancies between care in low-volume and high-volume hospitals. Low-volume hospitals had a greater number of hospital acquired conditions (HACs), such as surgical site infections, and deaths after surgery and a much lower number of discharges to home than high-volume hospitals. Dr. Piatt points out that high-volume, multi-disciplinary clinics have long been available to the pediatric population. Since the adult population who have spina bifida with hydrocephalus is increasing faster than the overall US population, Dr. Piatt suggests that the development of such clinics for adults is critical.

HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap. Friday and Saturday (February 17-18, 2017), HA is hosting the Hydrocephalus Association Transition Summit to discuss ways of improving the transition from pediatric to adult medical care for hydrocephalus patients. Topics will range from the needed systemic changes to and efforts of healthcare professional societies, patient advocacy organizations, health systems, payers, and governmental agencies to changes that can be made at a local level through the adoption of best practices. This will all culminate in a white paper delineating a national plan of action and setting measurable goals to be met within the 5-10 years.

For a link to Dr. Piatt’s article, please click here.

2 Comments for : The Challenges of Transitioning to Adult Care
    • Joseph Galatha
    • March 25, 2017

    I once posted here back around 1999; I am 49 years old and have had Hydrocephalus since 8 months. Only 3 revisions; 12 months, age 21, and age 24, and I am still living with a Ventriculoatrial shunt.

    I’m the exception to many rules, and have considered myself exceptional fortunate.

    However, when I started having difficulties (I believe stemmed from an infected tooth that went undiagnosed) the system did not want to let me back in. Even though I told doctors I had a shunt, the neurologists didn’t want to see me without proper referrals; neurosurgeons seemed to behave that as normal as I was, nothing was wrong.

    it’s almost as like CT scans supplanted any actual human caring.

    Things finally have taken a bad turn for me, and instead of the experience i had in 1988, where my neurosurgeon had me scheduled for surgery within weeks of my first complaints, I have now endured four months of being told to schedule office visits with doctors who (my opinion) regard me like I don’t need to be in their office.

    And now I’m suffering. Now I am being told by friends and family that there are noticible changes in my gait; that I slur my words (I’ve always been very quick and articulate) and that I”m speaking very slowly.

    I’m very disgusted, very angry, and I’m uncharacteristically scared.

    I feel like unleashing a tirade of profanity to tell you how I really feel (that’s my style) but I understand the forum rules.

    Something changed in our country over the last 50 years; and it’s not just who pays for the health care. The attitudes are different. This patient emphatically states that the human element is gone, only the money matters,

    and the next person who tells me that I am experiencing “anxiety” or “depression” when what I am actually trying to convey to them is a sense of indignant rage and panic to get them out of their chair before I’m crippled for what’s left of my life


    now you know my story.

    • Tim Harris
    • February 16, 2017

    What time? where? On line? if so, how do I access? Please advise. this notice is incomplete.

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